6/24/2008 3:26:00 PM
Welcome Everyone to Kayleigh's Story
Hello Everyone, Aimee and I wanted to put something together for all of those we send updates to and for those who are just joining us and want to join the journey of Kayleigh's story. Our first baby update was sent out April, 21st 2008 but it all began on December 18 at a hotel at Disney World in Orlando Florida. Aimee told me not to go in to details but a long story short, we were going to bring home a very nice souvenire. Little did we know that we were about to experience the world's most scary and exciting roller coaster of our lives. From New Years when we received a positive pregnancy test to the beginning of April, everything was fantastic. We went to our normal Doctors visits and followed every single direction we were given to a "T". Everything was perfect as we imagined until Aimee went in to take an AFP exam. The AFP test tells us there is a chromosome issue, but doesn't tell us what chromosome issue it is. The AFP came back abnormal and the Ultra Sound showed our baby growing a couple weeks behind. We were devestated!!! "How could this be! We are good people, so why could this happen to us." Those were the words that we spoke for days. So, our next route was the get an amniocentesis done which is something we wish on no one. It involves a long needle and the possibility of really hurting
the baby. Aimee cramped really bad afterwards and was in serious pain. The test is suppose to clarify which chromosome issue our little baby has. So from there, all there was to do was wait to hear the results and waiting was hell!
6/24/2008 6:39:00 PM
April, 21st 2008 - Baby Update Hey everyone. We want to thank everyone again for all of their kind words, thoughts, & prayers. They have meant the world to us! We heard back from the doctor late this afternoon & we are once again in shock. For now at least, it is a happy shock. It appears that the initial results from the amniocentesis came back normal. That means that it is 98% accurate that the baby will not have Down's Syndrome, Trisomy 13 or 18, X or Y. The full results won't be back for 10-14 days but we are happy with what we have heard so far. Of course, there is still no explanation for why the baby is growing 2-3 weeks behind schedule or if there may be a heart or bowel defect. We are getting scheduled for a fetal echocardiogram for possibly late this week. The cardiologist will examine the baby's heart more in depth & hopefully we can get some more answers after that. We will then have our routine doctor visit & a follow up level 2 ultrasound on May 8th. We are praying that the baby will have grown a lot more by then. When we had the ultrasound last week the doctor mentioned that I had a thick placenta so I asked a few more questions about that today. It seems that the baby may not be getting the nutrients that it needs because the placenta is so thick. If that is the case the baby may come much sooner than expected if it goes into any kind of distress & will have a decent chance to live on the outside or if I start to become affected. Again, we are praying that it doesn't have to come down to that either. We are hoping that this baby will just be as stubborn as I am & will be healthy & happy! LOL We are certainly not out of the woods yet & feel that all of the prayers have brought us a miracle. Please continue to keep us in your thoughts & prayers & we will continue to update everyone as we know more. Oh, one last thing. We were able to find out the sex of the baby. We were so thankful & excited by the news that we had to call the doctor back to find out what we were having. As it turns out, we will be welcoming a little girl into our family. Her name will be Kayleigh Anne Freeman. Kaye is Adam's mother's middle name, Leigh is my middle name, & Ann is my mother's middle name. As you can see we dropped the A from Patti's name & added it to my mom's middle name. So, it has meaning with a few modifications. LOL Thank you all again for everything that you have done for us. We are so blessed to have all of you in our lives!
6/24/2008 6:40:00 PM
May 8th, 2008 Hello Everyone,
Well, I don't know where to begin. Today was not a good day for Aimee and I. We went for our follow up appointment with the level 2 ultra sound Doctors to check the progress of little Kayleigh. It turns out that in the past three weeks, she has only grown two of those weeks. So instead of being 3 weeks behind, she is now 4 weeks behind. We are happy to see that she is still growing and her heart is beating strong. She must be a fighter like her Daddy. On a rough note, the doctor noticed that the level of amniotic fluid was very low and there isn't much room for her in the placenta. The placenta has also torn a little off the uterine wall meaning signs that the body could be rejecting the birth process because of some problem that no one can answer for us yet. So, Aimee had to draw blood once again to have a series of tests to maybe find out what the issue is that is causing little Kayleigh all these problems. We won't find out for a week the results, but from the Doctors mouth...time is drifting away in the wrong direction and they don't think she will survive this fight much longer. Aimee and I are only praying that the Doctor is wrong once again. Our Doctor was very confident before that it was a chromosome issue, heart issue and bowel issue, but the tests proved otherwise. Now she thinks the odds are not in our favor because of how far behind she is getting and the lack of amniotic fluid. Aimee and I were hoping that Kayleigh would grow big enough to live outside the womb early and get the medical treatment/nutrients she needs, but the Doctor doesn't think Kayleigh is going to make it to that point. We are trying to keep a fighting spirit anyways and need your prayers more than ever before. Our next step is to go to our now "weekly" appointments to
either find out if Kayleigh has made it another week closer to getting out of there or if she just wasn't strong enough to hold on. We appreciate all of your thoughts and prayers so far and we only ask that you keep them coming. I feel with the help of all your prayers so far, she made it through this so far. We can only hope she continues to fight. Thank you all so very much!
6/24/2008 6:41:00 PM
Letter for Second Opinion I sent this out to 5 perinatologist that had emails online for a second opinion.
I hope that you don't mind me emailing you as I came across your email address on this website....http://www.smfm.org/index.cfm?zone=search&nav=doctor. I would like to tell you about my situation & I am hoping that you have some advice or can see us ASAP. I am currently 21.6 weeks pregnant. I am being seen by Charlotte OB/GYN & a Maternal Fetal Medicine doctor at the Women's Institute. I went to my OB for my regular ultrasound 4 weeks ago. The tech told me that our baby was 1.5-2 weeks behind on growth but that everything looked fine otherwise. My midwife noticed our anxiety & scheduled a level 2 at the Women's Institute. We also had the AFP test done at that time. The results came back showing high risk for both Spina Bifida & Downs. We went to the level 2 appointment & our little girl was then measuring 3 weeks behind. The doctor told us that she thought there may be a bowel issue & a hole in the heart aside from the IUGR. So, we had an amnio & scheduled to see the pediatric cardiologist. Dr. Benske at Sanger didn't see anything wrong with the heart at that time but scheduled a 6 week follow up for 6/5/8 when Kayleigh would be bigger & he could see more. The amnio results came in & showed that there were no chromosome problems. So now we are left without cause. We went in for our routine checkup with the OB on Tuesday & they couldn't find the heartbeat. We thought that we had lost our Kayleigh. However, once they grabbed the ultrasound machine we were able to find a beating heart. Her rate was only 124 but she was sleeping. Today we went in for a follow up level 2 ultrasound. Everything still looked good with the baby. No problems that they could see with her except for the IUGR. In the last 3 weeks she has only grown 2 of them. I thought from our last appointment that any growth would be positive but that is not what we were told today. In addition, my amniotic fluid has drastically decreased. I am not sure what the level is as I didn't think to ask that question. Lastly, my placenta has detached a bit & has some old blood gathered. With all of these things together we were basically told that there are VERY high odds that Kayleigh won't survive. Maybe not even past a week. We are now scheduled to go to the OB every week to check the heartbeat. We were not offered anything that could help & were told flat out that there is nothing that we can do & I am tonight finding that there are in fact options. I also asked about bed rest & was told to not put my life on hold & to do what makes me feel good. My OB suggested that I have blood drawn for a TORCH titer which I did today. I had also seen research online that said that treatments were available if there were infections but when I asked this today I was told there are no remedies. I really hate to "complain" about my treatment but I feel certain that if a doctor told any of us that we would die we would get a second opinion. Unfortunately, I do not think my baby has very much time. I am not sure if I am in denial or if it is just intuition but I just don't feel that it is Kayleigh's time to go.
Please contact me ASAP if you know of ANYTHING that we could do, any doctor that we could see, or any advice. We are grasping at anything that we can. Thank you so much for your time.
6/24/2008 6:42:00 PM
May 9th, 2008
Hello Again Everyone, After our appointment yesterday, we got a lot of words of encouragement and success stories from Aimee's message board that she is apart of. Those mothers were so wonderful with all the nice things they had to say and the positive influence they left on us. We were both on a positive high that we decided to get a second opinion with another doctor. The Doctor was wonderful and so much more trusting than the others we had met with. We actually ended up getting in this afternoon to see the Doctor and unfortunately the news was not what we were hoping to hear. They also think that Kayleigh is not going to make it much longer.
We are going to still do everything we can to stay positive, but there is a probably less than 1% chance she will make it to a viable state. She is around 200 grams in weight and to be at a viable state, she has to be over 700 grams. A normal healthy baby will grow around 50-70 grams in a week and since Kayleigh's growth has slowed down, we may be lucky she grows 40 grams in a week. With a amniotic fluid level of 3.2 (which is considered "none" in their eyes. 9+ is average and 15+ is normal), Kayleigh is not producing enough fluid to survive an estimated 2-3 weeks, if that. With her growth state, that would mean Kayleigh would have to hang in there for 12-13 weeks before the Doctors could take her out. We can just only hope and pray that a miracle will keep her alive long enough. Right now, the only thing left to do is enjoy her while she is still alive, fight until the end and trust that God knows what he is doing. We are not quite sure what God's plan for Kayleigh is, but we hope that this experience has helped someone somewhere realize how precious life can be. No matter how horrible the odds are against you, fight hard and never give up until God says it is time. Thank you all so much for your prayers, as we need them more than ever to make this miracle happen. 6/24/2008 6:47:00 PM
May 21st, 2008 We went to see the MFM (Maternal Fetal Medicine - Specialist) doctor today & I have some updates. I think I will start with the less than good news first. They are now seeing some fluid all around Kayleigh's heart. (Pericardial Effusion) He did not see this before so he is concerned as to why it started. It could possibly mean that we are moving closer to an outcome that is not favorable. When the tech looked at things in the beginning she saw this as well but felt good about some other things that I will mention in a second. She said that she hates to give us a hope but she was feeling more positive. She did say that if the baby makes it to viability & delivery that this can be drained after. The big question is whether we will get to that point. So, on to the better news. Are you sitting down? She grew 2 weeks out of 2 weeks! She was 6oz two weeks ago (they told us 7oz that day) & now she is 9oz. In grams she was 192 & now 269. He said that this is good growth for a 2 week period. I am so thrilled that she grew the expected amount in the expected time for once. Last time it was 2 out of 3 weeks & now 2 out of 2. Seems like things might be getting better. The fluid has stayed about the same. There may possibly be a slight bit more. She found another small pocket that she didn't measure & Kayleigh's bladder was full. Woo hoo! Maybe we are doing something right but we know that we owe a lot of it to all of your prayers. They also checked the blood flow from the placenta. There was a break in the pattern before which really hasn't changed. The good news is that there isn't reverse flow at this point. Which would mean that she has to come out & she isn't ready. We discussed steroids which he actually brought up before me so that made me feel good. Nobody here likes to do follow up shots so they don't want to do it until she is close to viability in weight. He said that we need to get to 500g first. He may do it a little before if we expect her to grow to 500g before delivery. He would also want to check with the neonatologist first as well. Overall he said that if it weren't for this heart issue he would be feeling a lot more positive. We discussed how often I should be seen & we agreed on every two weeks. There isn't much need to go sooner because she isn't big enough in weight to survive if we take her out. We may increase monitoring or appts. later. We do go back to the Pediatric Cardiologist on the 5th & then another level 2 ultrasound the next day so hopefully things won't get worse before then. Plus, I will also be 26 weeks that day & hopefully she will grow at least another 80g in two weeks.
I am going to keep doing all that I am doing. Besides, being on milkshakes & fatty foods isn't so bad. LOL Staying positive & praying is the key! Thank you again for all of your thoughts & prayers. They are working!
6/24/2008 6:48:00 PM
May 28th, 2008
When I wrote my update last week I was so excited that Kayleigh had grown 2 weeks out of 2 weeks & that the amniotic fluid had not decreased even though it stayed the same. However, the doctor had noticed some fluid around her heart that was cause for concern. After I sent the email I did some research online & started to get more & more worried. I had actually gotten more upset than previous bad news visits. Adam wasn't home so I was able to be sad without bringing him down as well. I have been so positive & he has stayed positive with me so I didn't want to let my worry bring him down. I emailed my doctor & he told me that the fluid was significant & gave me an amount of 5mm of fluid. From what I had seen online that was a pretty bad sign. They suggested that a large amount of fluid like that could mean that she is in the beginning phases of passing due to heart failure. Needless to say we began to freak out. I called my doctors the next day to rearrange some appointments. I pushed the pediatric cardiologist until today because our original appointment wasn't until next week. I figured that if the fluid wasn't there two weeks before then I wasn't going to wait two more weeks to have a specialist look at it.
So, we went to see the pediatric cardiologist today. Are you sitting down? He didn't see the pericardial effusion (fluid around the heart) that the ultrasound tech or the doctor saw last week! He said that he heart looks fine from what he can see. The heart rate is good, the squeezing of the heart is right, & there doesn't appear to be anything wrong structurally. We are beside ourselves. We are so happy but at the same time, every good news has also brought bad news so we are just waiting to see what is next. Could it be that there is a conspiracy going on with all of our doctors. LOL Yesterday we had a visit with a neonatologist (baby specialist). They will be the ones treating Kayleigh once she is born. Gosh, it sounds so nice to start planning for a birth. He also didn't sound very positive but he also thought that there was fluid around the heart. He said that she needs to be at least 500g to have a chance because their equipment isn't small enough to handle a baby smaller than that. She was 269g last week. He also said that a "healthy" baby should gain 20g per day at this point. If we were lucky enough then she would be 489g when we go back for another ultrasound next Tuesday. Since she has been growing small we are hoping for 10-15g/day. We also discussed that since the blood flow from the placenta is not good but stable that once she is at a viable size of at least 500g that I may go on hospital bedrest to be monitored. That way if there is an unexpected change we can have an emergency c-section. Adam & I are thinking that this could take place around 6/10 if she grows 10-15g each day. I am glad that I will be able to work because that will save me from boredom. Adam could go on appointments but I can maintain our client load that we have now. We also have other staff that could take over if we can't maintain the service that we give now. What does all of this mean? It means that all of your prayers & thoughts have played a major part in Kayleigh's growth & health. We believe that the fluid was probably there last week & now it is gone. She wasn't growing & now she is. The amniotic fluid was going away & now it is staying the same. The blood flow from the placenta was getting worse & it is also staying the same. We couldn't have gotten here without all of you, your prayers, & God. We still have a really tough road ahead of us so please don't stop your prayers. We are keeping our fingers crossed that next week we can break the trend &
get good news two appointments in a row.
6/24/2008 6:48:00 PM
June 3rd, 2008
It is with deep sadness that I send this update today. We went to see the specialist again today for our two week ultrasound. When I last updated, Kayleigh had grown two weeks out of two weeks, the amniotic fluid stayed the same, & nothing else changed except for the fluid around her heart. We now know that the fluid isn't a big deal so we expected decent to good news today. As it turns out Ms. Kayleigh hasn't grown at all in the last two weeks. However, the amniotic fluid continues to stay the same. She is still 10oz. & she should be about 28oz. by now. Plus, it appears that the flow of blood from the placenta has now gone from absent to intermittent reverse flow. This is not a good sign. The doctor said that this is not something that usually gets better, it gets worse. If it goes to continuous reverse flow, Kayleigh will surely pass away. Nobody can say how long this will take so we are hoping & praying that she will grow enough before that happens so that we can take her out & test our chances on her survival outside the womb. I have to say that it is hard to remain positive with this devastating news. We are certainly not going to deliver her before she has a minimal chance to survive so now we are just playing the waiting game. We are going to keep doing all that we are doing & hope that God will answer our prayers. Even though I am not ready to say it out loud, I know that everything happens for a reason & God has his plan. It is just unfortunate that sometimes it hurts so much. I know that Kayleigh's story has given so many people hope & inspiration but I hope that can continue in life & not death. Please continue to keep us in your thoughts & prayers. It seems that we need it now more than ever. I know that we keep asking this but it is all that we can do to not feel completely helpless. Thank you all so much for your support. We often depend on it.
6/24/2008 6:49:00 PM
An E-mail No One Wants to Send Faith,
I was led to the NILMDTS website by another mother. To make a really long story short after a really bad day, I am 25.4 weeks pregnant & our baby is not expected to survive. I am attaching a link to my post on the Babycenter.com in case you want to read about our story. http://boards.babycenter.com/n/pfx/forum.aspx?tsn=1&nav=messages&webtag=bcus6669&tid=7540. I am pretty sure that we would be interested in your service but I have to say that I feel a little guilty even considering that the doctors might be right this time. You see, they expected Kayleigh to be gone by now but I never listened. I have been very positive until today when we found out that she hasn't grown at all in 2 weeks & she was already 4 weeks behind. The doctors expect things to get worse & not to get better at all. Our goal now is to pray that
she gets big enough to have a chance to deliver her alive. She has a long way to go before we get there. Probably 3-4 weeks at minimum. In the event that doesn't happen I think that I would like to have some great photographic memories. I would not only love it if they were professional but everyone around us will be grieving with us so we don't know how or who to ask to help us capture those potentially last moments with our daughter. Can you help? Thank you so much for offering this service & taking the time to write back to me. We really appreciate it. From: Faith Massey [mailto:imagesbyfaith@carolina.rr.com] Sent: Wednesday, June 04, 2008 2:40 PMTo: 'Aimee Freeman'Subject: RE: Hello Faith Aimee, I cannot even fathom the suffering you are going through. I have been reading your post at babycenter and I am just heartbroken for you. I do have to say though that God is in control, not the doctors. Don’t ever give up, just based on what they say. My husband and I were told we could not have children together and we have 6 now. (2 from a previous marriage and one is adopted), but he has 3 biological children against the odds so stay strong. I would be more than happy to do anything I can to help you. In the event of a miracle and she is born alive, I would be happy to come photograph her in the NICU or at the hospital as well. If tragically she does not make it and you have to be induced please just call me as soon as possible so I can arrange to be there for you. If you want to talk about it more and understand what kind of options you have please give me a call anytime. My home phone is (704) 766-0669 Many Blessings and lots of prayers coming your way! Faith Massey www.imagesbyfaith.com
6/24/2008 6:51:00 PM
June 19th, 2008
Hey everyone. I hope that you all aren't worrying about us too much. I know that many of you knew that we had an appointment on Tuesday & today is Thursday. When I woke up on Tuesday morning I had some really bad back & right side pain. I tried to wait it out thinking that Kayleigh was just sitting on a nerve or something. The pain got increasingly worse over the next few minutes so we called the doctor. I am not a medicine taker & I certainly don't like the hospital so I have to be REALLY hurting or worried to take that step. I am very familiar with how contractions feel & I didn't think that was what was going on but nothing about this pregnancy has been normal so it was a possibility. I was supposed to go in at 11:15 for the ultrasound appointment but we were told to go to my regular OB's office. We got there at 9:30am after a long drive to the hospital. It is only a 20 minute drive but it felt like hours. I was unable to sit or lay down so I was on the floor in the waiting room hunched over a chair. We were finally called back to be seen & the same thing, I couldn't even sit on the exam table. The doctor found Kayleigh's heartbeat as well as another finding. My ovaries are the size of tennis balls with many cysts on them.
Ouch! He wanted to send me to labor & delivery to be monitored & to monitor Kayleigh. We got into the room & I still couldn't sit in the bed. Fortunately I only had to wait about 15 minutes before the extreme pain would be gone. I had a nice mix of Demerol & Phenergan. I have never had pain medicine through an IV so I didn't realize that it would be working within a minute. The nurse told me that I would get drowsy but geez. I couldn't see anything two minutes later LOL I stayed in that room for several hours & everything was looking good with Kayleigh. I had been monitored for probably 4 hours & they confirmed that I was not having contractions. Yeah! This was good news because we still didn't know how big Kayleigh had grown. So, why am I having this pain? I was sent to radiology for a renal ultrasound. (to check my kidneys) They thought that I might have a kidney stone. They got the results back & nothing again! Now I am thinking that I am going to be a medical mystery too. Since we knew that nothing was going on with Kayleigh they moved me upstairs to the OB high risk unit. I would be staying the night here. I continued getting shot up with drugs every 3-4 hours so I was doing okay. Adam stayed with me the entire time. I really appreciate him being here but I hardly said 5 words to him the whole day because I was on vacation in never never land. We went to bed early that night & got up early yesterday morning. It is hard to sleep through the night with doctors & nurses coming in to take vitals & give meds. Lucky for me that the meds put me to sleep. At 9am yesterday the doctor came in & told me that we would see how the day goes to determine if I will be sleeping here again. He also ordered the ultrasound & said that they should be in at any moment. I tried not to take any pain medication after that because I wanted to be alert for the ultrasound. When they still didn't show up at 3:30 I couldn't wait. I had a half dose this time which didn't even tough my pain. At 6pm they came in & gave me my full dose. I was pretty much drifting off when there was finally a knock at the door. Woo hoo the ultrasound guy is here! He was doing the scan for a few minutes checking everything out & seeing her movements when we just blurted out how big she was. Are you sitting down.............469 grams (16.5oz or 1lb) ! I can't believe it & Adam jumped off of his chair & asked for him to repeat it. She grew 200 grams since the last ultrasound two weeks ago. She is considered viable now. My amniotic fluid also went up to 4.7 which is the highest it has been in 9 weeks. He checked for several minutes & can see no signs of reverse flow from the placenta. All of our worries are gone! As you can imagine we are overwhelmed with joy & in a state of shock. We have been told for nearly 10 weeks that we would never get to this point. To make things even better, I have been feeling Kayleigh move like crazy. It started on Sunday night after we got home from visiting with Adam's parents. I guess Kayleigh gave daddy his first Father's Day present. I felt a bunch of little movement & then both of us got to feel two huge kicks. Ever since then she has been beating me up. I love it though. I know she is okay when I feel her move. So, what is next? We are going to be seen twice a week for monitoring so if something goes downhill, we can take her out. We also will get an ultrasound every week instead of every two. Now the only thing left to deal with is this pain. Nobody is sure what is going on except for that I can be feeling the tenderness of the swollen ovaries. The doctor said that they looked like the ovaries of someone who had fertility treatments. He doesn't think that it is anything to worry about. Except for the pain of course. It is possible that all of her moving around is hurting them. I don't have enough amniotic fluid to protect them. Last night I thought she was treating them like a speed bag. Just punching them over & over. LOL I am hoping to get sprung today but not without a nice prescription. I have hardly handled sitting here in this bed & I know that once I go home I will find other things to do & I won't rest the same way. At least I have my computer so that I can work & touch base with everyone. Thank you all again for praying for us. We didn't even expect her to grow as much as she did so this is certainly a miracle. We are not out of the woods yet but we can see the light. I just know that this time we are going to break the pattern & not get bad news. We can't wait for you all to meet Kayleigh. You may not get to hold her though because it looks like Adam & I will already be fighting over her. Please continue to keep us in your thoughts. I hope that the
news continues to get better & better & that the sad stories have ended. My next goal is two pounds. This would be about 900g. This will probably take about 3-4 weeks if she grows well. I hope that you all have a great day. Sorry for the long email, I got carried away. LOL
6/24/2008 6:52:00 PM
Some Love Emails Adam, I love you very much. I am not feeling well & can't eat my lunch. Maybe it is just nerves. I am trying to be a trooper but I am be wearing myself out trying so hard. I really hope that Kayleigh will be okay. I was so looking forward to this weekend, possibly going to register for the baby. Now, the next time I see our home I will have delivered. I hope that you are going to be okay without me. I also hope that I can see you every chance I get. Well, that you get. LOL I am always available. I can't wait to see you guys. I missed you the other day but I knew I would be coming home. Now, I could be here for 3 months. I will be spending our anniversary here, 4th of July, possibly my birthday, & the start of school. ARG! I just want to scream. Actually, I am already screaming inside. If I do it out loud they will think I am in labor. I am wondering if you should bring the camera & video camera. At this point, any minute could be the one. I love you baby! Aimee _________________________________ Aimee, I am sure it is nerves. Just hang in there and know that I am here for you and will help anyway I can. So don't ever feel like you are bothering me by asking me to do something. I will take very good care of you and do whatever it takes to make things easier on you. I know it is going to be tough to be in there, but it is going to be worth every second when we hold our little girl in our arms. Just keep thinking about that and it will make you feel better. This will be the toughest thing you will ever have to do in your life, but you are the strongest person I know and I love you more than anything in this world. I will start putting things together here because I am done with Craigslist. When do you want us to come up? I know the kids will get antsy there, but we can come when you think is a good time. I know we can watch Camp Rock tonight with them, but that is not until later so I would hate to keep them
cooped up in the all day. It is totally up to you though. Hang in there sweety and know that you have everyone thinking and praying for us. Maybe you should write another update to help you pass the time a little. I love you tons!!!! Adam
6/24/2008 6:53:00 PM
June 20th, 2008 Hello everyone.
I bet you thought that you wouldn't hear from me for a while. You should have remembered that every time we get good news, bad news is just around the corner. Maybe not bad news but less than good news. I thought that I would possibly be going home yesterday. The only reason that I was still in the hospital was because they were making sure that my pain could be controlled. The doctor then told me that I would just come home today to be safe. I went all day without any pain meds & took a dose at bedtime because I was getting a little achy & I wanted a good night sleep. Adam & the kids came to see me last night & the kids took turns climbing in bed with me. Adam told me that Allyson made a comment in the car that touch me & has me feeling down today. She remembered that two years ago I had to go away for 6 weeks for job training in Indianapolis. They didn't see me at all for the entire 6 weeks. She told Adam that she doesn't know how she dealt with me being gone for so long. Today I woke up with the anticipation of coming home. I got up at 8am when they brought my breakfast, gobbled it down, & went back to sleep until I heard the news that it was time. In between dreams one of my doctors came in. She is from the same practice but I have not been treated by her yet. She apparently looked over my chart before she came in. She started asking me all kinds of questions about what I understood the plan to be from here on out. I told her that I thought that I was going home & then she asked about the plan for the baby. She knows that Kayleigh is viable now so it seems that someone was finally ready to have a conversation about "the future" with me. She asked me if we would do anything that we could to keep her alive if things started to go badly. Of course, we said yes. So, she has the same thoughts that Adam & I have had for many weeks. She feels that I need to be here so that we can catch things as soon as they happen. We mentioned that to another doctor the other day & he didn't feel that it was necessary. We were shocked. I will be monitored for 30 minutes twice a day & have ultrasounds every few days to check on growth. The doctor also asked me if I had considered taking the steroid shots to speed up the growth of Kayleigh's lungs. I told her that I have been asking about them since 23-24 weeks & nobody wanted to do them that early because if I stayed pregnant longer, they didn't want to repeat them. Thank God for this new Doctor! They may be giving me
the steroid later today. Five minutes later she came back in & told me that my blood pressure has also been up so they needed to draw some blood before we did the shot. Great! Maybe I could have pre-eclampsia too! I told her that I am determined to get us in a medical journal somewhere. So, my new address is room 9215 at Carolinas Medical Center. I have asked if we can re-wallpaper the room & get some new furniture but I don't think that is going to happen. I am going to have to settle for photos & my own pajamas instead of this HUGE gown. If anyone has any ideas of what I can do to stay sane for the next several to 12 weeks please let me know. I am going to see how many houses I can sell from bed. LOL Adam is such a blessing to me. He is going to have to take over my role at work & home while keeping is role too. Plus, he has to come see me every chance that he has. I already told the nurse that half the week he will be living here with me. Thank you all again for your thoughts & prayers. You never know what my next update will be. It could be a birth announcement.
Aimee
6/24/2008 6:54:00 PM
Some More Love Emails Adam You are the best thing in the world & I am so happy & blessed that I have you. Another woman told me on the message board how lucky I am to have you. Aww. LOL I couldn't be going through this with anyone else. You are a great husband, step-dad, & a soon to be father. I can't wait to see your face when she comes out. Just don't forget about me laying there alone. :) I have to leave you alone so you can work. I wish I could be more help to you. Let me know if you need anything! Love you! Aimee ________________ Aimee You are too sweet! Just know that there is nothing you can ask of me that I won't do. I am here for you to make things easier for you so you can rest and
do nothing but take care of our little girl. I want you to be stress free as much as possible. I love you so much and I can't wait for Kayleigh to come out too so she can grow and I can have you both home with me. You are so strong and I can't say enough wonderful things about how proud I am of you for being so amazing! I couldn't ask for a better wife and best friend than you. I love you beautiful, Goodnight! Adam _______________________ Adam, I just wanted to let you know that today was one of the best days in a while for me. I felt so in love with you today & I am sure that you could see it. I don't know that I have ever told you so many times in a few hours how happy I was. I am sorry that I am not like this more often. I feel it, it just doesn't come out like it did today. You are the best husband in the world Mr. FREEMAN. (get it?) I am so happy that you are going to be my husband forever & Kayleigh's dad. Not to mention an awesome & fun step-dad to Brandon & Allyson. You have brought such joy to my life. I am glad that whenever things get tough, we find our way back to each other. I really don't think that I could live without you. You are my heart. I can't wait until tomorrow. Sleep well & don't worry about tomorrow. You seem really positive & I know that is all that you need. I love you baby! MUAH! Aimee
6/24/2008 6:55:00 PM
Aimee's Message Board Post 6/21/08 Hey Ladies. Today was a good day. The kids were with their dad & Adam just left but he has been with me since 1pm today. It was the first day in a long time that I didn't worry about ANYTHING. No work, no problems, nothing. It didn't start off to well though. I couldn't sleep at all last night. I am not the kind of person to ask for things so I tossed & turned until 5:30am before I called my nurse in. She said that it was too late for sleeping meds but she gave me Vistaril. It calmed me down & finally got me to sleep around 6:30am. With that being said, I was up again an hour later for vitals & breakfast. I think I fell asleep for 30 more minutes after I ate. After reading online today I saw that the side affects of Betamethasone are sleeplessness. I wish someone had told me that! LOL I would have taken the Ambien at 12am. So, tonight that is the plan. I had my second shot today which hurt a little more than the first but that it because she went slow & left out the butt massage. My face & arms are flush but that could be the medicine as well. Tomorrow they are waking me up at 5:30-6:00 for my glucose test since everyone seemed to forget (twice) that I still needed this. They also wrote in my chart that I can go for a 30 minute walk twice a day. Can you hear me? WOO HOO! Adam doesn't want me moving out of the bed but he realizes that I need this. I took a shower today, put on some great smelling lotion, my own pjs, & we walked to the cafeteria. For now, going to the cafeteria is a hot date. LOL Just to be able to walk across the hall to the refreshment station is exciting. I have only left my room before today for 10 minutes in 4 days. We ate bad food all day & watched, don't laugh....the first four episodes of Dawson's Creek. I am a Melrose Place, 90210 girl & Adam loved Dawson's Creek. Well, Katie Holmes to be exact. He has been begging me to watch this forever. Being tied down in the room gave him the opportunity to spring it on me. It actually isn't bad. We have a good two full days to go so it passes the time perfectly. I told him that I feel like we are dating again & he is hanging at my apartment & then going home at night. Tomorrow he has to go on an appt. for us & then he will be here around 5-6pm to spend the night. Yeah! I was thinking of asking my nurses if I could put a dry erase board on m door like in a college dorm & if I put a towel on the door it means stay out. LOL I mean I have to keep my humor in
here at least. Thanks for all of the great ideas. I played a few games last night & today the day was so perfect that I didn't even think of other things to do. I think I told Adam 50 times how happy I was to have him here. Oh, I almost forgot the main reason that I started the post. When we were on the monitor this evening Kayleigh had 4 A cells. The nurse said that she didn't expect that for a 28 weeker. She said that it looked like the strip of a 32 weeker. Go figure. Little Kayleigh is only measuring around 22-23 weeks! These doctors better get prepared for a miracle because there is one coming! I will check in again tomorrow I am sure. I hope that everyone has a great night. Thanks for hanging out with me. Aimee
6/24/2008 6:57:00 PM
Love Letter to Adam 6/22/08 Thank you baby. I think that we bring out the best in each other. It is hard to stay mad or upset when you love someone so much. I think that this situation with Kayleigh has really made us see how silly the little things can be. We have gotten along better than ever. Sure, we have a few speed bumps get in our way every now & then but they don't usually last more than a few minutes. I have so much love for you & I want you around all of the time & sometimes that gets in the way. I know that we have our whole lives but there are certain moments like when you were here yesterday that I want to last forever. I feel like you are part of me & when you are gone or doing something else, I feel empty. Part of me thinks that is a great thing to have in a marriage but I can also see where from time to time it could cause a disagreement. I have never in my life wanted to spend every waking moment with someone. Sometimes I have to remind myself that you are not physically attached to me & that I can let you go for a few hours,etc. You say many times to me that we have our whole lives together but I also think that you take for granted that means 100 years. People say that life is too short & we all know that it can end at any second. I want to do everything imaginable with you. Every experience, every thought, everything I want to be with you. You are an amazing man & I see it more & more each day. We are starting to learn each other well. Our behaviors, our thoughts, our intentions. We know how to push & when not too. We are building one of the best families that people will ever meet. We need to remember how we feel about each other right now for the rest of our lives. Whenever one of us feels that we can't take it anymore we need to be able to re-read these letters from each other & remember how strong our love is. We have something that unfortunately most couples will never have. At least that is what I think. God has his plan for me & I am so blessed that it was to meet you. I never thought that I would find my life partner so quickly but I thank God that I did. Most importantly you are my best friend. We can tell each other anything, laugh together, fart together (even though I try not to), we can get dressed up or just sit home & be buddies You are my lover & I appreciate how much you care about me & how I feel & how comfortable I am with new things. You are absolutely gorgeous which honestly in the past has made me a bit jealous. Over the years & through my growth in trust I have come to believe how much you love me & wouldn't ruin our marriage over something stupid & meaningless.You are an amazing dad & that is only going to get better. You had to find your way which is to be expected but you are getting so much better at being a dad to the kids & a friend when needed. I also think that this situation is coming at a good time for you to know them better. I have seen more & more over the last few months how much you mean to them & them to you. I feel like they are starting to treat you like their dad & not so much a step dad. Four years may seem like a long time for that to happen but they were only 2 & 4 when we met. They are learning to. My
heart is so full when I think of how you are going to be with your little Kayleigh. I am actually tearing up picturing you holding her, protecting her, & loving her. I am the light of your life now but I think that our love has created some strong competition for me. LOL I know in my heart that you are never going to hurt her & that you are going to do everything in the world to show her what she means to you. You will finally understand how hard it is to punish the kids. :) I love that you have something that you love to do with fighting/grappling. I haven't seen you passionate about something like this before. The good thing is that you are pretty great at it too so it isn't a "wasted" hobby. I enjoy going to your competitions & seeing you do so well. You can't see it & that competition because you have to stay tough but that moment when we first get in the car alone together & you jump around in the car like you are 5 means the world to me. I am so happy that I am the one that you share those moments with. I love how you take care of me even though it seems that I don't like to be taken care of. It is nice to not only have someone say that they worry about you but they step in to make sure that you don't have to do it yourself. I appreciate that when there have been things in our relationship that have gone wrong on your end, that you are honest with me even if it is painful to hear & can take a long time to get over. Of course I would rather those things not happen to begin with but we are going to make mistakes. The important thing for me is that I feel that if you do falter, you will be honest with me. I do not want a life of secrets & I think that in this life there won't be any. I am more & more proud each day of my relationship, my family, & my job even though it is going slow. As a team you & I are figuring out how to make things work even if it is making lemonade out of just lemons. Our love is conquering everything that gets in our way. Thank you so much for bringing God into my life more than he has ever been then before. Without it, I don't know that we would have found our way back to each other & I honestly don't know if it would have gotten me through this trying time with Kayleigh. Thank you for believing in my feelings that the doctors were just wrong about her. You may have thought that I was crazy 10 weeks ago but now we both believe in this miracle. Kayleigh is destined for greatness. Ok, I am going on & on forever & you aren't even going to have time to read this all if I don't stop. I am not much of a writer but I guess it is easy when you feel so much inside. You are my world. I will never love anyone the way that I love you. You are a huge piece of my heart & my soul. When I think of us I think of Noah & Ally from the Notebook. I imagine us dying together holding hands in the hospital bed & truly never being apart from each other. At least that thought makes me feel better because I think that I would just die inside if I didn't have you with me. You are an amazing man Adam Freeman & I thank you for making the choice of asking me to be your wife. I am so proud to be Mrs. Freeman & I will do my best to live up to my name for you. I love you baby! Forever, Aimee
6/24/2008 6:58:00 PM
Letter to Adam's Parents 6/22/08 I hope that you don't mind but my heart was full of love this morning & I felt that I needed to write to your parents. Here is what I sent..... So I am sitting here in my hospital bed this morning, awake since 6am. Adam & I have been writing letters to each other since last night & I just finished my novel of a response to him. Near the end I realized that I needed to write to both of you too.
I am so blessed to have such a wonderful man to call my husband & I know that he wouldn't be half the man that he is without the love & support that he has gotten from the both of you. I never in my life dreamed that I would want to spend every waking moment with one person. Sometimes the eight hours that we are apart each week seem too long. Adam has become such a large part of my heart over the past four year & so have the rest of the Freeman/Wojtowicz family. I couldn't have asked for better parents, cousins, aunts, uncles, brothers, or sisters. You have each brought something special to my life & to Brandon & Allyson's life. You have treated me like a daughter & never just like Adam's wife that you have to get along with. I feel like the kids are accepted just as Jason, Julia, & Penelope are which touches me so deeply. I know that Adam & I have had our growing pains over the years but you have both helped us get through it & we appreciate it. I have never felt closer to Adam than I do now. This situation with Kayleigh is bringing so many of us closer & it certainly has made the little things seem completely ridiculous. My heart skips a beat when I think of my life with your son. He is truly amazing in so many ways. He is an excellent husband, best friend, father, co-worker, brother, & so much more. I am so lucky & thankful that he chose me to spend the rest of his life with. I am very proud to be one of the many Mrs. Freemans. I intend to work my hardest to keep the integrity that goes along with that name. Thank you both so much for welcoming me & the kids into your lives. Thank you for all that you have done to help both Adam & I grow in our relationship & personally. Thank you for being great parents & friends. Thank you for all of your help & support during this trying time. My heart would be a little less full without the two of you! I love you both so much! Aimee
6/24/2008 6:58:00 PM
June 23rd, 2008 A Night to Remember!!! Hello Everyone! What is a another night without drama in the Freeman household. Please make sure you are secure in your seat when you start to read this. If you have rollers on your chair, make sure their locked and if you are reading this from your cell phone while driving, please pull over right away or you are bound to rear end the car in front of you. The whole day was going great yesterday up until 7:00. I (Adam) had an appointment with a buyer all day and afterwards, I took the dogs over to parents house because I was planning to stay a few nights in the hospital with Aimee. Not even 10 minutes after I got to the hospital, Aimee started complaining of chest pain and that her heart was beating out of her chest. Earlier that day, her blood pressure was a little elevated and soon after Aimee complained to the nurse, they took her blood pressure again. The numbers showed she was even higher than before. The nurse at that time was convinced it had to do
with the medicine she started taking yesterday morning. I was not satisfied with that answer because anyone with common sense would know that medicine you took yesterday morning doesn't hit you a day and a half later. After a few hours of pain and suffering, the blood pressure was pulled again for the third time. 196/111 and the nurse finally called the doctor. Unfortunately the Doctor was in a C-section, so poor Aimee had to put up with the pain a little longer even after some pain medicine was given. The Doctor finally came in about 45 minutes later and decided to take Aimee down to labor and delivery to monitor her and take some blood for testing. After we moved in to the suite downstairs, they put Aimee on some Magnesium to help bring her heart rate down and it helped. They hooked her up on a catheter which had to be the most uncomfortable thing I have ever seen and wires were going every which way. It just hurt my heart to see her this way, but the Doctor and nurses were unbelievable down there and they made us feel so much better. They got us to a point where we were settled it and trying to get some shut eye before the lab brings the results back from the blood work. And then our worst fears were about to come true. It was now 2:30 in the morning, and the Doctor woke us up which felt like two minutes after I fell asleep and said they have to take the baby by emergency C-section. Her blood came back showing a severe case of pre-eclampsia and there is no cure, but to get the baby out or this could fatally harm Aimee. Aimee was rushed in to get a spinal block and I was sent to a room to get changed in to my scrubs. I was breathing so hard that the mask kept pushing the hot air in to my glasses, fogging them up. We were a wreck because all we kept thinking was that her lungs are not developed enough. We spent the last 10 weeks hoping and praying that she would make it to a viable state. The ironic thing is the other Doctors didn't want to keep Aimee on bedrest and they didn't want to give Aimee the steroid shots yet. The one and only Doctor that happened to be on call last night read through our chart the other day and over written the other Doctors on both decisions, and it was done for this single reason. What else is crazy is that the steroid shot is best when used 24-48 hours before delivery. Aimee received the first steroid shot about 48 hours prior to this moment and the second, about 20 hours. A Nurse came in to grab me and take me in to the OR. Aimee was laying down while the Doctors were already making their incisions. It was a scene from a movie as there were 5 NICU Doctors over to the left, two anesthesiologist to my right, and three other assistances working on different things. It was a packed house!!! I won't get in to the gory details of the tugging and pulling of the C-Section, but all I could do was rub Aimee's head, hold her hand and tell her I love her. She was shaking and nervous as I was too, just waiting for the moment when they would pull little Kayleigh out. All of a sudden, the Doctor reaches deep inside as the other assistance back up a little and pulls little Kayleigh in to this world. I have never seen anything more beautiful in my life and goodness gracious she is "tiny"! With a deep breath and no exhale, they rushed her over to the NICU table as several Doctors were scrambling to clear her passageways and get a tube in to her throat. All we could think about what her size and if they could fit a tube small enough in that tiny little throat of hers. I tried and tried to listen to see if I could hear anything they were saying, but they were all whispering behind their masks. Just then, the Doctor came over and told us they were able to get a tube small enough in and they have stabilized her. WHEW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I felt really bad that Aimee couldn't see anything at all, but as they were taking the incubator out of the room and down to the NICU level, you could see this oversized pink beanie on this cute, 1 pound - 1 ounce (470gram) little baby girl. You could see her little hands waving up in the air (which were the size of my finger nail) when she passed by, as if she was waving to Mommy. For the next couple months, she is going to be living at the NICU. The photo that is attached is when I was able to visit her at 6:30 this morning. She was on a breathing respirator, but showed signs of breathing on her own so they have taken her tube out already. Can you believe that? They say that the first couple days are great, but then things will get really bumpy along the way. All we ask is that you don't stop praying because we are a long way out of the woods. She has many hurdles to go, but we already know she is a fighter and will make it through anything.
Thank you all again for all your thoughts and prayers. Keep praying because there is no doubt that I have seen the work of God through this experience. We will update you all on the progress and more pictures soon. Love, Adam and Aimee
6/24/2008 9:05:00 PM
Recent Photos of
6/24/2008 9:07:00 PM
New Photos
Kayleigh is doing wonderful through her first full day. She is already off the breathing machine and is breathing on her own. What you see above is helping her get some oxygen in her system. She also lost an ounce, so she is weighing in at one full pound right now. She is amazing!
6/24/2008 9:09:00 PM
6/24/08 11:45 AM
Kayleigh is getting a tan! Check out them shades! You can really get a good look at how small she is with Mommy's hand right next to her. She is so small, they had to tear the heart monitor in two and place it on her stomach. That is the half heart shiny thing you see above. She has so many wires hooked up to her for monitoring. It might seem scary, but it sure makes me feel safe to know they see everything that is going on. Daddy is already over protective :)
6/24/2008 9:20:00 PM
6/24/08 - 9:30PM
Today was an awesome day. Aimee was able to see Kayleigh for the first time this morning and we both got to hold her for a short minute each while the RN changed her bed. It was amazing and we can't wait to do that again. Kayleigh is doing great. She is still breathing on her own and we are getting nothing but good feedback from the nurses so far. Let's keep it up!
6/25/2008 11:51:00 AM
Two Videos of Kayleigh Hello Everyone, I thought that I would take some of the video I took over the past two days and share it with you all. On the second video where Kayleigh is tanning and where I put the camera up to the opening in her incubator, turn your volume all the way up and you will hear the sweet sounds of Kayleigh crying. It is by far the cutest sound you will ever hear in your life. I tear up every single time I hear it. Seeing some of the video and with Aimee's hand in there, you can really see how little she is. I hope you all enjoy!
6/26/2008 1:05:00 PM
6/26/08 Photos
Hello everyone, Today is going great! I changed my first diaper today. Well, not mine but Kayleighs. OR should I say "Kayleigh's cotton swab." Aimee is about to check out so we can take her home. She is ready to sleep through the night without anyone coming in to wake her up to check her vitals. Me neither! ha-ha. Kayleigh is doing great. She has a little bit of air trapped in her tummy, so they are doing some tests to see why she is blocked up and then
do what they need to do to fix it. All the nurses seem positive with her progress so far and feel like she is doing great. They are the professionals and they do this everyday, so if they feel good about it, then I feel good about it. I am just finally glad to hear positive news and if it isn't positive, there is something that can be done. Thank you all for your words of enouragement and keep the prayers coming, please!!!
6/27/2008 6:23:00 PM
6/27/08 - Making Progress!
Today, Aimee and I went to see little Kayleigh and we received some wonderful feedback. First off which I am sure you can see, she is off the biliruben lights. They have also reduced the oxygen level even more which they push through her canula because she is beathing very well on her own. The trapped gas in her stomach has reduced a good bit, but they are still keeping a close eye on it. Aimee said she must NOT be a true Freeman if she has trouble farting. Kayleigh did lose a couple ounces, but that was expected. With the lights and the humidity she was putting up with over the past couple days caused her to lose weight. She is now weighing 13 ounces, but the nurses increased her fluid through her I.V to try and put some weight on. They say most
preemies will lose around 10-20% of their body weight after they are born, but her 25% loss so far is not a huge threat until they weigh her over a weeks period to compare the fluctuation. We received a wonderful email today from a Mother who works in a NICU. I am going to post her email in the comments below so everyone can read it. Emails such as this one makes Aimee and I feel so blessed by God with such a miracle like Kayleigh. Aimee and I can't even begin to describe the feelings we are going through. We are so amazed, shocked, excited, and scared all at the same time. I feel like I am in a movie that lasts a lot longer than the normal 2 hours. I also want to thank everyone so very much for all the flowers, cards and gifts. They are all so beautiful, smell very good and are greatly appreciated! Many of you have been asking us what we could use or how you could help if we needed help. Aimee and I are not the kind of people to ask for things, but we know that many of you want to do something but just don't know what that something is. Aimee and I were talking about how tough it is going to be to visit her as much as we want with the gas prices the way they are and he being about 25 minutes away. We also know she is going to be in the NICU for a long long time. So if any of you want to help with gas cards or gift cards for quick dinners, we would be so thankful. Trust me when I say I hate to ask for things, but I know a lot of you asked and we would just hate to not see her as much as we want. Thank you all for your prayers and please please please keep them going so our little blessing can win this fight of her life.
6/28/2008 9:27:00 PM
6/28/08 - PEACE!!!
Today was another great day with great news! First of all, Kayleigh has a wonderful personality already! Right when I was about to snap one of my first photos of her while she was getting her vitals checked, she threw up the peace sign. What a character! Actually, we really needed the laugh with all the stress going on. I guess it is God's way of telling us to relax a little. Brandon (Big Brother) and Allyson (Big Sister) came to the NICU for the first time today to see Kayleigh. Aimee and I were a little worried on how they were going to react, but they did wonderful. The only thing they both said over and over is, "Oh my gosh, she is so small." It took them by surprise at first, but they were happy to update everyone back in the waiting room. Brandon came back telling everyone Kayleigh gained a pound. Boy do I wish, but you know children when it comes to ounces, pounds, inches, feet and days or weeks. It was very cute. Kayleigh is a Freeman after all. She POOPED! Well, it wasn't a big poop, but the good news is that all her intestines work and things were able to work their way through her system. I was worried there was either a hole or blockage that was making her stomach fill up. She did go back on the biliribbom lights today, but that is not a huge problem at all. They are still working on her belly to figure out what is causing her to be so bloated. Other than that, everything else looks good. The best of all news is that she gained a few ounces back and is almost at her birth weight again. She is now at 450 grams which is right around a pound. Aimee and I were getting a little worried when she lost 4 ounces so quickly. They did say she would lose 10-20%, but 4 ounces was close to 25%. So that is GREAT news!!! Stay tuned for more updates. God Bless you all!
6/29/2008 10:46:00 PM
6/29/08 - My Beautiful Girls!
Tonight was just amazing!!! Just look at this picture and tell me this isn't the sweetest thing you have ever seen? Oh my goodness, I about lost it when the Nurse pulled back the blanket to show how comfortable my sweet Kayleigh was pressed up against Aimee. They call this the Kangaroo care, where they allowed Aimee to hold Kayleigh against her warm chest for about 20 minutes with a warm blanket covering both of them. Kayleigh whined a couple whimpers, but was fast asleep before you knew it. I didn't think they would let us do this care so soon especially when Kayleigh is only a week old. Wow, can you believe that?? A week old already. Well, I heard before you know they will be dating, driving and off to college, so I should enjoy ever minutes of this while it lasts. Aimee is recovering slowly, but surely. She is still in pain from the surgery and seems to wear out much quicker. From other c-sections we've heard about, it sounds like she is recovering well above schedule. I definately have to give her so much credit because she has been so strong through everything that is going on. If you cut my tummy open, I would be crying like a baby for months and I am suppose to be the tough one. She is my hero and Kayleigh will soon learn how blessed she is to have such a wonderful Mom. Kayleigh is doing great still and the Nurse said she had a bigger poop last night, which is awesome! It was cute tonight, I changed her diaper and she was in the middle of pooping. I don't mean to be nasty by any means, but her butthole was the size of this period (.) and her poop is the funniest looking turd I
have ever seen. I guess I should enjoy that while it's small too. (ha! ha!) Her stomach looked so much better tonight, so the air is coming out thank goodness. She weighed in a 1 pound again, but anything is better than losing. They put her back on the biliribbon lights yesterday, but they then took one of the lights back off tonight to slowly wein her off. All in all, her progress seems to be going wonderful. We need to keep it this way! Thank you all so much for all the kinds words that you are posting. I love to see comments and I am sure Kayleigh will be blessed to see all the people that were pulling for her WHEN she gets older. If you want to post, click on the comments link below to leave a message. For those who have posted, please don't post annonymous because I have been wanting to respond back to you , but I have no email addresses. 6/30/2008 9:54:00 PM
6/30/08 Happy ONE WEEK Birthday!!! I can't believe it has been a week already. I hope that time flies by this quickly through the next several months until Kayleigh is able to come home. I heard the funniest thing today from someone who posted a message. They said that Kayleigh's home right now is a "Womb with a View." Since Aimee and I are real estate agents, I am sure we will be using this funny comment often.
Well, I have to first apologize and tell you that Kayleigh cancelled her show tonight and I was not able to get any good photos. She felt it was more important to sleep than to pose for Daddy. I am sure it won't be the last time. Seriously, I am glad she was resting because I feel so bad when she is up and moving around. I know that growth comes with rest and we want her to be as least active as possible right now. Today was a good day in the nurse's eyes, but I felt a little off for some reason. First of all, they moved her to another station which to me felt like it was more cramped and busy. I do not like change, so it may take some time getting used to. I think the first taste of it was bad because I walked in and there were several nurses and other family members crowded in the room. How is my litte girl going to rest with all this commotion? I am sure I just need to relax. They said she will stay in this room until she leaves, so that bugs me too. I liked where she was before because there was no one next to her and the room seemed to be more open and less cluttered. Can you tell I am going to be a psycho Daddy already? Also, Test results came back and her tummy was not as full with air as it was excess waste that just needs to work its way through. Since she started to poop a little, I am glad that it is heading in the right direction. She also came off the biliribbon lights again and you can really tell a difference in her skin. Aimee is having a little trouble with pumping and isn't getting anything. She spoke with her Doctor and was able to get a prescription for Reglan which is suppose to help move things along. If anyone has any insight on this, Aimee would love some feedback. We did get some bad news today, but the Nurse felt like it was nothing to worry about. They said they did a cotton swab of her nose only to find out Kayleigh has MRSA. Now as a grappler/wrestler, I know of Staphylococcus is long for Staph infection. That is not good if I were to get it because it could cause serious skin lesions that really have no cure. They said it is really common of preemies to have MRSA bacteria, but they often don't become active. If they were to come active, it would cause skin infections or pneumonia. They are going to keep an eye on the MRSA over the next couple weeks and treat it with a antibiotic that limits the number of bacteria to prevent larger chances of it harming Kayleigh. The Nurse said this is really common and we should
not worry. That is impossible! Other than that, they said that Kayleigh is doing great and there are no other issues to worry about. Please pray that this MRSA is nothing and will soon pass. I have been getting a lot of great emails from people and I thank you so much. We love to hear success stories, so please share more with us. God Bless!!!
7/1/2008 11:24:00 PM
7/1/08 - Headed In The Right Direction!
Today was another great day with great news. First of all, Kayleigh grew from 480 grams to 550 grams. That is 2.5 ounces! Doesn't seem like a lot, but when you only weigh a pound, that is a bunch! Grandpa went up earlier today, but the Nurses would only give Aimee and I any new information. He said that it looked like she put on some weight and he was right! She added about 16% of her body weight in one day. When she gets older, she probably won't be too excited about that kind of weight gain. Other good news of the day is that she had her ECHO Cardiogram and it came back looking good with no major issues. The only portion they want to keep an eye out for is the moderate VSD, which is a hole that is in the heart that usually closes on it's own in
time. Since preemies are born early, this hole is normally open but should close before their original due date. Basically, the Doctors will keep an eye on it and if it isn't closing, they could go in and close it for her. I am just glad that it is a common issue and usually takes care of itself. The great news is that there are no other issues with the heart. Also, Kayleigh had her head scanned to make sure there is no bleeding in the brain. They do this test 7 days after they are born and follow up in 30 days. The tests came back normal and their is no bleeding in the brain. WHEW!!! Well, Kayleigh would not be Kayleigh if she didn't give us trouble even with all this good news. She likes to keep us on her toes and most of you can agree with me on that after reading all the prior posts. Since Kayleigh is breathing on her own, there is a common problem amongst preemies called sleep apnia. She basically forgets to breath when she is sleeping and it causes her heartrate to drop until she is able to start breathing again and catch back up. It is a pretty scary sight because you will be looking at her monitor that consists of her heartrate, oxygen, and respiratory rhythm. You first will see her respiratory rhythm flat line and you also notice Kayleigh's chest not move at all. Then you see her heart rate and oxygen drop, sending off a noisy alarm through the NICU. Nurses will soon come to her rescue, pat her back until Kayleigh starts to breath again. Sometimes she catches it on her own, but sometimes she needs a little help. Throughout the whole day, she had a couple episodes where this happened, which is normal with a preemie that is just on a nasal cannula. Well, when Aimee and I were visiting her, she did it three or four more times within one hour. Talk about scary! They paged the Doctor and the Nurse Practitioner to come in to check things out. They changed a couple knobs for the oxygen and the flow of the oxygen, cleaned out her mouth and nose, and she was fine for the rest of the time. She just slept quiet and was breathing fine from then on out. The Nurse Practitioner said that sometimes the nose can get stuffed up or the mouth can get full of saliva that it obstructs the breathing passageway for the baby and just needs to be clean out. Well, give me a heart attack over a big booger!!! Besides Kayleigh giving us a slight heart attack and more hair loss, she is doing just fine. We are pleased to see her progress and hope that it continues for the remainder of the time. Although I am sure Kayleigh will have some more tricks up her sleeve to drive us looney. Just as long as the Doctors can assess the problem and quickly fix it, I will be fine with that. Thank you all for the great comments and I hope you like the photo of Kayleigh tonight. I would have taken more, but they would have all looked exactly like this one. She didn't move an inch while we were there all night. Maybe one finger moved for a second, but she put it back before I could snap another picture :) Thank you to all those who have taken time out of their busy schedules to come visit our little Kayleigh. It means the world to us and Kayleigh said she enoys looking at all you huge people.
7/2/2008 7:49:00 PM
7/2/08 - The Roller Coaster Continues!
Today was a little stressful, but things are under control. Kayleigh started the day off by going back on the CPAP to help with her sleep apnea. Her oxygen was set at a normal setting as if she was breathing in air like you and I do. They only are using the CPAP to help the flow of air into her lungs which helps her not to forget to breath. It is good to see she is going to get much better rest, but no one wants to see her take steps backwards. They said there will be set backs, so I just need to get used to that. The nurse mentioned that because she was having more sleep apnea episodes, it may be caused by an infection of some sort. So they have done some blood work to get things tested for infections. That should come back in the next day or two. There was a quick test that they took to see if it was some sort of major infection, but I forgot what they called it. The good news is, that test came back clear with no issues. We are really praying that the blood tests come back normal with no infections in the blood. While they were running some tests, they noticed her red blood cell count was low so she had to get a series of blood transfusions. She had one transfusion this morning and they were doing another later this afternoon. The first one went really well and was done with out any issues. She has two IV's, one for nutrients and the other for blood work, so it was easy to access and get her the blood she needed. Other than that, she is doing really well. It was good to see her today resting well without any bad apnea spells. She had a couple earlier today, but that was before they put her back on the CPAP. With the CPAP, she can still override the system and breath on her own which to me that is so much better. Seeing her stop breathing and struggle to catch back up seems like it would just wear her energy out and not allow her to get the deep sleep that she needs to help her grow.
Aimee is on the phone with the NICU right now to get an evening update. They do her vitals at 8 and 2 in the AM and PM, so we like to see how things are going every chance we can get a new update. She just got off the phone and I guess I spoke too soon. After we left late this afternoon, the nurse said she started to have some more bad spells with her apnea, so they put her on the ventilator which is a more assisted breathing machine. It is a even further step down from the CPAP, but whatever it takes to help my peanut. The nurse said to Aimee on the phone that it was a shock to see Kayleigh breathing on her own in the first place and that it is completely normal for a preemie of this age to be on the ventilator right away. We were told this may happen, but of course we all think she would be strong enough to not to struggle at all. The nurse mentioned that Kayleigh may have just worn her little self out this week trying to breath on her own. All we can hope and pray for is that she will not have sleep apnea episodes while on the ventilator. That will not be good. All we ask is for everyone to pray pray pray for our little girl right now. We need her lungs to mature quick, so we can jump over this hurdle. Thank you everyone so much for being there for us. I will update you as soon as I hear something. 7/3/2008 10:13:00 PM
7/3/08 - Very Quiet Day, kind of...
Now I say it was a very quiet day for Kayleigh, because Aimee, the kids and I were running all over town like chickens with our heads cut off. We had to drive across town to one of our listings, drive to the other side of town to the hopital, drive to the grocery store and then to the library during rush hour traffic when everyone was scrammbling to get out of dodge for the 4th of July. WHEW...It doesn't seem bad, but when you add baby drama stress, crazy kids and a lot of wreckless drivers to the mix, it is pure hellacious!!! AHHHHH! WELL, now I am sure you can picture me now, how wonderful it is to sit here on this cozy couch, sinking in to the fluffy cushions, eating this delicious icecream and cuddled up to my beautiful Aimee, while watching our favorite tv
shows...with the kids SLEEPING. What a great ending to a stressful day. I am just so happy to say that Kayleigh had her a quiet day of pure sleep because I would have gone off the deep end if she added more stress (than normal) to our day. The photo of the day is Kayleigh in her new, upgraded domain while on her vent. The nurses said she was doing wonderful today while on the vent. What I found out today makes me feel so much better, but she actually is on the vent for back up support only. The nurse said that the vent is turned down low and "only" if the apnea acts up and she stops breathing, will the vent kick in for support. When we went up to see her, she wasn't moving around and just seem so pieceful. I am glad that she is getting some deep sleep to help her in every other facet. We always follow up with a phone call at night to see how the rest of her day went. I actually just got off the phone with the nurse and the only thing that is different is that she lost an ounce. So right now she is weighing 1 pound, 2.13 ounces (every little counts, haha). I guess she burned too many calories yesterday with all the sleep apnea. Hopefully tomorrow we will see some more weight gain. Well, I guess boring news is good news. Like some have said it very well...there are good days and there are bad days. I am pleased to say that today was a good day. Goodnight everyone as it is time to get back to my icecream :) and I will touch base with hopefully more good news tomorrow. Thanks to EVERYONE for ALL the prayers. Words can't be found to describe the appreciation.
7/4/2008 9:21:00 PM
7/4/08 - HAPPY 4TH OF JULY!!!
That is a smile and I am sticking to it!!! Happy 4th of July everyone! I hope everyone is being safe tonight and enjoying some fireworks. We all just got back from shooting off some fireworks with Aimee's family. It sounds like a war is going on right now by our house though. Our house is surrounded by three major attractions (Carowinds Amusement Park, Knights Triple A Baseball Stadium and Lake Wylie), who all set off professional grade fireworks. Today was a somewhat of a mellow day. Kayleigh is 30 weeks old today. We got the results back from the blood culture and there is no infections what so ever, so they took Kayleigh off the antibiotics. Early this morning, she was having several more bad spells with the apnea, so they switched from SIMD mode, which is when the vent takes over incase Kayleigh has a apnea spell to Pressure Mode, which forces a little air in to her so it minimizes her bad spells. They don't want the vent to take over completely because they want her to get used to trying hard and giving those lungs a good workout. Even though she struggles, it will help her in the long run. I just hope she finds a happy medium, but like they say over and over, it is an up and down battle. The scary part of the day was when Aimee went in to visit her. She was hanging out with Kayleigh and she decided to have an apnea bout. We have seen it before, but she would quickly recover by catching her breath. This time around, she didn't catch her breath so they nurse had to "bag her," meaning she had to use the manual pump to force air in to Kayleigh's lungs for her to breath again. Wow, can I say stressful? The thing that stinks is that Aimee had to see that because she is already a nervous wreck. Acutally, we both are a neervous wreck, but I would have much rather taken on the heart failure than her. After that bad spell, Kayleigh went back to normal and when I went it with Allyson, she was doing great. Other than that, she did lose a little more weight today. She is now at 489 grams which is just over 1pound 1 ounce. Her color looks great and she just seems healthier overall. Thanks for all the prayers and thank you to those who have gone the extra mile to put us on the prayer lists at their church. That is just amazing and we are so blessed to have met people like you all. That has got to be a smile :) With Love, The Freemans
7/5/2008 9:03:00 PM
7/5/08 - A New Best Friend
Kayleigh's new best friend is a webkin named Brittany. A few months back, Aimee and I went to get some Webkins for Allyson and Brandon. We had planned at some point to get Kayleigh her first stuffed animal, but we didn't realize we were going to come across the perfect best friend that day. Everyone has their first stuffed animal or doll that is their best friend. Mine was Ellie, a little grey elephant that I still have to this day. Aimee had her first best friend which was a doll named Amie. For those who don't know Brittany. She was a Cocker Spaniel that my family had for more than half of my life. She was our best friend and she unfortunately passed away last year. Kayleigh will never get a chance to personally meet one of the most special friends in my life, but she will befriend a splitting image stuffed animal of her. The cute thing is that Brittany is a little bit bigger than Kayleigh is right now. We were not able to put Brittany in the isolette for safety reasons, so she is sitting right outside waiting for the day they can cuddle together. Kayleigh had a good day today. Since being put on the vent, her apnea bouts have lessened. She only had a couple desats all day long which is greeeeaaaat! She dropped 7 grams from yesterday, but they started feeding her today to see how she does with that. They are feeding her one (cc) every six hours. She did have a moderate poop this morning, so we are hoping that will continue since they started to feed her. I would hate to see her stomach back up again. Some tests were done and they realized Kayleigh has a slight thyroid problem and they have already started her on medication. The Resident that was in the delivery room with us came in to talk with us today. She seemed really positive and felt really great with Kayleigh's stats. I can tell when talking with her that she seems very impressed with the whole scenario. That is a good feeling! Tomorrow, Aimee and I are heading to church to see Wade and Ferris Joye. They are the proud parents of Liana and Adleigh. Liana is Kayleigh's neighbor in the NICU, so we will be hanging out with the Joye's for quite some time while residing there. Their church is having a special about them and their experience through this roller coaster ride of life. We are really looking forward to it and being there for them as we know exactly what they are going through. You can read their story by clicking on their link on our main page. Thank you all for your prayers and keep praying for more days like today. The Freemans
7/6/2008 3:58:00 PM
7/6/08 - What A Beautiful Day!
I can hear that song playing in my mind over and over after the excitement Aimee and I just had. We went up to the NICU for a couple hours and it was a blast. Normally we would be spending all our time watching Kayleigh sleep, but not today. She was wide awake and the most active we have seen her yet. As you can see in the photos, she is off the vent and back on the nasal cannula. They took her off the vent and put her on the CPAP for an hour this morning. They noticed she was doing even too well to be on the CPAP, so they moved her to the nasa cannula. So instead of one step forward, we took two steps forward. Let's hope that she can keep it up! One of my favotire moments today besides getting to hold her hand for a little bit, was when we gave her a pacifier and she was actually sucking on it as best as possible. The miniature pacifier was still a little too big for her, but she would suck on the tip of it before it just fell out of her mouth. We tried to prop her hand up there to hold it in, but most of the time we would have to hold it for her. So the best part was holding it in for her and gently rubbing her head. I was in love!!! Aimee said she knows that look I was giving Kayleigh because it is the same "love" look I give her. Other than that, Kayleigh is doing great. When she would have her apnea bout, she would pick herself back up really quick without any help. That is what we want her to do and she is doing great today with that. I was able to change her diaper and wipe her pen tip size poop off her bung-holio. The photo of her crossing her legs is a splitting image of her Papa "G", which is Gary Freeman, grandpa or also known as my Dad. When he is on the phone with anyone in his chair, you will see him cross his legs like that. I can also start to see a little of Grandma in her too. The only reason I say that is because she is the only one in our immediate family that has blonde hair and it looks like Kayleigh's hair is a little blonde too (Although it may be peach fuzz). No offense to any blondes out there, but Aimee has the burnette hair dye ready for when she gets out of the NICU. ha-ha! Aimee and I went to Elevation Church for the first time today. It was so wonderful. We were able to see Wade lead in worship, which I must say he does a fantastic job!!! God has certainly blessed him with talent as well as the rest of the band. We bought a cd and listened to it all the way to the NICU and back home. At church, Wade was able to tell his story about his two little preemie twins, Liana and Adleigh to all the members and what an amazing story it is. I ask of everyone to please pray for them too. Wade and Ferris are great people and we are blessed to have met them because I think we found a new church home :) Today was a beautiful day! God Bless our little miracle and the way HE works in our lives. The Freemans
7/8/2008 11:30:00 AM
7/7/08 - Just Laying Around
First of all, I am sorry for not posting last night. I had a really good reason for it. Aimee and I had taped and watched the finale of The Bachelorette. We were so mad that Jesse won, he is such as dork. ha-ha! Anyways, check out that first photo of Kayleigh. It looks like she is laying out at the beach. That is so darn cute! Also, the last photo really shows the hair that is coming in. Aimee and I are still back and forth as to whether it is blond or brown hair that we see. The photos looks more brown, but there is a good mixture of both in person. She had a really good day yesterday. Not a whole lot happened so that is great. She did desat a couple times, but was able to recover well on her own. She was also a little whiney, which her little cry makes you feel all sappy inside. I got to change her diaper again and take her temperature. I was supose to get to Kangaroo Care her yesterday, but Aimee and I think the nurse was too nervous to do it. When we sprung it on her, she was hesitant to say yes. She took about an hour to do another baby's vitals (probably hoping we would leave) and then decided she didn't like where her temparature was to be able to do it. That was okay though. I would rather have someone more confident because I am going to be the nervous one. We spoke to the nurse on the phone this morning and she said that I could do it today, so I am stoked!!! I will have some good photos tonight for you. Woo hoo! I get to hold my little girl to my chest for the first time today :) Aimee was able to squeeze out a CC of milk yesterday and that is the most she has been able to produce so far. It is not a lot, but it sure is progress! Keep working hard beautiful!!! Thank you again for all of those who have sent gifts. We really appreciate it so very much!!!God Bless! The Freemans
7/8/2008 7:21:00 PM
7/8/08 - Kangaroo Care!!!
Since Aimee is having a hard time producing milk, we figured it would be the best thing for Aimee told hold Kayleigh today instead of me. I know she is working really hard pumping every 2 - 3 hours through the night and if this is one of the best things for Aimee and Kayleigh, then I am completely fine giving up my spot to help my girls out. I am glad I was able to get some good video of the Kangaroo care so you can see Miss Kayleigh in action. Turn up the volume and you can hear her whimper when the nurse brings her over to Aimee and lays her down. She was just so precious lying on Aimee today and she did really well for over 30 minutes with out a desat. Although, it got to a point where she started having troubles though, so we had to put her back in. I just think she was getting tired and cranky. That pink beanie is just so adorable on her.
But, Not for me :( Overall, she had another really good day and they have increased her food intake. Aimee was a able to feed her through the tube today. She is now receiving one "cc" every 3 hours, instead of 6 hours. Since they've increased her food, we are hoping to see more poops and maybe a little bit of weight gain. I got a really good idea about doing size comparisons so when she gets older, she can see how small she really was. If there are any other good ideas/tips that we should do, please let me know.
Other than that, enjoy our video and keep praying for our Kayleigh :)
7/9/2008 11:19:00 PM
7/9/08 - Home Makeover!!! Today was yet another great day for Kayleigh. We are just completely pumped up for her right now. I know they said to expect some highs and lows, but we just hope to continue to see more highs than lows. Aimee and I took the kids up to see Kayleigh again today and they seemed to be more excited this time around. I think it was because Kayleigh was up looking around with her eyes wide open. Brandon was able to rub her head to feel how soft and smooth her head is with all that peach fuzz growing in.
The nurses said that she had a couple desats this afternoon, but when they turned up her flow from 3 to 4, she stopped having them. The great thing about it, is that the oxygen is not the problem. I think she is close to or at 21%, which is what we breath. The problem she has is that her lungs are so small, they are not strong enough to suck in the air so it is easier for her to forget and not breath sometimes when she is sleeping. Since they turn up the flow, it practically pushes the air in to her lungs for her. They also increased her feedings and she is tolerating it very well. That means a lot to me because I want her to grow from the tiny little peanut that she is. She did increase some weight though from dropping a couple ounces over the past two days. She is currently weighing 531 grams (1.273 lbs). We are really excited about her progress so far. Aimee and I put together a sign and some photos to decorate her incubator with. In the picture above, you can see some favorite photos that we chose in the background. So when we are not there, she can still see us. I put a lot of work in to that collage with her name on it. I guess I will settle for nothing less than perfect when it comes to my precious daughter. If you can't make out the photos on the collage, Brandon and Allyson are the ones up top with Aimee and I, but down below are Georgia (Our Weiner Dog), Myrtle (Our Turtle) and Sam (Our Border Collie Mix). They all can't wait for Kayleigh to come home and play with them. Kayleigh, we all love you very much and we can't wait to bring you home. We will pray and pray and pray for God to take care of you and all the other babies. You are certainly a miracle and proof that God is in control. Thanks everyone for all your prayers! The Freemans
7/11/2008 12:30:00 PM
7/11/08 - Sorry for not posting :-o Okay, I got yelled at by Aimee and I think I scared my parents to death because I didn't post yesterday. I did however comlpete chapters 5 and 6 of the book I am writing about our experience, which will then help other familes in the same situation keep hope alive. I was up until 6 this morning working on it so I am sorry for not posting. We went up to visit Kayleigh yesterday afternoon for a short amount of time. We had the kids with us and on those days, it is harder to keep them patient while we are in the NICU. Kayleigh was desatting more yesterday than she has been over the past couple days. They think it was due to the inrease in food, but aren't totally sure. They tried increasing her flow, increasing her oxygen, decreasing her food, but nothing seemed to work. She is bringing her self out of the plunges, so that means for something good. She slept the whole time we were there and looked so peaceful all wrapped up. Kayleigh also has a new neighbor who is practically sharing the same isolette because they are packed in that little room. They said the other baby shouldn't be there long. I am sorry if I sound like a complainer, but I guess I am already getting over protective of my little girl. ha-ha. On the oher hand, Mommy is not too happy either!!! She was diagnosed with slight Hyperthyroidism and was placed on a medicine to control it. When Aimee was pregnant, she lost 10 pounds, but was never sick. She then gained 5 pounds back before Kayleigh arrived. Since being on the new medicine they gave her, she has gained 7 pounds in the past two weeks. We have been going back and forth with the Doctors to see what is going on. We wanted to know if this Hyperthyroidism was only a problem when she was pregnant and the hormones have caused the inbalance. We cut back on the medicine for now and will continue to watch to see what happens. Aimee is not thrilled about the weight gain at all and we don't need her pulling out more hair because of the stress. I would still love her if she was big and bald though. :) I will update tonight after we get back from the hospital. Please keep your prayers coming and thank you to those for sending the gifts. Thank you notes and pictures will soon be sent out. We love you all!!! The Freemans
7/11/2008 9:11:00 PM
7/11/08 - One Step Back
Did you think Kayleigh was going to let us have three good days in a row? NOPE!! Just look at that picture - she is pondering what kind of trouble she is going to cause next. If you have followed her story from the beginning, you will very well know that Kayleigh doesn't let us rejoice in good news for long. This morning, Kayleigh decided to have numerous desats which eventually ended with her being put on a bubble CPAP, which to me looks like a normal CPAP (with a head gear) but with Bubbles. Actually the bubbles are there to help Kayleigh remember to breath as it is suppose to startle her brain receptors. Don't ask me how it does that though. Even with the new Bubble CPAP, she was still having desats, so they drew some blood to see if she had an infection and is sick. Those results came back negative, thank goodness. As of right now, she is still having desats but if bringing herself out of them quickly. They don't seem too concerned about it and decided to increase her caffeine to see if that will help. Please pray that they will find out what is the root of the problem and fix it quickly so Kayleigh can rest easy and focus on her growth. Speaking of growth, they increased her food and she is currently weighing 566 grams (1.397 pounds), so we are making improvements there. Kayleigh had three poops marked down today, so we are extremely happy to see the food is working its way through. The nurse also said her stomach is soft and her color is looking great, meaning her digestive system is working normal. Let's hope that she gets a lot of rest tonight and tomorrow becomes a much better day. We need your prayers everyday. We are positive that your prayers are the only reason she has made it this far. Let's all pray that she will get control of her breathing so she can move on and focus on her growth. God Bless,
The Freemans Aimee worked on a project for everyone to see ALL of the photos we have taken of Kayleigh and put it to music. Please click on the photo link below to see it :)
Kayleigh
7/12/2008 11:10:00 PM
7/12/08 - In Need of Prayers!
Kayleigh started her day off with many desats back to back which caused the nurse to call in some respiratory specialists to see if they could figure out what may be causing her to have so much trouble. The only suggestion they had was to change her position to see if they would help Kayleigh. It did for a little bit, but later in the afternoon she was back at it again.
The crazy thing that is shocking the Doctors is that Kayleigh is not having the normal type of desat where her oxygen slowly drops from 95-70-50, and then the heart rate drops shortly beind that. Kayleigh is dropping quickly from 95-50-10. At times her oxygen is dropping in to the single digits within a matter of seconds and then the heart starts to drop within 30 seconds after that. Sometimes the heart doesn't even drop at all, so that is what is concerning the Doctors. She is quickly bouncing back which is good, but sometimes she doesn't and needs help. They did some tests today which possibly confirms that these severe desats are caused by the VSD (hole between chambers) in Kayleigh's heart. The hole is a moderate size, which moderate can mean large for Kayleigh because her heart is so small to begin with. They are doing an Echocardiogram tomorrow to get some more answers, but they noticed that the VSD is causing the lungs to take on fluid due to the heart overworking itself. The fluid is then causing Kayleigh to have trouble breathing and the VSD is causing an issue in transfering a sufficient amount of oxygen to the body. Basically, they both don't go hand in hand and is causing the severe desats. The good news is that the hole will not get any bigger and can close on its own. Also good news is that they can do heart surgery to close the hole if the medicine does not work. The surgery will both limit the fluid in the lungs and help the heart distribute more oxygen to the body. The bad news that if she needs the surgery to close it, she is no where near the size to have the surgery performed right now. They are needing her to be atleast 4.5 lbs. That is over three times the size she is now (She weighed in at 550 which is 1 pound, 3.4 ounces) The new medicine they started today is called Lasix. It is a diuretic that will help extract the fluid from her lungs. The other medicine that they will start
Monday is called Digoxin and that is to help the heart boost its performance so she can get more oxygenated blood flow through the body. If the medicine does not work like they want it to, they may have to do surgery to insert a pulmonary band to stop the fluid from going in to the lungs. So right now we are in a game of waiting. I am anxious to hear what the Echocargiogram is going to tell us tomorrow. I will be sure to let you all know something as soon as I find out and can post. ***For those who know about this or have been through this situation, please post and let us know your experience. ***For all the others, please post (in the comment section below) a prayer for Kayleigh that this issue will be quickly resolved by the hands of God and that Kayleigh will quickly grow out of this severe desaturation phase. Thank you everyone and God Bless!!! The Freemans
7/13/2008 7:40:00 PM
7/13/08 - Our New Goals
Here we go! The echocardiogram came back today to clarify one thing, Kayleigh will need surgery. The (VSD), hole in her heart will need to be closed because medication will not be able to get the job done. So as of right now, they have increased her feeds to deliver more nutrients (Carbs, Fats and Proteins) without increasing level of food they give her. So basically, she is going to have a high calorie diet packed in a small dose. The Lasix will be used to extract the fluid out of her lungs until she is big enough to add the pulmonary band which will take over that job. Our goal is to get to 1000 grams (2lbs 3.3oz) so the Doctors can do surgey to add the pulmonary band. Once that goal is met, our next goal is to make it to 2000 grams (4lbs 6.5oz) so they can open the same incision to repair the hold (VSD) in her heart. A nurse said that we should expect an increase of 25 grams a day. If she hits that mark everyday, our first surgery will be around 18 days from now. To help Kayleigh rest and grow as quickly as possible, they switched her over to the ventilator this morning. She was so peaceful today that we just wished they would have left her on this the whole time. The problem is, the vent is more likely to cause long term damage to the brain and respiratory system, maybe others. So, the Doctors felt it would be in the best interest of Kayleigh to take that chance, rather than not grow quick enough and die. I completely agree with that because I have heard of many preemies being on the vent for a long time and nothing major happen. We will just put that in God's hands and let him take charge. So right now, we are playing the waiting game and praying for growth. The stars have to align for everything to work out just perfect, but God has performed many miracles and we know he will continue to watch over Kayleigh through this new battle. Kayleigh justs wants to make things interesting, doesn't she??? She has already racked up three years of time outs for all the other crap she has pulled. Please keep us in your prayers as growth is what we need more than anything. Man, I feel like we have been fighting this battle with her size from the beginning. We hoped she would make it to a certain size to be viable when she was inside Mommy and now that she is out, she has to be a certain size to
stay alive. Aimee and I were slaves to the ultrasound measurements for 12 weeks and now we are slaves to the incubator scale. I am sure 8:00 everynight will be the highlight of our day because that is when they will weigh her. Watch, my luck she is going to be a linebacker on the high school football team. ha-ha. Thank you all for your prayers, gifts and love. The Freemans
7/14/2008 9:25:00 PM
7/14/08 - Happy 3 Weeks Old
Okay, I am going to give you all the bad news quickly and then tell you some good news because we are going to stay positive and not let the bad news effect our attitudes. Sorry I didn't take a picture today because I wanted Kayleigh to rest and I was beyond terrified to turn on her light or use the camera flash for my pleasure. When Aimee and I arrived to the NICU today, the nurse practitioner came in to talk with us. She had went over everything we already knew (which I posted yesterday) and then a couple other pieces of information. She said that Kayleigh's heart appears to be a little more enlarged today that it did yesterday. Beyond her lungs starting to fill up with fluid, her right lung has some sacs that are not expanding, which she explained could be collapsing from working too hard when fatigued. The NP said, both the lung and heart issues could be signs of congestive heart failure. That is not good!!! Along with other bad news, they are doing blood cultures because they think she may have an infection of some sort. That means they can not feed her until that comes back clear because it could cause the infection to worsen. So no food = no growth. Now the good news! They have started the medicine to help with her heart, so we will know if it is working within 24-48 hours. They have also started the medicine to remove the fluid from her lungs. So lets pray that both medicines will help take care of these issues. The other day, her weight was 550 grams and it jumped to 635 grams yesterday, which seemed a little weird, but they did give her a blood transfusion. Today her weight was 580 grams which is still up from the other day, so we are moving in the right direction. 580 grams is 1 pound 4.5 ounces. Kayleigh had only three desat episode all day today and it was during her cares. I know she is on the vent and that helps keep the desats from happening quite as much, but I am so happy to hear she was able to rest her body today. Earlier today, the nurse had told us her oxygen was increased to 50% due to her blood gasses coming back irregular, but since then they have decreased it down to 38%. Hopefully that continues to decrease because her settings have normally been around room air (21%) the whole time. They also changed her vent settings from 18 to 15, which I think means it is the pressure forcing air into her lungs. All I do know is that she said it was good, so if it is good then I am happy! ha-ha. For the most part, she seems to be doing better since early this morning. That to me sounds like improvement. On another good note, Aimee has finally covered the bottom of her container with the milk she has produced. That was a goal ever since she got her first drop to make it into the bottle. We know that Kayleigh needs mommy's milk more than anything, so we are so happy to see that she is producing enough to help. It seems like more and more is coming in each day. Bless her sore boobies though, she has been pumping every 2-3 hours on the dot all the way
through the night. She is such an awesome Mommy!!! Our prayer request: I asked the NP today if this was a common situation amongst preemies and this was her answer, "Yes, it is with a (normal size) preemies, but it is even tougher on (micro) preemies like Kayleigh because they are just so small" Size is against us and if we can't feed her, she isn't going to grow. So please pray that she will not have anything come between her and her food anymore, so she can grow and grow quick. Right now, we are dealing with a balancing act of events. Although, if she doesn't grow quick enough, we could very well lose her. We are not going to let that happen!!! We all need to pray and pray the same thing, so God will work in her life. Kayleigh is a fighter and we all know that from her past hurdles, but we need her to fight now more than ever before. Ask God to give her enough strength to make it through yet another battle.
7/15/2008 8:40:00 PM
7/15/08 - Look at my hair!!!
Wow, Kayleigh's hair is really starting to come in more and more each day. I still think it's blonde. ha-ha
Today was a better today than the past couple days so I have to be excited about that. They discontinued the Dopamine that she was on because her blood pressure regulated and she peed a lot through the night. Here is the great news of today. The x-ray that they took of her showed that her heart was not as enlarged as it was yesterday and there was less fluid build up in her lungs. They have increased her IV fluids and started to feed her again. That is amazing news and I hope that it continues to progress. The rough part of today was that she was showing a lot of signs of irritability. She was on the vent and desating like crazy, but she wasn't desating like normal. She would drop down to around 50 and then it would take her forever to get back up. They had to bag her quite a few times today which means they had to pump air into her lungs manually. They just couldn't put their finger on why she was struggling. When Aimee and I were there, they decided to reposition her and remove her vent tube. The Doctor that was watching thought he would like to try and see how she did on the Bubble CPAP again. I was not happy because I knew she would definitely not get any rest then. The Doctor figured she was just trying to refuse the vent all together. So within an hour, she was put on the Bubble CPAP, then changed to the Conventional CPAP and then back to the Vent because she was not accepting any of them and really doing poor with her breathing. It was very stressful to watch, so Aimee and I left to go down to the cafeteria with Wade and Ferris to eat dinner. It is so awesome to have friends in the NICU like them to either vent to or rejoice in good news. When we returned to see her knocked out, it was an awesome feeling. Her vitals looked good and she was sound asleep. They gave her some pain medicine to help her rest and gain her energy back. Poor girl was so wiped out, that he vent was completely breathing for her when normally she over rides it. It is going to take some time to get used to this stress, but I am glad that we have all of our support. Aimee and I have been getting wonderful emails from so many people. To hear all the people who are out there following Kayleigh's story and praying for her just overwhelms me with joy. I love to check my computer to see who has posted to say hello and the miracle stories they share. We thank you so much because your emails and prayers are what gets us through the days. This is the hardest thing that Aimee and I have ever had to deal with in our lives. Thank you all for being amazing to us. You are all truly a blessing from God. 7/16/2008 10:51:00 PM
7/16/08 - Quick update I just wanted to give you a quick update so no one kills me for not posting at all. Brandon, Allyson, my parents and I went to the beach in South Carolina today to meet up with some of my California relatives. It was a very needed one day getaway. Aimee had to stay behind for an appointment and was truly missed. Since we all came back looking like lobsters, I don't think she was too upset for not going. I am hurting badly as I feel the sunburn in my finger tips while I type!!! So, I am going to make this quick and let you know that today was a good day. Kayleigh had a few desats, but was able to rest peacefully all day today. Her blood gases came back good and she gained a little weight. She weighed in at 613 grams which is 1 pound 5.6 ounces. That is up from yesterday so we are very happy to see that. Other than that, she is doing well. I can't wait to go see her tomorrow. Even though I had a well needed break, I miss her deeply. Thank you all for your
prayers and emails. I got quite a few today and enjoyed reading them tonight. It just makes me feel so awesome to see all those comments. I truly appreciate every single one of them.
7/17/2008 8:17:00 PM
7/17/08 DADDY GETS KANGAROO TIME!!!!
First of all, I am in heaven after the day I had today. I finally got to hold my daughter to my chest for the first time ever. It was by far the most wonderful feeling in the world to hold Kayleigh in my arms and feel her move around. She was so comfortable laying with me that her sats were higher than she was in the incubator. That made me feel so amazing because my worst fear was for her to start desating and me be too afraid to hold her the next go around. It went perfect, so I was completely happy and I can't wait to hold her again. I actually got in a grumpy mood when I left because I didn't want to put her back :( ha-ha. Well, I would not have gotten the chance to hold Kayleigh if she had a bad day, so I am pleased to tell you all that her day was wonderful. She had only had a few minor desats all day long. Her blood pressure was off a little, so they brought in the Dopamine to start that again. By the time they set it up and had it ready, she leveled her blood pressure back out and was fine for the rest of the day. The Dopamine was aso used to help Kayleigh pee, but she had a very wet diaper all day today. They think that the Lasix (diuretic used to extract fluid from the lungs) had something to do with that too. Out of all the times I changed her diaper, she never had a poopy diaper. But when Aimee changed her diaper today for the first time ever, Kayleigh had the biggest poop she has ever had recorded. I was shocked when I saw it because I didn't realize she could poop that much. I was curious on how the seeds got in there. (Sorry for being gross) ha-ha. Since they started her back on her feeds yesterday, if everything continues to go well, they will increase them tomorrow. At the beginning, Kayleigh was diagnosed with a thyroid issue and today they didn't feel like it was an issue anymore and took her off the medication (Synthroid). They didn't weigh her this evening because they did a blood gas at 8:00 and were moving her around more than they wanted to. They will weigh her around 2:00AM so I will know tomorrow for sure if she has grown anymore. Aimee and I think that her hands and feet seem to be growing alot because they look much bigger. Her hair is growing in more too and Aimee is convinced it is brown and not blonde. It did look darker today than yesterday, so maybe. They also measure Kayleigh every Monday. This past Monday they measured her at 12 inches long. She has grown 1.5 inches in the past 3 weeks. Now she just needs to put on some meat. Please pray for Wade and Ferris as one of their little girls (Adleigh) is going to have heart surgery tomorrow to close her PDA. Both of their girls have been through a lot and are continuing to fight through every obstacle put in front of them. God is certainly working miracles in their life and we need to continue to pray for them. God Bless The Joye Family!!! The Freemans
7/18/2008 6:48:00 PM
7/18/08 - So Peaceful and Comfy
Aimee, the kids and I went up to see Kayleigh earlier in the day today because we had an appointment on that side of town. Kayleigh was sound asleep and doing really well. Her alarm was going off, but only because her sats were high and her oxygen needed to be lowered. That is an alarm I hope to hear more often. Since she had a good evening and was doing good all day, they increased her feeds from 1ml to 2ml. There was a new nurse today and she was telling us that Kayleigh had a bad night, but we dug a little deeper to find out she only had 3 desats all night long. I don't think she knows Kayleigh all that well because that is really good for her to only have 3 desats. Kayleigh also had a chest x-ray this morning and it showed that the fluid in her lungs looked much less than usual, so take a deep breath of fresh air because that is some delightful news. Let's just hope that it stays that way so she can grow and get to the weight she needs to be to have the surgery. When Aimee went back to see her, she noticed her eyes and nose were a little black and blue. The nurse said they were going to test her hemoglobin to see if maybe she needs more blood. If that is the case, she will get her fourth blood transfusion. I just called up to get more news. She is doing really well and resting. Her weight went down a little, but the lasix medication they were giving her is going to cause her to fluctuate a little. She weighed in at 642grams which is 1pound 6.7 oz. She did have a couple poops today too so she is tolerating the increased feeds. They are going to test her blood gases soon to see if they can wein her even lower on the oxygen. Over all, she is having a really good day today. Also, take a look over to the right toolbar as today I helped Brandon and Allyson create their own blogs so they would feel a part of everything that is going on. I can't imagine how tough it is for them to see their little sister in the isolette and have to wait for a long time before they can play dress up or wrestle.
(Especially the wrestling) Brandon and Allyson have been so wonderful when we go in to the NICU and they ask very good questions. It is a fear that we may not be able to give them the attention during this hard and stressful time. Today I was able to spend a lot of time giving them their "own" (.com) They were just thrilled to see they are on the internet, but now they have their own website. Please do me a huge huge favor and post a comment praising them on a how wonderful big brother/big sister they are being for Kayleigh. It would mean a lot for Aimee and I, but I am sure they will think it is the coolest thing in the world. Plus they have checked constantly every five minutes to see if they get new visitors. ha-ha.
7/19/2008 5:07:00 PM
7/19/08 - Back on CPAP - Woo Hoo!!!
Doesn't she look like a scuba diver? Well, after a good night last night, they decided to put her back on the bubble CPAP this morning. I spoke to the Doctor in depth about how they decided when it was time to switch from the vent to the CPAP to the Nasal Cannula, especially when our main goal is for her to rest and focus on growing. He said that Kayleigh will not burn enough calories to make a difference if she has the apnea episodes, even when it appears she is not getting sleep and wearing herself out. The most important thing for her to grow is the amount of feeds she will be getting as long as she can tolerate it. So the reason she wasn't growing was not because she wasn't getting enough sleep, it was because she wasn't getting enough food. The good news about her feeds is that yesterday they increased her feeds from 2 to 3ml and today, they are increasing it to 4ml. So she will get that much every 3 hours. That will help her grow. They are just going to keep an eye on Kayleigh and make sure she can tolerate that amount of increase or it could cause back up and cause infections. They don't want to give too much too soon. So with speaking to the Doctor, it cleared up my worries about whether or not her breathing assistance is going to affect her growth. Overall, her day is going great so far. She was doing well on her breathing and not having any issues with desats. Being that the bubble CPAP is almost too big for her, it kept falling out of position, so it caused Kayleigh to not get the oxygen she needed. Her sats would drop, but then her heart rate wouldn't, so we knew right then and there it was out of position. They had to wrap it around her head and even put a beenie on to strap it in place. The picture almost like she is uncomfortable, but she is doing just fine. They had to get a smaller beenie because the one you see in the photo was too big and it almost covered her eyes completely. The funny part of the day was when I changed her diaper. She had peed in her diaper, but there were only small small smears of poop. As I changed the diaper and wiped her butt with the wet cloth, I must have triggered her bowels because she had an explosive blow out. She almost squirted me in the process. It was so funny, I was almost in need of a changing too. So we threw on a new diaper quickly so she can finish her business. Aimee is also doing a great job. This morning, she had the most milk she produced so far. It covered the bottom of her little cup about a half of an inch deep. That is a major improvement. She was so blessed to have met someone on the message board who sent her some Domperidone at no charge to help out and it seems to be working. We are so greatful because to order it, it would have taken a couple weeks and we didn't have time to wait. Kayleigh needs this liquid gold as quick as possible if we need her to grow and now Aimee is producing enough to make that happen. It is amazing how God makes everything work so perfectly. We are so proud of Aimee!!! We are happy that today was another good day. I know that my posts always seem cheery, but I am really good at hiding my emotions. To be honest with you all, this is the most stressful situation I have ever been in during my entire life. It is so hard to see your child, who you can barely touch because you are afraid to disrupt her, let alone hold her in your arms like a newborn baby should be held. I am very impatient as I want her home with me NOW!!! I am so afraid to go in the NICU to find out bad news that she is not doing well or she may not even make it. The rollercoaster is the hardest part. One day she could be absolutely fine and the next day she could be fighting for her life. It is so hard playing this waiting game and balancing act of medicine. The events that have happened over the past 14 weeks with ALL the ups and downs of her "not going to survive" to "Holy crap, she made it" has really played a toll on me. You just wonder and ask God everyday, "What is the purpose of this and how is going insane going to help me help others." It has gotten to a point where I have been getting angry over the littliest things. I am sure that there are a lot of NICU Dads out there that try to act strong for their family, but are breaking down inside. Please, either tell me to suck it up or what I can do to help make things easier on my end. I wish you all a wonderful weekend and God Bless! The Freemans
7/20/2008 3:10:00 PM
7/20/08 - 3 IN A ROW!!!! Three great days in a row is helping Mommy and Daddy's hair grow back. Sorry I didn't have any photos today. She was in the same exact position as she was yesterday, with the bubble CPAP and the beanie almost covering her eyes. The only thing noticeably different was her cleaner diaper, especially after that big poop she had yesterday. But I don't think I should take photos of that. ha-ha Kayleigh has been doing great today, only recording one desat which hung around the 60's. Normally, she goes down to the 40's or even that one day she was down in the single digits. So we are much happier to see her where she is at. They weined her oxygen down to 25%, so hopefully she can hang out there comfortably for a while at that rate and GROW!!! If she tolerates her feeds today at 4ml, they will increase it to 5ml tomorrow. They said that if she continues to do well with the food, their plan is to increase it every 24 hours. They are going to do some routine blood work later on and they'll also measure her so we can see how much longer she has gotten. Aimee and I can tell that her cheeks are starting to fill in and her hands/feet are really getting bigger. She weighed in at 654 grams last night, so her weight increased just a tiny bit. Since she has had her beanie on for three days now, Aimee thinks that a lot more hair will appear when they take it off. Just last week, she was getting more and more peach fuzz each day that went on, so we are excited to see what it looks like now. For those who are praying for Adleigh, I wanted to give you an update and let you know her surgery went great and she is recovering well. You can follow their story also as I have a link over on the right tool bar. Liana shares a room with Kayleigh and Adleigh is just over in the next room. Every now and then, Liana and Kayleigh both like to keep the nurses busy by acting up at the same time. I guess they like fighting over attention. All three of them are a true blessing from God! Thank you all and I will try to get some photos tomorrow. The Freemans
7/21/2008 8:07:00 PM
HAPPY 4 WEEKS OLD!!!!
4 WEEKS OLD!!! Where has the time gone? I just hope the rest of the time goes just as fast. Today was a boring day and we all know that boring days are awesome! Kayleigh's sats were good all day with only a few ups and downs with her breathing. They still have her on the Bubble CPAP, but they weaned her oxygen down to 26%. When Aimee and I went to visit, one second she would be satting high and then the next second, she would satting low. She was just all over the place. Aimee was able to kangaroo for just about 10 minutes before Kayleigh started fussing and we had to put her back. We were just shocked that she was able to kangaroo in the first place because she had that big head piece on. She looks so cute though, but we are ready to see that pretty face again. The nurses did increase her feeds today to 5ml, but she only weighed in at 603 grams tonight. The nurse said she weighed her without the CPAP on so that is probably why it was around 30 grams less than yesterday. I wish they would all do it the same way though or atleast weigh her both ways. We were able to sit down with the family planner today and go over some things. The cool part was, we were able to write down Kayleigh's likes, dislikes, concerns, and goals that will be placed on Kayleighs isolette for all the nurses to see. The biggest problem we are having right now, is that we are learning the nurses and we are wanting them to know Kayleigh's story. We want them to know Kayleigh and understand that this baby wasn't suppose to be here. I don't want to pull anything away from all the other babies that are in there, but I want the nurses to understand that Kayleigh is OUR miracle. We have some primaries, which is awesome but we know that our primaries are not always going to be there. Most of them do, but we want everyone to care as much as we do. :) The planner was awesome and we are so glad to have her help us. Another NICU baby we have met through this journey is Parker. Parker had an ultrasound today to check for a possible hernia. Can everyone please include Parker in your prayers tonight. Parker was born at 29 weeks and has been in the NICU for 8 weeks so far. He is a cutie! I have included Parker's story over to the right on my tool bar.
7/22/2008 6:35:00 PM
7/22/08 - Daddy's in Love
Yes, I am so in love because I got to hold my precious little girl again today. Aimee took a great photo of her laying on my chest sound asleep. It was so amazing to feel her move her tiny little hands against my skin. She was satting good for fifteen minutes before she had a couple episodes where her heart rate and oxygen dropped, meaning we had to put her back. I could tell she really liked it when I hummed a song to her. I guess the vibration was comforting to her because she looked so relaxed laying with me. The funny part was when they put Kayleigh on my chest, she farted and you can tell something else came with it because it sounded raunchy. What is it with Kayleigh trying to poop on me? This is the second time! ha-ha
She had a really good day today. They increased her feeds to 5ml because she was tolerating the others very well. They have moved her lasix to every other day, which the lasix is helping remove the fluid in her lungs. Aimee and I noticed that her eyes and mouth seem to be much bigger. She yawned a
few times today and that mouth was huge. Aimee made a joke to the nurse saying that big mouths run in the family and I would agree. Kayleigh opened her eyes today and I could tell a big difference in size. This is the first time she opened her eyes for us in the past couple days, so it seems to me that things are starting to develope quick! We still have not gotten a chance to see her hair and how much that has grown over the past couple days. I can't wait to see that. The note you see at the top is a note from Kayleigh to all the nurses who take care of her. We want to make sure they know who Kayleigh is so they have an invested interest beyond normal care. I want them to feel a part of her family and to take pride in the work they do when they are with her. Hopefully it will help. We have picked up some primaries to take care of her when they are on shift that we really like and we added another great one today. We are so pleased with the primary nurses we have so far. I am sure Kayleigh is too :) I sent this out in an email today to people we updated while we were in the hospital. I wanted to add it to here on the blog as well incase the person we are trying to track down was not on that email list. Aimee received a call while she was at the hospital from a flower delivery place asking if we were going to be in that hospital room the next day. We told them we were not going to be there and we gave them our home address to send the flowers to. We did not receive the flowers at our home address and since they called Aimee on the hospital phone, we were not able to retrieve the number to call them back. So, if you didn't get a thank you note for sending flowers, please let us know as this person is you :) Aimee and I can't thank you all enough for all the prayers, gifts and love you have given us over the past several weeks. It means more than anything for people to reach out and contribute something for Kayleigh. She is going to be thrilled when she is older and finds out how many people were pulling for her through these tough times. Whether we have known you forever, or you just posted for the first time today, we love you all like family and are so greatful to have you in our lives. You all have shown the true meaning of love. Thank you so much! The Freemans
7/23/2008 10:00:00 PM
7/23/08 - Gett'n Blood
Here is what a blood transfusion looks like for a preemie. They have a device that automatically presses a syringe full of blood through an IV into Kayleigh. This will be her fourth transfusion so far, but she is doing really well with each procedure. We just got an update and she is doing fantastic. There were a couple desats earlier today, but nothing else since then. Aimee and I brought a really dark blanket from home to cover her isolette so barely any light can get in. This will not only allow her to get better rest, but maybe it is helping with her desats. They increased her feeds to 7ml today which is more than we thought, but we are not arguing one bit! Woo hoo. EAT Kayleigh EAT!!!! She weighed in at 690 grams tonight which is 1 lb - 8.3 ounces. Woo hoo. GROW Kayleigh GROW!!!! Because they increased her feeds, her poops are increasing too. She had 3 big poops today. Woo hoo. POOP Kayleigh POOP!!!! We are certainly blessed to see 4 wonderful days in a row!!! Thanks everyone for the prayer chains, prayer circles and all the other kind of prayers. I can see them working in Kayleigh each day. You all are a blessing to our family and please keep things going. Tell your friends, co workers and churches to pray, pray, pray!!!! When we are able to bring her home, we are going to throw her a welcome home party like no other! I just wish it wouldn't take Kayleigh several years to find out how many wonderful friends that are pulling for her right now. Thank you God for blogs! The Freemans :)
7/24/2008 11:49:00 PM
7/24/08 - We've Banded Together
Today was an amazing day in more ways than one. First of all, our wrist bands came in today and we will be sporting them around everywhere! I certainly will not be scared to wear pink now. I have been waiting for over a week for these bands to come in and I was so excited when they got here today. Second of all, Kayleigh had another awesome day. Are you sitting down??? I don't know if this was a huge fluctuation or just a crazy chance, but Kayleigh weighed in at 762 grams tonight, which is 1 pound 10.8 ounces. That is 72 grams more than yesterday. I am really looking forward to seeing what she weighs in tomorrow night to see if that was just an error or actually true weight gain. They usually will weigh her 2-3 times over and take either the median or average number. That is unbelievable growth though. They did increase her feeds to 8ml today and are you sitting down again???? They stopped her Lasix because they said her lungs are looking much much better. They are going to do another scan tomorrow to double check the fluid. Other than that, she had a few desats today but they think it is due to her CPAP positioning more than anything else. It will be seven days since we have seen her without the CPAP tubes and beanie on. We are ready to see her pretty little face so I can take more photos for you all. She has grown 4.2 ounces since she has had the contraption on, so we know she is going to look a little different when she gets it taken off. I have been reading a wonderful book that I want to share with you all. It is called "For the Love of Rachel" by David Loewenstein. It is about his families journey through the NICU and his daughter's battle with prematurity. I highly recommend it to all of you out there. I had the pleasure to converse back and forth with David this past week because I too am in the middle of writing a book about our journey. His book has been very successful and what better person to ask advice from than someone who has been in my shoes. I wish David and his family all the best. Thanks everyone for all your prayers and words of encouragement.
7/25/2008 6:35:00 PM
7/25/08 - Making Progress & AWESOME IDEA!!!
Today was another great day of progress. Even though Kayleigh is plugging away on the Bubble CPAP, her oxygen was weaned down to around 22-28% all day long. She only desated a couple times throughout the day, but picked herself back up. They said that if they can keep her below 30% for a couple days, they will try the nasal cannula again. There is definitely no rush though because we want to focus on her growth more than anything. They have increased her feeds to 9ml because she continues to tolerate the feeds really well. However they are going to lengthen the time to an hour that they feed her because they notice she desats more when it is given to her in a shorter time period. I guess it backs up and she gets a full tummy. She pooped a couple times today though, so that only means they will increase it again tomorrow. The more food we can give her, the quicker she will grow so we can get the surgery completed to insert the pulmonary band. The band is there to limit the amount of fluid build up in her lungs before we can do the surgery to close her VSD (Hole in lower heart chamber). We have to get to 1000 grams first for the band, but we are almost there. I just called and she weighed in at 759 grams which is 1 pound and 10.8 ounces still, like last night. The awesome news is, the respiratory nurses said her breathing is sounding great and that is why they stopped the Lasix yesterday. On top of that, the cardiologist have stopped the Digoxyn too because her heart is sounding good and she is not showing any signs of distress. Both of those medicines were used to help her apnea issues by pushing the heart a little harder to deliver oxygen throughout the body (Digoxyn), while removing the excess fluid in her lungs (Lasix). So now we will just need to pray that she continues to do well so she doesn't have to go back on those medicines. If she shows any sign of issues, they will do an x-ray and a echocardiogram to determine what to do. Aimee got to do Kangaroo care for about 20 minutes today which is more than before. We keep increasing it everytime we do it, so that is progress. We got some good photos and video, so I hope everyone enjoys it. I was able to set Brittany in the isolette next to Kayleigh to really show how tiny she still is. If you go to a store that sells Webkins, look at the Cocker Spaniel and you will get a true understanding of how tiny she is. ***There were several people that asked if we were selling the bracelets and at first we decided we didn't want to add another thing to our plates, but then we figured since so many people wanted one already, that we should do somewhat of a fundraiser for Kayleigh. So Aimee and I thought that we
would put the money raised towards something that Kayleigh could use when she comes home from the hospital and everyone who contributed could sport a pink bracelet to pull for Kayleigh. Also, what I think would be a great idea is to have everyone who contributed in the fundraiser, email me a photo of your family along with a note to Kayleigh so we can put them all in a scrap book. I think it would be really really awesome if everyone took photos with their bracelets on so we can use those photos. That way Kayleigh will always remember the people she had pulling for her for the rest of her life. We decided each bracelet would cost $5.00 and we will be putting in an order over the next week. So if you are interested, please click on this link - "Get a Kayleigh Bracelet" at the top right on the side tool bar. Don't forget to add your address so we know where to send the bracelets. Over time, I will let everyone who bought bracelets know the deadline about when to get your photos in along with your note. I hope everyone is doing well. Thank you all for your prayers and we wish you a wonderful weekend. If you get a chance, Brandon wanted me to tell everyone to check out his blog tonight as we did some home videos that will give you quite a laugh. We had a blast putting them together, so I hope you all enjoy. (Click here to see his blog)
7/26/2008 9:21:00 PM
7/26/08 - Our Hands
Today was another great day for Kayleigh. She is just amazing us all every single day and we are so blessed for the good days. She started her day off with some desats, but when the nurse changed her diaper, she figured out why Kayleigh was so upset. She had the biggest poop she has ever had so far. It is funny how we get so excited over her accomplishments, and right now it is her poops. She had so much, she filled up the diaper that doesn't even fit her in
the first place. After her diaper was changed, she straightened up and started to not desat anymore. We came up to see her this afternoon and she was getting her feeds at that time. She is now up to 10ml today. She seemed to be cranky though during her feeds. She didn't liked her arms or hands to be touched, but if you cupped your hand over her body, she was completely fine. As you see in the photo above, I was able to snap a picture while her hand was resting on mine. Her hand was more on top of mine, but by the time I grabbed the camera and took the photo, she moved it. ha-ha. I just called to get her weight and since she pooped quite a bit more than usual today, she dropped a little bit of weight. She weighed in at 692 grams, which this nurse takes off 22 grams for the CPAP hat and I am not sure if the others did that as well. Brandon was so cute today. He read Kayleigh "Goodnight Moon" which is the book that Aimee used to read to him when he was a baby. He read it out loud with all the nurses around and he didn't get shy or hesitate one bit. He is going to be such an awesome big brother. Thanks for all the prayers and wondeful words of encouragement. We just hope these good days continue so she can grow and we can tackle the surgery hurdles with flying colors. We are so glad to have everyone there for support. It means the world to us. The Freemans
7/27/2008 10:36:00 PM
7/27/08 One Step Back I guess when you have so many great days, your bound to have one bad one. Let's just pray that it is only a small setback and we can fix the problem and continue to move in the right direction. Throughout the whole day today, Kayleigh was having a lot of desats and apnea spells. Her blood gasses came back abnormal, so they put her back on the vent. They thought her desats might have had something to do with the eye exam they performed. Good news is that her eye exam came back normal, but we are not out of the woods yet as they said she could develop problems as time goes by. She is just a little too premature to know just yet. Everything seems to be looking good with her eyes right now though. They also did some tests to make sure she did not have an infection, which could be causing the desats and apnea. On the other hand, they noticed her tummy was swelling up as if she was bloated from the feedings. Also, they noticed her hemoglobin level was low and on top of that, the nurse felt like Kayleigh's heart murmer was sounding louder than normal. So they had all these issues which one or all of these things were causing her to have a really rough day. So, they took an x-ray to look at her lungs and her belly. The lungs looked a little wet which shows signs that her heart was working harder than normal again. They gave her one dose of Lasix tonight and she is going to go on antibiotics incase there is an infection. They noticed the belly was swollen because there was too much trapped air due to the CPAP, so taking her off the CPAP and extracting the trapped gas will help with that. Plus, getting her on the vent will help with her blood gasses once they set her at the right level of oxygen. They are also giving her a blood transfusion again tonight to help increase the hemoglobin. WOW, What a busy and exciting night for Kayleigh. If one thing isn't going great, everything isn't allowed to go great in the eyes of Kayleigh. She doesn't like to make it easy on anyone, that is for sure. So it certainly stressed us out at first, but then now that every issue is being attended to, we feel much better. I just hope they take care of the problems quickly and we can get back on track. Since her head piece was taken off, they were able to get a true
reading of her weight. She was 672 grams which is around 1 pound 7 ounces. Her length came in at 12.4 inches so she is just slightly bigger than your footlong at Subway. ha-ha! We will be up there for quite sometime tomorrow and since she has her beanie off, we will be able to take some good photos. Please pray that she gets back on track and can focus on growing again.
7/28/2008 11:57:00 PM
7/28/08 - Just a Bump in the Road, No Problem!! That is exactly what Kayleigh is saying right now! "Yesterday was just a bump in the road, No Problem" as she is just about back on track. It was great to see Kayleigh without the CPAP Beanie on so we could see her face and hair. She didn't grow much hair and it still doesn't really determine whether we are going to have a blondy or a burnette. She did take a moment to look at Daddy for the camera. Sorry it didn't come out real clear, but I didn't want to use the flash and scare her, let alone hurt her eyes. I got to hold her for a moment while the nurse changed her sheets. She is so tiny in my hands that I just still can not believe my eyes.
Today was a very productive day. Kayleigh had a couple desats throughout the whole day, but was great for the most part. They weaned her oxygen down to room temperature with the vent, so that is crazy since yesterday she was struggling with the CPAP. I really think that Kayleigh just doesn't prefer the Bubble CPAP because they can never get it to fit her good for long periods of time and it causes her stomach to be bloated with trapped air. Speaking of
her stomach, it has gone down quite a bit and that could be because of her not being on the CPAP or that massive poop she had today. The x-rays came back with no issues with her lungs and her blood gasses came back normal. They said they would put her back on the CPAP, but since they just moved her to the vent, they don't want to keep intubating and extubating her. Sometimes Kayleigh will extubate herself and they said they will leave it out if she does it. We noticed today that she just loves to pull on the tube and also grab wires and pull them out of their set places. Since everything was moving back to normal, they started her feeds back again. I am just pleased with all the issues going on yesterday, they were all taken care of and she has cleared the hurdle and continues to move in the right direction. We are so proud of how well she is doing. I felt some of the bricks fall right off my back today because I realized the balancing act has pretty much been figured out. Since we have had some good days and some bad days, I feel like the doctors and nurses have all figured Kayleigh out to the point that they know what to do if she starts to have some issues. It is not so much a trial and error anymore. At the beginning, it may have taken a couple days to figure out what could be causing the desats and apnea, and then another couple days to figure out how to treat it. Now, it took one day to notice a problem and one day to fix it. That means the world to me and allows me to not get so parynoid when something starts to go bad. Just as long as we don't have anymore surgery surprises, I will be okay. Now this is totally in left field, but did you ever want to know what veterans from the war ever talk about when you go in to your local Wal Mart or McDonalds early in the morning. You think they would be sharing their old war stories, but then over time you might think they would run out of stories to tell. I have had the pleasure to meet many different people throughout Kayleigh's journey, but one that stands out above the rest touches my heart very deeply. I just learned from an Aunt of mine that there is a group of veterans from the Vietnam War who meet every morning for coffee at a Bob Evans in a very very very small town in Ohio. Everyday, they talk and pray for our sweet Kayleigh and you would think that our little girl would be the last thing on the minds of such heroic men of war. To those wonderful veterans; Our family is truly blessed to be the topic of conversation every morning. One thing my little girl does have in common with you guys is that she is a true fighter. God Bless you and Thank You for serving our country with honor and Thank You for praying for Kayleigh. The Freemans :)
7/29/2008 8:57:00 PM
7/29/08 - A Perfect Day, Almost.
Snug as a bug in a rug :) It was quite funny as Aimee and I were standing next to Kayleigh in her isolette. Aimee told me that I can title tonights blog as "A Perfect Day". Then...Guess who got the last word? Yes, Kayleigh. She had an apnea spell, making the bells chime and then a desat right after it to make things even more exciting. She quickly recovered back to normal and if she could make a sound, I would have heard a giggle like no other. That right there goes to show she is a true Freeman as we are all practical joksters. Other than that small little spell, she was wonderful today. Tonight they will start her back on her feeds once they get her final blood culture back, but they will only be giving her 4ml. So we have to take a few steps back with the amount of food she will be getting, but hopefully we will be back up to 10ml in no time. She even gained some weight over night without getting any food yesterday. She weighed in at 737 grams which you would also have to take account for the CPAP, but her weight is right around 1 pound 10 ounces. We want to thank those who have purchased a bracelet. We will be making an order shortly and we can't wait to put together the scrapbook with all the family photos of everyone wearing their bracelets. I guess I am just so excited for the day that Kayleigh can appreciate all the people pulling for her and this will be a wonderful way to do just that. Thank you all from the bottom of our hearts.
7/30/2008 8:35:00 PM
Taking a night off :) Sorry everyone, but we have had a very busy day so Aimee and I are going to sit down and watch "Big Brother" and "Never Back Down". One is a tv show that I am sure 99% of you watch and the other is one of my favorite movies that just came out on DVD. Kayleigh is doing really great today. She has only had a couple minor desats, but nothing crazy. They did realize that she has a urinary tract infection, so that could be another reason for all the desats the other day. They are giving her some medication to take care of it and it seems she is doing better now. She was sleeping very comfortably when we were there tonight, so that makes us feel great.
7/31/2008 8:41:00 PM
7/31/08 - NICU EDUCATION Hey there, I wanted to explain a little bit about the machines in the NICU, so everyone can kind of get a feel of what we see. If I were in your place and I heard you talking about desats and I saw all those wires hooked up to Kayleigh, I wouldn't know what you were talking about. So I decided to take a few photos of the machines that are hooked up to Kayleigh and educate you all a little so you understand what we are talking about.
In the first photo, you will see Kayleigh's monitor. The top green line is her heart rate and she usually varies from 115 - 180bpm, but her average is around 145bpm. Kayleigh has a shiny gold heart sticker on her chest that monitors her heart rate. The blue line is her oxygen saturation. This is not supposed to be higher than 98 or lower than 85. If the machine starts to chime, you will notice she is satting too high or too low. If it is too high, then the nurse will turn down the amount of oxygen she is getting. If it is chiming too low, that means she is having a desat. This is caused by not getting enough oxygen, either by not breathing or the nose plugs have come out. There is a strap with a bright red light that is attached to Kayleigh's foot that monitors her saturation. We call it her E.T. foot. If you look back to some other photos, you will see what I am talking about. The bottom yellow line is her respiratory status which monitors her breathing. There is a sensor on her tummy that measures movement. If this line is flat, that means she is not breathing and then you will notice her oxygen saturation (blue line) start to drop and if that drops too, her heart rate will follow causing an all our DESAT!!! As you can see, her heart rate looks good, her oxygen is good and she is breathing. That is how we want it to be always :)
This is a photo of the amount of oxygen she is getting. If she is satting too high, they will turn this knob down and if she is satting low, they will turn it up. Right now, she is doing AWESOME and is right around 24% oxygen. The lowest setting (21%) is room air, like what you and I breath.
This photo right here is the bubble of the bubble CPAP. I can't begin to tell you how it completely works, but I do know that it really does have a bubble. ha-ha Actually, I was told that the bubble helps keep the sacs in the lungs from closing, so we don't have respiratory failure. It is really tough to inflate a lung after it deflates, so we want to refrain from that happening.
Kayleigh has a tube that runs through her mouth all the way to her belly to give her Mommy's milk which by the way is coming in great. Aimee filled up one of her little containers and half of another in one sitting, which will feed Kayleigh a full day if she was getting her maximum amount of feeds. Way to go Mommy!!! Kayleigh also has a couple IV's where she will get her medicine, like the Dopamine photo above. Those machines are cool because they are set to give her the medicine over a period of time, so the nurses don't have to sit there and squeeze the syringe themselves. She also gets her nutrients in another IV (Tripple Mix) which I joke by saying that Kayleigh is "Brown Bagg'n It". Beyond the healthy milk from Mommy, they make sure she is getting a lot of proteins, fats and carbs with the extra nutrients. Well that is it for the lesson today. Kayleigh is having another great day. The test results came back and the urinary track infection was the reason she was having a rough day the other day, but the infection is no longer. The medicine they gave her cleared it up and she is doing great. They increased her feeds to 6ml today and will increase it tomorrow if she continues to do well. I am ready for her to get to 12ml and have no issues, so she can grow! She didn't gain any weight from last night, so she is still at 747 grams. She did have a couple desats, but the nurse explained they only dropped in to the 70's (Which for Kayleigh ISN'T a true desat). I didn't take any photos of Kayleigh tonight because with that Bubble CPAP on, she doesn't look any different from all the other photos with it on. So the only thing different you would see are her sheets. But if you really want me to take photos of her sheets, then I will :) If you all have any questions about anything or if you want to just email us personally (If you'd just rather not post), please email me at Adam@TeamFreemanProperties.com. I hope you all have a blessed day tomorrow and keep praying for Kayleigh to grow :) Love, The Freemans :)
8/1/2008 6:22:00 PM
Kayleigh the Plumber :)
We are true parents capturing every "first" moment of Kayleigh. So today, we took a picture of Kayleigh's first "Plumbers Crack." But doesn't she have to have butt cheeks to have a plumbers crack? Oh well, maybe someday soon. Kayleigh is doing amazing today. She has had only a couple desats recorded only in the 70's and brought herself back up quickly. She is also on room air (21%), so WOO HOO!!!! More days like this will get her back on the nasal cannula. She went up to 7ml today and will be going to ml tomorrow. She is moving right back up to where she was before and hopefully now we can start putting some meat on her. Aimee got the opportunity to do Kangaroo Care and Kayleigh lasted an hour before we had to put her up. She would have stayed out longer, but we had to leave to get Brandon and Allyson. She actually cried when we had to put her back, so you know she was really enjoying laying on Mommy. I am so glad Aimee was able to bond for a long time like that. It is so healthy for Kayleigh and it makes us just outright excited. She weighed in tonight at 749 grams without the CPAP on, so she actually grew around 23 grams more than last night. Other than that, she is just doing great! Let's keep it up!!!! Have a great weekend everyone! The Freemans :)
8/5/2008 8:37:00 PM
8/5/08 LOOK WHO'S OFF THE CPAP!!!!! Since Kayleigh had quite a few good days in a row, they decided to take her off the Bubble CPAP and put her on the nasal cannula. She has been doing great on it so far. Her oxygen is set at 26 and she did not have a single desat. She is also up to 11ml on her feeds, which is the highest she has ever been. She is tolerating it very well.
Today was a very exciting day. When we first came in to see Kayleigh without the CPAP, we were just blown away with excitement. It was a good sight to see Kayleigh without her face all covered up. Since they had the beanie on her for so long, it gave her a little cone head. That should fix itself now that she is off it. Not only was it so wonderful to see Kayleigh on the nasal cannula, this was the first time we have ever seen her so alert. She was moving around a lot, looking around all over the place and making tons of noise. It was a true turning point of emotions to just see her act like a normal baby. She was awake for a good 30 minutes before all the hustle and bustle caused her to conk out. I captured some video that really shows how alert she was. Poor Kayleigh was in the middle of getting an IV removed, so she was crying a little bit. Mommy was able to put her hands in there to comfort her and Kayleigh was squeezing her hands like crazy!!! The cutest part of the whole video was catching her sneeze. I never understood the parents who would go completely nuts over a babies smallest actions until I saw Kayleigh sneeze today. It is the most adorable thing I have ever seen that I made one of those "parent" sounds: (AWWWwwwwwwaa)Look at me now! There was something about today that just eased my nerves. To see her so alert and doing so well on the cannula, I just feel so much more positive than I have been feeling over the past 18 weeks. This has certainly been a really tough road to travel and when Doctors were not so positive for so long, you couldn't help to think about the negative aspect of it all. Today a big piece of it just went out the window. She just looks so much more healthier today and so active, that it blows my mind. Our nurse told us today that if Kayleigh continues to do so well with her breathing when she gets to 1000 grams, she will not have to have the heart surgery to insert the pulmonary band. We will have to still do the VSD repair on her heart at 2000 grams, but this eliminates them haing to go in twice. How awesome is that??? We just need to pray that she will continue to tolerate her feeds, breath well and grow fast!!! Kayleigh is just beating all the odds and it's because of all of your prayers. I saw a road sign yesterday that hit the nail on the head. It read "PRAYER, The Best Wireless Provider Around" That is completely the truth!
8/6/2008 8:34:00 PM
8/6/08 First Family Photo Mommy, Kayleigh and Me
Happy Daddy
Looking at Daddy
Naked Baby!!!
Family Reunion Outfit
Today was the perfect day to take advantage of some photos and we are pleased to finally have our first family photo together. I was able to hold Kayleigh for over an hour today!! WOO HOO!!! It was amaaaaaazing! I can't begin to describe the feeling because this time I wasn't doing kangaroo care, so I was able to look at her face while she slept so comfortably wrapped up in this warm blanket. She was out like a rock when I held her and her sats were perfect the whole time. I just sat there and stared at her face and was just so amazed as I thought to myself how blessed I am to be holding her at all. There were so many people telling us we would not get to a state of viability or if she was born she wouldn't survive long, and now I am sitting here holding an unbelievable miracle. I can go on and on trying to describe how deep these feelings are, but there is just no way to even scratch the surface. I feel like I experience a glimpse of what heaven is all about when I hold her in my arms. My world completely stands still and nothing else is important or can even phase how amazing I feel. Today was extra special for another reason. Every other year my Mom's side of the family will get together for a family reunion. Now my Mom was 1 of 9 children, so over 65 adults and children invade a small campground up on the border of Pennsylvania and Ohio. The coolest thing is to see my Papa Yash (Grandfather) sit in his lawn chair and watch everyone while he thinks to himself: "Look what I've created." This year, we drove 10 hours through the night to drop the kids off, stay a full day and drive back to be with Kayleigh. (Sorry Everyone, I said we didn't have internet the other day, but I didn't want anyone to know our house would be empty.) It was so worth seeing family and getting all the well needed hugs. Every reunion trip, someone designs tshirts for us all to wear and my Aunt Kathy who also had a preemie (Jacob) made Kayleigh an outfit with "Wojtowicz Reunion 2006" embroidered on it. We were able to dress Kayleigh in it tonight and while everyone is still up there in now, we will be able to send it to them. I will be so excited when my Papa Yash gets to see the photo. Papa is such an amazing guy. He is 85 years old, rides a bike everyday for exercise and also plays golf several times a week. My wish is to just be half the man he is today and my life will be unbelievably great. Today, Aimee and I had our 6 week follow up with our Doctor who delivered Kayleigh. While we checked in, we got to see some of the other nurses who helped us along the way. Aimee and I were on cloud nine because they were so wondeful to us and it was a pleasure to share stories with them and give
them this website for them to see all the photos of Kayleigh. Our Doctor is such an amazing person. She was at the right place at the right time when she kept Aimee in the hospital, administered the steroid shots for Kayleigh to grow and was on call the night pre-eclampsia forced Kayleigh to come in to this world. We had never met her until a few days before Kayleigh was born and God sent her to us for a reason. She is an angel in our eyes and as we told her this, she was so selfless as to blush unlike what many other Doctors would have done. She said she never delivered a baby that small, but always played it in her mind on how she would operate if she did. (THANK GOODNESS) ha-ha! We love you all Charlotte O.B.!! Kayleigh is still around room air with her oxygen. She had ony one desat today and it was in the 70's, so that is not bad at all. She is off the triple mix which is extra nutrients they are giving her through an IV. Since they took out the IV yesterday and she is up to 12ml, they decided she didn't need it anymore. She weighed in tonight at 783 grams which is 1 pound 11.5 ounces. She did have a lot of air in her belly today, so our pimary was rubing Kayleigh's belly and pushing her legs up to her chest to try and get Kayleigh to fart. It was funny to watch because Kayleigh seemed to know when it was time to push because her face turned red as an apple. They said there was no back up of food or anything to worry about, but they just needed to help her push that trapped gas through her system. All together, she is doing just great again today. Thank you all so much for your prayers! Can't you see how much they are working? God is surely listening to all of you and laying his hands on our sweet Kayleigh. Thank you so much. The Freemans :) 8/7/2008 8:17:00 PM
8/7/08 Mommy's Turn
Today was a real fun day. Mommy got her chance today to hold Kayleigh for quite some time. Kayleigh was so cute because when we first got her out, she was fussy but quickly got situated and took to a pacifier. The funny part was when she was sound asleep and every now and then she would start sucking on the paci. If you watch the video close towards the end, you will see what I am talking about. We had a really good visit today and good visits really make the days go by much better. Aimee and I left laughing and enjoyed the rest of our day stress free. From the first time we got bad news about Kayleigh, we would leave that hospital barely talking because our minds were spacing out about the unknown. So things have really taken a turn in the right direction. I don't think Aimee and I laughed as hard as I did today in a long time. Kayleigh is up to 12 ml on her feeds, but they had to cut back the breast milk because Kayleigh's blood sugar count was low. They are giving her more formula to increase the calories and sugar. The crazy part is that Aimee has been able to stock up around a full months supply for Kayleigh if she fed on 12ml a day. Has anyone experienced this in their situation? From what I hear, breast milk is like liquid gold for Kayleigh, so is it bad to take that away from her even to give more formula? I am not sure if the weight is correct for tonight, but they said she weighed in at 782 grams which is one less than last night. We will find out later to check again, but the great news is she only had one minor desat all day long. Even when Aimee was holdng Kayleigh, she was getting upset, but never desaturated at all. That is really good, especially on the nasal cannula. Let's keep up the good work. Since they have her feeds up high, I am ready to start seeing some major growth soon. This not growing a whole lot over the last couple days isn't going to cut it. I have a good feeling that she is going to take off before you know it and just grow grow grow. Thank you all very much for your support through all this. We are just so happy to have some good days and we hope to keep it that way. God Bless, The Freemans :)
8/8/2008 7:35:00 PM
8/8/08 - Congratulations Wade and Ferris!!!
Today was a wonderful day, not only for the Freemans but for the Joye family also. Wade and Ferris Joye's twin girls (Adleigh and Liana) both went to progressive care. Liana was Kayleigh's NICU neighbor and we have grown to know the Joye's very well. We are certainly going to miss seeing them in our room, but I am sure we will see them passing through. When Liana left today, Kayleigh got first dibs on her spot so we move her isolette over to a much better location in the room. We are in a corner and not on top of the people who use the computer or telephone. It is also much darker over there so Kayleigh will get some better rest. Since Kayleigh was having issues with her blood sugar, they decided to put her completely on formula for right now. They also decided to put her on continuous feeds, so she will get 13ml over 3 hours and then start another 13ml when that is done. That way, we can keep her blood sugars up and not give them a chance to drop. Since they have done this, her blood sugar has been looking great. This will also give Kayleigh a chance to receive more calories than what the BM was giving her. From people posting and from the nurses today, BM only goes up to around 18 calories while the formula goes up to as much as 30. The nurse said that 27 is almost too much because problems with digestion sets in around that number, so they are going to start her at 22-24 calories for now to make sure she tolerates it well. I was able to hold Kayleigh for about 45 minutes today. I am loving that she is able to come out more and let us hold her. It felt like just last week, everyone was so afraid to let her come out of the isolette because she wasn't doing well enough. She did drop her temperature today, so I didn't get to hold her for over an hour like last time. I was actually going to hold her for an hour and then Aimee would hold to her, but we didn't make it that far. "Sorry Aimee!" Well, atleast she will get to hold her first tomorrow:) We are so excited about how well she has been facing all her battles lately. It seems that when one thing goes wrong, they are quick to fix the issue and Kayleigh is handling it all like a champ. She is a true fighter. Pray that this formula will give her the calories she needs to grow faster. She did grow 14 grams from last night. She weighed in at 796 grams which is 1 pound 12.07 ounces so maybe the forumula is starting to help because she hasn't grown that much in the past three days. Attention everyone who got bracelets, we had quite a few more people order some from the family reunion, so we held off on ordering them a couple more days. If you still want one, let us know as soon as possible. THANK YOU TONS!!!! If you are having trouble on your computer clicking on the order tab at the top right on the blog, email me at Adam@teamfreemanproperties.com. I can't wait to put together the scrap book for Kayleigh with all your family photos. We figured with the orders so far, we will be able to purchase materials for the scrap book and possibly the stroller we hope to get for Kayleigh. God Bless you all for your help!!! The Freemans :)
8/9/2008 6:52:00 PM
8/9/08 - Quiet Day
Today was a pretty quiet day all day long. The nurses said she was sleeping most of the day. Being that it is her first day over in the corner where it is darker and there is less commotion going on, I bet helped her get some better rest. Some wonderful news is that Kayleigh did not have a desat all day today. She has been doing so wonderful with her breathing and it that takes so much of the worry away. You know she is doing well when she is sleeping peacefully without any apnea/desaturation issues. They also desided to test her blood sugar only twice a day since she has been doing better with keeping her levels up. They still are keeping her on continuous feeds of formula though. Aimee got to hold her for an hour today and I was so worn out from a long day, that I took a nap in the cozy chair next to them. She grew some more last night and weighed in a 813 grams which is 1 pound 12.67 ounces. Other than that, Kayleigh is doing just great. There was no other exciting news, but no news is still great news. It seems that whenever a problem comes about, I ask you all to pray about it. It means the world to me that everyone is reaching out to God to help because He is certainly helping our little girl. Some of these issues could easily take Kayleigh in a serious direction, but the doctors and nurses have attended each issue and they have been resolved very quickly. I just hope this continues to go as smooth as it has for the past week. Thank you all for your help and being there for us. All your posts, whether you are commenting on Kayleigh or responding to an issue to guide us through the process, we appreciate it so much. Without all the people out there, we would be completely lost and there would be so much more stress piled on top of what is already there. I am so blessed to have all of you in our lives. We are forever greatful!! The Freemans :)
8/10/2008 10:33:00 PM
8/10/08 - NEED YOUR PRAYERS!!! Everyone who has been following our story knows there are some good days and there are some bad. While this whole past week and a half have been going good, things took a really rough turn tonight. We just got off the phone with the NICU nurse and nurse practitioner, and it seems that Kayleigh's belly was getting pretty large and it is either air from the cannula or from her formula feeds. So that threw up a red flag to get some tests done quickly. They did an x-ray and that came back showing signs of the intestines being "loopy" which is not normal and not what they want to see. She mentioned that being loopy is where Kayleigh's bowels are dilated on the x-ray. They decided to stop her feeds and put her on antibiotics incase it is an infection of some sort. Since they have to give her antibiotics, they had to put in an IV back in. The tests should come back within 48 hours, so they want to start the antibiotics to get a jump start on the problem, IF there is one. They are doing a urinary culture which has not come back yet, but the blood culture has. It shows that her hemoglobin is low so they are going to give her a blood transfusion tonight. It also shows that her white blood cell count is normal so she is not showing any signs of fighting off an infection, yet. There is more information that will come back from the CBC (blood culture), but it has not yet. Kayleigh is not desatting and is not having and Bradys, which is kind of like a desat, but her heart rate just drops instead of her oxygen. She had two of those today when the eye doctor was performing his exam, but that is nothing to be worried about. Right now, our biggest fear with the stomach is NEC, which is Necrotizing Enterocolitis. It is death of the tissue in the small intestines which is a scary scenario for a preemie. She did has a small stool tonight which means things are passing through, but we need to pray hard that it is not NEC that is occurring. The nurse practitioner said that the x-ray would show signs of air bubbles in her abdomen that has leaked out from her intestines if it were NEC, but it hasn't shown any signs of that. Her first guess right now would be that her digestive tract has shut down (Ilius I think is what she called it) for some unknown reason. It could be from a urinary tract infection (which she just got over) or some other infection. Since Kayleigh just went on full feeds with formula only, her body could not be responding well to that. While they are testing for what could be wrong, they are stopping her feeds and if she returns back to normal quickly, we will know it was due to the formula and we will have to change the type of formula we are giving her. So right now we need everyone to pray that this issue will be quickly resolved and we can get back on track. Thank you everyone for your support and reaching out to God with us when our little girl is in trouble. She has fought through so much and she will fight through this too. We all just need to support her and pull for her 24/7. Thank you all very much for everything. They did measure Kayleigh and she is 33 centimeters which is right about 13 inches long now and her head measured at 25 centimeters, which is 9.8 inches around. They did not weigh her tonight, because they got side tracked with all these other issues. On a lighter note, Allyson and Brandon are back from their week long vacation where they went up to Ohio at the Pymatuning State Park for a family reunion my family does every other year. You can read about their trip on their blog by clicking on their names. They were so excited to tell everyone about how much fun they had.
Last, but certainly not least! Aimee and I joined a new church not too long ago called Elevation and it is an amazing church. We heard about Elevation through Wade and Ferris Joye, our NICU buddies. Aimee and I learned that getting baptized was not only washing away your sins, but confessing to the world your profound love for the Lord. Since you all were not there to witness it, I would like to share with everyone that Aimee and I were baptized today. To top it off, Wade Joye not only had the opportunity to baptize many people for the first time, but he baptized Aimee and I. It couldn't have been anymore perfect than that. God is GREAT!!!
8/11/2008 8:06:00 PM
8/11/08 - Change in Diet
Someone had a long night last night.
Think she is ticklish?
After a long and stressful evening and day today, it ended on a really good note. We spoke with the doctor today and we have decided to start fortifying Aimee's breast milk instead of giving Kayleigh straight up formula. With all the tests, they don't find any other reason why she was backed up so much. When they told us last week they were taking her off the BM completely, Aimee had a funny feeling in her stomach that they shouldn't be doing this and they should be fortifying it. I guess we should listen to our funny feelings for now on and ask a bunch of questions. If anyone has any question in their mind that something should or shouldn't be done, please let me know so we can at least ask the doctor why they are doing things a certain way. That way we can all work together to make sure Kayleigh is being treated correctly or at least learn their reasoning behind what they are doing. The scary part of this whole thing is they have to tell you all the possibilities, even if it means scaring the crap out of you. Even though NEC is not completely ruled out, it is very slim that is the reason for the back up. The reason I say that is because Kayleigh pooped a good bit this morning and her belly has gone down quite a bit throughout the day. Whatever the problem was, it's taking care of itself quickly! All the prayers today sure have helped. THANK YOU! More great news is that since Kayleigh has been breathing really well, they lowered her oxygen flow to 4 liters. She was at 5, but since she has been on room air (21%) and satting high, there is no where to go but to lower her flow. That could have also been why her stomach was bloated and full of air. When air is forced in her nose, it will take the path of least resistance. Sometimes that means if the airways are not open, it will go down to the stomach. If she is not passing her stools, air will get trapped in there too causing it to back up. When I explain that, I feel like my stomach starts to hurt because we all know what trapped gas feels like. Even more great news is that when we start Kayleigh's feeds back tomorrow and if she tolerates them over the next few days, we are going to try to start
bottle feeding her. Aimee and I were wondering when that part of the process would be, but we didn't expect them to say real soon. We are so stoked that we get to do this. Aimee got to hold Kayleigh for 3 HOURS today. That is the longest we have had her out and she didn't desat one time, even when it was time to put her back. The funny part was that she slept so sound for all three hours, but when it was time for us to go home, she woke up and was so alert. We hated to leave her when she was awake, but I was so hungry I was about to eat her left over formula. ha-ha! EVEN MORE great news is that I just got off the phone with our nurse and she said that she is doing even better now. Her belly went from 23 to 21 centimeters, so it is definitely going down and her weight is at 876 grams. That is 1 pound and almost 15 ounces!! Woo hoo! She weighed in at 840 grams yesterday so she has grown a lot more than usual in the past two days. She is almost at the 2 pound mark. Now we know that the formula does help with putting on weight, but we still need to get something that digests easier for Kayleigh. I am so pleased to see that things are getting back to normal with her belly and it isn't as severe as they thought it was last night. WHEW!!! It is so true when they say a few steps forward and one step back. It is really a game of trial and error because every baby is different. When the nurse said that most babies don't tolerate fortified breast milk, Aimee said something in response that really goes much deeper than the surface if you really sit and think about it. She said, "Kayleigh is not like most babies, she has already proven that." That is so true with everything we have hurdled. From the negative doctors in the very beginning to Kayleigh shocking all the doctors right now, she is definitely NOT like all the other babies. I would say she is our little princess, but from the looks of it, she is going to be a tough cookie that won't take crap from anyone. haha Thank you for your prayers as we go through these trials in our life. I guess since Kayleigh can handle anything put in her direction, please pray that Aimee and I stay sane and we don't end up in the hospital before Kayleigh comes home from it. With much LOVE! The Freemans :)
8/12/2008 9:20:00 PM
8/12/08 - DAY 50!!! Wow, can you believe it has been 50 days in the NICU already. Time is flying by so quickly. It feels like yesterday when our "Angel" doctor brought our precious little Kayleigh in to this world. Soon she will have doubled her size. She did lose a little weight since yesterday, but probably because she hasn't eaten anything. She weighed in at 841 grams which is 1 pound - 13 ounces. We spoke with one of our doctors today and she said if they wanted to wait one more day before they start her on her feeds. They are going to do another x-ray in the morning to see how her belly looks and start her on her new feeds. She will be getting breast milk and SSC fortifier, which is Similac Special Care. She said that if that doesn't seem to do the job, then they have several other options to work. We are really excited to get back on track. I just hope this works so we don't keep going back and forth for too long.
Good news is that Kayleigh's breathing has been wonderful. She was dropped from 5 liters to 4 liters yesterday and since she did so well with that, they dropped her to 3 liters this morning. I got to hold her for a little over an hour today and she was doing great. No desats, but her heart rate would drop just below 100 every now and then. The nurse said that it is nothing to worry about if her sats aren't affected by it. It was good to know that he was sleeping really well while I held her because the nurse said she was cranky a lot today. That is probably because she is hungry. Everyone will be really glad for her to start back feeds tomorrow. Other than that, she is doing good and her belly is looking better. I wanted to let everyone know we ordered the bracelets, but we will order more if anyone wants any. Shipping said it will take 6 days to get here and then we will turn around and mail them out to you all. Thank you all so much for ordering bracelets. We will be mailing 44 bracelets as of this morning, so that is going to make for an awesome scrap book full of many wonderful photos. If you missed what we are doing, we are selling the bracelets and putting together a scrap book for Kayleigh with photos of everyone wearing their bracelets. Also, each family can write Kayleigh a letter and put it with their photos. I think that will be an awesome thing to cherish for the rest of her life, so she can remember all the people pulling for her. Thanks to everyone for contributing. It means to world to us.
8/13/2008 10:04:00 PM
8/13/08 - TWO POUNDS!!! Here is Kayleigh on 6/26/08 weighing 13 ounces.
Here is Kayleigh now weighing 2 pounds!
We are so proud that Kayleigh has hit a major milestone for us since she started off at one pound and one ounce, then quickly dropped to a frightening 13 ounces, and has now doubled her size. Way to go girl!!!! I am beyond shocked that she has actually gained any weight since they stopped her feeds for right now. They were supposed to start them back today, but they made a decision to wait a total of 7 days. Now she has already gone 3 days without food, so we only have 4 more days until they start all over. They will be giving her plain breast milk and then slowly start fortifying it so it is easy on Kayleigh's tummy. I am completely fine with their decision as I don't want them to do too much too soon. I know the tummy is a very sensitive issue with preemies, so taking it slow is fine with me. I would much rather her be in the NICU longer if she comes home healthy. Other than that, she is still on 3 liters and 21% oxygen. She has been sleeping all day long since the have put in a PCVC which is a slightly different kind of IV. If you saw the last video, they were pulling it out of her leg, but it almost looks like a string that they put all the way up her vein. I guess it is just a little more comfortable than having a needle, but I am sure it serves other important purposes. Everyone, please pray for Adleigh as she was sent back to the NICU yesterday from progressive due to similar reasons Kayleigh was dealing with, but Adleigh's apnea put her back on the vent. I have not gotten a new update from Wade or Ferris, but Adleigh has been having a rough time. Please visit their blog (Joye Twin's Blog) for their prayer requests. God Bless you guys and we are praying for you.
8/14/2008 9:45:00 PM
A Chance To Give Hope! Brandon getting a chance to hold Kayleigh's hand.
One of the major reasons I have chosen to post every single day besides making memories of the tough journey we have had to travel, is to reach out and give some other family hope. We want to share the greatness of our God and how awesome He is. If there is a family who was told their child would not survive, I want them to look back on our story and not think for one second that they should give up. Doctors told us numerous times that Kayleigh would not make it and that termination is an option. If Aimee never posted on the Baby Center and met some of the most amazing people, we wouldn't have been given the hope or have stayed so positive through this whole journey. One night while I was fumbling around on the internet, I came across a website where you can enter your child's photos for a chance at a cover photo. I decided it would be a good idea to upload the photos so other families would come across Kayleigh's photos, read the captions I left and share it with others who may be traveling down the same road as us. If I could touch just one person with our story, I would feel like I accomplished so much. Tonight, someone posted on our blog that came from that website who was just floored by our story and said that Kayleigh has given her a whole new outlook on life. It has been over a month since I posted the photos to that site and when I went back there tonight, I was unbelievably shocked to realize Kayleigh is ranked 39 out of 12,332 babies on "most viewed" category. My initial goal was working and I was able to drive people to our blog and to share Kayleigh's story and to give hope to someone in need. I nearly cried when I felt like I returned the favor from those who did it for me. My initial goal has now changed and I want to do so much more. I am on fire about touching giving hope to as many people as possible. On our blog, we get well over 500 viewers who stop by daily to check up on Kayleigh. If I were to drive every single one of you to this website and get Kayleigh's ranking to #1, we might have a chance to give so many people going through similar situations the amount of hope you all have given us. How awesome would it be for ever single one of those 12,332 people to see Kayleigh's story and share it with the world, let alone getting a cover shot to where we can touch the lives of everyone who reads the American Baby, Parents and Family Circle Magazines. I want everyone to work together for a common goal and that is to
save as many baby's lives as we can and to show everyone how wonderful our God is. The doctors don't have the final word, GOD DOES!!! Let's all reach out and honor God by giving hope to a family out there who doesn't need to go through this alone. How to help get her to #1: This only takes 1 minute to do. The link to the site is: http://www.parents.com/app/sharemy/photoDetails.jsp?photoId=264600143&fromSearch=true Right above the photo with her hand in mine where my my ring on her wrist, you will be able to give her a rating where you see the stars. Also, click the recommend button as I guess this will only help her ratings too. I think you can only vote once, but tell your friends and family to help us all achieve this goal together. God Bless you all and Thank you! By the way, Kayleigh is doing really good today. There really wasn't anything to update on except that she is resting well and breathing good. She is also not having any issues with her belly right now. Today was a good and quiet day.:)
8/15/2008 9:52:00 PM
8/15/08 - What a day!!!
Today was an awesome day in more ways than one. First of all, thank you so much to all those who went on to the Parents.com website to help Kayleigh's ratings. She is moving up in the rankings, but not where we need her to be yet. We had around 137 people vote in the past 24 hours. That is amazing!!! If you did not read yesterdays post, please read it and then go to:http://www.parents.com/app/sharemy/photoDetails.jsp?photoId=264600143&fromSearch=true We are so thankful to have some many wonderful people out there try and accomplish a single goal together. That goal is to touch the lives of at least one person. Well, it is my pleasure to tell you that I got two emails today. One of them was from someone who has been struggling with daily routines in life, but after finding Kayleigh's story on the Parents.com website, she has a new outlook on life and how she treats everyday struggles with her children as a blessing from God. THAT IS AWESOME!! But wait, there is more....I received another email from someone who has restored her faith through prayer because she has seen how God has answered all of our prayers and created His miracles through Kayleigh. I AM SO AMAZED!!!! You can read both of their emails on yesterday's comments page. God is great and so are all of you for helping us reach out to others. Please, everyone continue to reach out like you have reached out to us and let's continue to help those who are in need. Whether it is someone who has a preemie like us or someone who just needs a helping hand. We are all God's people and His greatest gift is love, so let's use it. Speaking of love! I love my family so much and I was so excited to see Brandon and Allyson get to hold Kayleigh for the first time today. Our wonderful wonderful nurse allowed us all to be back their together to share in this special moment. You are normally only allowed two people back at a time, but she allowed us all to come back since it wasn't busy in our nursery. Kayleigh is doing wonderful today. She did drop back down below the 2 pound mark, but that is due to not having any feeds over the past couple days. She will gain it back soon though. She is breathing great without any major desats or apnea spells, and has just been sleeping very well lately. We are so very proud of her. I was able to hang out with a good friend of mine tonight who is also my submission fighting training partner. We were talking about Kayleigh and how great of a fighter she is when dealing with many obstacles placed in her way. We joked about a guy who produces a girl has "sissy sperm," so what does that say for me when I created a 1 pound girl? Ha-ha. What I have a hard time dealing with, is that I am protector of my family and I feel completely hopeless when it comes to being able to protect Kayleigh. Jake had told me that I have actually done one of the most important things that I could have ever done to protect her, and that was being in the best shape physically that I could possibly be when she was conceived. The training and diet regimen that I have been on to stay in shape while fighting is one of the toughest, but the reward beyond any victory on the mat was that my great health has saved my daughter's life. That goes for Aimee also because she worked hard to eat all the nutritious foods throughout the pregnancy and didn't do anything that could cause harm to Kayleigh. Every little bit helped and we can sleep better knowing we have done everything possible to give Kayleigh all the tools to fight for her life. God Bless, The Freemans :)
8/16/2008 6:45:00 PM
8/16/08 - One more day!
One more day for Kayleigh to be off her feeds. They will be starting from scratch again on her feeds, but we are completely happy knowing they are taking it slow a day at a time. She is doing great otherwise. She didn't lose much weight from being off feeds for 7 days, so that is really good. She weighed in tonight at 880 again, which is around 1 pound 15 ounces. When they get her feeds going again, I have a really strong feeling she is going to gain some major weight and never look back. Our prayer request would be for Kayleigh to tolerate her feeds this time around and grow fast. Aimee and I were able to hold her for a good amount of time today and she was just smiling, sneezing and yawning like crazy. She was so cute!!! Her breathing was doing really well today with no major desats. It seems that everything besides her feeds are going as smooth as possible. The VSD (hole in the heart) has not gotten any worse and there is no fluid in her lungs right now, so we are extremely happy about that. We still need her to get to that 2000 gram mark so she can have the heart surgery done, but it is a blessing like no other that the VSD is not causing her any problems right now. It would spell disaster if it did because of the doctors having to start her feeds back from square one. She just wouldn't be able to grow quick enough with her heart slowly taking a toll on her. God is amazing! Thank you all for your support through this and we look forward to an exciting couple weeks as Kayleigh starts her feeds, starts to grow and becomes a chunk. That is the plan! God Bless, The Freemans :)
8/17/2008 9:14:00 PM
8/17/08 - More Baby Drama!
Here is Cynthia, one of our wonderful primary nurses.
Kayleigh on the scale, weighing 930 grams (2.o5 lbs) OH MY GOODNESS! When is the drama ever going to stop? Today, Kayleigh's belly started to get bigger and bigger as the day went on. She had an eye exam earlier so we were thinking that she was just grumpy because of that, but it turns out that she hadn't pooped in several days and the x-ray shows some trapped gas again. They decided to give her glycerin to see if they can breakdown what ever is left up in there and get rid of it. About an hour or so after that, Kayleigh finally pooped and it was some thick stuff that just had a hard time getting through her system, probably from the formula. So even though they cut of her feeds seven days ago, she had some stuff left in her that was trapping gas behind it and it slowly bloated her tummy up. Hopefully this was the issue and she will continue to get rid of what's left in there. If things continue to move in the right direction, they will still start her feeds back tomorrow. Besides all that "crap" (literally), she had her eye exam which came back that Kayleigh has a level one ROP. The doctor said that it is nothing to worry about right now as most preemies have a level one ROP and even level two ROP. The ROP is where the blood vessels in the eye do not grow and reach the point of attachment. If they don't grow, scar tissue will build up really making it hard for the blood vessels to reach their final destination in the growth pattern. This would be considered a level minor, and could possibly correct itself. If it doesn't, it is considered a level 3 major and surgery will be needed to laser the scar tissue, allowing te blood vessels to grow before it is too late and detaching from the eye causing major damage. If the surgery is a success, the eye will still not have peripheral vision. So this is not a road we hope to go down, but like I said before, most preemies have the level one and two before it corrects itself. Let's pray and hope this is the case and it quickly corrects itself. Even though there was drama today, Kayleigh was so cute when I got to hold her tonight. She seemed to be sleeping peacefully, but I quickly noticed that
she was just not digging the lights that were on. It really wasn't even that bright, but when I would cover my hands over her face, she would perk up and start looking around as if she was never sleeping in the first place. So I would go back and forth, moving my hands away and she would close her eyes quickly and just lay as still as can be. Then I would cover it again and her eyes were wide open again. I was really getting a kick out of this. She is going to be so spoiled!!! I also want to draw attention to all the emails I have been getting lately stating how Kayleigh's story has changed your life. It means the world to me to hear that because it really makes all this time that I put in to posting worth every single minute. Just know that Kayleigh may have touched your life someway and somehow, but God is the true reason for how you found your way to her story. He is Love & He is Life! Thank you all so much for everything and please keep Kayleigh's tummy and eyes in your prayers as we continue to move towards the day we can bring her home.
8/18/2008 9:14:00 PM
8/18/08 - Started Feeds Again!! We are so excited that they started Kayleigh's feeds back again. They are mixing breast milk with a fortifier, so the fortifier will take care of the blood sugar issue and the breast milk should take care of the digestion issue. (HOPEFULLY!!!) If this works well, then we should be on our way to more milestones. Please say a prayer that this combination of feeds is the perfect recipe for Kayleigh. We need to get this show on the road and cut back on the hurdles. Kayleigh weighed in tonight at 940 grams (2 pounds 1.15 ounces). Her oxygen is still at around 21-25% with 3 liters of pressure. Her belly was soft tonight and her bowel sounds were great. She was gassy today, but did not poop any. She had a couple desats today and seemed really grumpy at times, but no one could lay a finger on what her deal was. The nurse tonight might have figured it out because she turned Kayleigh on her tummy and hasn't heard any peeps from Kayleigh for the past couple hours. Maybe she was just in an uncomfortable position. Most of you may know or may not know that Aimee and I work in real estate with RE/MAX in Charlotte, NC. Our market has been one of the top markets for quite some time, but lately everything has been going down hill fast. We are down more than 50% from last year and the market couldn't have crashed at a worse time because of our situation with Kayleigh being in the hospital and gas prices being outrageous. We have been working really hard on turning things around and someone presented this opportunity to us that definitely couldn't hurt trying for. (Ha! Yes, another contest we need help voting on). This contest is through a huge radio station here in Charlotte and is called Mrs and Mrs. Real Estate. The winners (1 male and 1 female) get to come on the radio station and do an interview about their real estate business. The wonderful thing about this website is you get to vote multiple times so if everyone voted several times, we may have a shot at winning this. I feel guilty asking for all your help again, but please know that it is really appreciated. To vote for Aimee, go to: http://www.pxspot.com/public/file_viewDetail.asp?uid=685&fileID=36510&albumID=3633 and to vote for me, go to: http://www.pxspot.com/public/file_viewDetail.asp?uid=685&fileID=36507&albumID=3632
Vote as many times as you can possibly handle :) Just to let you know, Kayleigh is within the top 10 on "Most Viewed" and "Most Recommended" out of 13,659 babies. WOO HOO!!! Keep them coming so we can get that number one spot and share with the world how special Kayleigh is and how wonderful God can work in so many peoples lives.
8/19/2008 9:28:00 PM
8/19/08 - What a day :)
Happy Kayleigh, :)
And not so happy Kayleigh :(
Enjoying her paci,
And Enjoying Cynthia's finger :-0
Aimee's awesome milk supply is getting bigger. I almost forgot what a great day felt like. I mean, it has only been a little over a week that she started having rough days, but the stress level gets so high that a great day feels like a million dollars. I am certain that she is going to be spoiled because when Kayleigh is happy, everyone is happy. (And that is an understatement) ha-ha! When we arrived to the NICU today, our primary nurse was holding Kayleigh and it was just an amazing site. You would think we would get jealous that another person was cuddling with our little girl, but not at all. It just goes to show how much these nurses care about Kayleigh and the other babies. They do such an outstanding job! I just called up there to get an update and she weighs 973 grams (2 pounds - 2 ounces). She is on 4 ml of fortified breast milk and tolerating her feeds so far. She has not pooped which I am still concerned about, but they said her bowel sounds are great. She has been breathing 3 liters of flow at 21 -25% all day long and only having a couple apnea episodes. She was a little grumpy today at times, so I am not sure what may be causing that. I think it is the same thing causing her apnea spells, so hopefully we can lay a finger on it. It could very well be that she has not pooped. I am hoping the new feeds will start to push things through though. Aimee and I got to hold her for quite some time today. She was much more comfortable laying on Aimee than me, but we figured out the reason for that. Unfortunately, it is something I can't change and if I did, I would have to start wearing a bra. Sorry Kayleigh, you are just going to have to put up with being a little less comfortable with Daddy :) We got some really good photos of Kayleigh today. She decided to perk up and be very active at 6:25, and at 6:30 is when they have a shift change and close the NICU for an hour, so we had to leave. It is really tough to leave when she is up and active. Kayleigh sleeps so much that it is a rare site to see her open her eyes more than a couple minutes at a time.
I talk and talk all the time about how good or bad things are going with Kayleigh that I sometimes forget to mention how awesome Aimee is. For all of you who didn't read the full story, you will know that Aimee was having a hard time getting any milk supply for Kayleigh. We tried and tried different things to make it work and it seemed to be a losing battle. Finally, we met some wonderful people who sent her some Domperidone and it works wonders!!! For those who never experienced this, Mothers who can't supply food for their children go through an emotion like no other. It is a feeling that you are failing your child when they need you the most. To see Kayleigh fighting for her life and everything needs to align perfectly for her to make it through this journey, not having the breast milk, "liquid gold", or food God intended your child to have is heartbreaking. After busting her tail to do what it takes, we have more than enough supply for Kayleigh since she doesn't need that much anyways right now. She has (81) 3 ounce bottles in the freezer. The good thing is Aimee is ahead of the game and can continue to help Kayleigh for when she comes home. I am so proud of her hard work, pumping every three hours and not missing a minute. She is truly an inspiration to this family. Thank you all for everything and let's all pray for Kayleigh to poop. Like I said before, I feel that once she starts to digest and poop what she eats, she will start to take off and never look back. God Bless, The Freemans :)
8/20/2008 7:36:00 PM
8/20/08 - Here's a couple laughs!!! Have you ever seen "The Simpsons"? If so, then you must certainly know Maggie. Kayleigh gave us all a great impression of Maggie tonight while I held her. I thought she would spit out the paci if I didn't hold it in for her, but that wasn't the case and she gave us a good laugh in the mean time. The video is short, but enjoy. Kayleigh had another great day today. There was not much difference than yesterday other than her feeds were increased to 5ml. She is continuing to breath very well and is starting to hold her temperature much better when we have her out of her isolette for a while. That is one the "musts" to get over to progressive care. She has still not pooped yet, but is showing signs of trying. Her face will turn beat red and even pass some gas, but nothing other than that. Maybe tomorrow, we will push for a suppository to help move things along. Other than that, it was a pretty quiet day with Kayleigh. If you want to catch another great laugh, check out Brandon's blog http://www.brandonsundblade.blogspot.com/ where you will see that I got a little clipper happy. I fixed Brandon's mohawk since school is starting soon and thought that I would be a cool Step Dad and do mine too. My goal was to shave it completely, but not without a little fun. I ended up going to the hospital with Kayleigh like this and we both got many compliments. Even though it was rebellious to have my hair like that, I am pleased to say that I shaved it off a couple hours ago :) I wish everyone a wonderful day and thank you all for your support and prayers.
8/21/2008 8:03:00 PM
8/21/08 - GREAT NEWS!!! We have some great news in this wild journey of our precious Kayleigh. Well, you know we have been waiting for Kayleigh to grow to the 1000 gram mark to have the pulmonary band surgery? This morning, she had an Echocardiogram where they do an ultra sound of her heart to see how things are looking with her VSD. (Hole in her heart at her lower chambers) The nurse practitioner told us that the flow between the two chambers is high which still may cause the heart to work harder, but that the flow is not pushing excess water into the lungs anymore. That means that she will not have to get the pulmonary band surgery, which is basically to prevent that overflow into the lungs. Now that does not go to say she might not need it later if things don't keep progressing, but she doesn't now since things are going so well. So if we can keep her heart in good working order until she gets to 2000 grams, we can have the surgery to close the VSD and we won't ever have to worry about it again. I am just so happy that we may only have to do just the one surgery on her heart. She is just so amazing!!! This is yet another obstacle put in her way that she has overcome. She should get some gold medals for this event! Look out Michael Phelps, check out this chick!!! Wow, beyond this amazing news, she POOPED!!! She pooped once this morning and they still gave her a suppository and she pooped again. She then pooped big time while Aimee held her this afternoon. So we are pleased to say that the feeds are passing through her system as we hoped and prayed for. Thank you all for your "poop" prayers because they worked. If you don't have God in your heart, Kayleigh is a true testimony of how wonderful HE is and how amazing HE can be in your life too. We are so pleased with how things went today. She did have a few desats and bradys while we were there, but I would too if I were trying to crap for days. I am so glad she got that out and hopefully she will continue to do well. Who would have ever thought pooping can be so exciting? Beyond our sweet Kayleigh, Aimee/My baby's Momma has put forth major effort to get rid of the weight she has gained since first going on self induced bed rest and an eat everything in sight diet. It was for a very good reason though. (Kayleigh needed as many calories as possible since their wasn't enough nutrients getting to her through the placenta) She has started the Nutrisystem product and is already on the fast track to losing weight. Since everyone but her has started their own blogs, she decided she has a perfect reason to put one together tonight. She is going to reach out to all of you who either need to just get in shape, lose some wanted/needed weight, or lose the post pregnancy pounds. Even though I was the personal training director for Bally Total Fitness for several years, I can't lay a finger on how wonderful this Nutrisystem product is set up. You basically pick your meals from a list, they send your food to you each month, you eat it and you lose weight. She has already lost 4 pounds over the past week and we are going to save so much money not going to the grocery store every week. How awesome is that??? Aimee is actually a very picky eater and she has liked almost every meal she has gotten from them.
Anyways, stop in and give Aimee some words of encouragement and follow her journey through her weight loss program. Maybe some of you can join along, create your own blogs, hold each other accountable and support each other through a common goal. She will be more than happy to help you. Here is her new blog: http://www.aimeefreeman.blogspot.com/
8/22/2008 7:17:00 PM
8/22/08 - Moving On Up!!! Kayleigh is having another great day today. She has moved on up to 7ml on her feeds today and has been tolerating them very well. I could tell she was getting hungry today while we held her because she was starting to get really cranky. Once they started her feeds through her tube, she laid in my arms and slept like a baby. ha! She was having more desats and brady's last night where they had to increase her flow back to 4l, but she's breathing room air today (21% oxygen). Kayleigh's growth is moving right along as she weighed in tonight at 983 grams (2 pounds - 2.6 ounces) Woo hoo! Our Occupational Therapist came in today and we learned some techniques on how to massage Kayleigh's belly to help move her food go through her system since she is having troubles pooping. It worked too because when I changed her diaper, she dropped a big stinky one. She also taught us how to exercise her arms and legs so it will help with her range of motion. The biggest part beyond all the massages and exercises, our main goal was to show Kayleigh that not every "touch" is a bad one. What I mean by that is most of the time the nurses have to touch Kayleigh, it is to draw blood, insert needles, stick tubes in her throat, etc... So, we don't want Kayleigh to associate that all touch is bad. One thing I have noticed is that Kayleigh sleeps so much better when she is in our arms. Everyday that we do this, she will start to bond with us and get used to the good feeling of being comforted by us. Although, I know it is going to bite us in the butt when she comes home because she will never want us to put her back in the crib. Ah, that is okay though. I can't see Aimee or I ever wanting to put her down anyways. We are already fighting over who gets to hold her more. I already have a disadvantage of holding her because I don't have boobs to feed her :) ha-ha. I want to draw attention to some friends of ours that we met on our journey right after Kayleigh was born. Her name is Rachel and her husband is Ryan. They had a preemie named Carly who unfortunately passed away 4 months after she was born in the same NICU nursery that Kayleigh is in. Kayleigh shares some of the same nurses that Carly did. Rachel is pregnant again with a little girl named Hannah and she is currently 21 weeks now. Rachel and Ryan had their ultrasound appointment today to find out that Hannah is growing almost a week behind. Let's all pray for Rachel and Ryan that their little girl is going to get plenty of nutrients through the placenta and grow fast enough to skid past any danger if she were to come early. They have another appointment on September 21st, so they won't know how much has changed until then. Rachel's blog is: http://hannahkathleanelliotte.blogspot.com/ so please stop by and let her know that we are here for her and praying for her.
8/23/2008 10:05:00 PM
8/23/08 - 2 MONTHS OLD!!! Happy 2 Month Birthday Kayleigh!!! Woohooo :) I can't believe that it has been two months already. Time is flying by, but it still feels like we have a long way to go. They need to put us on the pay roll for as much as we are up there. Hey, I might be of good use since I have learned so much from all the nurses. They make fun of me because I am like a tourist when I am in there. My camera is going off left and right and I love to learn about everything as it helps reduce the stress. If I don't know how serious something is or isn't, I always think the worst. That is why I have to make sure I know everything. Kayleigh is having a good day today. She is up to 8ml on her feeds and they are going to start increasing her feeds every 12 hours since she started to poop again. Although, she did not poop today, but she is completely tolerating her feeds. I asked the nurse tonight on the phone what it means to completely tolerate her feeds, because if what goes in doesn't come out, then that doesn't sound like she is tolerating anything. The nurse explained that they listen to her bowel sounds, check for aspirate (regurgitation) and her overall reaction to the feedings. Pooping is not a factor in whether she is tolerating the feeds or not, but certainly an issue if it never happens. Today, Kayleigh was beyond active in her isolette. She happened to pull her feeding tube out of her throat and wiggled her body to the end of her isolette, practically off her bed. The nurses were shocked that she had enough strength to do that, especially at her size. Before we know it, she is going to be knocking on her isolette window telling the nurses "It's time to feed me" or climbing on the walls like a jungle gym. That would be a sight to see. Since she was so active and having those three big poops yesterday, she lost 3 grams tonight. So there wasn't much change in her weight. On a very sad note, We think Kayleigh's neighbor (Jeremiah) passed away today. He was having such a tough time over the past week and when we showed up to the NICU today, they had closed our nursery. Aimee and Brandon were the ones who went in and were quickly stopped by the other nurses. I guess it must have just happened because no one at the front desk knew to stop them from going in. Aimee could hear Jeremiah's Mom crying, which just breaks our hearts. Please pray for the family as they are going through this tough time.
8/24/2008 6:33:00 PM
8/24/08 WHAT A CRAZY DAY!!!! WOW, It is just makes me sick to my stomach how quickly things can turn around in Kayleigh's situation. She had a really good day yesterday and all of a sudden, she started having one of her worst days ever today. It was not looking good at all and then a few hours later, things started going back to normal. It was so crazy!!!
When we arrived to the NICU this morning, we found out that Kayleigh had another eye exam and her ROP prognosis went from a level one to a level three in just a week. It looks like they are talking about doing the laser surgery to save Kayleigh's eye sight, but she will unfortunately lose her peripheral vision. I am not sure when they are going to do this, but it will probably be soon. On top of that, our nurse (Marsha) who takes care of Kayleigh a lot noticed that Kayleigh was not acting like herself today, as she was very irritable and lethargic. She was having a lot of brady's and desats, where her heart rate would drop rapidly and her oxygen saturation would drop. She turned her oxygen flow up to 5 liters to try and help, but it wasn't helping at all. Her belly was getting a little bigger, but it wasn't any different than the past couple days so we weren't sure if that was the issue. She kept a close eye on her throughout the day and when she couldn't leave Kayleigh's bedside with out her dessating again, Marsha decided to order some tests to be performed on Kayleigh. Kayleigh started aspirating her feedings this afternoon and having more brady's/desats than ever before. Kayleigh has yet to aspirate because everyone would say she was tolerating her feeds fine. So for her to aspirate, Marsha knew something was not right. They did a CBC, blood culture and an x-ray. The CBC came back showing suspicious for an infection. The x-ray showed a ton of gas in her belly and the blood culture has not come back yet, which it usually takes 48 hours. The blood culture will determine what the issue is, but they stopped her feeds again and jump started some antibiotics to be safe. They were talking about skipping the CPAP and putting her straight on the vent because she was not doing well at all with her breathing. I couldn't believe how quickly things took a turn for the worse. They usually don't call us unless their is a problem and they had called us twice from the hospital to tell us she was having a rough time and what their plan of action was. The nurses were all completely shocked with what was going on and when you can pick up on that through their tone of voice, you know it is not good. This craziness all happened this afternoon, but when we just called up there a minute ago (8:30), Kayleigh seems to be doing fine. WHAT??? I couldn't believe it! Our nurse tonight, Amy says she has seen antibiotics work wonders if they are administered quickly. Amy mentioned that she gave Kayleigh a bath (wipe down) and Kayleigh was very alert and wasn't acting irritable or lethargic at all. She also did not have any desats or brady's in the past couple hours since Amy started her shift. It was if there were no signs that Kayleigh was having any issues at all. Can you explain that???? What in the world just happened? One minute, you are praying like crazy that you don't lose your little girl and the next, you are completely in shock to hear how well she is doing like nothing ever happened. I was so stressed out that I think I was having an anxiety attack in the car on our way home. I was short of breath and my stomach was turned upside down. I am so ready for this to be over and have Kayleigh home with us. This has certainly been one crazy day! Please pray that Kayleigh will be okay and she will make it through all this. With The Freemans :)
8/25/2008 10:22:00 PM
8/25/08 - Eye Surgery Scheduled
Someone turned the lights on!
Today was a much better day for Kayleigh. We went in this morning to visit right after we dropped Brandon and Allyson off for their first day of school. They were so excited and we heard they had a wonderful first day. Kayleigh was satting good today. She would desat or a brady every now and then, but it was nothing like yesterday. We were able to hold her for quite some time and she slept really good. It is almost as if she is cranky and irritable in the isolette, but when we hold her, she is completely fine. Shoot, I would be pissy too if I were couped up in that isolette. The eye doctor's wingman came by and did a second examination tonight to clarify and solidify Kayleigh's diagnosis as a level 3 ROP major. The operating room was booked up tomorrow, so they are going to do the surgery on Wednesday. Please pray for Kayleigh that the surgery will go smooth and Kayleigh will no longer have anymore eye issues. Her eyes will swollen and sensitive for a couple days, and she will probably have to go back on the vent for a day or so, but it is all for the good of saving her eye sight completely. Aimee and I watched a video today and poor Aimee has a huge eye phobia, so it was extra hard for her to watch this video. The video told us everything we already knew, so it wasn't a huge shocker. Kayleigh will lose her peripheral vision, but she is so young that she won't even know the difference when she grows up. Forgive me as I am trying to stay positive and keep a good attitude about this, but I was thinking of sports she wouldn't be able to play and all I could come up with was boxing. Not that she would do that anyways, but you would think someone without peripheral vision would get knocked out from a left or right hook all day long. So I guess we are safe to say that this surgery will not cause any disabilities for our sweet Kayleigh. Another great milestone was reached today for Kayleigh so let's all rejoice that Kayleigh has broke the 1000 gram mark. She weighed in at 1003 tonight (2 pound - 3 ounces). WOO HOO! From the growth she has had over the past couple weeks, I think she is growing more on the triple mix which are nutrients through an IV while she is off her feeds. I can't explain it because Kayleigh hasn't done a single thing by the book from the beginning of this pregnancy. I am just going to shake my head and throw my hands up because I don't have a single clue.
According to the website, the bracelets have been shipped for over a week now but they have not reached my front door yet. I am sorry it is taking a long time, but we will get them out as soon as they come in. Thanks for your patience on this. I have to end on an awesome note. Are you ready for this??? I went ahead and posted the email in the comments section just below at the end of this post. You will read an email from someone who has been following Kayleigh's story for the past couple months and well....I am not going to spoil it, so go read it, now!!!
8/26/2008 8:02:00 PM
8/26/08 - Chance of Blindness? Today was a very emotional day for Aimee and I. We went up to visit with Kayleigh in the early afternoon and had a wonderful visit. We were able to hold her for quite some time and she only had a few brady's or desats all day. I can tell she is so much more comfortable than the past couple days. After watching the video yesterday about the ROP surgery that is going to take place tomorrow, we felt more comfortable about what is going to take place. No one wants their child to have to go through surgery, but I felt very confident in this procedure as they have been doing it for a very long time and it is very common amongst preemies. As we were about to head out for the night, the doctor on call came in to talk with us about Kayleigh's unique case of ROP. He mentioned that it was quite weird that Kayleigh went from a stage 1 to a stage 3 in only a week. When dealing with ROP, there are 3 zones that can be effected and zone 1 is the worse sector as it can cause complete blindness or central vision blindness. He told us Kayleigh's issue was in this zone 1 and whether they do the surgery or not, she is very likely to go blind. Our hearts dropped and tears filled up our eyes. He kept going and told us that he has never seen a rapid progression like this and he was truly heartfelt for our situation. He was dumbfounded on how she has been doing so well in all other areas, that her eyes would be the one thing that failed her. The doctor told us that even with the surgery to try and repair the problem, the retina is like saran wrap that could and would most likely detach from the eye very easily. We have a high risk chance of this happening, but if we don't do the surgery, there is an even higher risk of her going blind. It is a lose/lose situation for us. We were at a loss of words. We left the NICU tonight in such a shocked state of mind that all we could think about was how we would raise this child who would be blind. We thought of all the things you would never think about unless you were in this situation. If you really sit down and think about it, it will blow your mind on how much a person will miss out without their eye sight. We thought about how she would not ever see the ocean and fireworks, some of our favorite things to do. We would have to be with her 100% of the time and learn to trust others who will be as attentive. Aimee and I sat down for dinner and what really hit home hard was that today and tomorrow before her surgery could be the last time she would ever see us.
So as the evening went on, we were suppose to get a call from the doctor who would be performing the surgery and we would be able to ask more questions. One thing we were anxious to hear was this doctors statistics. She called us around 8:30 and we spoke to her for about a half an hour. She told
us all about the procedure and then we started to ask her several questions. First off, we were quickly shocked to hear that she qualified Kayleigh to be more in the Zone 2, not Zone 1 and that her Stage 3 was considered Mild, not Major. This was starting to get a little frustrating to me since we were told earlier that it was mostly in Zone 1 and a Major case. So we kept on asking questions and the doctor told us she has been doing this surgery for 17 years and she has only had 5 individual eyes go blind and four of them were on two children. Besides going blind, there are possibilities of cataracts or hemorrhages in the eye, but she has only had a few cases of these too in the 17 years in the field. WHEEEEWWW! Can someone please tell me what God is trying to teach us here? It must be patience, because right now I am lacking a lot of it. So tomorrow at 2:30, Kayleigh will be going through surgery. The surgery will take around 4 hours total and she will be immediately put back on the vent and she may start feeds back as soon as 6 hours later. We will not find out for 6 weeks if the surgery was successful because they need to continuously check up on the blood vessels to make sure they are growing past the scar tissued area that was broken apart by the laser. There is a 75% chance she will need glasses by age 6, but we knew she would need them anyways because Aimee and I both have them. So all in all, this professional has made us feel much more comfortable that Kayleigh will not lose her eyesight. Even though the other doctor was not correct in his diagnosis and we got the worst case scenario, I am almost thankful that it happened. I could throw a hissy fit and call him everything under the sun or confront him about it and make a scene, but I would not be honoring God for the way we should act. I am actually glad it happened because I learned how much we take the smallest things for granted, such as our eyes and what we see. I kept telling Aimee tonight that yes, Kayleigh may never see beautiful things, but she will not see ugly things either. She won't judge things on their exterior beauty or see people different and laugh because they have a disability. She won't be visually exposed to murder or pornography and all the other things that are ruining the minds of our children. What I do know, no matter if she is blind or has perfect vision, by our parenting she will bear the fruit of the spirit, which is love, peace, patience, kindness, goodness, faithfulness, gentleness and self control only because our God is an awesome God. Amen! Please pray for Kayleigh and the Opthamologist that this surgery will be a success. God Bless, The Freemans :)
8/27/2008 8:04:00 PM
8/27/08 - Surgery Is Complete!!!
I am overwhelmed by all the comments today as Kayleigh had her surgery. The photo above was when we were prepping Kayleigh for surgery and transporting her down to the operating room. They had to "Bag Her"(manually breath for her with a pump) all the way down to the O.R . and even though she was fine and satting high, that was a very nerve wrecking experience. I guess when you associate CPR on television to practically seeing the same thing being done to your child, it is not so pleasant. While we waited in the holding room, shift change was taking place so there were people flying through the halls to get to where they were going. It made us so anxious and Aimee started to break down. Our room was open for everyone to see and Kayleigh surely caught the attention of everyone passing by because she is so tiny. We didn't want to leave Kayleigh, but we were ready to get out of all that madness. They took Kayleigh back to start the anesthesia, but we had to still wait for the doctor to come meet us. The surgery started a little bit later than expected and lasted around 4 hours total. Aimee and I are so grateful that my Mom and Dad were there with us to support us through this emotional time. They are so amazing and we owe them the world. Thank you guys!!!! After the surgery, the opthamologist came out to speak with us and was so wonderful. She said that the surgery went very well. As she took a better look before they did surgery, it was clear that the ROP was in zone 2, but right on that zone 1 line. It was too close for comfort, but as she did the procedure, there were no issue of detachment which is awesome! They had to do over 4,000 laser burns in Kayleigh's right eye and just over 3,o00 in her left. The doctor mentioned that it would take a full 6 weeks to find out how successful the surgery was, but from her experience, she felt that Kayleigh will only lose a little bit of her peripheral vision in both eyes. PRAISE GOD!!!! Let's just pray that she is right and nothing bad changes in the mean time. They are going to check up with her weekly, so we should know if things are not progressing. Once Kayleigh was back in her NICU spot, she was still knocked out by the anesthesia and pain medicine that she was on. We got to hold her little hand and wish her a good nights sleep. She is probably going to be on the vent for several days, but it was good to see that she as satting at 100% with oxygen at room air. I am sure that will not stay so good when the medicine starts to wear off and she starts to open her eyes. Her eyes have medicine all in them and she probably won't be seeing too clear when she opens them and that will irritate the mess out of her. Overall, it seems that the surgery was a success and we hope things continue to be a success as the days go on. All we can do it pray and trust in God as He already knows the outcome. If you didn't read all the comments from the last post, please go back and read Candace's story about the footprints on the beach. It is so amazing and I about lost it while I read it to my Mom tonight. God is certainly walking with us right now as He continues to show Himself through Kayleigh. God is so wonderful and I can't say enough how important it is to have Him in your life as He will always be there for you and do great things! I really want to thank the doctor for taking the time to talk with us last night and after her surgery. She was a ball of fire and we loved her to death. I can't say enough good things about her as she was unbelievably good at what she does. Without her expertise and steady hands, our daughter may never see and this doctor was a certainly a blessing to our family. She will have a place in our hearts forever. Please continue to pray for Kayleigh that this surgery will be a complete success. We appreciate everyone being there for us! You all are so awesome!! The Freemans :)
8/28/2008 9:53:00 PM
8/28/08 - HAPPY BIRTHDAY AIMEE!!! First of all, today is a very special day. Aimee is celebrating her 34th birthday today!!! Woo hoo. We are getting together with my family this Saturday to enjoy Mom's lasagna and some birthday cake. Aimee said she is taking that day off from dieting and I don't blame her because Mom's lasagna is to die for. We had a wonderful day today, spending some quality time together. Kayleigh was very quiet today as she is still recovering from the surgery. The doctors said it takes a little longer for a preemie to come off of the anesthesia, so she was sleeping pretty much the whole time we were there. Aimee and I had our hands in the isolette from both sides. We held both of her hands and alternated stroking her little head. There was a period of five minutes where she was opening her eyes a little to see who was out there. I think she heard us talking and was very happy because she was satting in the high 90's. Whenever we would pull our hands out, she would first try to squeeze our hands as if she didn't want to let go and then her sats would go down a little. It was as if she was more secure when our hands were in there with her. We are so happy that she is doing well after such as stressful surgery. Aimee just got off the phone with the NICU and I am shocked to say that she is continuing to grow better with the triple mix nutrients that they are giving to her through an IV than the breast milk fortifier. She weighed in at 1070 tonight which is (2.574 pounds). I am very happy to see an increase like that. It may not be much compared to a normal preemie, but that is a lot for Kayleigh. Although we know she doesn't do anything by the book. Great news!!! The Kayleigh bracelets came in yesterday and we mailed them out, so they should be arriving to you soon. I am dying to see all the photos and letters for Kayleigh's scrap book. We still have to get more bracelets for the last few that placed their orders, so if you are thinking of still getting one, please do. We are overwhelmed by all the people who purchased one and it is going to make an awesome scrap book. Thank you all so very much and God Bless! The Freemans :)
8/29/2008 6:11:00 PM
8/29/08 - Doing GREAT!!!
Today has been just a wonderful day. As you can see, Kayleigh is already off the vent and back on the nassal cannula. That is amazing because they said it would be up to a week before she would be off the vent. She is also going to be starting her feeds tomorrow. They will start with a small dose to see if she tolerates it and if she does, they even said we could try to introduce her to a bottle. You would think it would be too early for that because of her size, but she is on;y two weeks out from her original due date and that makes her almost full term. It is hard to imagine that when you look at her though. Everything she does is normal except for her tiny little body. I am just ready for her to get this feeding situation down. We had a great visit with Kayleigh today. We showed up about fifteen minutes after they extubated her and she was a little cranky, but calmed down once Aimee and I got our hands in there. She was so cute, as she was licking her blanket. I am guessing she really liked the the texture to it. She was satting good, her eyes were wide open and she was having a grand ole time. She is a lot stronger than I would be after having eye surgery. We are so happy that she is recovering well. Her eyes are a little puffy and red, but that was to be expected. She gets eye drops a couple times a day and I am shocked that she wasn't irritated when they put them in. I would think the soreness would upset her, but she is one tough cookie. You would think I already knew that. ha! Thanks for all your prayers and please keep them coming!
8/30/2008 9:47:00 PM
8/30/08 First Bottle
Today was a wonderful day as Kayleigh hit another milestone and took her very first bottle! Woo Hoo! It was the cutest thing I have ever seen as she was going to town on her paci and then we switched over to the bottle. The look on her face when something tasty came out was priceless. Her eyes widened
up and she looked around as if she has hit the jackpot! The funny part of the whole video is around the 5 minute mark where we investigated the bottle to see how much she took. As we were giving the bottle back to Kayleigh, she was out like a light. I guess all the excitement and sucking, she fell right asleep. It certainly gave us a great laugh. We just checked in with the nurse and Kayleigh is doing great. She has only had one desat all night and it was in the 70's, which is great. She tolerated her feeds tonight and had no aspirate at all. We were very pleased with her recovery time and the way she has been acting the past two days. She is just full of energy as today she was practically lifting her head off the bed when she was lying on her tummy. She is getting strong! She weighed in at 1070 grams, which is 2.6 pounds. We can't wait until tomorrow to try another bottle. She should be having an eye exam soon, so I can't wait to hear how that is coming along. Thank you all so much for your prayers through our ups and downs. We are just beyond thankful for every single one of you. Your support has been such a gift as we could not do this alone. I promise that for the rest of my life, I will always look to give a helping hand just as you all have done for me. Thank you so very much! The Freemans :)
9/1/2008 12:57:00 AM
8/31/08 - Tummy Troubles Again
I don't know what is going on with this tummy issue, but no one can lay a finger on it. Late last night, Kayleigh started to have some aspirates with her feeds. They decided to cut her feeds off and get an x-ray taken of her belly. It came back that she had some trapped gas again and they wanted to see that get better before they started to feed her again. The second x-ray tonight didn't show any change and they have another x-ray schedule in the morning. If things don't turn around in the morning, they are going to do a lower GI (Gastrointestinal) dye test, where they shoot some dye in her behind and do an ultrasound to see how things are moving along her digestive tract. If they don't find anything there, they will do an upper GI. Hopefully they can find out what the issue is and get past this hurdle. Like I said before, I really feel this is the last major hurdle to get by to allow her to grow, get the VSD surgery and be on the home stretch. One way or another, I am just ready for her to start eating and growing. She was a little cranky today around her feeding time, probably because she was hungry so it hurts to see she is not getting food right now. She is almost a term baby, so I am sure she can start to associate when she is hungry or not. They did crank up the amount of nutrients they are giving her, so that does make me feel better. She lost 10 grams, falling back down to 1060 total. They did measure her tonight and she measured 35 centimeters in length and her head measured 26 centimeters in diameter. I was able to hold her for a little bit today. My oldest brother Scott came in with me today, while Aimee waited with my parents. Scott has not been able to make it in to town to see her yet, so he was beyond stoked. I just love to see people's reactions when they see her. I think he said something like "OOOOHH MAAAAAN." It certainly made my day because I have been so excited for Scott to finally meet her. Other than that, Kayleigh has been doing good. She was a little cranky during the later part of our visit, but besides her probably being hungry, she definitely needed a diaper change. They did give her a suppository earlier today which helped push things along and I guess the rest followed the path
while we were there. She has been breathing well and I don't remember her having any major desats or brady's over the past day or two. Please pray that we will get through this tummy issue and on the right track. I noticed some people have gotten their bracelets in the mail and I can't wait to see photos. Thank you all so much for all your thoughts and prayers. I hope everyone has a wonderful holiday!
9/1/2008 6:16:00 PM
9/1/08 - Stressful Day
Right before her meltdown.
After her meltdown. You don't want to see what she looked like during her meltdown. Today was a very stressful day as Kayleigh was acting up like never before. This morning, the doctors performed the Lower GI Dye test and soon after, the opthamologist came in to do an eye exam. So needless to say, Kayleigh was put through two stressful situations that caused her to be so irritated that it stressed Aimee and I out to the hilt. The Lower GI test came back normal with no obstructions, so that is great news. She had some major blowouts today and from looking at it, I am almost positive that was the reason she was having a bad day. They are going to start her feeds again tomorrow, so I am excited to see if we have progress this time around. The eye exam went great and the doctor said her eye are responding wonderfully. This is really great news except we were not able to enjoy it because of how irritated it made Kayleigh. When we showed up, she was so uncomfortable and she was breathing as fast as can be. She was desatting every now and then, but just seemed nothing like her normal self. After about fifteen minutes, her desats started to get worse and she wasn't recovering from them. She would stick around the 40-50's with her saturation and there were no signs of getting any better. Sometimes is would drop in to the 20's and that is when things started to get really scary. Aimee tried to hold her for a second and all of a sudden, Kayleigh went apnic but didn't catch her breath to start breathing again. It was a good 25 seconds before Kayleigh started breathing again. Our nurse had started to bag her to see if that would help to bring her sats back up and she gave her some medicine to calm her down. Neither were working and we were just flipping out. After about 45 minutes through this heart wrenching situation, the doctor advised the nurse to put her on the bubble cpap, but that didn't help either. It was on for about 5 minutes before we were told to leave the room as they intubated her and put her on the vent. When we got back in, Kayleigh had worn herself out so bad that she was sleeping and the vent was breathing for her. We were so relieved to see her calm and satting good again, but I hope she is
relaxed again when she wakes up. We both just held her hand and watched her sleep peacefully for a while before we went home. We are both so stressed out right now! It was just a very crazy day. It just breaks my heart that there was nothing we could do to calm her down. I am so thankful or all the doctors and nurses who helped out today. They did a great job. Pray that Kayleigh will have a much better day tomorrow and that she will tolerate her feeds well. Also, please give thanks for such wonderful and knowledgeable doctors and nurses. God Bless, The Freemans
9/2/2008 7:32:00 PM
9/2/08 - What is going on?
Well, after a very stressful day yesterday, today was looking much better, but only from the outside in. Sure Kayleigh is going to be feeling much better after being given a time release sedative, but the truth is no one knows why she is has been so irritated. All day today, she would wake up and clench her fists, turn red and whine all while breathing very fast as if she was hyperventilating. She would desat when she was awake and she would have apnea when she slept. The doctor came in to speak with us today and said that there could be many reasons why she is not happy or in pain. 1: The eye surgery and exam, 2: Stress from the Lower GI test, 3: Medicine to dialate her pupils, 4: No food, 5: Bloated stomach/trapped gas. No one can lay a finger on it and
Kayleigh certainly can't tell us. So the doctors are going to keep an eye on her and see what is driving her crazy. The doctor is also concerned about her lack of growth and wants to make sure it is nothing genetic. To be honest, I don't think anything is wrong genetically because it's probably the lack of food she has been given that is keeping her from growing. From the amniocentesis at the beginning of Aimee's pregnancy, Kayleigh was in the clear from any genetic disorders, but our doctor wants a physician to come in to check her out again. Kayleigh's blood gases came back good today. She did get some blood because her hemoglobin was low and she started her feeds back late this afternoon. She is getting the good stuff (Neocate), which is like $60 a can, ouch! Hopefully this will work for Kayleigh because I seriously don't know what else will. Aimee and I are still on edge, but hopefully things will start to turn around soon. She did weigh in last night at an unbelievable increase from the night before. She weighed in at 1158 which is almost 2 pounds 9 ounces. We will check in later tonight to see if that was an error or true 98 gram weight gain. Hopefully it was accurate, so we can get closer to this 2000 gram mark. So what is going on? I have no idea and it doesn't seem like anyone else does either. The main struggle through this is not that Kayleigh might have a serious problem or not, but just not knowing what that problem is. No one wants to see their child in pain and not knowing what that reason is that is causing them pain. That has got to be worse than Chinese water torture. All we are doing right now is driving ourselves insane by asking, "Could it be this" or "Could it be that." Right now, trusting in God is all we can do and hope that what ever it is, it shows its face quickly so they can fix it. Please pray that whatever this issue is, it is resolved quickly and Kayleigh can rest peaceful again without pain medicine. I just don't want there to be any more struggles and to journey the rest of the way on an easy down hill slope right out the door. I know it is not the end result, but the journey that matters. But come on, how much more are we suppose to learn from this? (Sorry I am trying to be funny without flipping out) Thank you all for your support through these tough times. I could use a hug from you all, but Aimee would really think I lost it if she caught be embracing my computer.
9/3/2008 5:30:00 PM
9/3/08 - AMAZING!!!!
First off, let me tell you about Kayleigh before I go in to what was so amazing that happened today. AHHH, I can't wait to tell you!!! Okay, first off, Kayleigh had a much better day than her last few days. She was no where near as irritated as she was which only means that whatever was bothering her is slowly dissipating (HOPEFULLY). She met with the PT (Physical Therapist) today and she said Kayleigh looked great and she was not grumpy when she stretched her arms and legs out for her workout. The PT comes once a week to give Kayleigh a workout to make sure her range of motion is good and there isn't any physical complications. Kayleigh also started her feeds with the Neocate and at first she was having some aspirates, but she had none when we were there for her 3 o'clock cares. She took all 3 mls with no problem at all. Let's now hope those 3 mls find their way out of the body without any issues this time around. Being that they use the Neocate as a last case scenario because it is expensive, I don't know what else they would do if this doesn't work. Cross your fingers and say your prayers. I got to hold Kayleigh for almost two hours today and she was perfect the whole time. She got a little grumpy towards the end, but it was time to do her cares. I am guessing she is getting used to waking up every three hours for cares. We were so happy to see that she was relaxed and sleeping peacefully. We changed her diaper and she pooped a little, but almost peed all over Cynthia. Kayleigh also held her temperature very well when she was out. OKAY!!! Are you ready for some awesome news???? If you have been following our story from the beginning, you would have learned that quite a few doctors agreed that Kayleigh would not make it to term. She had too many issues that pointed to an outcome of her not surviving much longer. This was a ten week battle to gain enough weight for viability. When we got the news from one doctor who told us not to change our normal living schedule because
it is inevitable that Kayleigh would die, we decided to get a second opinion. The second doctor we spoke to hit us with the same news, but had much better bedside manner. We were still given a very very small chance, but they knew we weren't giving up without a fight. That doctor emailed Aimee and I this morning to ask how Kayleigh was doing. We were so excited that the doctor contacted us, even with his busy schedule to ask how our little girl was doing. That right there shows a lot about a person. (Here is the exciting part) As you know, Aimee and I want to share our story with anyone and everyone to give them the same hope that we were given by so many of you, well...He is speaking at a medical conference tomorrow and wants to share Kayleigh's story with many other doctors to give others hope. He wants to inspire people that no matter how bad a situation looks, it is important to have hope. HOW AWESOME IS THAT???? Below is his email that just makes all of this hard work, stress, anxiety and insanity worth while. I am so glad things are well. I hope things go well with the genetics doctor. I look forward to meeting Kayleigh and seeing the 2 of you in the near future. Tomorrow I am speaking in a Medical Ethics conference and I am hoping that you might allow me to share some of your story (without names, of course). Although it is a conference about end of life care, I get to talk about care at beginning of life! . . . and HOPE. . . especially when things look worrisome. I think your story would be inspiring and would emphasize the importance of hope. . . If you prefer not, I certainly will respect that. See you in the near future, That is exactly how I want to glorify God with the situation He has given us. I want nothing more than to spread the word so others will have hope, and that is exactly what has been happening. I have had so many people share their stories on how Kayleigh has made a change in their lives and now I can reach out and touch the lives of doctors who at first hand that can give their patients hope. Beyond all of my triumphs in my life, helping other people make a change for the better in their lives has been the most gratifying of them all. I feel like God has used Kayleigh in my life to help others find hope and that is exactly what I am going to do. Thank you all for your prayers, words of encouragement and just plain being there for us. God Bless!!! The Freemans :)
9/4/2008 10:29:00 PM
9/4/08 - ADVICE NEEDED!!!!! Today they started Kayleigh on continuous feeds with the Neocate. Over the amount of feeds she has gotten, she has aspirated half. That means she is digesting half of her feeds too, so we have to try and stay positive. Aimee and I have been getting one of those conscious feelings in our stomach about her feeds that we will need everyone's advice on. Out of all the feeds Kayleigh has gotten from day one, the breast milk was the only thing that she digested well and made it to the maximum feed amount (15ml every 3 hours). The only reason they took her off of it was because her blood sugar level was low. So when they took her off the breast milk, they decided to put her on straight formula. Soon after her first backup, we pressed for them to fortify the breast milk. Then, we ran in to another backing up issue and that led them to just do the Neocate. Today, Kayleigh is aspirating more than usual and after two days of her tummy looking great, it is starting to get firm again. I am afraid we are going to run in to the same issue with it backing up. We just have a bad feeling, we don't know what to do and we certainly don't want to have her go without feeds for a couple days again. Aimee and I feel more than ever that the breast milk is best, but has anyone had the experience with maybe doing plain breast milk and use a little bit TPN (Triple Mix) to help with the blood sugar??? I know that doing a lot of TPN, it is not good for their system and can cause major issues, but if we keep running in to problems with her tummy issues on other feeds, she will be on TPN more than we want anyways. I also know that breast milk may not have a lot of calories, but it won't matter if she isn't getting the feeds anyways. The TPN has calories, but we don't want to give her something that can be harmful in the long run. We are thinking of talking to doctors in to doing plain breast milk and just adding a little TPN at a time to keep her blood sugars up. For those with knowledge or experience, is that a good or bad idea???? Even though she just started the Neocate today and has been on continuous feeds, do you think it is too early to make a change or should we wait to see if she gets better? I have heard great things about Neocate, but Aimee and I were reading this article tonight about the risks of formulas and fortifiers: http://www.babyreference.com/FeedingPreemieForBestSurvival.htm Other than that, Kayleigh was having a good day. They dropped her from 6 to 5 liters on her air flow and she was sitting around 23% all day. She had no brady's and only a couple desats, but she was able to recover quickly on her own. Her vitals were good and she has been holding her temperature very well. Aimee held her for a couple hours and she was very peaceful. I am much happier to see that she is not as irritated lately. I really feel that the two procedures they performed on her and the massive turd she finally passed through her system was the reason for her attitude problem. I don't blame her for being so grumpy and boy did she have me worried. I have one girl in the NICU and another who wants to grow up too fast already. Lord, please give me the strength. (ha-ha) Please look in to this with us and give us a helping hand. I want the best for Kayleigh and when we turned to you all for help at the beginning when she was growing behind with no amniotic fluid, we listened and she beat the odds. I know she can beat this hurdle, but since Kayleigh can't tell us what she needs, we need to help. I would love to hear from anyone and everyone who has some or a lot of experience with this.
9/5/2008 10:20:00 PM
9/5/08 - Things Are Looking Up!
Today was one of the better days that we have seen in a while. After every feedings, Kayleigh seems to be doing better and better. She has not pooped yet, but everyone keeps telling us that since she was cleaned out with the Lower GI test, she probably needs to fill her tanks back up. So if we don't get a poop over the next couple days, I will start to worry. A lot of people mentioned in their comments about Reglan and I forgot to mention that they started Kayleigh on that yesterday. Reglan is medication to help digestion of her feeds. Since Kayleigh started her new Neocate feeds, she has been doing better as the time goes by. I'm hoping the Reglan is helping. At first, she was aspirating most of her feeds and now she is digesting most of her feeds. Throughout the past 6 hours, she has not aspirated anything, so let's pray that she keeps that up. I did get a chance to speak with one of her doctors today. Last night after I posted, I spent about 3 hours going back through all my posts to dig up research on her feeds, poops, weight and aspirates. I took in my information to the doctor to share with him our thoughts. He agreed with my research and that if the Neocate doesn't work, we will go back to plain breast milk and keep an eye on her blood sugar levels. I felt like a weight was lifted off my back because my hard work with this blog and my notes have paid off big time. I just hope that the Neocate works so we don't have to waste anymore time fiddling around with different possibilities. Kayleigh weighed in tonight at 1159 grams which is around 2 pounds - 9 ounces. She was dropped last night from 5 liters to 4 on her flow and is doing well with the adjustment. Kayleigh has not had any major desats all day today. When we were holding her for a few hours today, she was resting well and giving off an occasional smile. Since Kayleigh has been holding her temperature much better, they have been dressing her in some tiny preemie clothes which are still way too big for her. She looked so precious in her outfit. I want to apologize to everyone for a goof-ball mistake on my part. We got the bracelets in and we sent them out the other day. Well, they started to show back up in our mail box because I put a 26 cent stamp on them. OOOPS! I will be correcting the problem and getting the "right" priced stamp put on this
time. Sorry :( Thank you all so much for your advice on the post yesterday. We got some really good ideas and it opened our eyes to other possibilities. We can't live without you all so thank you all so very much for all you help. We love you all so much! God Bless, The Freemans :)
9/6/2008 7:47:00 PM
9/6/08 - Another Pleasant Day :)
Today was another good day for Kayleigh. They increased her feeds to 3 mls every hour continuously. The awesome news is she has not aspirated any of her feeds today. She has not pooped yet and is on the Reglan (helps motility), which is still a concern but her belly isn't blowing up either. Tomorrow, Kayleigh will be at 12mls every 3 hours which is tied with the highest she has ever been. Before, she was on 12 mls with breast milk, but she had been pooping several times everyday too. Please pray that she will start pooping soon. She weighed in at 1143 grams tonight (around 2.8lbs), which is 16 grams less than yesterday, but the OT (Occupational Therapist) came by today to give Kayleigh another workout. She is doing really well in that department, so we are really happy to hear that. Kayleigh also only had one minor desat today and it has been several days without any bradys. I am so pleased to hear she is breathing well after being lowered to 4 liters the other day. Her oxygen is set at 30%, but they will wean her down as time goes by. I went up today by myself to have a little father-daughter time alone. I held her for an hour and a half before I had to get home. Poor Aimee had a soar throat today and wasn't dare going to go to the NICU. She was so sad because since Kayleigh has started to get dressed up, she got her a few new outfits and wanted to go up there to dress her up. Please say a prayer that she will feel better soon. Good news!!! Since Kayleigh is holding her temperature much better, the nurse this evening actually had to un-swaddle her because her temperature was at 100.1 degrees. If she starts to keep warm and they can wean her "heating" system down, she will be able to move in to a bassinet. That will be awesome, but then I am going to be more nervous about germs being passed easier. Can you tell how over protective or insane I am going to be. Someone please help me!!! (ha-ha) Please do me a favor and do a "poop dance". I don't even know what a poop dance is, but if a rain dance works, then a poop dance has got to work. If you have to do it at work, then just wiggle in your chair with your hands up, but don't blame me if your co-workers look at your weird. Just tell them your doing it for Kayleigh and maybe your whole office can wiggle together. :)
9/7/2008 8:21:00 PM
9/7/08 - Making Some Progress Today was a good day, but we still have yet to see some poop. So keep those poopy dances coming!!! The nurses did give her a glycerin suppository this afternoon which helped a little, but not a whole lot. Since she hasn't pooped and her tummy was starting to get big again, they increased her caloric intake from 20 to 22 instead of increasing the amount. She is still digesting it all because she is not having any aspirates.
Some of the progress she made was that she came down to 3 liters on her air and was breathing great all day today. She didn't have any desats and she has been really active and happy while I held her today. Aimee was so happy to get in there today to spend some time with her after having a soar throat yesterday. Tomorrow, since we are able to dress Kayleigh, we are going to bring up some of her new outfits and play dress up. That is going to be a lot of fun. Kayleigh weighed in at 1154 grams which is still around the 2.9 pound mark. Her length is 35 centimeters and her head circumference is 27 centimeters. Her head is the only thing that has changed since the previous measurement. They had a Genetic Doctor come by the other day to see what could be causing some of these feeding issues or irritation problems that Kayleigh has been having. The pre-test results came back negative and we are still waiting for the final results. We knew from the amniocentesis, that she did not have certain genetic disorders, but I guess this test checks a bunch of other things. So other than that, it was a pretty quiet day. We are still praying for some poop, so hopefully that starts to happen because everything else seems like it is getting better. Thank you all so much for all your help through this and I hope your weekend was wonderful!!!
9/8/2008 11:41:00 PM
9/9/08 - Dance Faster!!! Kayleigh had another good day today. Not a whole lot has changed since yesterday. She still has no pooped and her belly is starting to get bigger again. They said it is still soft though, so that makes me feel a little better because it would not be good for it to be hard. They are giving her another glycerin suppository tonight to help move things along. Let's pray that she has a blow out and starts to poop on a regular basis. Since the last suppository worked a tiny bit, maybe you all need to do your poop dance a little faster or more intense (ha-ha). Some great news is that she had another eye exam tonight and the doctor said her eyes look awesome and are responding well to the surgery. WOO HOO! Since Aimee's soar throat got better, her sinuses backed up and she was struggling today, so I went to visit Kayleigh this evening with my best friend Mike. He is in town for a couple days for work and will be staying with us. Mike hasn't been up to see Kayleigh since about 6 days after she was born. He was able
to hold her hand and see her pretty smile tonight. Well, that smile came about 45 minutes after I started to hold her because she was so crabby at first. I am sure she was irritated from the eye exam a few hours before. Once she calmed down, I was as still as can be so I didn't wake her up again. Sorry I didn't have any photos as I planned to take some tonight, but if you were in my shoes you wouldn't want to disturb her with any light or movements either. Tomorrow, Aimee should be much better to go back up there so we can play dress up and take some photos. She was so sad today and I felt so bad that she couldn't go up to visit. If you think about it, it is hard enough not being able to bring your precious daughter home with you, let alone not being able to visit her either. We know how important it is to prevent passing any type of germs, but it is a very tough situation to be in. Kayleigh has increased again in her weight, weighing in at 1174 grams (2.9 lbs). She is still on 3 liters of air flow and doing very well with that. She is continuing to hold her temperature well and had a only a few aspirates today. It seems like she is progressing in everything else and her feeds increased to 4ml every 3 hours, but we are still waiting for her pooping to kick in. I know it seems like all I talk about is praying for her to poop, but like I said over and over, I feel this is the last step in the hurdle. If we can get this going, we will gain the weight we need to get closer to the VSD surgery and out the door. I am ready for her to come home and we start our lives and memories together at home. I promise to keep up with the post so you can continue to follow in the journey of her beautiful life.
9/9/2008 7:36:00 PM
9/9/08 - What a Beautiful Day!!!
Kayleigh's new outfit
Cynthia, one of the best nurses around! Today was just an amazing day. Aimee and I had such a wonderful visit with Kayleigh. Since Kayleigh is now becoming a big girl, we brought some of her new outfits and played dress up. She looked so darn cute in her outfit that we just could not get enough of her. I was snapping pictures left and right as it was just a proud moment for me. Kayleigh came down on her oxygen flow again!!! Woo hoo! She is now at 2 liters of flow. She also came down on her TPN (Triple Mix) IV fluid to the lowest setting of 2. They increased her feeds to 5ml per hour which is the most she has ever had. She hasn't pooped yet, but they are giving her more and more glycerin suppositories as the days go on to help her out. She is just doing amazing in all other fields except the pooping part, but they say if her belly isn't hard, then she will just need a little help trying to pass it out of her system. I would rather her poop, but if she is okay, then I am okay. The photos we took tonight were great and I wish I could post them all, but these are the best of the bunch. Kayleigh was so awake and alert that it was just a priceless moment. She was not crabby for once and since she is holding her temperature better, we were able to hold her without being wrapped up so much or a beanie on. Keep praying for poop and tons of growth, but let's all rejoice in her achievements as she is getting closer and closer to making it home. God Bless, The Freemans :)
9/10/2008 11:46:00 PM
9/10/08 - One Step Back...Again Well, our fears have come true with this belly issue again. Kayleigh's feeds have been stopped once again due to her belly backing up. The x-ray showed her tummy being full of mostly gas, but there was some stool still in there. Kayleigh started to get really irritated throughout the day and started to desat more often. Tonight, she hasn't desatted nearly as much, but they pulled whatever aspirates she had on her tummy and tried to get out as much air as possible. It seemed to work if she is not dessating anymore. They will keep an eye on her tummy and start her feeds back again once it goes down. I am not sure what the plan of action is with the type of food they will use. It seems to me that we may be right after all with the plain breast milk suggestion. I guess we will find out if that is the route they go. Other than that, Kayleigh grew a bunch today. She weighed in at 1245 grams (2 pounds - 11.9 ounces). The nurse weighed her twice thinking there was an error, so hopefully tomorrow's weight proves it right. Since Kayleigh was having an issue with her belly tonight, they increased her flow back up to 3 liters and they schedule an Upper GI test for tomorrow morning. I know Kayleigh had the eye exam on the same day this past week when she had the Lower GI test done, but I just hope she doesn't flip out like last time and end up on the vent again. So, today was a step back, but maybe a step closer to finding out what works and what doesn't with her feeding situation. I hope we can figure something out soon. She is doing so well in all other categories, that I would hate for this to hold her back. All the doctors and nurses have been wonderful in keeping us aware of all options and educating us on each topic. The best way to make this NICU experience much easier, is to learn as much as you can. If we don't know something, we stress out about it. So if you are stressed for us because you may not understand something, please let us know and we will do our best to explain. I have learned a lot of people just get stressed out about the wires that are attached to every sector of Kayleigh's body. The wires alone can be a scary sight, but when you get in to the deep waters of the balancing act, then fright is merely an understatement. Please pray that we can link this last piece of the puzzle, so Kayleigh can keep moving forward. Also I know today, the 11th is not a pleasant day in our history, so please pray for those unfortunate families who lost their loved ones and who are dealing with much more stress than we can fathom. I appreciate everyone so much and I wish you all the best. God Bless, The Freemans :)
9/11/2008 9:35:00 PM
9/11/08 - Breast Milk Here We Come :) Today was a good day in many reasons. Even though Kayleigh has been cut off from feeds right now until her belly gets back to normal, it is one step closer to finding out what she will tolerate. We spoke with the doctor today and he not only feels like breast milk is the way to go, but that maybe Kayleigh needs to start feedings from a bottle. He said that feeding from a bottle will start to trigger the body's normal response to motility, which starts from the mouth. She has been sucking really good on her paci, and tomorrow she will be at full term, so maybe she will be able to get down the technique quickly and we can get started on the right foot. We are also not going to start back from square one with her feeds, so we won't be taking too much of a step back. To hear that we are going back to breast milk has made me excited, but to hear that we are trying it from the bottle just blows my mind. I am so ecstatic that I took the time to do my research on what Kayleigh tolerated in the past and had that meeting with the doctor. It seems to be paying off. All we have to do is pray that Kayleigh will keep her blood sugars up and to adjust quickly to the bottle feedings. How awesome would that be if the answer we were looking for was to just do it the way God planned for us to. Other than that, we had a great visit with Kayleigh today. She did not get crazy upset like last time when she had the Lower GI test done. I was worried we were going to walk in there and she'd be flipping out. Aimee and I bought Kayleigh a sound machine for her isolette. It plays a few different things for Kayleigh to listen to and it also has colored lights that will shine above her, giving her something to look at. We played it while Aimee held her today and she loved it. She was smiling when she heard the crickets and quickly fell asleep when the classic songs came on (Typical). Kayleigh's weight last night was a pretty true weight because she gained 3 more grams tonight, weighing in at 1248 grams (2 pounds - 12 ounces). Well, To hear some good news about the change in her feeds and that she was having a happy day, we are thrilled. I just hope the tummy goes back down quickly so we can start her feeds back. Thank you all for your support through this. This has been a tough road, but I feel in my stomach that things are taking a turn for the better. Pray that she will tolerate the breast milk and we can keeping progressing forward.
9/12/2008 9:08:00 PM
9/12/08 - Thank you!!!
Today was a standstill as we are still waiting the final results of the Upper GI test. They have done three x-rays since yesterday afternoon and since Kayleigh was so backed up, they dye has not made its way through her system. The journey that the dye has traveled so far shows no problems, so that is good news. Let's just hope the rest of the way is clear. We think more than anything that her body just has very slow motility with anything she has been given but breast milk. If that isn't a sign, then I don't know what is. Otherwise, Kayleigh was doing great today. She was a little cranky while we held her, but you can clearly see she is trying to pass all the mess in her system. We did what we could to comfort her as we all know what a painful bloated tummy feels like. This might be a little too much info, but I can certainly feel her pain. When I was probably 10 years old, I was stuck in a fetal position because I had so much trapped air. I was crying like a little baby and my parents took me to the hospital. I wish they can give Kayleigh what they gave me that night because I had a "seriously" 1 minute long gasser that made all the pain go away. I felt so embarrassed as I thought I was dying right there on the spot, but trapped gas is all it was and us Freemans normally don't have a problem in that category (ha-ha). After Kayleigh was having an issue with getting comfortable because her tummy was hurting, Aimee found the perfect position. Aimee slouched in the chair and laid Kayleigh on her chest, face down. Kayleigh normally doesn't like to lay face down, but she was enjoying it today. She looked so comfortable and we were so sad to leave her today. I felt so much better after talking to the nurse tonight as Kayleigh wasn't uncomfortable at all since we left her. She actually came down on her oxygen a little and was relaxing very well. After an hour, I took over and she was comfortable for about 15 minutes. I guess Mommy's chest was a little more comfortable than mine. Oh well, I just wanted her to be peaceful, so it didn't matter giving her up. Aimee sure rubbed it in though, which was quite funny. We have until the 15th before the Parents.com contest is over. I am not too concerned with winning the contest because Kayleigh will not be able to go to NY for the finals anyhow, unless they come to us which I seriously doubt. I am just so glad she made it to two out of three front pages with her photos. She is ranked 4th (Most Viewed) and 9th (Most Recommended) out of 24,709 photos and we have touched so many people with her story. I put Kayleigh's
photos on there for one purpose and one purpose only, and that was to touch someones life in one way or another. We have had many people respond so many positive ways, which makes it a complete success in my book. So thank you for all of those who voted and if you truly believe we can bring NY to us, continue to vote a million times. Maybe NY can come to us and we can share our story in their magazine to touch many more lives with our precious Kayleigh. You all are awesome and for all those who say they are inspired by our little girls story, well we are inspired by all of you lending a helping hand to a family you barely know. We are a family who has so much strength because of the people who believe in us (You!). We are a family who has held it together in every aspect of our lives because of you. We are a family that has sincerely learned the value of how God wants us to treat others because of you. I would give every single jewel on my heavenly crown to all of you for being such an amazing blessing to our family. We are truly blessed to have every single one of you praying for Kayleigh, and I believe more than ever that God has listened to our prayers and it proving time and again how awesome He is. Thank you all with every ounce of our souls! Aimee and I are forever thankful. God Bless, The Freemans :)
9/13/2008 11:14:00 PM
9/13/08 - Ooops, Guess what???
After everything that was going on yesterday, I forgot to mention that Kayleigh is now a term baby. Woo Hoo! Aimee's due date was the 12th, but it is crazy to think that Kayleigh is almost 3 months old now. I was watching Aimee hold her today thinking about how much she has grown. At one point, Kayleigh was a scary 13 ounces and now she is weighing 2 pounds - 12 ounces which is 3 times her size. I know that her feeds have been a hard hurdle to jump, but if you look at where she was and where she is now, that is awesome! I even changed her diaper today and noticed she wasn't wearing the little tiny diapers anymore. Maybe normal children grow fast, but we all know Kayleigh is no normal baby. She does things her way, ha-ha. Overall, today was a good day. The Upper GI test results came back showing nothing out of place that would be causing her feeds to back up. They were looking for a narrowing in the intestines, which now shows that slow motility is to blame. Once her tummy goes down, they are going to start her on the breast milk and probably from a bottle since motility starts from the mouth. She was breathing great all day today and got the hiccups a couple times which was very cute. Her oxygen is still at 3 liters and 25%. We held her for a couple hours today and took some more photos of another new outfit that Aimee bought her. We were shocked that Baby's R US had some preemie clothes that would fit Kayleigh, but they did. The brown and pink outfit is Aimee's and Marsha's (One of our primary nurses) favorite one. Thank you all so much for your support and pray that her belly goes down so we can start her back on the breast milk feeds. God Bless, The Freemans :)
9/14/2008 8:40:00 PM
9/14/08 - Inspired Today was a good day. Kayleigh was weaned down on her oxygen to the lowest setting yet. She is at 2 liters of flow and taking in about 28% oxygen. When Aimee and I were there today, we peaked in and Kayleigh had her nasal cannula pulled completely off her nose so the oxygen was going nowhere. The cool news is that she was satting around 94%, which is perfect!!! Kayleigh was trying to tell everyone she was a big girl and doesn't need any help to breath. Kayleigh still has not had a good poop and the doctors are waiting for that to happen before they start her feeds back. She was really irritable today that Marsha, one of our primary nurses, took her out and put her in a swing. We never got to see her in it or I would have been snapping photos left and right, but the nurses said she looked adorable in it and was enjoying it tremendously. It helped calm her down, so that was good to hear. Talking about calming Kayleigh down, the nurses said Kayleigh just seemed to be grouchy all day long, but when Momma laid Kayleigh on her chest, she just stopped fussing. For over an hours, she laid on Aimee's chest in complete silence and seemed to be so peaceful. She fell asleep within minutes and showed no signs of irritability at all. It was all wonderful until we had to put her back in her isolette to go home. Kayleigh went right back to being upset and fussy. After five minutes, Aimee put her hands in and had a little talk with her. I don't know what she did, but she worked her magic and sweet Kayleigh was out like a light. Those two have such a special bond, it is amazing! It was hard to leave tonight and poor Aimee felt like Kayleigh needed nothing more than us to be there to make her feel better. I am sure she is just as hungry as can be. One of the nurses said the other week that she was too premature to know what hungry is all about, but you can't use that excuse anymore because now she is a term baby, and a term baby is grumpy when they're hungry. There is no doubt that Kayleigh just needs some food, so hopefully she will go potty and start eating soon. (Keep doing your Poopy Dance) We did get some inspiring news today. Since Kayleigh is coming down on her oxygen and she is holding her temperature better, the only thing left to do is come off the IV nutrients (Triple Mix) and she will be a good candidate for coming home. They still would like to see her grow a little more, but our nurse said that they have sent numerous 3.5 pound babies home before. They said if we do go home before she reaches the 2000 gram mark, that we would just have follow up appointments for her heart to do the VSD surgery at a later time if it shows any problem signs. I think that is scary to think about, but if she is ready to come home by a certain time, I am not going to argue that one bit. I am definitely not getting myself too excited just yet. I still want to make sure everything is perfect before we go, so it will be hard to convince me. The last thing I would want to happen is that we go home too soon and a few days later, she is back in the NICU for some odd reason. Please pray that this feeding issue is our last hurdle. We are so proud of our little girl and her accomplishments so far. I have never met a stronger person in my life and will always cherish everything we have been through. It has certainly made us better parents and better people. Thank you all for your support and if you haven't voted on the Parents.com site, please do (alot) as it is over tomorrow.
9/16/2008 8:27:00 PM
9/16/08 - New Idea!!! Okay, I know that boring days are good, so I am not going to complain. But, nothing is happening yet in the poop category either and I am getting a little worried. They are doing another x-ray in the morning to determine their next move. They talked about doing a test where they (ouch) stick an instrument up Kayleigh's butt and get a piece of her skin on the lining of her poop chute. I didn't catch what all it tests for because I was too busy cringing at the sound of the procedure. When we came in today, we heard again that Kayleigh was grumpy all morning, but when we held her and comforted her, she had a perma-grin on the whole time. She was swinging in her swing when we got there and I am so glad I got to see it. I know what you are thinking...YES I SHOULD HAVE TAKEN A PHOTO!!! We were running late and I decided to just leave my book bag and camera in the car. Aimee warned me with these exact words, "Watch, when we get up there she is going to be swinging in her chair and you are going to be mad that you decided not to bring the camera". Ooops!! She was right :( Kayleigh did gain some weight back. She is weighing in at 1261 grams which is (2 pounds - 12.4 ounces). She is on 2 liters of air flow still and taking in 28% oxygen. I am going to make sure I take the camera tomorrow and get some more photos for you all. I know everyone loves seeing the photos, so I will do my best to take some that don't all look alike. Can you imagine how many photos I am going to take when she comes home? I am going to have to buy a new computer just to have enough memory for all of her photos that I will take. It will be called Kayleigh's PC (Pictures Computer). I made up a "Poopy Song" since the "Poopy Dance" isn't working. Since Wade Joye is an amazing singer, maybe I will record him singing it and post it on my blog. (ha-ha JK Wade...maybe) The song goes a little something like this... You need to clamp down really hard, until your face turns bright red. Squeeze like never before, and make the nurses change your bed. We know it hurts your belly, so push as hard as you possibly can. You have got to get it out very soon, or "your lack of" will hit the fan. Kayleigh's got to poo poo, to get Mommy's moo moo! Yes she's got to poo poo, to get Mommy's moo moo! You can move on with your life,
Once you have gotten it all out. Your bloggies will be so proud, they will all certainly scream and shout. Kayleigh, You can do it!!! Mommy wants to feed you on her lap, So please do what you got to do, and take a big ole CRAP!!!! Kayleigh's got to poo poo, to get Mommy's moo moo! Yes I said, Kayleigh's got to poo poo, to get Mommy's moo moo! She's got to POOOEEEYY POOOO000000ooooooo.....YEAH!!!!
9/17/2008 6:38:00 PM
A Wild 24 Hours!!!
WOW, Where do we begin? The past 24 hours have been really crazy. I will first start off and give you an update on Kayleigh. As you all know, we have been having a wild back and forth journey with the feeding issues. We have now spent three months trying several different avenues and none of them worked. I know we were hoping to go straight back to breast milk, but the dye from the Upper GI test and her remaining stools haven't been able to pass through her system, even with the help of several suppositories (Glycerin shaves). The next step is not to wait any longer for her to poop, but to take a look inside and see what the problem is. Since the Doctor/Surgeon didn't find anything suspicious on the x-ray, he is hesitant to do the surgery. He is currently doing a lot of research on Kayleigh's file and x-rays to see if he can figure it out without cutting her open. If he can't figure it out, we are more than likely going to surgery this Friday. If they open her up and find a problem, they will fix it right then and there. What he is looking for is a narrowing in the intestines that is causing the backup. If there is, he will remove that section and attach the ends again. Let's pray this is a success because if he can't attach the ends properly, she may have to have colostomy bag for a while. I should know something by tomorrow whether or not the doctor has decided to go through with the procedure. Okay, the craziness is not nearly over. This is even more intense than the possible surgery. We got a call from our main OB-GYN doctor. (Angel Dr. is who we call her). She was the doctor who was on call the night Kayleigh was born, the one who kept Aimee in the hospital for further monitoring and the one who administered the Betamethazone (steroid) shots at the precise time to help Kayleigh's chances of survival. She said she spoke to the Maternal Fetal Medicine doctor who was actually the very first doctor we saw when Kayleigh was starting to grow behind at 18 weeks of the pregnancy. This doctor felt that Kayleigh was not going to make it to a viable state and pretty much told us we should not do anything different in our lives, as it was inevitable that she would not live. To this day, she still thought Kayleigh shouldn't have survived that pregnancy. Well, because of that, she decided to do some research
to figure out how it was possible with all the signs pointing in the wrong direction and to give us an answer to everyone's questioning. Before I get started, it amazes me to know how lucky we were and it quickly teaches me a lesson in judging people too quickly. Aimee and I decided to get a better answer from another MFM doctor because this doctor was quick to tell us Kayleigh would not make it. I will be honest and say that I judged this doctor in a way that I completely feel bad about now given the circumstances. Would you ever want someone telling you your child will die and you can't do anything about it? Probably not, but no one wants to just throw in the towel when someone tells you the odds are not in your favor. We just wanted hope, but now that Iwe see things from her perspective, we would have agreed with her thought process. I deeply apologize for judging as the Lord really frowns upon that and He actually taught me a lesson and showed me why. Now let me explain why I have a much greater respect for this doctor. While I expected this doctor to just throw her hands up and say this is unexplainable, she did an awesome job to help find the reasoning behind this unexplainable outcome. She just might have figured out the reasoning behind Kayleigh's growth restrictions, Kayleigh's unexplainable Pericardial Effusion, the AFP's false positive, Aimee's spotting, Aimee's major weight loss during pregnancy, Aimee's cysts all over her ovaries, the really thick placenta, Aimee's pre-eclampsia, and all the other unexplained reason's why Kayleigh survived. She came up with a possible solution which is called a Molar Pregnancy. The link will explain more in detail as I am no doctor, but also a disease linked to Molar Pregnancy is Gestational Trophoblastic Disease. Please read both before moving on as it will better explain the rest of this post. The scary and crazy thing about both are: 1) Out of all the cases of Molar Pregnancy, there have been two cases in the world where the baby was born. The rest died during the pregnancy and this is a common result of misscarriage. We could not find information about the other baby, but one of them passed after 67 days. Kayleigh would be the only case of survival if the results from the placenta prove true, but we also hope this doesn't cause any issues that would cause her to die. If you look at all the signs, you will notice that Aimee had every single matching symptom. It may also explain some of the issues Kayleigh is having with her digestive problem, since the Molar Pregnancy is based around the chromosomes, but doesn't show up as a chromosome abnormality. (Which the AFP, Amnio and recent Tests showed no abnormalities) 2) Aimee now needs to be watched very carefully for the Gestational Trophoblastic Disease (GTD). We did take a pregnancy test to show that her HCG levels are low because the test came back negative. The unexplained weight gain and the spotting she's been having are signs of GTD though. If her HCG levels are not high now, we need to make sure they don't get high over the next year or so if we decide to have another child. If Aimee happens to get pregnant, the trigger of her HCG levels will cause the aggressive, possibly malignant cancer tumors to spread rapidly. The cancer can be taken care of, but we would need to catch it quickly. The even scarier part is that Kayleigh was born three months ago and we haven't had any follow up to make sure their are no cancerous cells spreading. I read a story of a young girl who died from it because it spread too much before she found out any problems. So let's hope our home test was accurate enough and we don't have to worry about it. We are going to get a test from the OB-GYN to double check and make sure the HCG levels are not high. If they are, then Aimee will need to go through some type of chemotherapy depending on the severity of the cancer cells. Now this is not a definite diagnosis, but after doing my own research, it is scary to say that everything related to it is matching up to be this exact thing. Again, the good news is our home pregnancy test showed negative, so that makes me feel better. But I won't relax until we know for sure from further
tests. Please pray for my girls. We had a major freak out last night while doing all our research and we will continue to freak out until we get some results. You can go on to google and look up both diagnosis to learn more about it. I picked one of each that explains it well, but a lot of other links tell more about it. The doctor said it could take a few weeks for the placenta results to come back telling us whether or not Kayleigh has overcome the impossible. Your support and prayers are needed more than ever before.
9/18/2008 9:46:00 PM
9/18/08 - Surgery Scheduled
Tomorrow morning (Friday) at 10:30AM, Kayleigh is scheduled for surgery. The doctors want to open Kayleigh up to see what the underlying factors that are causing her to feeds to back up. The last GI test did not determine if there was a narrowing in her intestines, but the contrast has not exited her body like it should have, so that is throwing up a big red flag. If the doctor finds something, they will fix the problem right then and there. If they don't find anything, I am afraid at what may be causing this and what would happen from here on out. The incision will be across the stomach and above her belly button, so she will have a scar. I told Aimee not to worry because she will not be taking her shirt off until she is married anyways (ha-ha). I feel that the scar will be very small by the time she grows up. I will call it her battle wound.
In the long run, no one wants their child to go through surgery, but we feel it is the best option for her to get over this feeding issue. We need her to grow and grow faster! If she continues to stay on the TPN (Triple Mix Nutrients), it can cause more damage to her system than we need. So please pray for our little one as the surgery isn't suppose to last but for around an hour or so. We will certainly be on pins and needles until we get some news. I am sure you all will be too, so I will try to get back and post before too late. This journey has been a trying time for our family and as I try to make jokes and give you guys a laugh, I am really freaking out inside. I guess it is my way to cope with all the stress. Some call us strong, but the strong one is not me. Aimee is my true strength and she is the reason I have not gone off the deep end yet. Some might call me crazy because of my poopy song and dance, but you know what? Your right! This is a wild and crazy situation, but without Aimee there to love me, strengthen me and help keep my eyes on the right path, I would have done a lot more crazy things than that. She is a Godsend and I am so blessed to have such a wonderful woman in my life. With God joining us together, she is the reason I have eternal life because without her, I would have been preparing for eternity in hell. She keeps me closer to perfect than anyone ever will. I am truly in awe of how someone would ever hook me up with the most amazing person in the world. I love you sweetheart and thank you for loving me! Thank you everyone for all your thoughts and prayers as we go through a tough day tomorrow. God Bless,
9/19/2008 6:48:00 PM
9/19/08 - Post Surgery Update PRE-SURGERY
POST SURGERY
Sorry to keep you all in suspense all day long. The surgery went smooth, but the doctors didn't find any narrowing or blockage in her digestive tract that could be causing her motility problems. It wasn't the outcome I was hoping, but it certainly rules out several other possible problems. I was actually hoping for something to be wrong so they can fix it right then and there. I hate that she has a scar now, but she is one step closer to figuring out what the problem is. The orders are to start her feeds when she has recovered and when her stomach starts to get big, we are going to feed right through it. That means we will really have to sing the poopy song and do the dance at the same time. The doctor said from what the intestines look like, if she isn't throwing up then there is no reason to stop her feeds. We will be using breast milk this time around and we will keep an eye on her blood sugar levels. I am feeling a little guilty that we didn't try the breast milk before we did the surgery, but the surgery was a success overall. It shows that the problem more than likely is within the nervous system, which isn't pushing the stool along the digestive tract like it should. Even though Kayleigh is a term baby now, they are chalking it up to her being so small. So after a very stressful day, Aimee and I treated ourselves to Babies R US!!!! Woo Hoo. We bought several things for Kayleigh's room and then decided to register for a future baby/homecoming shower that Aimee's sister, friend and my Mom are planning. Most guys would say that the best part is getting to hold the scanner gun, but I let Aimee do it and we perked up quickly with excitement. We feel like Kayleigh is another step closer to coming home and if we aren't careful, she will be home before we know it and her room won't be finished. I am a champ with the camera, but I won't take photos of the room until we are finished. :( sorry! So overall, today was a success because Kayleigh is now recovering well and has gotten her sats up back to normal. She was struggling a little when she got back to her room, but after a few hours she calmed down and started to relax. I thought she was supposed to be knocked out sleeping for the rest of the day, but that sure wasn't the case. She had her eyes open at one point and she was sucking on her ventilator tube. I wonder if she is hungry (Ha!). Kayleigh likes to do things her way, and that way isn't always the easiest route as we all know. I am just so glad she handled the surgery well and can soon focus on eating and growing . The eye surgery and this GI surgery is just getting her experienced for her final surgery on her heart, which is the big one. Thank you all for your thoughts and prayers today. Even though nothing was found, God had his reasons for this surgery and I am putting all my trust in Him. Soon, Kayleigh will be home and we can all rejoice in God's amazing work. I am currently writing a book about our experience so I can reach out to others and give them the hope that you all gave me. I keep telling myself through all these ups and downs, that Kayleigh is the true author and she is just trying to make it exciting for everyone. God Bless,
9/20/2008 11:16:00 PM
9/20/08 - Slowly Recovering
Today was a good, but long day for Kayleigh. She is still on the vent and has been slowly coming down on her oxygen. This morning, she was having a hard time keeping her sats up and they had her on 74% oxygen. It has been slowly dropping all day and she is currently at 45%. At one point, she was breathing room air, but started having some desats and they had to increase her back up. They decided to give her some lasix since her urine output was low and she was wheezing some. The lasix is a diuretic that will help remove water off the lungs and help Kayleigh pee. Besides the fentanyl drip, she only got a little bit of pain medicine (morphine) today. Since late this afternoon, she has not had any desats and her pressure control on the vent is at zero. That means the vent is not helping her breath at all. So all in all, she is starting to get back to normal. I am ready for her to get off the vent and back on the cannula so we can start feeding soon. Her weight is around 2 pounds - 13 ounces now. It dropped a little, but that is expected. I was able to take a photo of her new toy today. I have been forgetting to take a pic of it. Kayleigh was having a rough morning with her desats and her oxygen way high and we noticed she was not listening to her lullabies. So we pulled the toy out of her drawer and put it in her isolette. We noticed a quick turn around in her sats. She started breathing better and her hands weren't so tightly gripped. It was almost instant relaxation for her. That made us feel so awesome to see that this toy was a great investment. I highly recommend it to anyone who has a child in the NICU. There was a study that said babies who listen to music do much better in the NICU. After reading that, we couldn't resist and made sure she had one the next day. Thank you all so much for your prayers through this surgery and please pray that she will recover quickly so we can start feeding soon. God Bless, The Freemans :)
9/21/2008 9:53:00 PM
9/21/08 - Today....
Kayleigh slept. The End! Ha! Ha!, Actually that is about all that happened today. Besides sleeping, she came down on her oxygen a little more and they are thinking about extubating her tomorrow, maybe. It all depends on how she continues to recover from the surgery. Allyson and Brandon came in with us today to spend some time with her, so they were happy. After talking with our nurses, Kayleigh has been quiet and sleeping all day long. The day ended so perfectly when I glanced in to say goodbye to her and she peaked her eyes open at me and gave me a smile. I was able to grab the camera in case she did it again, and she did. After all the curiosity of her being in pain from the surgery, that goes to show she is happy. ***If ANYONE has a blog or website that they have created for their preemie(s), I want to add it to our site to share your stories. Please email your child's name and website at Adam@TeamFreemanProperties.com. THANK YOU!!!! I am hoping to have a lot to write about tomorrow. Let's pray that she gets her tube out and we can plan on starting her feeds soon.
9/22/2008 8:21:00 PM
9/22/08 - You Like My New Mittens???
Isn't that just so adorable??? We walked in today and saw her with her mittens on and about lost it. I guess she has been pulling at all her tubes, so the answer to their problem was to make her look so darn cute. The mittens are so huge that they look like sleeves for her whole arm. Kayleigh is doing just great today. She is still on the vent, but they did extubate her this morning. I guess it was too early because she struggled a little too much. They said they would let her rest another day and try again maybe tomorrow or the next day. I don't know if it will be tomorrow though. While we hung out with Kayleigh today, her oxygen was on 31% and when she was satting great, Marsha (Our other great Primary Nurse) would lower her oxygen to 29%, but then Kayleigh's sats would drop to the 70's and Marsha would have to increase it back up again. She did that this afternoon and was still doing that this evening when I called up there. Maybe she will turn things around and get off that vent sooner than later so we can start her feeds back. She did gain some weight over the past day, which could be due to increased fluid from the surgery, but she weighed in at 1320 grams (2 lbs - 14.5 ounces). Everyone check out the Joye Family (Our NICU friends) as one of their little twin girls (Adleigh) is going home tomorrow. WOO HOO! Aimee and I are going to send them a text messages at 4 in the morning that says: (WAAAAAAAAAAAAHHHHHH!!!!!) JK GUYS! I better get all the jokes out now because our day is coming soon :) Love you guys - Praise God!
Off the record, Aimee and I are highly looking forward to our date this Saturday. After our dinner, we are going to see "Nights in Rodanthe." Aimee and I read the book when we first started dating as it was a romantic love story. Yes guys, I love a good romantic story! Anyways, if you haven't read the book, read it! I am really anxious to see how the movie compares. The cast couldn't have been better for this movie. We love "The Notebook", so I am sure it will come close to being just as good, I hope :)
9/23/2008 9:00:00 PM
9/23/08 - The Wrong Direction Things are moving in the wrong direction today. Early this afternoon, Kayleigh started acting up and showing more signs of irritability than normal. Since being put back on the vent, her oxygen has been set around 40% and it hasn't gotten any better. When we came in late this afternoon, things got worse and she was placed on 100% oxygen. Her sats were hanging in the low 80's for a short time and quickly started dropping. I have never seen her not do well on the vent, so when you see her sats dropping in to the 60's on 100% oxygen for 30-45 minutes straight, you think there is no place else to go and things are going to get ugly before you know it. They performed a CBC (Complete Blood Count) and found out that Kayleigh has more than normal immature white blood cells, which shows signs of an infection. So now Aimee and I are freaking out. We had a surgery that we could have done without and she might be getting an infection from it. They started antibiotics and are also going to give her another blood transfusion as her hemoglobin was less than normal. Since the vent was at its highest settings and she was not oxygenating her blood well enough, they brought in a machine that hooks up to the vent that delivers nitric oxide through her system. The endothelium (inner lining) of blood vessels use nitric oxide to signal the surrounding smooth muscle to relax, thus resulting in vasodilation and increasing blood flow. (I stole that from Wikipedia) Wikipedia said it exactly right. It started to work because her sats (which were constant at 60%) started to rise and level out around 92%. That makes us feel much better, but we are still not out of the woods. They have been administering the lasiks (diuretic) to help remove the water off her lungs. She also lost 100 grams since last night which is not normal at all. Being that she had a lot of blood drawn and the lasiks made her pee a lot, they are contributing those factors to the weight loss. Our biggest concern may be that her VSD (hole in the heart's lower chambers) is the problem, possibly causing her heart to overwork/go in to failure and she is not big enough to do the surgery to close it. If the blood transfusion, nitric oxide, antibiotics don't do the trick, they will be ordering an echocardiogram to look at her heart tomorrow. Please keep Kayleigh in your prayers and hope that she can pull through this like she has with every battle before.
9/24/2008 10:30:00 PM
9/24/08 - The Doctor's thoughts Kayleigh is hanging in there today. Her vent settings are lower than last night and she is still on the nitric oxide. Her oxygen was set around 35% and the nitric oxide is at 10. They are going to try to wean her off of both if things are looking up. She did gain some weight back (50 grams)and is now 1270 grams. The blood transfusion went really well and they have given her a couple different antibiotics to treat the possible infection. We spoke in great length with the doctor today at Kayleigh's bedside. We are so blessed to have such great doctors there who care and will spend the time needed to make sure we really understand things well. Our doctor is hoping and feels like the issue at hand is due to an infection. But on the other hand, Kayleigh's quick turnaround of events yesterday leads him to believe it may be more. They are going to keep a close eye on her situation to make sure it is not the latter of the two. The situation he spoke of is due to chronic lung disease/pulmonary hypertension. Now this is not the same pulmonary hypertension as adults have and we were told strictly not to do our own research as the hypertension in preemies is a much different story. I will try to explain this as best as I can. There is built up pressure in the heart and in the lungs to push blood along it's directed path. Since Kayleigh has a hole in her heart(VSD), the oxygenated and non-oxygenated blood will follow the path of least resistance through the holes in the ventricles. So if her lungs have more pressure because of the hypertension, the oxygenated blood on one side of the ventricle will pull non-oxygenated blood to its side (path of least resistance). So, If the non oxygenated blood is pulled to the other side of the heart and mixes with the oygenated blood and then sent out to the body, it causes Kayleigh's organs to get very little oxygen. The nitric oxide, relieves some of that pressure by relaxing the blood vessels in the lungs and helps deliver more oxygenated blood back to the heart and out to the body. That is why when they put her on the nitric oxide, she responded well to it very well and her oxygen saturation went from 60% - 90% yesterday. Things that can cause this to happen could very well be (AND HOPEFULLY) an infection which can be treated and forgotten quickly or some kind of reaction to the anesthesia or pain/pain medication. If the hypertension/chronic lung disease gets worse, the doctor said we will tackle that issue when it happens. I am and most of you can take that for what it is worth, but the doctor was honest with us and said that if there were ever a situation that is irreversible, he will be upfront and honest about it. (Although it scares me that he would even bring that statement up as it could either mean he is preparing us for what's to come or that we shouldn't freak ourselves out because they don't have any answers yet.) He said there are other things that may be done, but we don't know what those are yet until we find out whether or not this is even an issue and how severe it is. We were told to hang tight and let's just get through this process of weaning her off the vent/nitric oxide and then we'll know what route we are going. Basically, I am "guessing" and being "hypothetical" here so don't judge my words, but if this is more than the cause of an infection, things are not looking good. I say that because, besides nitric oxide or Viagra (also used for relaxing the blood vessels in the lungs)there is nothing that can help the situation and the outcome will be negative. We can not keep her on the nitric or Viagra for ever as they will do more damage than help, and the reason we are not to do any research is because there isn't many studies done for preemies with this issue as it proves fatal for most cases. If everything on the internet is for adult pulmonary hypertension, it is because there is no good news for preemies. I guess blood vessels in the lungs are similar to how they act with ROP. They run in to trouble with growth because something grows wrong when a baby is born premature. Just my guess.
Anyways, correct me if I am wrong with my guessing in the past paragraph if you know any further details about this issue or have stories of other preemies. It should give me ideas on some important questions that I can ask the doctors tomorrow. It is now a sit and wait game again and just pray and hope for the best. I know God has His reasons for everything and we are going to trust in Him through every situation. Please continue to pray for Kayleigh and hope that this is not an irreversible situation. God Bless, The Freemans :)
9/25/2008 7:40:00 PM
9/25/08 - Making Progress
Today, Kayleigh has been moving in the right direction, but we won't know fully if the pulmonary hypertension is going to be an on going issue until we are able to completely wean her off the nitric oxide. When they first started her on the nitric, her settings were at 20 and they dropped her to 10 and then to 5
this morning. Right now she is at 2 and they are going to continue to wean her every 3 hours. The good thing is, she has the Viagra to help as a back up. So, we are making progress and we pray that she continues to do well. This afternoon, she was resting well and satting high. Even though she is not completely perfect right now, it is such a relief to see her satting good and sleeping. My heart just breaks when she is irritated and she is struggling to bring her sats up. We are trying to stay strong through all of this, but it is by far the hardest thing we have ever been through in our lives. I am just so blessed to have Aimee to lean on when I am having a tough time and vice versa. I just got off the phone with the nurse and in ten minutes, they are going to wean her down to just 1 on the nitric oxide. So far so good. Let's just hope she keeps it up. Sorry as there was not much update, but not much news is very good sometimes. Thank you all so much for your prayers. We can't begin to describe how awesome the feeling is to have all of you behind us. The comments are so encouraging to us and they keep us positive through this trying time. THANK YOU!! THANK YOU!! THANK YOU!!
9/26/2008 4:04:00 PM
WHAT A DAY!!!!!!!!!!!!!
We are on cloud nine right now! Aimee and I both are in just disbelief and just plain going crazy with excitement because of how our day went today. Hold on tight because what you are about to hear is going to blow your socks off! When the day started (Early AM), Kayleigh was removed from her Nitric Oxide because they finally weaned her down over night. Over the next couple hours, she continued to do really well and the doctors decided to take her off the vent. Woo hoo! We were so happy to call up there to find out she was doing so well. We couldn't wait to get up there and hold her and spend some time with her. We just knew that things were starting to look up and we were right. When we got up there, they had already dropped her flow from 6 liters, to 5, to 4, and then to 3 so they could give her a bottle!!! YES A BOTTLE!!!! We got there at the right time because we were able to feed her 6mls of BREAST MILK ONLY!!!!!!!! Just like we have wanted to do for a while now. Kayleigh did an awesome job feeding and took the whole amount with no desats, bradys or aspirates. But wait...There is even more!!!! Kayleigh POOPED!!!! She had the biggest poop while feeding that I have ever thought possible. WOOOO HOOOOOO!!!!! She had tons of thick (very thick) solid poop and even the contrast from the Upper GI test was visible. Before we started her feedings, she was irritated by the slightest touch, but after her explosion, she was so calm and relaxed like everything was back to normal. All this stress and the girl just needed to poop. I mean, I don't want to be too descriptive, but I would have had a heart attack if I tried crapping out something that big with just a teeny little butthole like hers. We just called up there to find out she has tolerated two more feedings from the bottle. The feeding right after ours, the nurse used a fast flow nipple on the bottle and it worked so much better than the slow flow we used. I guess the night nurse didn't know the fast flow worked better because she didn't take all of this the third time and had to finish giving it to her through her tube. We also got some other great news tonight. Kayleigh is 2 GRAMS SHY of the 3 pound mark. Can you believe it???? She has nearly tripled in size since she was born. She weighed in at 1359 grams (2 pounds 15.9 oz). And last but not least, through all the drama this week, I failed to mention that Kayleigh is 3
months old as of the 23rd. Oh what an unbelievable day it was. I am so amazed by the grace of God and I thank you all for your prayers. God was certainly listening and answered so many prayers because today was a turn of events in so many different areas. Please continue to pray that she will keep moving forward and that this possible pulmonary hypertension won't surface again. We are just blown away with excitement as today felt like one of the happiest days of our lives. Thank you everyone for your support. It truly is an amazing feeling to have people who care so much. We are so blessed. Off the topic, Aimee and I both have been dieting and doing really well. Aimee has lost almost 5 pounds and I have lost 7 pounds. Aimee has updated her blog, so click here to check it out. God Bless, The Freemans :)
9/28/2008 1:29:00 AM
9/27/08 - Back for More
Today was such another awesome day that we decided to go back up there late tonight and spend some more time with Kayleigh. She has been doing great with her bottles and they are going to start increasing her feeds one ml every 9 hours. So right now she is at 7 mls. She weighed in tonight at 1374 which over the 3 pound mark. Woo hoo!! She is still on 3 liters of flow and her oxygen is around 30%. There were no major desats that were recorded and she was just as happy as can be today. We fed her a bottle this afternoon and she did great. She finished it much quicker than the first time we did it. She is getting a bottle every 3 hours right now. One nurse said she finished it in less than a minute for her. That is awesome! I realized today that I have to leave the nipple of the bottle in longer so it forces her to swallow when she squirms after getting some of the milk out. It took her around 10 minutes to get 3 mls out, but when I tried leaving it in there, she finished the rest really quick. Aimee and I went up there around 4:30 this afternoon for a couple hours and at 11:45 tonight after our date night (which was awesome!!!). We missed her so much and we wanted to help feed her again. It was the end to a perfect night! God Bless, The Freemans :)
9/28/2008 9:09:00 PM
9/28/08 - Keep The Good Days Coming :)
I am going to give you a quick update as today was another great day. Kayleigh has gone up on her feeds and she is currently at 10mls every three hours. This is the most she has had in such a short period of time. Before, she would be getting this much over an hour or three hours on continuous feeds. She is tolerating it very well and actually had a small poop this afternoon.
Things are going really well. The only tough part is Kayleigh's throat is raw as can be. Having that tube from the vent in for so long has made her lose any kind of sound in her voice. So now she turns beat red and the mouth comes wide open, but no sound comes out. Not that I would rather hear her cry like crazy, but it sad to see that it is bothering her. She will be back and loud in no time. ha-ha! I took some video to share with everyone. It has been a while since I have added one to the blog, so I felt the need to do it while Aimee was feeding and burping her. Kayleigh was so cute because she was so wide eyed and active. We were able to catch her in some precious moments.
9/30/2008 12:37:00 AM
9/29/08 - Work in Progress...
Sorry for the late post, but Aimee and I were busy painting :) I know, I lied. I said I wasn't going to show photos of her room until it was done, but I was so excited about the progress we made tonight. We still have some chair rail to put up and paint white where the pink and brown colors meet. Last week, I put together the crib and Aimee decorated it beautifully. She has such good taste. She picked out all the colors and has turned this room in to something beautiful. I maybe helped a little with the shade of the colors, but I give all the credit to her. We are so ready for it to be done and for Kayleigh to come home and be in it. Speaking of Kayleigh, she is doing great. She has gone up on her feeds to 13 mls (our goal is 26mls), but she was getting worn out with every other bottle. The doctors decided that on those feeds, they will give her a break and tube feed her instead. That way she can still get a bottle every six hours, and not burn so many calories. We are growing though!!! She weighed 1412 grams tonight, which is (3 pounds - 1.8 ounces). She was a little irritated when we were up there today, but she must have been cooking up a good poop because shortly after we left, the nurse said she had a very large and stinky one. At every diaper change today but one, she has pooped. Can you believe it though, all the things they tried to feed her and she wouldn't poop. Plain breast milk by bottle is certainly doing the trick. I am glad that the cure to what has been causing Kayleigh so much trouble over the past couple months is what God had intended for Kayleigh to have in the first place. Please keep praying for Kayleigh and that she will continue to do great so we can get her home. This has been an amazing journey and I am so blessed to have you all praying for us. The second shipment of bracelets came in today, so I will be getting them out ASAP. Sorry it took so long. If you have your bracelet already, please take a family photo with it on and write a letter to Kayleigh so Aimee can put it in the scrap book she is making. You can email me the letter with an attached photo to: Adam@TeamFreemanProperties.com
9/30/2008 10:30:00 PM
9/30/08 - Another Great Day!!!
Today was another great day. Kayleigh was dropped from 3 liters of air flow to 2 liters of flow and when we called up tonight, she was satting around 92 on 23% oxygen. They also stopped her antibiotics and she had 4 good poops today. She has increased to 15 mls every three hours, so we should start to see some good weight gain. She weighed in tonight at 1446 grams (3 lbs - 3 oz.) Kayleigh is just moving along nicely. The doctors said that since Kayleigh is not showing any major issues with her VSD (Hole in her heart), they "might" not have to do surgery when she hits the 2000 grams mark (4 lbs). They said they will hold the surgery off to a later time since doing it at 2000 grams is just the minimum weight she has to be at to have the surgery. So let's pray that we can hold off as long as possible on such a major surgery. Congratulations to Bobby and Lisa, who are two really good friends of ours. They had their baby girl last night at 11:54. Her name is Isabella Grace, which is such a beautiful name. I am just so happy because Kayleigh will now have two other girls to grow up and cause trouble with that are the same age. The other cutie patootie is Sloan Piper, my fighting/training partner's daughter who was born last month. One of the Moms that follow Kayleigh's story is asking for everyone to say a pray for her little one, Taylor. Taylor is supposed to be born in a few weeks, but her Mommy's water broke early and they are hoping to prolong the birth as much as possible without any complications. God Bless, The Freemans :)
10/1/2008 9:39:00 PM
10/1/08 - HAPPY 100TH DAY!!!!
Today marks the 100th day Kayleigh has been in the NICU. Time sure flies by when your having fun. (well....not so much!) I am just ready for that day we can walk out of the hospital for good. We were talking today that we are not going to know what to do with all the free time when we are home for good. We have gotten so used to planning each day to drive 30 minutes to the hospital and back, while spending several hours there. When we are not at the hospital, we are at work appointments or taking care of Allyson and Brandon. I am ready to have a little more time on my hands because there is never enough of it. Kayleigh is progressing well. So well, there have been hints of the possibility of moving to progressive care. She still has to tolerate her feeds and get off the TPN (IV Nutrients) before she can go. Right now she is at 19 mls and doing good. Lately, she has been going to the bathroom when feeding, which is great but it is cutting in to the time she needs to focus on eating. All that baring down and straining is keeping her from finishing the whole bottle. Well, that is what the nurses at night say, but today she did awesome for me when I fed her. She took the bottle and finished it within 15 minutes, while blowing out her diaper. Yeah, it wasn't a pretty sight. Hey, I am just glad she is pooping, so I am not going to complain one bit. ha-ha! Other than that, we had a great visit with her today. We didn't want to leave and lately, it has been getting harder and harder to leave. She has been so active and acting like a normal baby does, it just makes us feel so awesome and excited. One of our primary nurses had her this afternoon and it has been a week since she has taken care of her. It was right when they had put her on the nitric oxide, so she was amazed to see how well she has been doing lately. I could read her actions and it makes us feel so awesome to know how much these nurses care. You worry sometimes because some people call it a job and are just there for a paycheck, while others (Our Primary Nurses) are there for all the right reasons and we have certainly picked the right ones.
They are amazing!!!
10/2/2008 8:42:00 PM
10/2/08 - 1st Attempt It was another good day for Kayleigh. Today was the first attempt for Aimee to try and breast feed. It turned out to be more of a bonding session than anything else as Kayleigh didn't latch on. We will keep trying and sooner or later, she will get it. She has been doing a decent job with her feedings though. They are still feeding her a bottle every other feed, and sometimes she is not finshing the whole bottle for the other nurses. When we feed her she does great, so we are curious if Kayleigh just wants us to feed her instead. That is possible! She took 13 out of 20 mls tonight before she fell asleep from all the hard work. So they put the rest through her tube. She is still pooping on a regular basis and the blood test showed that her blood sugar levels are normal. Woo hoo! She is still on 2 liters of flow and her oxygen is at 30%. They will try to wean her off of the oxygen slowly, but she was constantly at 25-30% all day today. Her weight has gone back up to what it was the other day. (1444 grams = 3lbs - 3oz) Other than that, it was a smooth day today which is so amazing. It is so true about the NICU being 2 steps forward and 1 step back until you are out the door. We just hope there are no more steps back. We have taken enough steps forward and backwards that I will be starting a new profession in teaching shag classes this winter. ha-ha! Okay, that was bad! Anywho, Thank you all so much for everything! Good days are so wonderful and let's pray that they continue. God Bless, The Freemans :)
10/3/2008 7:19:00 PM
10/3/08 - Very Peaceful!!!!
Today was a wonderful and very peaceful day. We spent several hours with Kayleigh today and she was a pure joy. She was awake for most of the time and she fed perfect. I fed her 22 mls today within 25 minutes and she didn't have a problem at all. I don't know what it is about the NICU, whether it is the oxygen flowing through the room, but I get so darn tired. I usually can never fall asleep sitting up in a chair, but I was out cold today while Aimee spent some great quality time with Kayleigh. I don't know why, but I only get that way when I am in that NICU room. Other than feeding well and having great bonding time, she had another wonderful day. Sorry for the short post tonight, but I finished touching up Kayleigh's room and I painted the letters that will go up on the wall. So now Aimee and I are going to go hang the letters on the wall. Brandon, my Dad, and I are going to cut, hang up and paint the chair rail to finish the project tomorrow. Aimee, my Mom and Allyson are going to the fabric store to pick out some curtains for all the kid's rooms. We have to finish the letters and get a good night's sleep tonight as Aimee, my parents and I are going to walk the Susan G. Komen Breast Cancer Walk tomorrow morning. We have done it almost every year and it has been such an inspiring and emotional event. God Bless Everyone! The Freemans :)
10/4/2008 10:26:00 PM
10/4/08 - Thank God for Good Days :) Aimee and I can't begin to describe how awesome it feels to have good days when this is actually supposed to be the normal parenting experience. Not having anything to worry about relieves so much stress from Aimee and I that we can focus on our other things that have lacked attention, such as work and other family. We walked the Susan G Komen Breast Cancer walk this morning and put together Kayleigh's room. We had about 4-5 hours of quality time with Brandon and Allyson. Since the children are no longer able to go to the NICU due to the fear of RSV, we played video games and watched some of their favorite tv shows. It was good to just act like a kid with no worries in sight. Kayleigh is doing great today and not having any issues at all. She hasn't changed much since yesterday except that she is on full feeds right now, which is 26 mls. She was resting all day today, so we are hoping for some great growth from her. She weighed in last night at 1522 which is 3 lbs - 5.6 ounces. That was a huge jump from the night before so we are moving in the right direction. We have not found out what her weight was tonight, but I am hoping for another big increase. Little Nicholas, thank you so much for praying with your Mommy. Kayleigh has been doing so good because of your prayers. We thank you so much! I wish you all a wonderful rest of the weekend and God Bless. The Freemans :)
10/5/2008 11:26:00 PM
10/5/08 - Grow Baby Grow!!! Yesterday and today were two really great days of growth for Kayleigh. I am just hoping this kind of growth continues. She is currently at 1587 grams which is 3 1/2 lbs. She grew over 80 grams yesterday and over 60 grams today. I am just so pumped up to see that kind of growth. Other than that, she came off her TPN (IV Nutrients), so she no longer has a PCVC (long term IV thread) in her foot. But....she had some puss come out of that IV location, so they put another IV in her other leg to administer antibiotics for safety. She is not showing any signs of infection, but they want to be cautious. She is satting good and feeding very well. If she doesn't finish her bottle, she is getting the rest through a tube and is not having any aspirates. She is breathing and swallowing much better now. Aimee has been trying to breast feed Kayleigh and has not been having a lot of luck, but today it seems
Kayleigh took to her a little better than the past couple days. So, it looks like she will get better in time. We just need to keep practicing. Aimee and I went to a community garage sale yesterday and we got a bassinet and a swing for dirt cheap. They are so cute and barely used. I thought that we would want to spoil Kayleigh with all new things, but we couldn't pass up on these two items. Together we paid $45 when we would have paid $200 more if we got them new. Not to mention, they are in really good condition and were barely used. We couldn't have been at a better place and time. I also got a new office chair for $15, which I am so comfy in right now! I must say that I thought yard sales are where you just buy other people's junk, but we made out big time and I am hooked! I can't wait to go again. ha! I hope everyone has a wonderful start to a new week. I am sure Kayleigh's progress will put you in a good mood being that Monday mornings are never fun.
10/6/2008 10:23:00 PM
10/6/08 - Progressive Care in Sight, Maybe!!!
All the stars are aligning for Kayleigh to move to progressive. She is tolerating full feeds, breathing very well and holding her temperature. The only thing holding us back right now is the Cardiologist deciding whether to put a cardiac cath, which will be to monitor the pulmonary pressures. Since she is not
showing signs of distress with either pulmonary hypertension or congestive heart failure, this cath will be there to monitor every second for them to fix the issue in case something were to start moving in the wrong direction. Please pray that we continue to move in the right direction and whatever is needed to be done, will not cause any setbacks. Kayleigh was awesome today. She latched on to Aimee for at least 5-10 minutes when breast feeding. It was so awesome and the more we try, the better she is getting. If you haven't noticed yet, Aimee and I will never give up trying!!! I think that Kayleigh gets more sucking from the bottle, so when a minimal amount comes out of Aimee, Kayleigh gets frustrated. Kayleigh took 25 mls out of 30 tonight, so that is the best she has done so far with the most amount of feeds. She has grown over 200 grams this week, so she is starting to sprout!!! I hope she keeps it up and takes off. I am not sure what she weighed in tonight yet, but I will find out in the morning. Someone posted a comment tonight on why we haven't tried taking Kayleigh's story to TLC or some other company just as large. I might be looking at it wrong, but if I personally went to TLC with our story, they would probably think I was just some proud parent trying to get 15 minutes of fame and we would be perceived in the wrong way. I want nothing more than to touch as many lives as possible, so I would need to the help of others to do so. If someone out there who is following the story has or knows someone with great ideas on how we can reach as many people as possible, I would love to hear your ideas. This opportunity can help so many families and if we could save one life, it was worth all the while. We are stronger in numbers. Please help and let's work together. God Bless, The Freemans :)
10/7/2008 7:47:00 PM
10/7/08 - Happy Anniversary!!!
Today is our second year anniversary. Woo Hoo! We decided to treat ourselves to one of our favorite restaurants, Nakatos. It is a Japanese Steak House where the chefs cook right at table side, flipping their knives with flames shooting up everywhere. It is a lot of fun and we enjoy the food so much that we hurt so bad afterwards. I think Aimee has been to the restroom four times and we have only been home for about 45 minutes. haha :) Kayleigh is doing awesome! When I told you that progressive care was in sight, I didn't think it was so close that tomorrow might be the day. YES!!! Tomorrow! We spoke with our doctor and he wants to keep Kayleigh in the NICU because just last week she was having so many issues and even though she is doing so well now, he wants to keep a close eye on her. We took a tour of the progressive unit and on our way back through the NICU, we saw the doctor and told him how awesome it is over there, and he said that maybe tomorrow we will send you over. How awesome is that!!!!! Just to give you an idea, the progressive unit is just down the hall, but it is a completely different world. I don't know if I described to you what the NICU looks like, but I will do my best. When you walk through the hard, worn out, stained carpet floors, you will make your way down a long narrow pale grey hallway to Kayleigh's nursery. The automatic doors open up with a loud rustic sound as if a garbage truck was packing it's trash to make room for more. When you enter in to the south nursery, you are surrounded by beeping and dinging from eight other preemies within visable site from each other. Making your way through the crowded 16x20 room packed with at least three nurses and four other children, Kayleigh is situated in her little corner where you can luckily fit two chairs side by side to spend some quality time with her. There is one little window that faces a cobble stone roof loaded with air conditioners that seem to never catch any sunlight no matter what time of day. With not much sunlight and enough oxygen flowing at once, you are bound to get the best sleep of your life. It is hard to stay awake and spend the time you want with your precious child.
Now, when you walk in to progressive, two silent automatic doors flow open to shiny, waxed hardwood floors with windows in every direction you turn. You are thrown instantly in to another level of luxury that you can't help but drop your jaw to the floor. We made our way in to where Kayleigh will be residing and there were comfortable leather chairs and curtains to close yourself off for privacy. It was as if Kayleigh will have her own penthouse suite compared to the dorm room she is in now. Each room has their own large window that looks out to nothing but green trees and passing traffic, which is more than enough to look at while she is passed out sleeping on my chest. When you look around, there are other rooms equipped with silent monitors, lacking the chimes because most of the babies are one step from heading out the door to their homes. The space was amazing as if our whole section was a completely separate wing in the hospital. It spoke class in there and even though Kayleigh might need monitoring, we would much rather her get better rest in a quiet and peaceful location away from all the noise in the NICU. Please pray that Kayleigh will go to progressive and she will stay there until it is time to come home. She certainly passes the requirements to be there now, so let's just keep it that way. She does have to get the cath, but the cardiologist feels that we can wait 2-3 weeks before they put it in since she is doing so well right now. They want her to grow more and be able to handle the procedure very well, so we don't run in to the risk of what happened last week. Last but certainly not least, I received an email from several people today about a petition that is going around for The March of Dimes. The petition is for prematurity awareness so the government can give more attention to research, health coverage, professional guidelines and to support maternal/infant health. I am never a demanding person, but I demand you to sign the petition. Click here to sign the petition: Petition for Preemies Thank you all so very much and God Bless, The Freemans :)
10/9/2008 12:19:00 AM
10/8/08 - NEW HOME!!! NICU HOME
NPCN HOME
At 12:30 in the afternoon, Kayleigh was transferred from the NICU (Neonatal Intensive Care Unit) to the NPCN (Neonatal Progressive Care Unit). We are just so stoked to have moved her to a newer and more private, upscale location. The photos above and my last night's post does all the talking about the difference in rooms, but it just means we are one step closer to going home. Kayleigh has been so wonderful lately and she is continuing to show signs of progression. There has not been a longer time over the past 3 months where she has been doing so well consecutively. It seems that we are moving in the right direction and I am glad that we will not be doing the pulmonary cath for 2-3 more weeks. That way Kayleigh can continue to grow without any disruption. I didn't post the weight last night, because I they didn't weigh her until the early morning. she weighed in at 1563 which is a little less than normal. Tonight's weight came in at 1475, but they blamed that drop on the different scales in NPCN. I don't know what it the true weight, so we will just see what tomorrow's weight is and go from there. I would hate to see that she is burning too many calories these past couple days. She did however grow 200 grams in the past week, which is unbelievable for Kayleigh's track record. Kayleigh is still working hard at latching on to Aimee's breast, but we are improving a little bit each time. We have a consult tomorrow with a lactation nurse. They were talking about having Aimee use the a guard to help Kayleigh latch on. Hopefully that is the answer. We are really wanting Kayleigh to get the hang of things for bonding purposes, even though I don't think there will be a bonding issue when she realizes how bad we spoil her. ha! Thank you all so much for your support as your prayers are certainly helping us make progress! God Bless, The Freemans :)
10/9/2008 8:02:00 PM
10/9/08 - The Shield Worked!!!!
Kayleigh is having yet another great day. She weighed in tonight at 1513 grams (3 pounds 5.6 ounces), so it is a little better than last night, but not back to where we were the other day. It is all a balancing act and we need to limit the amount of calories she is burning anyway possible. She is still on 2 liters of flow with her oxygen at 25%, and they may drop her to 1 liter soon to see how she handles that. We had a great visit today and she was not fussy at all, even when it was time to feed her. Lately, she has been fussy about 30 minutes prior to feeding and today she was sleeping when we got there and she was sleeping when we left. Okay, now for the awesome news!!! Kayleigh latched on to Aimee today while she used the nipple shield. It is unbelievable the things they have come up with to help our little girl along. I am just do blessed to be in our unbelievable hospital at this day and age. We had a lactation consultant come in today and give us some wonderful information. I am going to share some of this with you as many of your had questions, either about breastfeeding, pumping and dieting. First of all, let me tell you about this lactation consultant. She too was a preemie, but over 50 years ago. She was born weighing 1 pound - 7 ounces, and hold on to your britches when I tell you this! When she was born, they didn't know what to do, so they put her in a shoe box and in to the oven, not to turn it on, but to prevent her from catching a draft of cold air. They took her out every 3 hours and fed her. That is all they could do, or knew what to do. What do you think about that???? That is craaaaaaaaaazy! God Bless all the research and changes that have been made over the years. She told us that dieting does not effect milk production and as a lot of you were concerned with our dieting, she made some good points and brought some documentation to show us. We asked a bunch of questions just to make sure we weren't doing anything to hurt Kayleigh. The documentation states
that milk production would only be affected in a state of famine lasting several weeks. She made a good comparison when she talked about the mothers in Africa/Ethiopia who don't eat the high calorie/high fat/hormone injected food that we do in the U.S. Maybe Kayleigh won't be 6 feet tall and have large boobs at age 10 like most girls these days, but she will be healthy from the 80% natural foods that we do eat. If you haven't seen the nurtisystem diet food list, it is all very small portioned that must be accompanies by a lot of fruits and vegetables to make up our daily caloric intake. All in all, it states that this is the best time to exercise and diet as your body is constantly burning calories to produce milk, so it gives you that extra calorie burning boost. This is good news so we can all pass it along to others who are questioning it in their journey. Someone asked if Kayleigh would be moving to a bassinet and we asked the doctors today when this would happen. He told us that Kayleigh is already ready to move to a bassinet. The requirements are 1500 grams and she is over that mark. The only reason they are not moving her is because she will burn a lot of calories trying to hold her body temperature up and right now we need to focus on growing. She will have her time to graduate, but after hearing that, I am okay if she stays in that isolette until she is ready to come home because I want her to grow!!!! I have not received any photos or letters yet from anyone who purchased a bracelet. Kayleigh is going to be very sad when she sees an empty scrap book. Sorry, I had to give you a guilt trip. But, seriously! Send them in so we can put an awesome scrap book together. Someone asked me if we were ordering more and if I have to, I will. I do have a few left from last order. There were over 50 bracelets that have gone out, but no photos back yet. Please take a minute to do get that done for us. Thanks so much. Also!! Last but not least. With my journey to touch the world with our story and yours, I was thinking about ways we can reach many more people in need. Aimee and I have our own real estate website and one way to build up site popularity on google or yahoo is to link our website to others. A lot of us have Kayleigh's website linked already, so that is awesome. IF WE ARE NOT LINKED TOGETHER....please send me your website. I don't care of it is a preemie site, term baby site, work website, blog, myspace, or any other site that is out there, we need to link our sites together to create a big chain link fence that will get our stories across to those who need them the most. If you don't know what I am talking about, email me at Adam@TeamFreemanProperties.com and I will help. If you have any questions about anything, we are here to help. I have been getting a lot of great questions about different things, so don't be shy if you are dying to know something. Just email me. Thank you all for everything and God Bless Kayleigh's accomplishments. She is just doing amazing and we pray she continues to move in the right direction.
10/10/2008 6:28:00 PM
10/10/08 - It's About Time!!!!
Grandma Patti
Papa "G"
After a long and hard fought battle through the NICU, Kayleigh has gotten to a stable place in our eyes where we will allow Kayleigh's grandparents to hold her. You are probably wondering why it has taken this long and probably saying "It's about time." Well, for most of you who have not traveled the NICU journey before, the biggest fear when it comes to other people touching Kayleigh is that if she gets sick, you don't want anyone taking blame or pointing fingers. I would be devastated if someone in my family were to hold Kayleigh and something go wrong, and them blame themselves. Whether or not they had something to do with it, we didn't want to take that chance. It might sound cruel in a way, but until you are in this situation, you might not ever understand. Anyways, it is long overdue and they were so excited to finally get to hold her. Kayleigh is doing great today. She is up to 32 mls on her feeds and tolerating every last bit of it. Every time I have to smell one of her "beyond stanky" diapers, I am quickly reminded of the troubles she once had with her bowels, and I proudly change with a smile on my face. Aimee got Kayleigh to latch on again with the nipple guard and Kayleigh stayed on for at least 20 minutes while they tube fed her her normal feeds. That way she got the amount she needed while working on her feeding skills. It was cute when she wore herself out and fell asleep right there with Aimee. Normally, she would struggle to fall asleep because she always seems like she is going to miss out on something. She sleeps with one eye open and at any slight movement, she perks up and looks around. Today, she was smiling for everyone and just seemed to be in an very happy mood. We are at a crossroads though. Kayleigh is not growing as much as the doctors would like, even being on full feeds. We have alternated her bottle feeds with tube feeds so we can save the amount of calories burned from bottle feeding/breast feeding all the time. We are thinking of cutting back more, so we can save those calories to grow. The doctors are even thinking about fortifying the breast milk again, but I am so weary of going down that road again. Whether we cut back on her bottle/breast feeding or we keep things the way they are and she grows slower, we run in to a situation where it may take a lot longer to get her to come home. If we feed her fortifier and she blows up again, we run in to a bigger issue where she doesn't feed at all and we have to go back on TPN, which would be a big mess. It is a tough decision and a crazy balancing act, but hopefully we will pick the best road to travel. She only grew 7 grams from last night, which isn't too exciting. Some had asked about the Molar Pregnancy issue and we have not found out the results of that yet. They said it could take up to 6 weeks and it has only been 3 or 4. Hopefully we will find something out soon, so we can get some answers.
10/13/2008 12:14:00 AM
10/13/08 - Brown Eyed Girl!!!
Look at those big brown eyes :) Brown as they should be, but you never know because it looks like her hair is going to be blonde. She's our little brown eyed girl! I heard that if your pupils are dialated (without the help of medicine), it means that you are in love. It is good to see Kayleigh's pupils so large :) She is doing really well too! There was only one problem so far. She is not gaining the weight they hoped for when she hit full feeds. She weighed in at 1470 grams the night before last, which was down from the previous night. Last night she weighed in at 1505 (3.4lbs), but it is still not a significant amount. They started her this morning on fortifier and as we all know, this has not worked before. Today was a good day though as she pooped at all feedings, not like the previous weeks when dealing with fortifier. My guess is that she needs to continue breast feeding/bottle feeding to initiate/giving the gut a jump start with the mouth. I think it may be working because she is getting three times the amount of food as she was before when having bowel/gut issues. No problem so far, so maybe she has strengthen those bowel muscles up and is ready for anything to be thrown her way. I was really weary at first and a little upset, because the doctor that just decided to change her over to fortifier is not our normal doctor and has never seen Kayleigh before in his life. It was scary and a little frustrating, but so far so good (so I am going to keep my mouth shut) Other than that, Kayleigh is doing great. They moved us from our suite in the corner to a different room that is a little tighter. We were not too happy about that, but there weren't enough babies to be back in that corner for the amount of nurses they have to watch them. Oh well, I guess we will just have to suck it up. We were grumpy last night because we got moved, no weight gain and Kayleigh going back on fortifier. I am just glad tonight was a much better night. Kayleigh was ever so happy laying with us and we didn't want to go home tonight. The more days that go by, the more we notice she is
getting so attached to us. Poor little Kayleigh, she didn't have her OG tube down all the way. She must have pulled it up and taped it back down before anyone noticed. When she was getting her feeds tonight, she seemed to be having trouble breathing and then I noticed milk coming out of her nose a little. All of a sudden, she just up chucked/threw up milk all over the place. Thank goodness Aimee figured it out and the nurse quickly fixed the problem. Kayleigh then was satting 100 the rest of the time. I am sure that was a little stressful, but it was good to know that we caught the problem fairly quickly. That had to be so uncomfortable. Poor little girl! Well, this is the end to an awesome weekend, but I wish you all a wonderful week at work. Let's pray that Kayleigh keeps doing good with her feeds and grows quickly!!!! I am so ready for her to get the last of her procedures done, so we can get her home.
10/13/2008 8:36:00 PM
10/13/08 - What a Special Day!!! Today marks one of the most special days that we've had since Kayleigh has been born. Aimee and I were able to do something very special and it turned out to be one of the most amazing things. I am sitting here, hours later, still blown away with excitement that I have nearly broken down several times.
Our company, Re/Max Executive Realty put on a golf tournament today at one of our prestigious golf courses here in Charlotte, NC. They had a nice dinner at the club house, an auction on great autographed sports memorabilia and a raffle for many many nice prizes. They really took the time to put this together and it turned out really well. I am not a golfer, but RE/MAX supports The Children's Miracle Network at Levine's Children's Hospital where Kayleigh is. I knew for a long time, that each house we sold, we would automatically donate money out of our commission to The Children's Miracle Network and it has certainly paid off :) We are so grateful to work for such an awesome company. Thank you Scott and Cindy for caring so much. You both are certainly a blessing to our family. We were asked to speak about Kayleigh and to help raise money for a good cause. I put together a speech today while we visited Kayleigh and I stood up in front of a nice sized crowd, with Aimee by my side, where I just let it all go. I am not one to stand up in front of a crowd to speak, but I feel that I am really good at putting my emotions in my words on paper. It turned out that all my nervousness was worth every single knot in my stomach because when I finished and the crowd gave us a standing ovation, and we lost it. Did I mention, that I am not one to show my emotions either, but I kept tearing up for at least an hour afterwards. It really impacted us in a way that made us feel like we accomplished something great today. Hopefully we were able to raise a lot of money, but more importantly we were so pleased to have gotten the opportunity to speak to others and possibly change someone for the better. Beyond our great standing ovation from the speech, several guys came by our table and gave Aimee and I their raffle prizes ($50 Dinner Gift Certificates to two different places). That meant so much to us, that we both just lost it, Again! When grown men are so touched by Kayleigh's story, you just wish the rest of this world would learn something from that. It would certainly be a much better place to live. "Kayleigh, you are just so amazing. You have touched the lives of so many people and you don't even know it yet. I can't begin to tell you how proud I am
of you. I am so proud because you never gave up on us when times were tough. You never gave up when none of the doctors believed you would survive. You are stronger than I will ever be and every time I checked to hear your heart beating before you were born, you were there to tell me you weren't going anywhere. Even though I was scared of losing you every hour of everyday, God protected you in the palm of His hands and made sure you were safe. I pray that you will use your God given gift to change the lives of others as I am trying to do for you right now. Together, we can do great things and I promise to never give up on you since you never gave up on me. I love you with all my heart, my beautiful little girl! I love you, Daddy"
10/14/2008 9:55:00 PM
A Chance to Give Hope
Aimee's Mom and Step Dad were finally able to hold Ms. Kayleigh. They were so happy to have gotten the chance and they enjoyed every minute of it. Today was another good day, except for the fact that Kayleigh has not pooped all day. They started her on the fortifier and like all the other times we have dealt with this, she might be stopping up again. They are going to give her a glycerin shave this evening (suppository) to see if that helps. There biggest concern is her lack of growth. She did grow some last night (1565 3.7lbs) which is good, but besides the calories for growth, her little body needs nutrients. While breast milk has been the best for her, it lacks the nutrients an IUGR (Internal Uterine Growth Retardation) preemie needs. If Kayleigh was a term baby and normal size, this would be a different story and I would be fighting for breast milk all the way. We will just have to try different things until one of them works or her bowels will mature enough to handle anything. Hopefully it doesn't take too long or end up in another exploratory surgery. Other than that, Kayleigh is doing good. Because she seems to be struggling to poop, she hasn't finished her bottles like normal and she didn't last long while breast feeding with Aimee tonight. Before I share some awesome news, I wanted to let everyone know that more bracelets were ordered. If you want one, click on the buy now link over to the right of the page. Several people asked if we were ordering more and we just put in a new order today. For those who don't know what we are doing, we are putting together a scrap book for Kayleigh, so your photo (while wearing your bracelets) along with a note to Kayleigh will have it's own page. That way she will remember all the wonderful people who prayed for her. Below is a photo that I just received to add to Kayleigh's scrap book. Alison, Elli and Lukas are triplets preemies who are following Kayleigh's story and have been praying for her. We are so blessed to have these three beautiful children reach out to us. Thank you so much!
Now for the awesome news that we got today!!! You know yesterday we spoke on behalf of The Children's Miracle Network for our hospital at a Re/Max fundraiser event? Well, below is an email from the representative who we met out there yesterday. I will let the letter speak for itself, but it is AWESOME NEWS for all of us who want to share our stories to give people hope. Adam and Aimee, Hello! I hope you (and Kayleigh!) are having a good day. I stopped by while I was at the hospital today to say hello and thank you again for speaking at the RE/MAX tournament yesterday. Cindy and her team did a wonderful job putting that together, but you all really made it hit home as to why the CMN fundraising is so important. I wanted to touch base with you about you possibly sharing your story again. Each year, we have both a Radiothon and a 30-minute television special about Levine Children’s Hospital (LCH). Both are major fundraisers for LCH, raising hundreds of thousands of dollars, and are great avenues through which we can share special stories with the community – to let them see the miracles that are taking place right here! We would love for you all to be a part of these events and to share Kayleigh’s story. I read your blog with Kirstin who is Director of Communication here at the Foundation (also copied on this email) and we were both so moved by your photos, your videos, and your experiences. You all have certainly been through a lot and are truly inspiring. Jim and Jen, the morning show team at Lite 102.9 are already scheduled to come to LCH and record interviews on October 30th. These interviews will be used to create montages for our radiothon in December. We also may have our videographer there who will be filming for our TV special. I know you said
you get nervous with public speaking, but these would be easy interviews about your family and we would only film to the extent that you are comfortable. Please let me know if you are interested in helping us with these projects. Kirstin can fill you in with more details if you have any questions or concerns. Again, it was wonderful to meet you yesterday and we will continue to follow Kayleigh’s progress. Let me know if there is anything I can do for you all. Thanks, Lindsay
Without hesitation, we have agreed to do the program and we look forward to seeing it move so many people. We wish you all the best and we are so glad to have so many people pulling for Kayleigh. Your prayers have moved mountains and have certainly made a miracle out of our precious girl. I pray that you all will be blessed by God in so many ways for the love you have given our family. God Bless, The Freemans :)
10/16/2008 8:24:00 AM
10/15/08 - Perfect Day!
I am just hoping and praying that we have more days like today. After her glycerin shaves last night, she had two big blow outs and another “Large Stool” as they called it, today. She grew 40 grams last night which is double what the doctors were hoping for Kayleigh to grow each day. (Total 1605 = 3lbs – 8.6 oz) One of our doctors said that he would do the happy dance if she grows 20 grams a day, so he owes us two happy dances. Her feedings went pretty good today. Besides sleeping like a rock this afternoon and not being interested in eating when we were there, she took all of her 32 mls this evening without a problem in just 20 minutes. The reason she has been tired is possibly due to the increase of oxygen they are giving her. The doctors decided to decrease her flow to .5%, but hike up her oxygen to 100% which won’t affect her eyes at this state in the game, but it will mainly help her oxygenate her blood and prevent her pulmonary hypertension to act up. It was very smart move because I don’t think I have ever seen her sleep so heavily than we have today, which will also prevent her from burning unnecessary calories. The doctors are sending Aimee’s breast milk off to find out what the caloric make up is. That way we can get an idea of how effective her milk will be. They will still have to fortify with something because Kayleigh needs all the other nutrients that breast milk can not offer to a preemie of Kayleigh’s size. Tonight was a great night, because we finally finished Kayleigh’s room. I don’t think we have ever been so detailed before because we wanted to make sure everything was as close to perfect as can be. We even went back with a fine brush to touch up spots that probably didn’t need touching up. I hope it looks good. One of our new clients/new friend shared with us a children’s book that she wrote and published. It is called Ebenezer Flea and it is just an adorable book.
Aimee read it to me in the car on the way up to the hospital right after we got it and it is a cute lesson in life. I highly recommend it for your children. The website of this book is http://www.ebenezerflea.com/. Every child needs a favorite bedtime story, so we plan to read this one to Kayleigh a lot when she comes home :)
Thank you all so much for your prayers through all this. I know I thank you almost every night, but I truly can not thank you enough for the support and love you have given our family. God Bless, The Freemans J
10/16/2008 11:03:00 PM
10/16/08 - Chubby Cheeks
Look at those chubby cheeks. Those 40 grams last night really made a difference because even Aimee and I noticed it right away even tough we see her every single day. The bottom photo was towards the end of our visit and she was getting a little cranky. She was so funny with her little attitude. She is doing so well though. She latched on to Aimee for a good feeding session and she then took some of her bottle, but quickly fell out from all the hard work. She was finally awake for my parents, so they got to see her in action. My parents just had bad timing before because she had always been sleeping or facing the wrong way in her isolette, which hindered their chance to see her so active. She didn't gain any weight over the past night, but she pooped a few times so that may be a good reason why there was no weight gain. They did drop her flow down to .4 liters and she is satting high, which is awesome. She took all of her bottle at this night feeding and is tolerating the food really well. We have not heard of any aspirates, desats or bradys while feeding! Woohoo! Our goal right now is to continue to do well over the next couple weeks, get the cardiac pulmonary cath, recover from that and then come home. She passes all the tests to come home except her ability to finish her feeding consecutively and stool more often. They want to see her feedings improve her growth, which so far we are doing pretty in that area over the past couple days. We can take her home on oxygen, so we are actually one foot out the door now. The doctors are actually talking more and more about her going home soon. I can't believe it!! We just have to take it a day at a time and hope that she continues to do well, so we don't have any setbacks. Our prayer request is that she continues to improve her situation in all categories (feeding, growth, stools and saturation). So far so good!
10/18/2008 2:30:00 AM
10/18/08 - Doing Great! Kayleigh had a great day today. She weighed in tonight at 1625 grams which is 3 pounds - 9.3 ounces. Her flow is still on .4 liters. Kayleigh took all of her first bottle tonight and took 3/4 of her second bottle, so that is a much improvement from yesterday. She also pooped a few times tonight, so the similac special care fortifier is working this time around. I guess her bowels have matured a lot since she was not able to pass it through her system the last time. Thank GOD!!!! Besides having such a great day today, Kayleigh had a very special visitor. Keren, which is my cousin's wife, was in town this week for meetings with her company. She spent the evening with us last night and all day today. She is heading home tomorrow, but she was able to visit Kayleigh today for a good amount of time. I am so glad that Keren was able to spend some time with her because it isn't often that we get to see her. Other than that, it was a pretty mellow day. Before Aimee and Keren went back to visit Kayleigh, I got to spend about an hour with her by myself. It was awesome just having her sleep peacefully on my chest. You know she is completely content when her heart rate is around 110, her respiratory is consistent and her saturation is close to 100. That right there shows that she is so comfortable. I just sat there and spoke to her about many different things and made up songs to sing to her. I know she doesn't understand me, but for her to hear my voice makes all the difference. It was such a wonderful day today and I hope tomorrow is just the same.
10/18/2008 9:56:00 PM
10/18/08 - A NEARLY PERFECT DAY!!! Besides one minor issue, she was completely perfect today. She grew 10 grams from last night, which puts her at 1635 grams (3lbs - 9.7oz). She pooped several times today, so her bowels are getting on a normal routine and she is no longer backing up with the extra calories they are giving her. They added an extra bottle feeding in, so now she gets 5 bottle feeds and 3 tube feeds all day long. All 5 of her bottle feeds were flawless as she took and tolerated every ml and had no aspirates on any of them. Last but not least, they dropped her oxygen flow to .2 liters and she is still satting close to 100% all the time with no desats or bradys. Now that means there was only one thing that kept her day from being completely perfect. Besides Kayleigh doing all these perfect things, she didn't do any of it at home with all of us. We know she will soon though, so that is beyond exciting. It has just been long over due to see such a perfect day for her and can only pray that many more are to follow. Kayleigh deserves it more than anyone because we all know this has got to be so stressful on her to be a term baby couped up in an isolette for most of her day. You wouldn't just put your baby in a box and take her out every three hours to change her diaper and feed her if she was home. I am just happy that we may only have a couple more weeks of this. Since we have gotten to progressive care, we have been getting a little more antsy to take that trip out the front door! :)
Thank you all for your prayers and sorry I didn't get any photos today. I promise to take a bunch tomorrow for you. I know how you all love to see her pretty little face as much as possible. Please continue to pray for more days like today, so she will be ready to come home in a couple weeks. It is getting exciting and we just can't wait! The day is going to be one of the happiest days of our lives, that is for sure.
10/19/2008 11:55:00 PM
10/19/08 - Just Speechless!
Wow, where do I begin? Today really showed us there is light at the end of the tunnel and it is creeping on us quick! The doctor called us this morning and we unfortunately missed his call and weren't able to get in touch with him since he was already walking out the door for the day. He said he would talk to us tomorrow, so I am really looking forward to that conversation. What I do know (from our nurse who heard the doctor during rounds today) is that Kayleigh's cardiac catheter procedure is being moved to Tuesday or Wednesday of this week. They also dropped her oxygen flow to .1 and are now feeding her PO (Bottle) feeds at every feeding. Through out the whole day, she killed every single bottle in about 15 minutes, so how is that for progression? WOW!!!! From talking with the doctors last week, they were saying that after Kayleigh's catheter procedure, if everything looks good and she is feeding good and
growing good, then she should be good to go home. Well, we don't know for sure, but since she is feeding great, she gained another 20 grams (1655 grams = 3lbs - 10.3 0z) and her procedure is this week, we may be getting ready for a homecoming before we know it. So the progression has been so amazing this past week as if she's just hit the fast forward button on the remote. So, cross your fingers and say some prayers as we are getting closer to completing this miracle journey that we've been on for the past 27 weeks. Wow! It has been 27 weeks since we found out Kayleigh was growing behind schedule and this nightmare of a journey had begun. I am speechless right now that I just can't put in to words how amazing this feels. God has certainly blessed us with something so special and all I want to do for the rest of my life is use this experience to help others. This feeling in my heart is just so unbelievably fantastic that I could scream with joy from the top of my lungs, although I may give Aimee a heart attack with out prior notice. WOW!!! Just speechless! GOD BLESS EVERYONE FOR ALL THE SUPPORT AND LET'S PRAY FOR A WONDERFUL WEEK!!!!
10/20/2008 9:43:00 PM
10/20/08 - Then and Now Today was media day for Kayleigh so I wanted to reflect a little on the growth this little girl has accomplished. Even though Kayleigh is almost at the four pound mark, she has nearly tripled in size since she was born. Then
& Now
Then
& Now
Then
& Now
Then & Now
So when you say she is so tiny, your right. But, we'll never forget how tiny she used to be. Wednesday at 8:00 in the morning, Kayleigh will be having her cardiac catheter procedure done. The doctors are going to measure her pulmonary pressures. There are two outcomes to this procedure and we are certainly hoping to the better of the two. The first outcome is the pulmonary pressures are high, but not constant. That means with time, they will lower to a normal state when the VSD (Hole in the heart) is repaired and she will live a normal life. The second is that the pulmonary pressures stay fixed, which the RN did not go in to great detail as it is not a good scenario. What we basically learned is that if Kayleigh has fixed pulmonary hypertension, her heart would be at a constant high pressure and we all know high blood pressure is not a good thing for the body. I don't know anymore details then that, but it seemed as if the nurse just wanted us to try and stay positive and hope for the best. So I ask all of you for more prayers that this test results in a case where Kayleigh will not have pulmonary hypertension or high pulmonary pressures for ever. She has overcome many obstacles, but we need to overcome this one too so please find time to pray for Kayleigh again. I really don't know a whole lot else and our doctors advised us to not do a whole lot of research as each case is significantly different amongst preemies. It is also not the same as pulmonary hypertension amongst adults due to the different size of human we are dealing with. The good news is out of all of this, is if she recovers well from the cath procedure and can hold her temperature when they take her out of the isolette, she will be ready to come home. That could be as early as Monday of next week. WOO HOO! So...Beyond this final hurdle of the unknown, Kayleigh is doing great. She grew 15 more grams last night which puts her at 1670 grams = (3 pounds - 10.9 ounces). The doctors have increased her bottle feedings up to "as much as she wants". They tried to take her off her oxygen completely to see how she would do, but she started to desat. The doctor said he would try to wean her down from 100% to see how she responds to that. She has been finishing all her bottles except the one we fed her today. Aimee breast fed her for about 10-15 minutes really good before Kayleigh started to get tired so we switched
to the bottle. I guess it is much harder work to feed off the breast as the milk does not flow as easily as the bottle. The video below show Kayleigh right after finishing breast feeding and finishing half of her bottle, when she was trying so hard to stay awake, but just didn't have the strength. It is so cute when she perks up enough to do a half smile and then doze right back off. Thank you all for your words of encouragement and support through this whole journey. Kayleigh is almost in the clear and ready to cause bigger trouble outside the hospital walls. 10/21/2008 11:41:00 PM
10/21/08 - Surgery Postponed Unfortunately the surgery is postponed tomorrow morning, but it is definitely for a good reason. Another child is in dire need of the procedure, more than Kayleigh is at this point. So, we are more than happy to give up our spot to someone who needs it more. The cardiologist called me today and basically told me that he can monitor Kayleigh's heart pressure through an ultrasound and since Kayleigh's heart/lung pressures are stable right now, they don't feel it is necessary to perform the cardiac catheter at this point. Now, I am not positive if he would rather postpone the surgery or wait to see more growth from Kayleigh before they decide to do the procedure. His comment was, if the procedure showed that they could close the VSD (hole in her heart) without causing problems with the lung pressures, she still needs to be over 4lbs to do that surgery. So, waiting until that point would only give the lung pressures more of an opportunity to come down on it's own. Now, we wrestle with the idea of her coming home earlier since we don't have to do the procedure right now, but I won't know that decision until tomorrow. I do know they have to bring Kayleigh out of the isolette to see if she can hold her temperature well. Plus, we would have to learn the signs of complications in case she were to start showing pressure changes in either the lungs or the heart. We will learn more tomorrow when we speak with the doctor and find out his orders. We are just happy that Kayleigh is stable enough to postpone the procedure for a time well suited to make a strategic decision with her current situation. Growth seems to be the only thing holding us back, but she did grow another 10 grams last night putting her at 1680 grams = (3 lbs - 11.3 oz). She is slowly getting to that 4 pound mark, but any weight gain with stable lung/heart pressure is completely fine with me. We know she will get to the desired weight for the doctors to make a perfectly planned decision. Other than that, she is doing great. She took no less than 33 mls on all of her feeds today and she is allotted up to 40mls. She threw a hissy fit when we got there this afternoon, but once I got that bottle in her mouth, she was more than satisfied. Aimee had an appointment this morning and I did as well, but we had to go in separate directions to be able to attend both appointments. We normally do everything together, well...besides going to the bathroom. But, Aimee stopped by Wal-Mart before her appointment and found out that they have a larger preemie section than you would think. She bought an awesome onesie for Kayleigh that says "My Heart Belongs to Daddy". It was perfect. Speaking of perfect, a couple of Kayleigh's friends who follow the blog have made Kayleigh some awesome outfits for her to wear. I have to show them off and I thank you all so much for making them for her. These are awesome. The two onesies are made from Bright Little Beginnings and from a Mom who is part of the Crochetville Organization. Thank you! Thank you! Thank you!
10/22/2008 9:23:00 PM
10/22/08 - NEW CASA!!!
Somethings wrong with this photo...(Is that a third foot?) ha!
That's right!!! Kayleigh has been moved out of her isolette and into a bassinet. She has held her temperature great so far and slept much better this afternoon. It is such a great feeling to know she is out of that cage and has the ability to look around more. They actually decided to move her to a small crib and will do so tomorrow because she has her music machine and other things that take up a lot of room. We are fine with that upgrade too because I think the bassinets aren't that spacious either. Please forgive me, but I am not one to complain on here. Although, I will say that we were both struck with our very first service disappointment today. On her blue binder that is filled out by every nurse (all day long) that Kayleigh has, is a note that says "Parents want to be present when Kayleigh is moved from the isolette to a bassinet" I mean, it is a very big step for Kayleigh and we want to be apart of that to celebrate. That note has been on Kayleigh's blue book for over a month and when we showed up today, Kayleigh had already been moved into the bassinet. I was very disappointed and hurt. Thanks to Aimee or I probably would have said something smart to the nurse. But, what can you do for something that has already been done? It won't make such a special moment as special anymore. Anyhow, Kayleigh is doing amazing today and I just had to show off a ton of photos. I actually took 132 photos and I picked the best ones out of the bunch to share with everyone. Kayleigh grew 35 grams last night. She weighs 1715 grams = (3 lbs - 12.5 oz). They also decided to wean her off her oxygen all day today and they are currently on .1 liter of flow with 65% oxygen. She has been eating fantastic and since she is starting to get really cranky about 30-60 minutes before her scheduled feeding times, they decided to change her schedule to feeding on demand. That means, she eats when she is hungry. She took to Aimee's breast very well this afternoon and must have gotten a lot because she didn't want much of the bottle afterwards. This evening, she took 50 mls, so she is tearing it up!!! We are just amazed by the progress she is having. Everyone was right when they said that out of nowhere, she will begin to take off and that is exactly what is happening right now. The update about the cardiac cath is up in the air right now. They said she will have it done before she goes home, but then we are not sure what the rush is. I brought up a good point to our doctor today and he agreed with what I said and is taking it to the cardiologist. That always makes you feel good. What I brought up was, if Kayleigh heart/lung pressures are stable, why are we rushing to get the cath procedure done right now when we still have to wait for Kayleigh to grow to get the VSD repaired? If 4 lbs is the minimum size Kayleigh has to be to have the VSD surgery performed, why are we tempting fate at the minimum size when things are curently stable. Let's wait until she grows a lot more, so she can withstand the surgery better at a larger size, and when intervention is needed to help the pressure before something bad occurs, then they can step in and do the surgery. What is the point of doing it now, for our satisfaction to know it is done and we can move on or for Kayleigh best interests? If this surgery can be done in 2-3 months, then let's monitor her pressures and wait for her to be at a size that can tolerate anesthesia better. We all know what happened after the past surgery on the bowels when she took a turn for the worse while recovering from the evasiveness of the surgery. Anyhow, it makes sense and our doctor is going to talk to the cardiologist about all of it and let us know tomorrow. I am thinking that if we wait to do the surgery and Kayleigh is holding her temp, she could come home very soon. We would just have to be trained on what signs to look for if her heart/lung pressures change direction. Not too much to stress about, right? ha! We just want what is best for Kayleigh, not our satisfaction so if she has to wait, she has to wait. For all those who ordered bracelets recently, we just had a large shipment come in, so we will be sending those out. I hope everyone else got theirs okay. If you didn't, please email me at(Adam@TeamFreemanProperties.com) so we can fix the issue. Thank you all so much for ordering them. We were amazed at all the people who bought one and cared so much to share in Kayleigh's journey like that. It is certainly a blessing to have each and every one of you in
our lives. Thank you! Thank you! Thank you! I truly can't say it enough. God Bless, The Freemans :)
10/23/2008 7:31:00 PM
10/23/08 - 4 Months Old!!!
Happy 4 Month Birthday Kayleigh!!! Well, the cardiac catheter surgery is back on and it is at 7:00am tomorrow (10/24), and sorry for you early risers, but I have not seen 7:00am since we drove all through the night to Ohio for the family reunion trip. Aimee and I are night owls, so we never go to bed before 2:00am, but I think we might be going to force ourselves to go to bed early tonight. We have to be at the hospital for 6:00 - 6:30. The reason the doctors wanted to do the catheter tomorrow is for the sole purpose of not waiting any longer incase the pressures are reactive. Meaning...If the pressures in the lungs are reactive and can be lowered by closing the VSD, then Kayleigh will soon get the pulmonary band or the complete closing of the VSD surgery done. They don't want to wait any longer incase the blood vessels in the lungs cap off which will then close the window of opportunity to bring the lung pressures down, which will then make her condition inoperable.
The cardiologist said that worst case scenario is Kayleigh's lung pressures will not come down and she will have a short termed life, maybe in to her teens and possibly in to her 20's. It would be considered pulmonary hypertension, but it is a complete different situation when a preemie has it compared to a normal gestational aged baby. Since Kayleigh was forced to grow earlier than normal, blood vessels seem to struggle the most. The eye surgery was for the same reason, the blood vessels didn't grow correctly and this is the same situation with the lungs. Let's just pray that the pressures are REACTIVE, so they can do something about it and we can recover, fix the VSD, recover again, pack up and then go home! Today, Aimee and I were filmed at Kayleigh's bedside for a program that is going to air on Thanksgiving. It is a program to raise money for the Children's Miracle Network at Levine Children's Hospital . Right after the taping, one of the largest radio stations (Lite 102.9) in Charlotte came in and we recorded a program for a radiothon which happens here in Charlotte every year around December. For both programs, we were able to talk about Kayleigh and her amazing story. Out of all the hard work to share our story and touch someones life in a way that can give them hope or change their outlook on life, we have been completely blessed to do just that. My goal has been to save a life, but maybe it should be to "save one more life". That way, I will never reach my goal, but I will always be satisfied with the effort I have put for forth. For those who remembered my post about the molar pregnancy and the doctors who did a skin biopsy on Kayleigh to see if that was the case. Well, we got the results back and it was in fact NOT a molar pregnancy. The results from the further testing on the placenta have not come back yet, so maybe they will find some answers in that. Kayleigh is on a role with her weight gain though. She gained another 30 grams last night, which puts her at 1745 grams = (3lbs - 13.6oz). We need to keep that up! She has been feeding much better since they put her on "feed on demand". She took 50 mls just a little while ago and she was feeding again when we just called up there. They are also doing some blood work to get ready for the procedure tomorrow. I am starting get nervous as the hours go on, so please pray for Kayleigh tomorrow that her procedure goes well and she recovers quick. They will put her back in the NICU until she recovers to go back to NPCN. I will be sure to update you earlier tomorrow evening when we return home. I will try not to make it as late as normal. Thank you all for your support and please say a lot of prayers for us. We know they work and we need your help :) God Bless, The Freemans :)
10/24/2008 1:38:00 PM
10/24/08 (3:15pm) Surgery Update - Prayers Needed Badly!!!
The day started off good and the photo above is us seeing Kayleigh off to surgery at around 6:30AM. The procedure took a long 3 hours and after 2 hours, we started to get really antsy. Our main Neonantologist came in to check on us and told us things went well with the surgery. Kayleigh did have one of her pressure spells when they first inserted the catheter, but she quickly recovered. The spell that I am talking about was just like when she as recovering from the last bowel surgery and they needed to put her on nitric oxide. Well, we got the news that Kayleigh's pressures are REACTIVE and they would then do the surgery to CLOSE the hole in her heart instead of banding it because she is at a size large enough for them to close it. I guess they will go less than 2000 grams if necessary. So that is wonderful, but then we were quickly nailed with some not so great news. Her lungs have been through hell and back and she may have done a lot of irreversible damage. That means, when they do the surgery to close the hole in her heart (VSD), her lungs might not allow the pressure to come down anyways. We won't know that until the surgery happens. The interesting news is that we found out Kayleigh has another hole in her heart that will play the same role as releasing built up pressure to equal everything out, but we still won't know how well that works until we get the surgery done. After we got that news, we were told the bedside nurse would call us back shortly for us to come back. Thirty minutes quickly turned in to an hour and then to two hours. We were flipping out in a panic as we knew something was just not right. We finally got someone to spill the beans, but Kayleigh had a
bad reaction coming back from the surgery. They said the Heparin used to thin Kayleigh's blood for the procedure had a negative effect on Kayleigh. The insertion point to the catheter was not closing up and was bleeding profusely, then blood started to come out of areas it should not be coming out of, such as her mouth. They gave her something to reverse the effect and thank God it helped. I do not know what happened back there, but Kayleigh looked like she went through a war zone. She had several different IV's in, a blood transfusion going on for the lost blood and she had blood on every instrument around. She was really puffy and swollen, and her body was as white as a ghost. When we were able to get back there, she was in a much better state than 30 minutes prior. She was already coming down on her vent settings and she was sleeping peacefully. This was not a scene that any parent should ever see. Since we had Allyson and Brandon with us and because of RSV season, we had to go back separately. I lost it when I got back there and Aimee is in really bad shape right now. This is where we need your prayers the most. Aimee spoke with the Cardiologist when she was back with Kayleigh. He is fearful that Kayleigh's window of opportunity is running short to fix the VSD to control these high levels of pressure in her lungs. They want to do it early next week, meaning she won't have a whole lot of time to recover from this drastic event that took place today. The problem we are having is Kayleigh's response to surgery and the doctors are most fearful of that. She did fine with the ROP surgery, but was not great with the bowel surgery, and now worse with the catheter procedure. Today's procedure was supposed to be a minor procedure, but Kayleigh must not be doing to well with the anesthesia and the effects it has on her body. Maybe she would not react that way if the hole in her heart was closed, but then there is no way of telling until then. This next surgery to close the hole in her heart is going to be intense. They will have to use a lot of anesthesia. Her heart will have be stopped and she will be placed on both a heart and lung bypass. The doctors are fearful she might not survive the surgery, but she would pass away if she doesn't have it either. This has been a really tough morning for us and we need your support and prayers more than ever. It is so hard to think that we were just days away of coming home, and now we are faced with this. I can't begin to describe the pain and the fear that we are feeling right now. All we can do is trust in the Lord that He knows what He is doing. Please pray for Kayleigh and for the specialists that are working on her right now and will be working on her for the surgery. We are supposed to hear from the main cardiologist who is doing the surgery sometime this weekend, hopefully sooner than later. I will update you the moment I hear something. Please pray for us and God Bless everyone!!! The Freemans :(
10/25/2008 10:33:00 PM
10/25/08 - Hanging In There
First of all, I want to thank every single one of you for the kind words and prayers. I have my phone with me at all times and I can check my email from it and every time we got an email, it brightens up our spirits. You all have helped us stay strong through this rough patch. Out of everything we have been through so far, this is by far the hardest part of the journey. The reason is because of this up and coming surgery. It is so hard to see Kayleigh being faced with so many challenges at once and have to be in the best shape to overcome them all for a chance at life. All Aimee and I can do is have faith that things will go perfectly for Kayleigh to come out of this unscaved. Tonight, Aimee told Kayleigh that we can't wait to tuck her in her own bed each night and kiss her little love scar. It has certainly been a rough two days. Kayleigh is slowly making some progress from her nightmare of a day yesterday morning. She has been heavily sedated, but every time the medicine wears off, she starts to desat to the point where they have to "bag" her to bring her sats back up. To bag her means to manually pump air/oxygen in to her lungs to bring her sats up since she can't do it herself. They had to do that at least four times today, which is not so great. Her blood pressure is also elevated and does not seem to show a lot of improvement over the whole day. They are administering medication for that and starting tonight at 8:00, they did a much larger dose to help bring the pressure down. We should and hope to see some results after a couple doses. They will be giving that to her every 6 hours. Besides that, her right leg where she had the catheter put in is a shade of purple. They call it "cath leg", and we were told it is normal. They are keeping an eye on it to make sure there is blood flow and her foot has a pulse. It was blotchy yesterday, but the whole leg is purple today. I hope to see improvement with that as well. Tonight while we were visiting, Aimee held Kayleigh for several hours and to our amazement, Kayleigh was doing pretty good. At first, Kayleigh was out cold from being sedated, but she started to move around and peak an eye out to see what was going. We knew she was coming down off the medication, so we were very worried that she would start to drop her sats like she did all day yesterday and today. As more and more time that went by, she would move as Aimee spoke to her and her sats were looking better than normal. Kayleigh was really being comforted by Aimee's voice and it made our visit so wonderful. It gave us more hope that she is moving in the right direction. We just hope she keeps it up. We spoke with the cardiologist and they are planning on doing the open heart surgery to close the VSD once Kayleigh recovers. They are scheduled for Monday, but if we need to push it back because she is not ready, then they will be flexible enough to do so. Although, they want to do this as soon as possible so their window of opportunity doesn't run out. The resistance in her lungs are already high, so it could be any day that the pressures can change from reactive to fixed. We just hope she can recover quick enough to get this major surgery complete before our time runs out. We are racing against the clock right now. We are supposed to meet with the heart surgeon who is doing Kayleigh's surgery tomorrow to get more details and his perception on this whole situation. We are curious to hear what his take is on all this and what he thinks her percentages are. Our biggest fear right now is that Kayleigh is not strong enough to handle this kind of surgery. Being that she had such a horrible response to this minor procedure, I am afraid of how she will do with open heart surgery. I know she is a strong little girl, but the stats don't prove the odds to be our favor right now. The cardiologist said they want Kayleigh to be 100% cleared in every aspect before they do this surgery so we have the best possible chance of everything working out the right way. She will be considered in critical condition for the first week after the surgery and there is a large chance they will leave her chest open in case something goes wrong and they can get back in there. The hard part about all of this, is we have no chance or power to make any alternative decision that will help. Because of how severe Kayleigh's situation is, she will die without the surgery and there is a high chance she could die from the surgery. After talking with some of the doctors and nurses, we heard that several of the doctors have consulted with colleagues from other major hospitals around the United States about Kayleigh. They wanted to make sure there decisions were the correct decisions and if the majority agrees with what they are planning to do, they have to go with that decision. My take on it, is that with Kayleigh being smaller than the expected size to close he VSD (She was suppose to be 2000 grams) and the unique situation with her counterpart (Pulmonary Hypertension), this is no ordinary walk in the park surgery. VSD's are
closed every day all over the world, but with all the challenges that are involve with hypertension and elevated pressures/resistance, this makes for a nightmare of a challenge for a surgeon. The doctor doing our surgery is a younger heart surgeon who comes from some of the elite surgeons out of Boston. Some of the best heart surgeons in the world have given high praises of this doctor, so we more than approve of him handling our little girl's heart. Please pray that God will guide this doctors hands to successfully fix our baby girl so she can come home to a family who will love and cherish every minute of every day with her. Do you think this doctor realizes how special he is in that he will be the only man in Kayleigh's life who would ever truly and literally mend her broken heart? Without a doubt, I am seriously one jealous Daddy, but a completely thankful Daddy for this surgeon's knowledge and skills that God has blessed him with. God Bless and God Please Help! The Freemans :)
10/26/2008 6:53:00 PM
10/26/08 - Slow and Steady That is the type progress Kayleigh is having right now. (Slow and Steady) She has come down from 20 to 5 on her nitric oxide and her oxygen is at 50%. Her blood pressure is still elevated, which is a major concern so they are going to keep working on bringing that number down. Her leg is looking better as it is not as dark purple as it was yesterday. Kayleigh is not as puffy/swollen as she was yesterday. They gave her some lasix and it has helped. All that is great news, but Kayleigh is still heavily sedated because every time she wakes up, she desats really bad. Tonight, Kayleigh started to rustle around a little and dropped her sats to the lowest we have ever seen them. Her heart rate was around 70 beats per minute and her oxygen saturation was at 7 before she was bagged and her sats were brought up. It took a couple minutes to get them back up to normal. For those who have not experienced it, it a few minutes of holding your breath while watching and praying that the numbers start to go up. We feel bad sometimes because all we want to do is comfort her, but any kind of stimulation will cause her to spiral out of control. Last night was different because Aimee was able to hold her, but sometimes you have good days and bad days. I am just happy to see some progress today. The surgery was scheduled for tomorrow, but it has been postponed. The surgeon came to Kayleigh's bedside to see her progress and she is in no way, shape, or form to be going into heart surgery tomorrow. They are flexible and will move her accordingly. We did speak with another doctor for a little while today and he is positive about the surgery, but knows that this will be Kayleigh's toughest challenge yet. We were told that Kayleigh could possibly be put on ECMO for a few days to give her heart a rest. An ECMO is a machine that works as the heart and lungs for Kayleigh. There will be tubes that draw blood by pumping it out of her body. The blood will divert through a machine that will clean and oxygenate the blood and then pump the blood back in to the body. Now how is that for technology!?!? This will give Kayleigh some more rest period through the first and critical week of recovery. We did not meet with the heart surgeon today, but we will be meeting him tomorrow at 9:00 in the morning. We look forward to this meeting, not because we have a lot of questions, but for the sole purpose of hearing what he has to say about all this. The conversation will definitely strike up some more questions, but we are interested in hearing what his thoughts are about doing this in depth surgery on Kayleigh. We have complete faith in him, but
the unknown is what is giving us the most stress. We want to know everything that is going on so we can try to relax. It is an interesting situation and I have been pondering it ever since I learned we were setting up a meeting with the heart surgeon. This guy who is about to work on my little girl is classified as one of the elite surgeons, right up there with brain surgeons. He has one of the most respected jobs in America or the world for that matter. His educational accomplishments are one of the best in the medical field and he has the knowledge and skills that God has blessed him with to save our sweet Kayleigh. I look forward to shaking his hand, not for the work he will do on my child, but for the work he has already done. He chose to use his God given intelligence to save lives. What an honorable man! Aimee and I've been so wonderfully touched by generous people lately. We have been given a few gifts for Kayleigh, people are buying bracelets to support Kayleigh and one girl said she's going to talk to her principal at school to see if they can do something nice for Kayleigh as a whole. It just blows my mind how wonderful you all have been to us. I can't thank you enough for all the wonderful things you have done. I feel like God has tested our family and we are doing everything we can to pass that test by keeping our faith in Him, but I also feel like he has tested every single one of you. And you know what??? You ALL have passed that test in my book because of the support you have given Aimee and I. God calls us to love each other and to treat others the way we want to be treated, and every single one of you have done just that. We can't thank you enough! You know, my whole purpose of blogging and sharing our story for everyone is to hopefully touch someone's life in a way that will change that person for the better. I am using my trials for the greatness of God. Some might call me a strong person, but I am not strong. I am actually at the weakest point of my life and only my faith in God is what keeps me strong. This verse explains it all too well. 2 Corinthians 12:9 “My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” God Bless, The Freemans :)
10/27/2008 8:05:00 PM
10/27/08 - A Week To Recover We spoke with the heart surgeon today and he wants to push the surgery off for a week to allow Kayleigh to get as much recovery time as possible. He is thinking Monday or Tuesday of next week. He wants Kayleigh to be 100%, just as she was before the cath procedure, so she will be able to handle such a tough and demanding surgery. He also said that even though we have a limited window of opportunity before the pulmonary pressures become fixed, we should be okay waiting a week. THANK GOD!!!
The doctor went over the procedure with us and it goes a little something like this. Once Kayleigh is under anesthesia, they will open her chest up and insert two tubes in her heart to hook up to the bypass machine. Once that is in place, they will stop the heart and take 45 minutes to let the body cool to freezing 16 degrees. He will then open the heart up, close the VSD hole shut, and then close the chest back. Once that is complete, he will raise the body temperature back to normal and restart the heart. If everything looks good, they will not put her on the ECMO which is a machine that works in place of the heart to give the heart a rest. She may need to go on this if her heart shows any signs of fatigue after the surgery. They also may leave her chest open in case they need to get back in there to do something. The first week, she will be considered very high risk and the sickest baby in the CVICU (Cardiovascular Intensive Care Unit). They are expecting her recovery time to be several weeks. He told us our chances of something going wrong are 20%, which is much better than what I thought. Since Kayleigh is so small, they are not only worried about her heart and lungs, but her brain, liver and intestines since blood is the major source of keeping those things working well. If they aren't getting enough blood, then they are more than likely to fail. The Neonantologist was being blunt about Kayleigh's chances also, and he commented that if Kayleigh's lung pressure do not come down over time, her right ventricle of her heart will work extra hard to fight against the pressure and soon fail causing her to die. Only time will tell with what direction her little body is going to take us. It is going to be a rough week of recovery, but it is also going to be a rough month of making sure these pressures move in the right direction and the heart works normal again. Kayleigh is moving in the right direction though. Her blood pressure is coming down. It is still high, but no where near what it has been. They are still not sure what has caused her blood pressure to rise, but thank goodness it is coming down. They are doing a CT scan to make sure there is nothing wrong with her head, causing her blood pressure to be up. She is still desatting a few times a day, but seemed to pick herself back up quicker than normal. She is on 35% oxygen and 4ppm on Nitric. They tried to take her off of the nitric all together, but after 15 minutes her sats dropped a bunch. She weighed in tonight at 1780 which it was at 1880 the other day, but most of that was excess fluid. Kayleigh's leg is looking much better too and starting to get some color in to it. They still have her heavily sedated and is starting to look like herself again. We did find some interesting news about her situation in the cath lab the other day. When they gave her the heparin, which was used to thin her blood to prevent blood clots after the procedure, Kayleigh's VSD and Hypertension caused her to shunt blood over to the wrong side. The wrong side meant blood was being forced in to the lungs at a much higher pressure than normal causing it to overflow the lungs. She was bleeding out of her mouth and because of that, they told us she was in really bad shape. I took that as she almost died and they agreed if the excess oxygen they gave her to bring the resistance down, she would have. That little girl is a fighter and is not going to give up at any cost. Also, these doctors are unbelievably amazing and I give them so much credit for the work that they do. We are blessed to be at one of the best hospitals, (Levine Children's Hospital) in the South East. Gi Gi said it perfect on the comment page about the surgery being postponed, she said "I am sooooo relieved that God is giving us more time to pray." That is so awesome!! Everyone, please pray and pray and pray for Kayleigh and the medical staff who are doing everything they can to help Kayleigh pull through all of this. Tell your family, friends and churches to pray so God can hear us LOUD and CLEAR!!! I challenge every single one of you to pray one extra prayer for Kayleigh this week, so God will lay his hands on Kayleigh and show us how Powerful, Wonderful and Awesome He is. We are so incredibly thankful for those who offer to send Kayleigh a gift, but the perfect gift is prayer and that is ALL we ask for.
God Bless & Thank You!!! P.S. Aimee and I (both) created a Facebook account, so go to our link below and add us as friends so we can continue to touch lives with Kayleigh's story. Adam- http://www.facebook.com/profile.php?id=744236111&ref=name Aimee- http://www.facebook.com/profile.php?id=788018776&ref=name 10/28/2008 10:07:00 PM
10/28/08 - Hanging Tight!
First of all, stop for a second and just look at all that mess in the second photo! If you could only hear how bad it looks. There are alarms and chimes just going off as Kayleigh dropped her sats more and more today. They have no idea why, other than the fact that she is irritated with the vent being down her throat, her never ending pricks for blood gas tests today, her swollen cath leg issues, her huge PVC line sutured in her other leg, a infected suture coming out of her gastrointestial surgery scar, a hernia they found in her pelvic area that will be needing attention later, no 50ml bottle feeds anymore, dry tongue, eye boogers galore, non stop wet diapers from IV fluids, no snuggling allowed from Mom or Dad, no peace and quiet from all the dinging machines, and the constant sedatives which scares anyone who wakes up not knowing what the hell just hit them. What do you think? Almost every single time, the nurse would have to bag (manually oxygenate) her to bring her back up. For most of you who have never been in the NICU, this is the true meaning of stress. On a good note, other than her sats dropping over and over, Kayleigh is recovering from her cath episode pretty well. Her blood pressure issue has dropped to a normal level, her nitric oxide is down to 2ppm, and her cath leg is starting to look a normal shade of pink. The heart surgeon came in today and was very impressed with her stats as a whole. He understood her sats dropping, as he said it is normal when she freaks out, the hole in her heart is shunting blood to the wrong side, causing non-oxygenated blood to be pushed out to the body. Once that is fixed and she is irritated by the smallest things, that won't be happening anymore. Tomorrow they have a CT scan to make sure her head checks out with no major problems. Being that her blood pressure came down, they don't think they will find anything wrong, but they want to be positive before she goes in to surgery. Now we are not 100% sure, but the surgeon hinted that if she continues to check everything off her list this week, she may go in to surgery sooner. We are not positive, but we will be sure to let you know if that happens. We know they are really worried about this window of opportunity. If we wait too long, her lung pressure might never come down after closing the hole and she would die of heart failure. That is NOT going to happen though! So if she is good to go to surgery, then let's get this show on the road. As the days go by, we are more and more confident about the open heart surgery. Aimee and I don't know what it is, but we have a gut feeling (which has always been right) that she is going to kick butt through this, shock everyone once again and be on her quick route home. Although, they are expecting us to be in the CVICU for two weeks, NICU for a few weeks and NPCU for a few weeks. That is the goal and we are NOT going to have any more set backs after
this! GOT IT?? If you've read Kayleigh's entire story, you will understand where I am coming from on this. There has just been one too many set backs. I can't believe just last week, we were one foot out the door and now we have the biggest test of all. Aimee and I are just blown away from all the responses we are getting on FaceBook and people creating prayer lists. All I can say is THANK YOU! It touches me deeply that we are all in this together. Kayleigh is a fighter and she is going show everyone how strong she really is. I know deep down in my heart, that with prayer, anything can be done. Please keep praying hard and joining together for Kayleigh. We can't wait for the day that we can show her all the wonderful people who loved her so much. She is so blessed to have every single one of you in her life fighting with her ever step of the way. Whether surgery comes later this week or in to next week, my biggest prayer request continues to be that Kayleigh will recover 100% (and then some) from this previous battle before she goes in to her open heart surgery. Thank you all so very much for your support! God Bless, The Freemans :) 10/29/2008 6:44:00 PM
10/29/08 - The Cure!!! When we arrived this afternoon to the NICU, our nurse had told us that Kayleigh was still acting up through the night and all through the morning. Kayleigh was still dessating and not showing any signs of improvement. It was just flooring me because this is not how Kayleigh normally acts, so something must me wrong. The doctors and surgeons came back through and they couldn't figure it out either. They thought maybe she just isn't responding well to the sedative medication or the amount of Nitric Oxide that she is on. It is not a good sign when some of the best doctors around are just dumbfounded by her actions. But wait...I think we found the cure. Her name is Aimee, Mom, Mommy or as I call her "My Beautiful." Within minutes of Kayleigh resting in Aimee's arms, she started to get that wide eyed excited look on her face and her sats just leveled out. Over the next couple hours, Kayleigh's sats stuck around 85-95, which is exactly where we needed them. They also decided to drop her nitric from 2ppm to 1ppm (parts per million) and lowered the pressures on her vent. I 100% feel that Kayleigh needed to just be comforted a little bit from dealing with all this traumatic mess. The doctors agreed and even decided to give her 15 mls of food to see how she would tolerate that. We just called up there a few minutes ago (8:00pm) to see how she was doing after we left the hospital to get Allyson and Brandon, and she has been doing great ever since. No desats AT ALL! Can you believe that? Actually, I can! I know when I am sad or upset, all I have to do is cuddle up with Aimee and she makes me feel all better. Aimee is by far the best wife and Mommy around. ("No offense Mom cause no one can cook Lasagna & Mac n' Cheese like you") Seriously though, I have learned so much and I have become such a better person in my life because of Aimee. You might think that I am a strong person because of how I am dealing with this unbelievably tough journey, but it is because I stand by such a Strong, Godly Woman! Aimee is the rock in my life and the best thing God has ever blessed me with. I know Kayleigh gets all of her strength to fight her battles from Aimee.
"God, thank you so much for what you have done in my life. You have blessed me with a wonderful family and I couldn't ask for anything else to complete my life more than what I already have. Please watch over my precious little girl as she has no idea of the incredible battle she is about to face. Someone told me something hopeful today that will stick with me through this entire surgery and intense recovery. She said "God, You are not ready for this angel yet." Please give her the strength to fight through this heart surgery and recover quick, so she can come home and start her future with a family who is craving for her attention. Kayleigh has touched so many lives with her journey and she will touch so many more lives throughout the rest of her life. Please don't take her from us now, but if you do, we trust her purpose has already done amazing things because she has done them for you. In your precious name, Amen" The Freemans :)
10/30/2008 5:43:00 PM
10/30/08 - Almost There!!! THE VENT...
to the Nasal Cannula.
Card from Grandma & Pa Pa "G"
Wow, what progress Kayleigh has since we left last night! She is now off the Nitric Oxide and they removed the vent breathing tube and put her on the nasal cannula. She has not had any major desats since before Aimee's magic touch last night. That is awesome!!! I am just amazed at her turn around and it definitely makes me feel even that much more comfortable with her going in to heart surgery next week. They are still leaning more towards Tuesday, so that gives Kayleigh several more days to recover. Thank goodness they are not going to push to move it earlier. They decided to start feeding Kayleigh yesterday and even though she has had a few aspirates with every other feeding, they have decided to increase her ml's even more. Since her bowel sounds are good and her belly is soft, it certainly won't hurt anything. Her weight has been fluctuating because of water retention and the lasix (diuretic). Tonight, she weighed in at 1840 grams which is right at 4 pounds. Let's just hope it doesn't drop from that. Besides the great progress she is having, we really enjoyed our time with her today. It was a little rocky at first because she had not yet come off the vent and she was really showing signs of the vent tube irritating her throat. She was practically gagging the whole time I held her and I had to constantly adjust her positioning so she was more comfortable. When the respiratory nurse came in, removed her tube and put Kayleigh on the nasal cannula, it made all the difference. We were able to spend a few minutes with her before we left to go pick up Allyson and Brandon from school. Kayleigh was so excited and just seemed to act like her normal self again. We were so happy when we left the NICU, we just smiled all the way home. We are still smiling like crazy! haha. Today was a great day for Kayleigh and I am just so thankful because she really went through some rough times this past week. It was as if Kayleigh was a totally different person when she was sick and to see her awake and active now just relieves so much stress. A ton of bricks have been lifted from our backs today and I just hope she continues to make progress throughout the rest of the week. It is really heartbreaking to know she fought so hard to recover from this past procedure, only to have to do it all over again soon. Although, while some may say it is horrible that she has no idea what is about to happen, others might think this traumatic situation is better left unknown. She is going to have some battle wounds, but we will call them her love scars :) Thank you all again for your support and please continue to pray for Kayleigh's upcoming surgery.
God Bless, The Freemans :)
10/31/2008 9:41:00 PM
10/31/08 HAPPY HALLOWEEN!!!
Doesn't she just look adorable in her 1st halloween costume. Thanks to Jake, (my grappling/sparring partner) and Alicia Kozlowski for the outfit. They just had a baby girl named Sloan Piper, who was actually supposed to be two weeks older than Kayleigh. It is still weird that Kayleigh is 3 months older, but about 1/3 of Sloan's size now. Aimee and I had such a blast being able to put the outfit on her for some photos. I don't think we were supposed to dress her since Kayleigh has a PVC line still in her leg, but what kid doesn't get to dress up for Halloween? ha-ha! Kayleigh is continuing to make great progress. The final check off from the list for a stable prognosis was the CT scan and we are happy to say that it came back normal today. The cause of her high blood pressure was actually due to the kidney's giving off a secretion called renin due to a possible blood clot that formed somewhere in her body. Thank goodness it dissolved and the blood pressure came down to normal, but the doctor's fear was that the clot was in Kayleigh's brain. That would not have been good. It is a great relief to know it didn't cause any serious damage and it fixed itself. I told the doctor today that the heprin that almost killed Kayleigh in the cath lab was probably the same thing that saved her life with this blood clot. Kayleigh has gone up on her feeds to 30 mls and is having only a tiny bit of aspirates. She is growing!!! She weighed in tonight at 1870 grams which is 4 pounds - 1.9 ounce. Thirty grams a day is very good growth right now for her, so let's pray she keeps that up. Tonight while Aimee and I were trickertreating with Brandon and Allyson. A friend we met has a little girl who was born 27 weeks was 2 lbs. She is now 8 years old and half the size of Allyson who is 9. All I could think about was how precious Kayleigh is going to be when she is so much smaller than everyone else. She can stay tiny for ever, which makes it that much easier to cuddle with me :) Even though Kayleigh is perfectly stable, the heart surgeon is still looking at Monday or Tuesday for the surgery. As the days go on, I am getting more and more nervous, but still confident as can be that the outcome will be an amazing success. I am so happy that Kayleigh will be going in to this procedure at 100% so she can be strong and fight hard. We were told not to wear ourselves out by staying for long hours this next week because Kayleigh needs us to be strong for her while we are there. So, I think we may beg and plead for an available sleep in room if it is not being used. We just don't want to be away from her for a second if we don't have to. She is not going to fight this recovery alone and we are going to pray and send positive thoughts every step of the way. It is going to be a very emotional week for all of us (you included), so being that I will have a lot of time to do things, I should be able to update the blog more often with any news. I will send some photos, but I don't expect them to change very often since Kayleigh will be sleeping the whole week. I will try to be creative though :) Thank you all so much for your prayers. Kayleigh has recovered 100% because everyone is reaching out to God for her. It is amazing how quickly things turned around when you all posted your thoughts and prayers. That is a true testiment of the power of prayer. If you don't believe in God's power after seeing it first hand through Kayleigh, I don't know how else to prove it to you. Keep the prayers coming and I hope everyone had a wonderful and safe halloween. God Bless, The Freemans :)
11/1/2008 9:53:00 PM
11/1/08 - Thank you! Kayleigh had another good day today. She came off her TPN (IV Nutrients) and they increased to 33 mls on her feeds, which she is tolerating very well. She did have some problems sleeping, but they said that it a normal reaction of withdrawals from the pain medication she was on. I guess being awake all through the night and all day long kept her active enough to burn extra calories. Her weight went back down to 1790 grams. Other than that, Kayleigh is doing well and her surgery is either going to be Tuesday or Wednesday. Monday, the heart surgeon had two cases book up, but that is perfect for us. We
were afraid they would want to do it Monday and with us having to take Brandon and Allyson to school in the morning, we just didn't want to have any kind of conflict from the get go. So many people are helping us this week, so Aimee and I can be right by Kayleigh's side. Aimee's Mom and the kids Dad (Mike), are going to help out a bunch with Bran & Ally. My parents are going to watch our two dogs all week, so we are so thankful for their support through all of this. The only one who is going to be lonely is Myrtle. She is our turtle who is in love with me right now because I cleaned her long over due tank today. Poor turtle is such a trooper!
I also want to thank Kylie Reese for sending me a beautiful photo of herself wearing Kayleigh's bracelet. We will be putting this photo along with your note in Kayleigh's scrap book. Kylie, Thank you so much for praying for Kayleigh. Your Mommy (Hollye) doesn't realize how big of a help she was. When Aimee had struggled for more than three weeks to make milk for Kayleigh, your Mom sent us some medicine that helped her so very much. We would have had to order it, which would have taken close to a month to come in, and we needed the milk for Kayleigh right away so we could feed her. You all are a life saver and we are so blessed to have crossed paths. Thank you all from the bottom of our hearts. Kayleigh will be so honored that you stepped up to the plate, like God wants us all to do, and help a family you barely even know. Thank you and God Bless! We will never forget you guys! I know we have a huge week ahead of us, but we have a very exciting weekend coming in two weeks that we wanted to share with everyone. As Aimee and I are trying to stay as positive as possible about our situation, we have to plan for Kayleigh's homecoming at some point in the near future. We are having a baby shower for Kayleigh on November 15th, from 2:00-4:00. We have truly appreciated everyone's support through this and we would LOVE to
meet you all, but we don't have everyone's address to send them an invite. So, if you want to join us for an amazing celebration, we would be honored to have you. Please email: Aimee@TeamFreemanProperties.com, so Aimee can email you the e-vite with all the information you will need. Thank you all so much and God Bless!!! The Freemans :)
11/2/2008 6:15:00 PM
11/2/08 - Family Kayleigh is doing really well today. They brought her oxygen flow down from 6 liters to 4 and she is breathing in around 30% oxygen. When I was up there this morning, I fed her a bottle. It was her first one since before her cath procedure and she downed 35ml's in about 10 minutes. They are sill going back and forth with the breast milk and the fortifier. Kayleigh had some aspirates with her last meal, so they might have to go back to breast milk again. The doctors are wanting to pack on as much weight as possible for this heart surgery. Honestly, I don't think it is going to make that much difference, especially when she is not digesting the fortifier right now anyway. The time that I spent up there today was awesome. One of Aimee's Mom's friends made a beanie for Kayleigh and it was purple with a pink petunia on top. Aimee's Grandmother (Nana) calls Kayleigh her Little Petunia, so the hat was perfect. I should have taken photos, but I figured since I was up there alone, I wasn't going to take much while I was holding her. She was awake the whole time and I just sat there and held her pacifier in for her. She would get anal if it fell out or I moved her an inch. Spoiled already! :) When Aimee came up later in the afternoon, Kayleigh slept the whole time. Even though Kayleigh wasn't much company for Aimee, I am glad to see she got some rest. This is a very special photo to me. This is my Mom (Patti) and her Dad, my Grandfather (Papa Yash) from Conneaut, Ohio. My parents went to visit last week and they took photos for Kayleigh's scrap book. Papa Yash is the man! He is 85 years old. He grew up as a hard working man who provided for his family he loved so much. He exercises everyday and he plays golf a few times a week. He is a proud father of 9, grandfather to over 20, and a great grandfather to probably a million and counting :) He just lost over 30 pounds from a new diet he is on and looks so great. Way to go Papa! We miss and love you so much!
As we all talked about Kayleigh knowing when Aimee is around and Kayleigh being comforted by her Mommy's touch. I really understand that bond with my own Mom. Call me a Momma's boy, and your probably right. I am the youngest of three boys, so when I was ever hurt, had surgery, or my brothers would give me a severe beating, Mom was always there to comfort me. Both of my parents have always been a special part of my life and I hope that I will be half the parent that they were to me. They have taught me so much about being a good parent, not by words, but by actions. I am truly blessed by the love they give me.
11/3/2008 11:16:00 AM
SURGERY SCHEDULED!!! We just got confirmation that surgery will begin at 7:30AM - Tuesday (11/4). We were told it will take 6 hours, from we we leave her to the time we see her again. Please keep her in your prayers. I will have my computer with me to give updates a couple times a day as the week goes on. Also, we have had several people request that we post our address on the blog. If you would like our address, please email Aimee so we can keep track of everyone's email who plans sends something for Kayleigh. Her email is: Aimee@TeamFreemanProperties.com
11/3/2008 7:05:00 PM
Eastern Standard Time - Post #2 Today Hey everyone! I wanted to post a quick update for Adam since he won't be writing the blog for two more hours or so. I realize that it is getting late & some of you may be going to bed soon. We have received several emails throughout the day asking what time zone we are in. We are in eastern standard time. Kayleigh will be going to the OR around 6:15-6:45 with surgery starting around 7:30am. It should take 4-6 hours. We have also had several emails today asking us for our registry information. After digging a bit more I noticed that if you choose something from our registry they can ship straight to us & you do not even need to mess with our address. Of course if you are sending something homemade or not on the registry you will just need to email me at Aimee@TeamFreemanProperties.com & I can email our address. (We don't want to just post it on the blog for the whole world to see) Our registry number at Babies R Us is: 44630706. The registry number for Target is: 011003997490747. In case you forget the numbers just look up Aimee Freeman in NC. You will find me pretty easily. Thank you so much to everyone that sent kind words today. They really warmed our hearts. We love the idea of having everyone pray at 7:30 even though we know it is early. Adam will be taking his laptop & will be updating the blog throughout the day. We also can check email from our phones so it is easy for us to see all of your thoughts & prayers. I never type the blog because Adam does such a wonderful job but I want to take a minute to say something if you all don't mind. Adam is always saying such great things about me & I never get to tell you all about him. I am so thankful that he has created & kept up with this blog for Kayleigh. I was telling him tonight that I wanted to create a blog & because I was drugged up in the hospital he beat me to it. I was almost upset with him. LOL I have to say that I don't think that I could have done the same job that he has. I am not patient enough to sometimes sit in front of the computer for hours trying to find just the right words to explain my thoughts. Or better yet when I am so tired that I can hardly keep my eyes open. No matter what he writes the blog every single night so that all of you will know exactly what has happened for the day & to document things so that Kayleigh will have such an unbelieveable record of her first days. He has been amazing throughout this journey & I don't think that I could have stayed as strong with anyone else by my side. Did I mention how darn cute he looks when he holds his little girl in this arms? He is so in love! So, thank you Adam for all of your hard work! We will have something so wonderful to look back on to remember this incredible journey & it is all because of you. Ok, so I hope that you all were okay with my gushing over my awesome husband. I figured that he deserved a few nice words & I would hate for him to write them about himself. That wouldn't be good. LOL Look out for Adam's post in an hour or two. It is going to be a good one. I think there may even be some cute photos! Ssh. Don't tell him I told you. :) Thank you all again for your amazing emails today. Please keep praying for us.
Aimee Freeman
11/3/2008 8:41:00 PM
11/3/08 - Night Before Surgery
Grandma stopped in for some love'n
Kayleigh with Brittany (Her favorite stuffed animal isn't so big anymore) First of all, if you didn't read the other posts, we posted two other times today so you can catch up on those before this one. Aimee is such a sweetheart for posting such a nice post. I had just got back from dropping our dogs off at my parents house and there was a note on my computer to check the blog. I thought maybe she was going to surprise me and tell me we won the lottery, but I quickly remembered that we don't buy tickets and anyways, seeing her post and speaking such nice things about me delivered more of a heartwarming emotion that any lottery could ever fulfill. I truly have the best wife in the world. We really enjoyed the time we spent with Kayleigh tonight, even though we were fighting back the nerves, anxiety and craziness of the surgery that is going to take place in the morning. It was so perfect because when you hold that precious little girl in your arms, a feeling of peace overcomes your body and you have no worries in the world as you soak up every second of that moment. Although, my Mom said it so perfect tonight, it is very tough to see Kayleigh so content and peaceful, just knowing she is going to be put through hell again tomorrow and for many days to come while trying to recover. It is almost cruel, but we can only trust in God that He knows exactly what He is doing with our little girl. People see us day in and day out and wonder how we can handle this situation with such strength and grace. Well, first of all we hide it very well and second of all, God is the reason. We have complete trust in Him that whatever happens, Kayleigh will be a perfect angel. An angel of ours or an angel of His. Her purpose will be so amazing, that the heavens will sing with a standing ovation whenever it is her time. We can only be selfish and pray that her purpose is not yet complete and we get to enjoy her for many many years to come. We seldom forget that our purpose, in our very short time here on earth, is to prepare for eternity in heaven. Tonight was a well needed bonding night with Kayleigh. Aimee and I were able to both feed her at two separate cares and Kayleigh was just so peaceful and relaxed the whole entire time. Almost too relaxed- HA! There is never a dull moment where a "Freeman" won't make light of a scary/crazy situation to relieve all the tension in the room. Check this out... The mood was almost perfect, like a well scripted scene from a movie. The lights were dim throughout the NICU, but a spot light seemed to shine down on Kayleigh as we had just finished giving Kayleigh her first bath. As she was laying under her warmer, Aimee was massaging Kayleigh and putting her in a deep trance of relaxation. You can see Kayleigh fighting back sleep as she didn't want to miss a second of Mommy's presence. Kayleigh would lay motionless, she would stop sucking on her paci and her eyes would slowly close. Then quickly, her eyes would open up and her paci would start bouncing back and forth again. This continued several times until all of a sudden, Kayleigh started to concentrate, as if she was trying to figure something out for the very first time. While that blank stare is frozen on her face, her paci falls out of her mouth and as Aimee went to put it back in, Kayleigh explodes!!! I am talking a raunchy, stinky blowout that everyone in the NICU could hear. And, you know what the funny part is? I caught it on film. Enjoy.... Never forget that no matter how rough or tough a situation is, a smile or a laugh can go a long way and make you feel SO much better. Thank you Kayleigh for making us laugh while we are so very scared. We hope you recover quick so you can make us laugh for a very long time. We love you so much beautiful!
11/4/2008 2:55:00 AM
11/4/08 - 3:54am - Good Morning Good Morning. Aimee and I just got up, did our morning routine (NOS Energy Drink for me) and are packing up the rest of our things that we may need. They are intubating her around 5-5:30, so we are going to get up there to try to hold her a little before they do that. I will touch base when we get in the waiting room. Thank you all for your prayers and I will be saying a prayer with everyone at 7:30 on the dot :) 11/4/2008 7:32:00 AM
11/4/08 - 8:45am - Surgery Is Under Way!!! We just got confirmation that the surgery is under way. Aimee and I got to the hospital this morning around 4:30 and spent a good 30 minutes with Kayleigh before they intubated her. She was so alert and excited to see us. It was very pleasant until they intubated her and the mood in the room did a complete 180. Kayleigh was not liking the tube in her throat at all. Our main concern was her hypertension and we wanted to make sure she was very comfortable so she didn't have another episode like last time. Unfortunately, the medication didn't kick in good enough and she was gagging on her tube. Aimee and I were really uncomfortable and as we watched them take her down to surgery, we were a nervous wreck. We both lost it when they took her in to the OR. After we left, we met up with my Mom and ate breakfast. We are all up in the waiting room now waiting for more updates. They said they started already, so I am not sure when the next update will be. We are just trying to hold it together and be as patient as possible. Thank you all for your prayers and God Bless!!! The Freemans :)
11/4/2008 10:02:00 AM
11/4/08 - 11:05am - Surgery Update
A Nurse just came in and said that Kayleigh is on bypass and is doing really well. Aimee and Mom just went for another Starbucks run :) Please continue to keep the prayers coming. We are on pins and needles here trying to keep each others spirits up. We have been reading all the emails that are coming in and it is just amazing the support we have out there. God Bless every single one of you! You are all so AWESOME!!!!
11/4/2008 11:35:00 AM
11/4/08 - 12:45pm - Surgery Update We just got a call with an update. Kayleigh is off the pump, but the doctors are still working. I am not completely positive what they mean by that, but my best guess is that she is off the bypass pump. The lady with the update just relays messages, so I don't think she would know if we asked her details. If she is off the pump, then that MAY mean she is not on ECMO either. The ECMO acts as a heart/lung system, sort of like the bypass. Also, if she is off the pump, then they have already warmed the body back up to the normal temperature and started the heart back. Plus, that might mean she doesn't need a pace maker to get the heart pumping again if it can't on it's own. Please pray that is the case!!! I am not 100% positive, but hopefully we will find some more details out soon. The good news is she is doing great and we are getting closer to the end of the procedure. Please hang tight and I will try to get some more details soon. KEEP PRAYING!!!! We are getting more excited because it seems things are going smooth.
11/4/2008 12:44:00 PM
11/4/08 - 1:49pm Surgery Update They're Done!!! The surgeon is going to come up to the waiting room to talk to us about everything, so I will be sure to update you as soon as he leaves. "AHHHH - We are so nervous to hear what he has to say" The Freemans :-o
11/4/2008 1:29:00 PM
11/4/08 - 3:03pm - Post Surgery Update It is with great excitement and pleasure to announce that Kayleigh's surgery went better than perfect. There is no ECMO and there is no pacemaker. Her heart started back perfectly and she is doing just fine. Her lung pressures have actually dropped a little already, which is amazing. They did leave her chest open to allow her heart and lungs to work without any extra pressure from the swelling and constriction of her chest cavity. Her lungs are working great and she is breathing good on the vent still. They were able to control the bleeding very well, so she didn't have an issue like last time with the cath procedure (Probably because the VSD is closed now). Her urinary output is better than expected, but they said it may slow down or stop completely. They have a catheter in there in case it does and some diuretics will help also. She does have an arterial line in her leg, tubes coming out of her chest and abdomen, but she is doing great for the most part. So all in all, there is a lot of great news here and I hope I explained it well enough for right now. You will have to forgive me because it is so hard to concentrate and remember everything when all your hearing are positive information over and over again. If I missed something, I will be sure to add it later. This is to show that with prayer, ANYTHING is possible. Not to be a party pooper, but even though this surgery was a complete success, we are not out of the woods yet. This whole week, but more importantly, the next 48 hours are the most critical. Please keep praying and hope for the best with her recovery. I am just so stoked that there are no major issues, so that only means she has less on her plate to recover from. THANK YOU - THANK YOU - THANK YOU EVERYONE!!!!! We can not say it enough. With your prayers, we have been able to move mountains :) We are forever in debt to all of you for caring so much. Aimee and I are going to be able to see her soon, so I will update and educate you all later with what we learn in the CVICU (cardiovascular Intensive Care Unit). I am looking forward to it!
11/4/2008 7:14:00 PM
11/4/08 - 8:45pm - CVICU
This will be our home for a little while as Kayleigh recovers. I asked the question a million times tonight and I feel like every time I asked it, I got the same truthful answer. I wanted to know if the nurses, doctors or RNs were satisfied with her prognosis right now and the answer was always yes. In fact, it was a wide eyed yes whenever I would ask. It just makes me feel comfortable to know Kayleigh is doing good, or better than expected because she looks like she got hit by a truck. When Aimee and I walked in the room, all I could do was stay strong for her because Aimee was having a tough time. This was a really scary scene to witness. Not only was it really graphic, but it was our sweet Kayleigh. She is our precious daughter and no one should ever have to see their child so swollen and bloody with their chest cavity wide open as her heart beating a million miles an hour on the other end of a green gauze pad. Did I paint a good enough picture for you? The photos will always be a bad reminder and after long deliberation and talking with the nurses, we felt like we shouldn't post the graphic photos. Kayleigh should be remembered looking so darn cute. The ones I have added below are tough enough to look at. If you thought there were a lot of wires in the NICU, you've got another thing coming. There are three times as many monitors and three times as many bells going off. Right now since Kayleigh is doing great, we are not hearing any bells. We hope and pray to keep it that way. So far, everything I mentioned before is still the case, so I was able to relay the prognosis correctly. Aimee and I are staying really positive right now. As every hours passes, that is one less hour that she is critical. Let's continue to pray a lot that she will stay on this path to recovery and come out with flying colors. They don't expect babies to do this well, and certainly not babies Kayleigh's size. But, we are talking about Kayleigh here and she is no where near the ordinary, if you haven't learned that yet.
It is early, but Aimee and I are going to get some sleep. We will post as soon as we can tomorrow to let you know how her first evening was. I wish you all a wonderful day tomorrow and thank you so much for the support through such a tough day today. It gave us the strength to stay positive and God definitely heard every single one of your prayers. Thank you and God Bless!!! The Freemans :)
11/5/2008 9:04:00 AM
11/5/08 - 10:00am - FANTASTIC!!!!! As Aimee and I were were walking in to the CVICU this morning, we walked right past the night nurse who said Kayleigh was fantastic last night!!! She was so excited to share that news with us and we quickly thanked her, but she said "NO! Thank Kayleigh." Kayleigh had an amazing evening. She has not swelled up like they thought she would and she actually looks very similar to when we left her last night. Her urinary output is still beyond perfect, so they are blown away with that. When we walked in the room, she was moving her hands around in the air and looking from side to side. I was not expecting that at all, but she seemed to be uncomfortably happy. She held our fingers and we rubbed her head. After a
while, they did give her a little more pain medicine in case she was in any kind of pain. The cool news is she was not desatting or having any hypertension issues when someone touches her. With the VSD being closed, it makes perfect sense that the blood flow won't shunt over to the wrong side anymore when the pressure change. The heart might work a little harder until the lung pressures comes down, but we can only pray that will happen a lot quicker than not. I am actually sitting in her room right now while I type as they let us use our computers in here, which is bitter sweet! They are going to kick us out in a little while because they are planning on closing her chest back! THAT'S RIGHT!!! They feel like the swelling is not going to get any worse, so they are going to close the chest cavity breast plates and if the skin will attach also, they will close that too. If not, then that is okay and we will wait a little longer. When they close the chest, they have to monitor her for an hour to see how she reacts and if it is not good, then they will have to re-open. Anesthesia just came in so it might be happening right now. Woo hoo! Well, I better run, but I will update you all soon on some hopefully more great news.
11/5/2008 1:11:00 PM
11/5/08 - 2:11pm - Her Chest is Closed!!! Kayleigh's Pretty Blue Sutures
Pretty Pink Bow
All of her "Battle Wounds"
And ALL of it for that fact. As I said before, they were concerned with not being able to close the whole cavity and the skin too. But, everything went perfect and they were able to close the whole thing and she has some pretty blue sutures. They are going to monitor her progress over the next 24 hours. If things are causing a strain on her heart, they will open her back up to allow the heart to work without any type of constriction. I will try and explain to you a little bit about all the wires you see. The red wire with the heart on it goes straight in to her stomach to release any extra fluid in her tummy. Right above that, and below the main incision, there are two blue wires that go straight to the heart. Those are for the pacemaker in case that they have not had to use, but are attached in case they do. So if the heart stops beating, that will send a shock to the heart to help it beat manually. Under the white tape is a chest tube, that pulls off any extra fluid in the chest cavity around the heart. All the other wires are the normal leads that monitor heart rate and breathing compressions. She also has a IV line in her left arm, right leg and a PVC main arterial line in her thigh. Can you imagine having all that in you at once? I don't think she is going to like sewing when she grows up because she knows what a pin cushion feels like and she has been sewed back together more than enough. She is so pretty with her little pink bow on her head. I hope she doesn't mind me sharing these photos with all of you. If she beats me up for showing you all, that is okay because I don't mind taking a beating from her, just as long as she comes home :) I won't lie, there have been times where I have questioned God for putting me through this strain. But, now having gone through it and as we are "almost" done, I know that I am going to have a much better relationship with my kids and my wife because of it. We have been really close already, but we are closer now than we ever thought possible. Aimee is my everything and so are Ally and Brandon, but I am so happy that Kayleigh will get to enjoy the love they have given me. Keep the prayers coming as Kayleigh works hard to recover. So far she is doing amazing and we are so blown away by how strong she has been through all of this. I will update again later this evening. 11/5/2008 9:33:00 PM
11/5/08 - 10:54pm - Time to Work!!! Today was the end to a great day and we are pleased to say that her first 24 hours, which are the most critical, went very smooth. Since they closed the chest earlier than expected, they are going to start making Kayleigh work for her progress now. Starting tonight, they are going to slowly wean her off of her sedation medication and allow her to start waking up. As she starts to come to, they will do a balancing act with her dial settings. They want to try to help her relax while she is coming out of sedation. The scary part is keeping her lung pressures down, which also means keeping Kayleigh calm without much stimulation. That means that Aimee and I have to keep our hands off and not talk to her as much, which is tough but we know we need to do what is best for her. If her lung pressures do rise, since she does not have the VSD (hole in her heart) anymore to level out the pressure, the heart will bare down and work extra extra hard. The hard work that is placed on the heart, if the lung pressures don't come down quick enough, can cause it to weaken and fail at a fast rate. Also, if they can't fix the pressures quick enough, they will have to open her back up :( So, it is going to be a tough day tomorrow but hopefully Kayleigh will do fine and we can get past this. We are trying to be very positive, but her lung pressures were up all day today because of her heart closing procedure, some of the medications and the fact that she was not as sedated. But, since she doesn't have any other major stimulation going on tomorrow, we hope she will do better with controlling her pressures. Please pray she will do great.
All in all, today was another awesome day and she is showing signs of more improvement. I know this all sounds scary, but she is being put to the test only because she is progressing so well. We are so proud of the progress though that it just blows our mind. Several new staff members that we have met have said that they are amazed with how well she is doing for how little she is. So if they are amazed, then I am amazed. But, we all know who is in control and He can do ANYTHING :)
11/6/2008 9:55:00 AM
11/6/08 - 10:56am - So Far So Good!!! Kayleigh's progress of coming off her sedation is going very well so far. We were a little afraid this morning to find out that Kayleigh had an episode last night probably 10 minutes after we left. She had an episode with her hypertension, but now that she doesn't have that hole in her heart to control the pressures, her heart started to work three times as hard. They were able to sedate/paralyze Kayleigh to get her to relax so she can put an end to her episode. It worked!!! After speaking with the doctor today about it, we were quite curious why this was happening and if he was concerned about it. He was NOT concerned because he thought she would be having these bouts continuously and she isn't. The doctor also mentioned that they are going to start feeding her a little through a tube and possible start taking her off some of the tubes. That is AWESOME!!! We thought we would be in the CVICU for a couple weeks and the doctors mentioned that if things continue to progress, we could be back up in the NICU in a few days. WOW!!! That would be awesome progress right there. Other than that, I need some assistance from ALL of you out there. We met our two neighbors who are also in critical care right now and I would like to ask everyone to say a prayer for them. One baby is named Mattox and he has a ventricle that is not working at all. Mattox's parents have a facebook account, so go to facebook.com and search for Cary Mayes from Greenville, NC and you will see their page. Ask to be a friend and send them your thougths and prayers, please!!! You know how I want to help everyone so please do this for us. Delandis is another baby that we have met and he is having congestive heart failure. Right now he is on a pacemaker, but may be put on the list the receive a transplant if it doesn't work. I do not have a website for him, but please say a prayer. Thank you! Thank you all for everything and hopefully we can continue to get great news on Kayleigh's progress. I will be sure to update later as we get more news. Thank you and God Bless, The Freemans :)
11/6/2008 5:09:00 PM
Quiet Day...shhhh
Quiet Day means VERY GOOD! She has not had any more episodes and still seems to show signs of improvement. They are still weaning her off some of the medications that she is on. Her level of sedation medication is down and they are taking her off of her blood pressure medicine all together to see how she reacts to that. They dropped her nitric oxide from 15 to 5 today. They now are going to slowly drop it the rest of the way. She will go down to 1 either tonight or tomorrow, but I heard tonight might not happen because the heart surgeon is not on call if there is a bad reaction. I am not going to argue with that :) They are planning on removing a tube that is pinched off right now anyways. It is the tube that is running in to her stomach to pull off any extra fluid. We are very pleased with her progress so far and we hope she keeps it up. Thank you all so much for praying for our CVICU neighbors. If you couldn't find their link by searching, here is a direct link to their facebook page: Baby Mattox
This is yet another awesome photo from some very special people in our lives sporting their Kayleigh bracelets. This is (from left to right) Emily, Bob, Joyce and Bill. Bob is my Uncle and my Dad's brother, and Joyce is my Aunt. Bill and Emily are long time friends of theirs, who have always been family to us all. They are all the way over on the west coast and we miss them tons!!! Thank you so much for the love and support that you have given us through this very tough time. You are the true meaning of family :) We love you! God Bless, The Freemans :)
11/7/2008 11:58:00 AM
11/7/08 - 2:05pm - Quick Update Kayleigh is still doing great and has not had any setbacks. As a matter of fact, they have taken her off the epinaphrine (blood pressure medicine), weaned her off her sedation medicine almost completely, increased her feeds to 12 mls every three hours, and they are thinking about extubating her later this afternoon if the chest x-rays look good. They have some chest PT to do which is to help loosen up her lungs to prepare her for extubation. Hopefully it will all go smooth and she will continue to shock us with her unbelievably progression. We are just amazed at how well she is doing and I don't mind it one single bit :) God, You have certainly heard all the prayers out there and we can't thank you enough for the blessings you have given us. ***On a very sad note, one of our friends Rachel and Ryan, who we met along the way, lost their baby girl Hannah (Hannah's Story) this morning. We don't have any update on how or why, but please pray for their family. Rachel & Ryan unfortunately ALSO lost their preemie, Carly (Carly's Story) not too long ago, when she was 4 months old due to a heart defect. Carly is one of "Our Angel's" here on Kayleigh's site. She was in the same NICU as Kayleigh a few months before we arrived. God has certainly tested this family & they need a lot of support to get through this tough time. Thank you so much.
This is Helaina. She is a special little girl who has been praying for Kayleigh to get better. She has even been praying with her 5 month old sister, which we are so happy to hear that she is setting an awesome example. Helaina is going to be a wonderful big sister. Helaina, Thank you so much for caring about our little girl so much and Sarah, your family is amazing. We thank you so much for your support through all of this and we pray that God will bless your family with much happiness and joy! God Bless, The Freemans :)
11/7/2008 2:52:00 PM
11/7/08 - 9:58 - Slow Down... I think I jinxed Kayleigh a little bit tonight. Aimee and I went down to get a bite to eat and I called my Dad to give him an update. Everything was perfect at that point and they were talking about extubating her in the morning, rather than tonight to allow her lungs to open up a little more. The sacs close over time if there is not enough pressure to keep them open, so they need a little exercise from a little device that taps her chest to loosen up those sacs. They call it chest PT. Anyhow, as soon as I get back to the room, not even five minutes before we got there, she had another pulmonary hypertension bout. Her lung pressure shoots sky high and she turns purple, then her blood pressure will shoot through the roof trying to compensate for it and if it is not taken control of, her heart will fail. Also, with her blood pressure up, it could bust through her sutures or the arterial line causing major bleeding. So, they paralyzed her, gave her some sedation to relax her whole body, and increased her nitric and oxygen to get her back to normal. It doesn't take long to correct, but they have to act fast. The doctors main goal right now is to push her to a point where Kayleighs says "Back Off and Slow Down." Being that she had her bout tonight, she was saying just that. Kayleigh will likely be extubated in the morning and they will take a step back with some of the weaning and try again soon. No matter what, they are completely satisfied that Kayleigh has only had two hypertension bouts since her surgery. They expected her to have them continuously, so I am stoked to hear that. The thumbs are still pointing up with her condition, so there is nothing at all to worry about. Way to go Kayleigh!!!
The photo above is from the Nadeau family in Louisiana, sporting their LSU pride! They have been so WONDERFUL to Aimee and I during Kayleigh's journey. Kayleigh has a beautiful and fun looking bouncy seat that we CAN'T WAIT for her to get in. Soon though, soon! We appreciate your support so much and we are so grateful that you have shared our journey with so many other people and gathered all of them to pray for us. It has helped so much! You all are forever in our hearts. God Bless!
These two amazing children are Aliyah and Owen. They are Lee and Kirsty Freeman's beautiful children. They live all the way out in Canton Michigan and have been following and praying for Kayleigh from the very beginning. It is a blessing to have such wonderful family members from all over the place who still keep in contact, no matter where they are. Lee is my cousin and one of these days, I wish to make a trip out there for a good ole fashion baseball game. His team plays ball in these early 1900 uniforms, which are unbelievably sweet looking. We love you guys! I wish you all the best and we miss you tons! God Bless, The Freemans :)
11/8/2008 8:21:00 AM
11/8/08 - 10:23 - New Sign + New Order + New Project
Aimee and I were given arts and crafts to design a new sign for Kayleigh's bed. Since the other sign with all of our photos on it is at home, we figured we needed to do a whole new one for the CVICU. Aimee made this sign so perfect, by adding the heart :) The order is to extubate Kayleigh between 1-3 today. WHAT??? That is what I said when I heard it. I figured with the hypertension bout last night, they would give her another day to relax, but the doctor felt like the whole reason she is irritated and having those bouts, are because of that big breathing tube in her throat. Plus, the longer she is on the vent, the less Kayleigh can use her lungs to full potential, causing more problems down the road. Besides that, Kayleigh is doing good. She had a great night last night and has been alert this morning. We were surprised to see her sats as low and steady as they were with her being so awake. Normally she would get irritated easily and her sats would shoot through the roof. That is a good sign!!! WOWOWOW---Aimee and I are just sitting here. She is online and I am writing the blog, and our surgeon just pulled her chest tube and her pace maker wires out. Woo hoo! I didn't realize that is what they were doing. WOW, YES!!!! It was actually kind of gross and exciting at the same time. All I saw was our surgeon walking past me to the trashcan with her bloody yucky tube in his hand. Man, I am excited! We are making progress!!! OKAY - MY NEW PROJECT - You all know me well and I want nothing more than to make people feel wonderful about the things they do. Aimee and I were discussing the proper way to do this without making anyone single person feel left out. So, I wanted to write a general email to all the people who have helped Kayleigh along the way here. That means, I need to write to the: Neonantologists, Gastrointestinal Doctors, Ophthalmologists, Cardiologists, NICU Nurses, NPCN Nurses, CVICU Nurses and the OB-Gyn Doctors and Nurses.
So THEN, I thought something that would be even much much better and that is to have everyone (INCLUDING YOU!!!), write something nice to all of them at once. It doesn't have to be very long at all! My vision is to copy and paste hundreds of small letters from people ALL over the place, thanking every singe one of them for their help with sweet Kayleigh. You need to add where you are from so they will see how much their help has touched so many lives around the world. PLEASE, I don't beg, but I am begging ALL of you to write something. (Even if it is a few lines). You don't have to include your name, so you can be totally anonymous if you want, but you DO have to write where you are from to really make a big impact. I think this will be such a great thing to do and it will show these caretakers that they have impacted so many people by doing a WONDERFUL job for Kayleigh. Please take no more than five minutes (Right Now) and write your quick letter in the comment section below. You can title it as "Dear Kayleigh's Caretaker"
11/8/2008 5:15:00 PM
11/8/08 - 6:53 - The Vent is Gone!!!
Let's just hope and pray that it stays off too! Aimee and I were talking that this could very well be the last time she ever has to see the vent again. The more and more progression that she makes, the brighter the light is at the end of the tunnel. We are so blessed to have such great care here in the CVICU. They have made us feel so comfortable and whenever we have a question, they take the time to go in to details to educate us. Kayleigh has certainly enjoyed being off the vent today that her sats are looking so wonderful. Because her VSD has been repaired, it seems like her recovery time has tremendously improved. Going in to this whole open heart surgery procedure had us scared to death about how Kayleigh would be able to recover from it. She has done better with this surgery than any others she has had and I bet it is due to that hole being closed in her heart. We were told that she should take off full steam ahead now that this heart defect has been repaired. Aimee and I kind of got to hold Kayleigh today for a short period of time. I say kind of, because we basically just picked her up in her bed and held her there. She was so calm and relaxed, which was so surprising considering she would almost have one of her hypertension spells when her skin was touched. I guarantee it had something to do with the vent and not being on sedation medication anymore. The best news we heard all day is that if Kayleigh continues to show great signs, they are weaning her off several things tomorrow and she may go back up to the NICU in the next couple days. How awesome would that be??? Woo Hoo! Thank you SO MUCH everyone who sent in emails for Kayleigh's caretakers, and if you haven't yet, you better get on it :) Read the last post to see what project I am talking about. I am just in awe of all the wonderful emails/comments posted already. This is truly a blessing and I can't wait to put it all together and give it to them. Thank you all tons and tons!!!
This is cutie pie Connor, and he is only 10 weeks old. He sent me a cute email today about how he and his Mommy & Daddy (Chris & Michelle) have all been praying for Kayleigh from the beginning when we first posted on the Baby Center (September Board) asking for prayers. Well, Connor wasn't born yet, but he was in Mommy praying for Kayleigh the whole time :) He is adorable and we are blessed to share Connor, who is also a preemie, to everyone out there. God Bless you all and thank you so much for your prayers. You have definitely made a difference in our lives and we appreciate the support. Thank you Chris, Michelle and little Connor!!!God Bless, The Freemans :)
11/9/2008 7:50:00 AM
11/9/08 - 9:00 - "GOOOODMORNING"
"GOOOD MORNING EVERYONE!!!! I am feeling so great this morning. They took that thing off my forehead that tells everyone how much oxygen my brain is getting. They are also taking me off more of the medicine that I have been on because I don't hurt as much and my blood pressure is much better. They clamped one of my tummy (PD) drains because it is not pulling out anymore fluid. So that means they will take that out soon if it doesn't back up. I will be so happy when all of these tubes and wires are out of me. I have some really cool news. I overheard my Daddy asking the heart surgeon what the smallest baby he had ever done open heart surgery on and the surgeon said... ME!!!! Can you believe that??? I am glad Mommy and Daddy didn't know that before I had surgery or they would have really flipped a biscuit!!! Well, I better get back to sleep before the Doc yells at me. Here's Adam...Bye - Kayleigh:)" Aimee and I are about to go for a walk down to the park to enjoy the nice weather we are having. Thank you all for the wonderful emails that are coming in. I appreciate it so very much!!! If you haven't done one yet, look back at the "Sign + New Order + New Project" post. It is truly awesome to sit there and read everything everyone said. We are truly blessed to have every one of you! God Bless, The Freemans :)
11/9/2008 8:39:00 PM
At Loss For Words... As we heard about Rachel & Ryan, Hannah and Carly's parents, going through their tough time. I have gotten an update that I felt needed to be shared with everyone tonight. Hey guys. This is Rachel's sister in law. I just wanted to update you a bit. I'm not sure when Rachel will be able to do it. She was at our house Wed. and Thurs here in Fayetteville, and everything was fine. She had a drs appt Wed. morning, and Hannah's heartbeat was great. Thurs night, she stopped feeling Hannah move. She drank coffee and laid down, and still felt nothing, so she went to the hospital in Albemarle. They tried for 2 hours to find her heartbeat, but couldn't, and the OB later came in to do an ultrasound to confirm.
Hannah was born Friday morning at 9:05, weighing in at 2lbs 15 ozs. She was beautiful with a head full of black hair. An autopsy was preformed, but we won't get the results back for a while. Rachel's having very serious complications from the c-section. She is running a high fever, and was bleeding very badly. Her iron was very low, so they started her on iron and antibiotics. The Dr came in today and told her what was going on with her. He said that the placenta was attached to the uterine scar tissue from the first c-section. That was why the cord wasn't delivering what it needed to to Hannah. He also was not able to take it all out due to some large blood veins around it. Now, she is looking at possibly having to go through a DNC (is that right?) and also possibly a full hysterectomy. I PRAY that that doesn't happen, because, obviously, that would mean no children. The OB said that he doesn't recommend any future pregnancies anyway, due to the risk involved for her and the baby. He is planning on sending her to Chapel Hill to see a specialist. We need serious prayer warriors on her behalf. Hannah Kathleen's funeral is set for Thurs. It will be graveside, with immediate family only. She'll be buried with her angel sister. :) Thank you for your concern and your prayers during this extremely difficult time. The good news is, Rachel and Ryan have strong faith, and they are trusting in God for the future. keep in touch. Everyone, please pray for Rachel and Ryan as they go through this difficult time. Hannah's blog is: Hannah's Story - Please leave your condolences on her blog, so she will return to an overwhelming response of thoughts and prayers. I will touch base in the morning with our update, but please give support to Rachel and Ryan as they gave us so much support with Kayleigh.
11/10/2008 7:47:00 AM
11/10/08 - 10:37 - Mov'n On Up!!!
To the NICU that is. ONLY if Kayleigh's day goes as perfect as possible. They have pulled the stomach line (PD) and they plan to pull her catheter later today. We are actually about to feed her a bottle and see how she does with that. So last night and today have been going good so far. We had troubles yesterday afternoon with her belly blowing up, so they stopped her feeds completely and "thought she was hang withdrawals" from the pain medicine. Although when she was upstairs recovering from the cath, believe it or not, she was on more pain medicine and we knew just knew her belly blew up because of the amount of oxygen flow she was on. So, the Nurse Practitioner ordered for Methadone so Kayleigh could be weaned off the pain meds that she was "Having Withdrawals" from. Aimee felt deep inside there was something wrong with doing that and by now, we know when to listen to Aimee's gut feeling. In the end...The irritability that Kayleigh was having WAS from the air in the tummy, so we dropped her oxygen flow down from 8 liters to 3 liters, which corrected that problem and when our main doctor/surgeon came through late last night, he cancelled the order for Methadone because it is very harmful for little ones the size of Kayleigh. Go figure!!! So needless to say, the NP who said he has had 16 years of experience and 5 more in the CVICU and to trust his judgement on using Methadone, well his status just went in the crapper. The great news is Kayleigh wasn't harmed at all. Anyhow, everything else is moving right along and we hoped to be out by tomorrow afternoon and up to the NICU or NPCN. We are going up to speak with one of our Neonantologist today and see what his thoughts are. Another thing that has popped up is that Kayleigh was tested positive for MRSA a week after she was born and was moved to the MRSA section of the NICU. Well, the rules up there are that if you once tested positive for MRSA, she'll always stay in MRSA section. But, down here, she tested negative twice for MRSA so we are curious if she will have to go to that section when we go back up. I would hate for her to have to go back to MRSA and contract it since she doesn't have it now. All I have to say about this next photos is, ADORABLE! This is Kylie and she has made Kayleigh a sign. That is just too cute!
11/10/2008 8:15:00 PM
11/10/08 - Last Night in the CVICU!!! Kayleigh has been a big girl today as she has been on max feeds and eating very well from her bottles. She has come down to 2 liters on her oxygen flow and they will change her in the morning from a high flow cannula to the regular flow cannula. That is the one Kayleigh can come home to. She is also coming off the last of her medications, so that is a huge plus. It was cool to see more and more of those wires, tubes and IV lines disappear today. Each time I had to change her diaper (which was a lot), there were less objects that got in the way. Since Kayleigh is on full feeds, low flow, and no medication, she is in the same position she was when she was in progressive care (NPCN). So, Aimee and I are working our mojo to see if she can skip going back to the NICU and go straight over to NPCN. Wouldn't that be nice? Our take on it is if she is over there, she is closer to coming home :) We don't want to rush things, but we don't want to stick around if we don't have to either. You don't know how DONE we are with hospital life. We are ready to start taking photos of her in our house, in our car, in her crib, in her stroller, in her EVERYTHING!!! HA :) I first want to apologize before I tell you all this. A wonderful person made us a video that you can see on YouTube.com called "Meet Kayleigh" and I am so grateful for her doing that. With that being said, Aimee and I decided to make one too because you can't have too many videos of your children, right? And, we wanted to do it slightly different with a storyline of her ups and downs. So I don't want to make that person feel bad that we did one too, as we are VERY appreciative of it. I look forward to completing this one with photos of Kayleigh coming home. Grab a tissue because we ALL cried like babies when we watched it. I hope you like it too: Kayleigh's Story
I am just amazed by all the people out there who have been praying for Kayleigh. I think it is the cutest thing to get emails from people who say their children are praying for Kayleigh before they go to bed. This photo is so touching to see little George and Sidney praying for Kayleigh. (Sidney's just not crossing her hands) ha! Thank you guys so much for your prayers and from the progress that Kayleigh has been making, we ALL know that God heard those prayers.
We are just blown away from the sweet photos that we have gotten from all of Kayleigh's friends. This photo above is a 25 weeker named Story giving Kayleigh a "virtual hug". When this popped up on our computer screen, all you could hear was "Awwwwww" and we showed all the nurses and that is the same response all up and down the CVICU today. This is just too adorable! Thank you so much Story for the virtual hug sweetheart! You are awesome!!! Let's all pray that Kayleigh will make it through this next week with flying colors, so we can start to celebrate her miraculous homecoming!!! HOW AWESOME THAT IS GOING TO BE!!!!!God Bless, The Freemans :)
11/11/2008 6:54:00 PM
11/11/08 - GREAT DAY & GREAT NEWS!!!
IV's coming out...
and all better. Today has been such a great day!!! Kayleigh was moved back up to the NICU this morning as we thought she would, so Aimee and I had to move out of the hospital and back home. Although it is good to be home again, the only bad part is that it limits my ability to post more than once in a day. So, forgive me for cutting it back to one again. I normally post late at night so everyone will wake up to a new update. Anyhow, Kayleigh is now back in the NICU an we were actually hoping that she would be good enough to go straight to Progressive Care, but since the neonantologists have not seen Kayleigh in a week, they wanted to keep an eye on her for a day, before they make that decision. As the day progressed, they did decide that she is good enough to go over, so we should be packing our things and moving over the NPCN tomorrow. Woo Hoo!! Other GREAT NEWS!!! Our biggest concerns besides Kayleigh being strong enough for her to survive the open heart surgery because it is so invasive for such a tiny little girl, was her "reactive" pressures dropping over time. I am so happy to announce that the pressures have DROPPED tremendously from where they were which will not cause the heart to over work and possibly fail due to the stress placed upon it. This will also not cause her Pulmonary Hypertension to be "Fixed" at a higher level, causing Kayleigh to go in to those hypertensive bouts like before. This is amazing news and ALL of our hopes and prayers have been answered!!! THANK YOU GOD!!!!! Beyond that, the doctor told us today that if Kayleigh's progress continues, then we would be looking at a week or two before she would be able to COME HOME. When Aimee and I heard that, we both about jumped right out of our skin. So, even though the doctor said the possibility of two weeks, we blocked that out and just heard ONE WEEK.
I can't even put in to words how excited I am to hear that this long stressful journey could be over in a week or so, and we could have our sweet Kayleigh home with us for good. No Wires, no alarms, no isolette, no nurses, no doctors, no surgeries, no feeding schedules, no cramped spaces, no "only two people at a time," no more driving back and forth, no more hospital food, no more calling for check ups, no more going to bed worried sick, no more...well...much less stressful days :), no more thinking that our girl may not make it through this hurdle, etc... There is so much to look forward to and the list can go on and on if I want it to. Let's just hope and pray over this next week that Kayleigh will continue to move in the right direction so she can finally come home with us. I normally ask for prayers for her to grow, or make it through a certain surgery, but this time we are praying for her to get ready to start a new journey and that begins with her coming home. I am so thankful for everyone who has prayed through the tough time and rejoiced in the great times, but we have one last hurdle and that is to convince the doctors she is ready to leave from their care and to come home. Beyond all the wonderful prayers that people have sent in, Aimee and I want to share one with you that is just unbelievable! This is by far the cutest thing we have ever heard in my life! This is a prayer from a 4 year old named Zoe: "Dear Jesus, please help the little baby girl drink a lot of milk so she can grow up big and strong and please help her Momma and Daddy find her a VERY big Dora band aid and if they can't find Dora I think she would like Diego too - ok? Amen."
Thank you so much Micah and Caleb for sporting your Kayleigh bracelets. I can't wait to get all the photos in so we can add them to the scrap book that Aimee is going to make. With all the people who bought bracelets, we have been able to purchase some really cool templates for each page of the scrap book. Kayleigh is going to love it!!! Thank you all for your support and let's make this a wonderful week!!! God Bless, The Freemans :)
11/12/2008 8:11:00 PM
11/12/08 - Goodbye NICU...Hello NPCN!!!!!!! Kayleigh is having another great day and they are actually about to move her over to Progressive Care (NPCN) tonight. She is currently on .2 liters of flow and at 100% which is what she can go home on. She is also finishing all her bottles like a champ and not having and saturation issues at all. All we have to do is keep this up and she will be home in no time. But....We need to keep an eye on her weight. Right now she weighs 1570 grams which is 3 lbs - 6.6 ounces. They have started to fortify her milk again which if taken by a bottle, she has no problems digesting like she did a while back. She is also on Lasix which could be a reason she has not been growing like she should lately. She did have a very invasive surgery, so weight loss is expected as they are trying to refrain from any fluid building up. They are weaning her off the Lasix slowly, so we should start to see a turn around in her weight very soon. I don't think that would hold her up from coming home, except in case she doesn't pass the car seat test for being too small. Someone emailed me today about some car seat requirements, which we are definitely taking in to consideration. Well, as we leave the NICU and never look back, there are a lot of memories that will always remain in our lives, but NONE of them will be missed.
You see, when we make our 24 minute drive everyday, Aimee and I will always remember those days where the drive was completely silent. The days where we weren't sure if it would be our final trip to see Kayleigh alive as she battled for her life. This is the drive that we would take over 200 times in the past 5 months. There were the days where traffic couldn't move fast enough to allow us to get there quicker. We jammed to Wade Joye's/Elevation Church (We Are Alive) CD and practically memorized every song on there. Most of the time, this drive was not too bad and will always bring back memories, but it is a drive that won't be missed.
As we show up to our parking deck, at the same spot where we would enter with hopes of good news and often leave with bad. You never knew what mood or feelings you will have when you leave, but as time went by, leaving Kayleigh would leave you feeling numb inside no matter what. Time after time we would enter this road often traveled by others, who probably felt just as numb as us and who would possibly be making their last exit, from/with the ones they love. It is a tunnel of joy or heartbreak as I call it. No matter what, this parking deck has it's stories. We loved parking in this deck as it was much more convenient than all the other parking decks, but it won't be missed.
Our favorite parking spot was the closest to the door, whether it was on level three, four or five. Most days we were lucky to get this spot, but we knew God was saving it for us as all the other spots were full. It didn't make sense, but we didn't question Him. It is amazing how the little things that would make a day better or less stressful. We love this spot, but it won't be missed.
Without question, this was the best cross walk in the hospital because it led to the Starbucks ;) We love Starbucks and are so glad they are practically in every shopping center around, because this one won't be missed.
After a month of learning the confusing hallways through the hospital, we found the elevators that led us right outside the entrance doors to the NICU. They could tell you about the days we impatiently traveled them when we couldn't wait to see Kayleigh after passing a certain milestone. Such as the first time Kayleigh was off the CPAP in two weeks where we could see her beautiful little face without any obstructions. These elevators were for the most part quicker than other elevators and they seemed to make it to the 7th floor without stopping. Even though these elevators made another thing about our days less stressful, they too won't be missed.
Entering the NICU for the first time to see Kayleigh will never leave our minds. With wide eyes and a fear of not knowing what we were stumbling in on, nurses would direct us where to go and what to do. Walking up to Kayleigh's isolette to see her tiny hands reaching out in space to latch on to the first thing that touched them was a moment we will never forget. Over time, this entrance would be fun as we would make faces in the camera before the front desk attendant would open the doors, laughing with others in the background about how silly we were. May we laugh a thousand times, but this front entrance to the NICU will never be missed.
As we washed our hands before every visit, to washing them at home, or anywhere else will bring back the memories of washing them in this sink. These sinks have permanently scarred us for life. "Lather up, sing your alphabets twice or for two minutes and get some alcohol on the way out" are the words you read on a note right in front of your face. Every time I hear pipes rattle, I will think of the sink on the left. A day wouldn't go by where I would forget to tie the back of Aimee's gown, but reminded quickly with a deep clearing of her throat. These sinks will never be missed.
The hallways are filled with memories of those who resided before us. A photograph of the parents and their preemie(s). Some were in the NICU for weeks and some for months, but as I see them everyday, I am reminded of the time I told the not so positive neonantologist that Kayleigh will be on that wall someday. Even though he doubted me while saying she needed to get here first, I knew Kayleigh would leave that NICU one day and never be forgotten...No matter if she was on that wall or not. These walls will never be forgotten and they will also...never be missed. This NICU was filled with many memories from the day Kayleigh was born, where she battled all of her ups and downs, and to this day as she leaves the NICU for her final time. We would not have wanted anyone to care for Kayleigh other than the doctors and nurses within these walls, and as this place will never be forgotten, it will never, EVER be missed. God Bless, The Freemans :)
11/13/2008 10:26:00 PM
11/13/08 - GRAB YOUR BUTTON!!!
One of Kayleigh's awesome friends had a button made for our blog and for ALL of yours! So please copy the html on the toolbar (Over to the right) and add it to your site! If anyone else has a button, let me know and I will add it to our blog. THANK YOU!!!
Kayleigh is having a blast over at NPCN. Look at that new bed!!!! No more isolette or warmers!!! She is holding her temperature very well too! She and one other little girl are hanging out in their own section, so that definitely makes things a lot more quiet than what we were dealing with over in the NICU. This will give Kayleigh much better sleep throughout the day as there are less bells chiming in her ear and less commotion going on from all the scrambling nurses. They have decided to wean her Lasix down to one dose a day instead of two now. I am glad to see they are weaning off the Lasix because Kayleigh's weight has been dwindling. Although, today she has had a good increase. She weighed in tonight at 3 pounds - 8.5 ounces, so it looks like she is getting some of that lost fluid back. Since Kayleigh's blood/lung pressures were high, they administer Viagra to help her pulmonary hypertension by keeping all the blood vessels in her lungs open. So, if her blood pressure is below a mean of 65, they won't give her any Viagra as her hypertension is far from acting up and there is no need for the meds. This actually happened once today and they were able to skip that dose, so all we can pray for now is that the pressures continue to drop, so they can stop giving her the Viagra all together. That would be so awesome as it will prove the open heart surgery was a complete success and we were able to close the VSD hole in time before the pressures became "Fixed." WOOO HOOO! THIS IS UNBELIEVABLE!!!! Kayleigh is definitely moving in the right direction, as God has certainly answered ALL our prayers with every single hurdle that has been placed in front of her. Kayleigh has certainly defied all the odds and proved time and again that our God is amazing! She is such a strong little girl and we are so blessed and proud that she is our daughter!