Extra special babies, extra special support The ADAPT committee members and parents have chosen to share their stories of hope. If you would like to share you story or experience of being part of the ADAPT family then email us lisa@prembabies.co.uk
Contents page
Page 1 Alex’s Story Page 7 Evie’s Story Page 9
Page 16
Daniel’s Story
Jessica’s Story
Page 13
Page 21
Shaan’s Story
Gaby’s Story
Page 15
Page 27
Freyer’s Story
Zeke’s Story Page 29 Roman’s Story Page 31 Annabelle’s Story Page 33 Leo’s Story
Alex's Story Alex was born on 1st November 1997 Eleven•weeks early weighing 1lb 6oz/620g
Three weeks prior to Alex’s arrival we discovered, via a routine scan, that his arms and legs weren't growing properly. •A specialist told us our baby had Achondroplasia, which is a type of dwarfism. However, thankfully, a test confirmed that Alex didn’t have this condition at all; we were so relieved and I began to enjoy my pregnancy...
At 29 weeks, I woke up in the middle of the night, to go to the toilet and found my waters had broken. We all dressed and went to the hospital. The midwife wasn’t sure and asked if I had wet myself. She examined me, my waters had indeed broken and it looked as if all the amniotic fluid had gone.
Alex’s heartbeat was monitored and we were told that I would have to be transferred to Nottingham Hospital, since the neonatal unit at Leicester General Hospital was full. However, Alex showed signs of distress and a decision was made to deliver him immediately by emergency caesarean.
Because I had lost all the water surrounding my baby and they didn’t know how he would be, the doctors felt it would be better for me to have a general anaesthetic and therefore not be awake to see him being delivered. I had a classic C section (from the belly button down) since they wanted to be able to lift him out rather than tug and pull him out in the usual way.
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Alex's Story Alex was born on 1st November 1997 Eleven•weeks early weighing 1lb 6oz/620g
My husband was by my bedside when I awoke, he had been to see Alex and had been told that he would probably not survive as he was too small. I desperately tried to wake myself up properly so that they would let me see him. I was taken down to the neonatal unit and wheeled up to an incubator where my tiny son lay. To be honest I felt very numb, I was in shock I suppose. I remember being told things about Alex by the neonatal staff but I don't remember what they said.
This was the beginning of a•five month roller coaster ride, up and down, some good days, some bad with little progress. Alex was in Intensive Care for nine weeks, then he was transferred to High Dependency and then back to Intensive Care when he stopped breathing because of a hernia.
He was transferred to Leicester Royal Infirmary•to have an operation to repair hernias on both sides and then back to Leicester General to recover. We saw so many•babies come and go; which was hard as there appeared to be no light at the end of our tunnel.
Alex was oxygen dependent for most of the time he was in hospital and had to have two courses Dexamethasone, a steroid which improves the lungs, making it easier to breathe. Finally he came off oxygen and learnt to feed without the naso gastric tube.
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Alex's Story Alex was born on 1st November 1997 Eleven•weeks early weighing 1lb 6oz/620g
Alex was discharged on 24th March 1998, three days before his sister's 6th birthday party. What a party we had. However, this was short-lived; he wasn't feeding properly and not taking enough milk for his weight. Back in hospital we were told Alex would have to be naso gastric fed again. I learnt how to site the tube and everything else I had to know about having an NG fed baby.
No one could tell us how long it would take for Alex to learn to feed himself but eventually at 2 years and•2 months old he came off the feeding tube. His sister was a huge influence on getting him to eat. One day she was sat in front of the television with a packet of crisps, he asked for one, sucked it soggy, put it back in the packet and asked for another one - we were so pleased.
Life is not that easy for Alex, we still have hospital appointments and checkups but all the time Alex has a smile on his face and never complains or moans. Alex starts secondary school in September, another milestone for him.
We are so grateful to all the wonderful nurses, doctors, specialists and consultants who have helped us and are still helping us. Nothing has been too much trouble for anyone.
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Photos of Alex
Evie’s Story Born at 25 weeks weighing 2lb 5oz
My pregnancy had been straightforward but at 25 weeks, my waters broke while I was out shopping. My friend drove me to hospital and I phoned my husband, Oliver, and told him to meet us there. My contractions were soon coming every few minutes, I realised•our baby was about to arrive. •After just two pushes, Evie was born, weighing 2lb 5oz. She was put on a ventilator and it was twenty minutes before•I saw her. Covered in bubble wrap, with bright red skin and one eyelid still fused shut, she was so tiny. Oliver and I stared at her in awe. Doctors explained that she was very premature and at risk of serious complications but they would do everything possible to help her. At five days old Evie had an operation to close a valve in her heart, and just before Christmas she came off the ventilator. But on Christmas morning, when we arrived at the hospital, we were told she had an infection.•It was touch and go, almost every inch of Evie’s tiny body was covered in wires and tubes and she was on a ventilator again - we were devastated. Towards the end of January Evie was moved to the high-dependency unit, where she gradually grew stronger. On the 16th March she finally came home. Since then she has gone from strength to strength and show no signs of long term problems. Christmas will always be a special time for us.
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Pictures of Evie
Daniel’s Story Born at 34 weeks
My problems began at a routine antenatal check up when I was 31 weeks pregnant with our second child. My legs, hands and face had begun to swell and my blood pressure was raised. A week later the symptoms were worse and I had protein in my urine, all of which are symptoms of pre-eclampsia, so I went into hospital for observation.
At 34 weeks my consultant admitted me into hospital again. Despite having been told at 10.30am to 'pack a bag and come straight back', not realising the danger, I didn't actually return for 7 hours! As it turned out being in hospital saved my life and that of my unborn baby...
During the night I started to experience pains across the top of my bump, under my ribs; I also started to vomit. Having been given pethadene I went to sleep but by the next morning my blood had started to change. A senior midwife on duty spotted the symptoms of HELLP syndrome, a complication of pre-eclampsia and called a consultant.
My husband Jon had just gone home and I’d eaten lunch when the consultant arrived and said they needed to prepare me for theatre. Jon was called back and I was transferred to a side room while they monitored the situation and waited for my lunch to digest. I actually felt well which was strange given the fact that my liver was actually destroying my white blood platelets and I was losing the ability to clot.
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Daniel’s Story Born at 34 weeks
By early evening my condition had begun to deteriorate and platelets were ordered from Queen Elizabeth Hospital in Birmingham. My blood was being monitored by the hour and the number of white blood platelets had reduced dramatically; much faster than had been expected. A senior anaesthetist arrived as did two senior consultants.
A consultant explained that the only way to stop HELLP syndrome was to deliver the baby but they needed my platelet count to be at least 80,000/mm3 - it was 53,000/mm3 and going down fast. It was explained that a general anaesthetic could cause a stroke due to my high blood pressure and a spinal block could bleed and cause paralysis. Neither option sounded great! What I didn’t realise at the time was that HELLP syndrome can kill and I was dangerously close. My husband was all too aware how serious the situation had become and struggled to remain composed.
The platelets arrived and by the time we reached theatre my platelet count had reached 73,000/mm3, still lower than required but by then both bags of platelets had been used. A spinal block was given and Daniel arrived at 9.09pm via a c section, weighing 5lb 4oz. I saw him briefly before he was rushed to special care. I later discovered he had stopped breathing.
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Daniel’s Story Born at 34 weeks
Initially Daniel required oxygen and one to one neonatal care. My husband went to see him and was overwhelmed by the situation. I had been taken to HDU and for him•the reality of what had happened was just starting to sink in. Daniel was being kept warm in a hot cot and appeared to be swamped by tubes. Attached to a magnesium drip, unable to eat or drink,•it was 24hrs before I saw Daniel. Although groggy I was thrilled when they wheeled me to special care. He was so tiny and his chest seemed to struggle with breathing but he was perfect.
He came off oxygen and his breathing was then supported by CPAP. Within a couple of days•Daniel was well enough to be cared for in the nursery, although he had problems feeding and had a gastric tube. I came home after twelve days and we visited Daniel every day in Special Care until he came home ten days later. As the creator of Teddy & Me it seems somewhat ironic that I should experience the birth of a premature baby. I realise now that it is one of the most frightening and stressful experiences ever. For a mum leaving hospital without your baby is one of the hardest things you can do. Daniel will require an operation to help his feeding in the next few months and we are all too aware of how tiny and fragile he is to go through an operation of any kind. Like everyone else in our situation we are taking things one day at a time and are grateful he is here.
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Pictures of Daniel
Shaan’s Story Weight at birth 4lb 4oz
Shaan was due on January 25th 2010 and arrived on December 17th 2009 she had a pre-term weight of 4 pounds 4 ounces, which was 1.92 kilos. Other than a low birth weight Shaan was a healthy baby. On day 3 of her life Shaan developed a high level of jaundice, and she was admitted into the high dependency unit to undergo an intense treatment of phototherapy. Although this was not life threatening, the image of seeing your tiny newborn baby wired up to machines sends any natural parent’s feelings and emotions into turmoil. The nice thing was we were still able to take her out for a cuddle, consciously being aware that every minute she was out of the incubator was one less minute of treatment she would undergo. Shaan was fed solely on expressed breast milk with an NG tube via her nose. Her mother & father had focused and devoted all their time, efforts and energy into Shaan’s recovery and wellbeing. Although Shaan’s mother had been discharged from hospital, it was too painful to leave Shaan and go home, so she was given a room to stay in at the hospital and was able to care for Shaan. Shaan’s exhausted Father juggled between the hospital, work, shopping and building a beautiful bespoke nursery for her homecoming.
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Shaan’s Story Weight at birth 4lb 4oz
Shaan’s billyrubin levels dropped as she responded well to the phototherapy and as she became less dependent, she was moved from the Royal to the General hospital. Shaan had established her feeding, she was gaining weight and the colour was coming back to her skin. Shaan spent a total of two weeks in hospital; and she had moved beds seven times. No matter where Shaan was and who was caring for her, the attention, commitment, and support that Shaan and her parents received from all the staff at the neonatal unit really was priceless, true it’s not a rumour they really do save lives............ keep focused be positive and think of a fun filled future, we did and Shaan came home
Freyer’s Story Weight at birth 3lb 6oz
I found out Frayer had an exomphalos (bowel growing on the outside) at my 12 week scan. I went through all the emotions (cried, anger,’ why me?’ I hated myself and I wanted for someone to tell me it was just a dream). After learning to deal with the fact that Frayer would be different untill she had the operation to put all her bowel in, I went for my 16 week scan. The exomphalos had not just affected the bowel, it now had the liver and was classed as major and yet again I went through all the emotions while being single with three other girls to think about. From 23 weeks I had to have scans every two weeks and had two cardiac scans. My pregnancy went very quickly and at 36+2 weeks I was told I needed a caesarean section as the bowel had grown and for the third time I went through the emotions. That Monday afternoon Frayer was born weighing 1.64kgs and soon after she needed an operation to put her liver back in. Within 5 days she needed another operation as the bag had split. Three days after that the doctors starting pushing the bowel slowly back in. Nine days after they started pushing the bowel back in she needed yet another operation to push some more bowel back in and to change the bag for a smaller one. After months in hospital, with her exomphalos repaired, Frayer is finally home with her Mummy and big sisters.
Jessica’s Story Born at 29 weeks Weight at birth 2lb 10oz
Jessica was born on Monday 21st February 2005 at 00.10am by emergency c section. She was 29 weeks gestation and weighed 2lb 10 ounces. She measured 12 and half inches from head to toe. She was ventilated at birth in air, and was weaned on to CPAP before finally breathing for herself by the time she was 7 days old. Her first feed of milk was just 0.5 of 1ml, such a tiny amount, it didn't seem enough.
Even though she was so small we remember so well her chubby little legs and little double chin. She had the most beautiful mop of black hair. The shock of seeing her in NICU with wires and tubes and monitors didn't really sink in for a while. The realisation of how fragile her life was, at times we found quite frightening. And genuinely you never think it could happen to you. The worry that she may go blind, have a heart condition, lung problems, cerebral palsy, all these possible hurdles for her to overcome, we would have moments of sheer elations that she was here, alive and well and then moments of deepest concern that she wouldn't make it. I remember the strangest of feelings, as we walked down the long corridor and out of the hospital to go home, but with no baby. It felt so peculiar to have left her behind.
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Jessica’s Story Born at 29 weeks Weight at birth 2lb 10oz
Every day for 8 weeks, we would arrive in the morning and sit for hours on end, feeding, bathing, changing, cuddling and for most of the time, just watching her. Like all prem babies she spent most of her time sleeping and we tried to make the most of the little time she was awake. Hundreds and hundreds of photos taken on different days at different times but all with this little round ball of baby that could fit into her Daddy's hand. I used to love Kangaroo care, when I would get to feel her soft delicate skin on mine and just used to enjoy having her so close and all to myself, but always with one eye on the monitor above her bed. Our eyes would just be drawn to it and you couldn't stop yourself from staring at it, and I remember the shock of walking into the room one day and looking up to see the monitor had been turned off, I still couldn't stop looking at it for reassurance she was okay. It made taking the baby monitor out of her room at home, so very difficult and Jessica was almost 3 years old before I could turn it off and not rely on it to let me know she was still breathing at night.
But, Jessica thrived and she grew and she became quite a greedy little thing! It was fantastic to watch her change from a tube fed sleepy baby to a guzzling bottle fed baby. Being able to bottle feed Jessica made us feel like proper parents, like we were caring for her properly. I sometimes worried that she wouldn't realise from all the faces of people that looked after her 24 hours a day, that I was her momma and that she belonged to us.
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Jessica’s Story Born at 29 weeks Weight at birth 2lb 10oz
When the day came to room in at the hospital, god we were so excited. It was a mass frenzy at home to get her room just perfect, family and friends got excited. But that first night was scary. In a room, monitors, just the 2 of us, I don't think I slept much. Good job really as she had to have her medication during the night anyway! I think amongst all the excitement we had about the fact that we were finally taking Jessica home, something we know some parents never got to do, there was some anticipation and fear of having to give Jessica her medication. We made charts to record everything we did. Six different medications to administer, some once a day, some twice a day, some four times a day, some with feeds, some in feeds. We would check and double check the dosage, scared that we'd get it wrong. Days out would be a logistical nightmare. Bags for food, bags for numerous changes of clothes because Jessica had reflux, bags for medicines, sometimes it took longer to get ready, than the trip out!
We would have appointments somewhere every week. One week it would be health visitor, the next week an eye test, the next week a hospital check-up, the next week back to the health visitor.
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Jessica’s Story Born at 29 weeks Weight at birth 2lb 10oz That first year was the hardest and we often now look back and wonder where we found the strength from, but then Jessica needed us, so there was no choice. I would panic when she became ill, fearing that her prematurity would hinder her recovery, if it had compromised her immune system. Three times before her first birthday she was hospitalised with Bronciolitis, the doctors said she was just unlucky to have it so many times. And then the greatest fear of all, Jessica was aged just 20 months when we made a 999 emergency dash to the hospital with Jessica. Pnuemacoccal Meningitis. The doctors said another 30 minutes delay in bringing her in and she would not have made it. Watching her battling for life again just didn't seem fair. Her life yet again hung in the balance and we could do nothing but stand and watch others look after her again. For Jessica to have come so far to lose her just wasn't comprehendible. I suppose once again we dug deep for that strength because Jessica needed us. •Almost 7 years later and we have a tall, beautiful daughter, who chats for England, who constantly asks questions about everything and eats like she's never been fed! And we wouldn't have it any other way. We don't really care how naughty she might be on occasions, how noisy she can play, her smile lights up our world and there were moments that we thought we'd never get here. We are in awe of Jessica and the strength she has. She makes us very proud and we are eternally grateful to everyone that helped Jessica and us along the way and we are especially grateful to have Jessica.
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Jessica’s Photos
Gaby’s Story Born at 31 weeks Weight at birth 3lb 12oz
I fell pregnant the first time in late 2005. I had my first scan and was told that all was well. We were over the moon as we'd been trying for a while and couldn't wait to start our family. At Easter (2006) I was due to travel to Lourdes in France with a group of young disabled adults as a helper. I was advised that, as long as I didn't do any heavy lifting, that there was no problem in still going. I had experienced some pain during the pregnancy so far, but after repeated visits to the doctor, I was told that it was most likely just 'pulling pains' and that these were experienced by all women, not to worry and there was no need for an additional scan.
I went to Lourdes with the group and
everything•appeared fine - I was almost 20 weeks. On the Thursday of that week the group attended Mass, along with several thousand others travelling with the same charity. During Mass I began to feel ill and later on collapsed. Due to the nature of the charity and the Pilgrimage I was surrounded by doctors and nurses within seconds and was rushed to hospital by one of the ambulances already parked outside. It turns out that my baby had been growing, not inside my uterus, by in my abdominal cavity. Early on in the pregnancy part of the uterus wall had ruptured and the baby had moved into my abdominal cavity, but was still attached to the placenta via the umbilical cord (a bit like a balloon on a string). This had not been identified in my early scan.•When I had collapsed it was because the amniotic sac had broken away from the umbilical cord and I was bleeding internally. On arrival at the hospital I was rushed into theatre and they performed an emergency
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Gaby’s Story Born at 31 weeks Weight at birth 3lb 12oz caesarean. I woke up in Intensive Care where I remained for a week. I was later told by the surgeon that he had given me a 20% chance of survival as I had lost so much blood and my organs had started to fail. I was also told that the baby, a little girl who we named Sophie, at 20 weeks,•had been too premature to attempt to help her survive. Due to legal procedures in France, I was prevented from bringing her back to England, although they allowed me to see her before I had to leave.
After another•week in the hospital, I was first moved to a surgical ward, but then when it closed for the weekend, I was moved to the maternity ward. Thankfully, my insurance covered a nurse who came out from England to accompany me home. After one night there, she arrived and immediately discharged me into her care at a hotel for 2 more nights until I was allowed to fly home with the extensive stitches running the length of my abdomen.
I returned home and my physical recovery took about 4 months.•Apparently I was a very interesting case. I was born with a 'bi-cornuate uterus', which means that•it is 'heart-shaped' and•has 2 separate sections with a muscle wall down the centre.
My emotional recovery took much longer. I returned to work in September, but all I could think about was Sophie and the need to have my baby. I became depressed and began attending counselling at a bereavement centre who were truly amazing. I was desperate to fall pregnant.
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Gaby’s Story Born at 31 weeks Weight at birth 3lb 12oz After visiting several consultants, I was told that it should be possible, but they would keep a very close eye on me. At the very end of October 2006, I discovered I was pregnant again. I was still attending counselling, but with their help, I began to see that perhaps it might be ok and began looking to the future. This time, the hospital were outstanding and I was scanned by a consultant every 2 weeks. It was confirmed that the baby was in the right place and growing well, although I was told it was likely that•the baby would be delivered prematurely. At 26 weeks, I went for a scan and my consultant told me that my cervix had shortened considerably and that he wanted to put a stitch in to help prevent the baby being born so early. It was a•Friday and I was booked in for the Monday morning, but was told to rest as much as possible and to go straight to the hospital should I go into labour over the weekend - I did not move off the sofa for 2 days!
Everything was fine for a few more weeks until a Monday night, when I was 31 weeks pregnant. I began experiencing pains and soon realised I was in labour. I went to the hospital who had no room for us, so was ambulanced over to another. I was put on a drip to try and delay the labour, but by Wednesday morning I was still experiencing contractions. I had also•been given steroids to try and strengthen the baby's lungs.•The contractions•were getting more intense, so the doctor's decided to cut out the 'stitch'. I became 8cm dilated in a matter of seconds and was rushed down the corridor to a delivery suite.
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Gaby’s Story Born at 31 weeks Weight at birth 3lb 12oz I was given a spinal block.•The baby was breech and the plan had always been to deliver by caesarean, but there was no time. They had cut out the stitch at 9.45am and•she had been delivered by 10.30am! •The baby was rushed out from the delivery suite and we really didn't have a clue what was happening, but after a few minutes a doctor came in and told us that•'they had got her going again after 4 minutes'. She was intubated, in an incubator and being taken•to the Intensive Care unit. She weighed 3lb 12oz - a good weight for 31 weeks!•I was taken back to the room•and, after about half an hour, my family were taken upstairs to meet her. I couldn't go as the spinal block was still in effect and the ward was too small to wheel a bed into. I was brought a polaroid photograph of my little girl's face. She was covered with tubes and wires, but she was alive! Later on, when I could sit in a wheelchair, I was taken to visit my baby in Intensive Care. She stayed there for 5 days, before being moved into HDU for another week. We then were moved to another hospital for a further 4 weeks. We named our baby Gabrielle (Gaby) Faith. She had a few 'ups and downs' during her stay in the hospital - her breathing, SATs and heart rate•would fluctuate (it was found that she had 2 holes in heart)•and•she was fed by an NG tube.
I became quite reliant on having the doctors and nurses around. When they told me that Gaby could come home I was actually distraught - I was so scared of having her at home with me without
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Gaby’s Story Born at 31 weeks Weight at birth 3lb 12oz
a medical team in the background. For a long time, I barely left the house except for short walks or visits and I was completely paranoid about germs and infections. I knew that I had to start 'getting out' more and so started to attend a local mums and tots group. It was ok at first, but then week after week I was having to ‘tell my story'. It was happening whenever•we went out as well - people would look at my tiny baby and ask all sorts of questions. Once I nearly had an argument with a lady in Asda who had asked how old she was. When I replied 6 months, she argued that 'no, she's 6 weeks' - she actually got a bit nasty about it! I was desperate to find some people who had been through something similar and where we'd 'fit in'. I remembered talking to Lindsay from ADAPT on the unit and had received some information about the charity. I began attending the Syston In-B-Tweenies group and straight away knew we were in the right place. Although everyone's experiences had been very different, we had the chance to talk about it without feeling like you were 'the special case'. We could talk about the experiences at the hospital, how we felt about things and our worries for the future. I think the best thing of all though, was that there were•other babies there of Gaby's age who were the same size and stage of development•- it was great! •
ADAPT were truly a lifeline to me after Gaby was born and, even
though she's now at school, continue to be a great source of care and support. I have met some amazing, life-long friends through ADAPT and could never thank them enough for all they do.
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Photo’s of Gaby
Zeke’s Story Born at 31 weeks Weight at birth 3lb 10oz
On the 8th of October 2010, we were sat next to a machine monitoring our son’s movements. They had decreased, and with the lack of fluid, the doctors were concerned. I was 31+4 weeks pregnant and our son had Gastroschisis. This is where the stomach wall does not form properly and as such, some of the internal organs are on the outside of the body. We knew this from the 12 week scan, and knew that the safest option was to have a caesarean section. When the movements were reduced, we had no idea how soon we would be meeting our son! We had been in hospital since I was 26 weeks and were expecting our son to arrive at 28 weeks, but this changed things. He had been given less than a 50% chance of survival, but we trusted the consultant and knew he would make the best decision. The consultant decided that the best option was to have the caesarean section that day so we only had a few hours to prepare ourselves. Zeke was born at 22:24, and weighed 3Ibs 10oz. He came out screaming blue murder, even though we had been told that it was normal for babies to make no noise whatsoever. He was taken away and immediately put into an incubator before being wheeled back in. He had been working too hard and was getting distressed so was put onto a ventilator. We had many days of watching and waiting. He was getting better and stronger and eventually we able to gradually give him milk. We started off at one ounce and moved it up slowly. Zeke was doing really well and was getting better until he contracted necrotising entercolitis (NEC) and septicemia.
Zeke’s Story Born at 31 weeks Weight at birth 3lb 10oz The doctors decided that Zeke was to be ‘Nil by mouth’, meaning that all the hard work we had done to build up his feeds was undone. It felt like a massive set back and was devastating for everyone. During this time Zeke had to be resuscitated and needed a blood transfusion, both of which were very traumatic. We had a lot of support from the nurses and staff, and also from ADAPT who helped in many different ways and provided a great support network for us both. Eventually, over what seemed like a lifetime, Zeke built his feeds back up and recovered despite everything that was put up against him. It was a difficult time for the whole family, but Zeke is now a happy and healthy little boy who is growing up fast. He is learning lots of things and is very chatty too. While he was in hospital we could never have imagined that he would be like he is now, but through the hard work of the Leicester Royal Infirmary and of Adapt we have an amazing little boy. We often comment on how what he went through has made him even more special and is all part of him growing up. We are both very proud parents.
Roman’s Story Born at 27 weeks Weight at birth 2.2lb
They have all caught up and love playing together. There's not much that•a full term•11 month old can do that our boys can't and we are so proud of how they have grown! We couldn't have done it without the hospitals help and adapt getting us together and their advice. The 2nd photo is of the boys aged nearly 10 months.
Roman’s Story Born at 27 weeks Weight at birth 2.2lb I had Roman at 27+2 weeks gestation on 19th February 2011•completely by surprise.•I arrived at the LRI following what I thought was a miscarriage•only to then be told I was 9cm dilated and would be having•my baby•over the next couple of hours!•It was the most traumatic time of my life! He weighed 1.03kg. After giving birth, there was no space in NICU so Roman was transferred to Coventry where•he was ventilated for 1 day and•on CPAP for 4 days. After 10 days, he was transferred back to the LRI NICU, the 1st photo is when he was 15 days old and was taken with his 1st clothing on as the humidity was turned off in his incubator that day. The Adapt team at LRI were fantastic and very helpful, they bought other mums together and made the family room a nice place to get away from the buzzers and stressful feeling•in NICU for half an hour! Lesley was particularly lovely and it was nice to know that she was there if ever I needed to chat.•I met another mum, Marie, in the family room•who also had a son, Oliver, born 3 days before Roman at exactly the same gestation and we still see each other every week, along with another mum, Anna, who’s son, Edward was born 20th February at 28weeks at the LRI! They are all our 1st babies. We spent between 9•- 11 weeks in hospital with the boys•before they could come home and at times, it was petrifying having to watch•our babies suffering with various things:•painful treatments, brain haemorrhage, having a collapsed lung, blood transfusions and severe breathing difficulties but nearly a year down the line and all 3 boys are doing absolutely brilliantly.
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Annabelle’s Story Born at 30 weeks Weight at birth 3lb I had a difficult pregnancy and was treated throughout for a blood condition which is often the cause of miscarriage. However I was scanned every two weeks and was looked after amazingly well which reassured me that things were going well. I was reassured so much that went I went in for yet another routine 30 week scan on Thursday 16th December 2010, I never could have imagined that I would be meeting my daughter the next day. The scan showed that there was a problem with the baby’s growth and the baby’s lack of movement was a big concern to the doctors. I was admitted and given steroids to develop the baby’s lungs, but even then I was totally unprepared for what followed. The next morning I was scanned again and the doctors were very concerned, so much so that they decided to perform an emergency caesarean section and Annabelle was born that day weighing 3lb, but quickly dropped to just 2lb 2oz. Everything happened so quickly and I had absolutely no idea what the next few weeks would be like following the birth of a premature baby, as it’s just not something you think about. Annabelle was quickly stabilised, put on a ventilator and moved to the neonatal intensive care unit. My husband and I were able to see her a few hours later and it was biggest shock of my life. She was in an incubator in a side room with a doctor and a nurse working on her. She was so tiny and covered in tubes; she hardly seemed like a baby at all. Annabelle (Belle) was moved to the HDU ward the next day and my husband, our families and I began the long journey of watching your tiny baby in an incubator day after day, through the ups and the downs and in such a surreal setting.
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Annabelle’s Story Born at 30 weeks Weight at birth 3lb
One very emotionally difficult time during our journey was Christmas day. I suddenly realised my new born baby had no gifts for her first Christmas as we had been at the hospital 24/7 and obviously had not been expecting her until the end of February the following year. Yet, I was over the moon to walk into the ward on Christmas day and see Annabelle had a parcel all wrapped up by her incubator containing some wonderful gifts, a toy, a cardigan…all things I would have bought for her myself had I been able. I later found out that these gifts had been given by the charity ADAPT, and will never forget how important this simple gesture was to me on Annabelle’s first proper Christmas. Annabelle went from strength to strength and became a very well baby but struggled to grow and put on weight. She finally came home with us at the end of January weighing a tiny 3lb 9oz, but you would never believe that when you see her now!!!
Annabelle and I now attend ADAPT run groups called ‘Inbetweenies’ where we have received lots of support and gained much needed knowledge about the first years of a premature baby’s life. Although Annabelle’s birth and following months have been the most frightening and stressful of our lives, ADAPT have had such an impact that we can look back and smile.
Leo's Story Born at 28 weeks Weighing 2lb 11.5oz
After a miscarriage at 12 weeks in 2009, we were ecstatic but anxious when we discovered I was pregnant again in January 2010. Just a few days later we got the news we didn't want - we'd lost our baby. I knew something wasn't right and after 2 weeks it was confirmed that our miracle baby was hanging on! I had subchorionic hematomas, one of which was bigger than my baby but I tried to stay positive. The next few weeks were hard, heavy bleeds, cramps, hospital visits and lots of anti D injections. I got signed off work at 17 weeks pregnant after a heavy bleed that saw me in hospital once again. With lots of rest things seemed to be going well and at 25 weeks we went on holiday. 300 miles away from home, I woke up in the middle of the night and realised my waters had broken. We rushed to the nearest hospital. I really thought it was time to say goodbye, something I'd been preparing myself for the whole pregnancy. The baby was monitored and I was given two doses of steroids (to help the baby’s lungs) before I was stable and allowed to travel "home" to our local hospital, Leicester Royal Infirmary. Scans revealed that he was about 1lb 13oz. Staying in hospital was hard, especially as I missed my 3 year old so much. All was calm until 28 weeks when I was sent up to the delivery ward with contractions and heavy bleeding. Everything settled down and I was allowed back down to the ward. The next day, I was putting my stockings on after a shower when a sharp pain shot up my leg and into my tummy! The pains got more intense.
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Leo's Story Born at 28 weeks Weighing 2lb 11.5oz
I was taken back to the delivery ward. After 10 minutes the midwife examined me, I remember her saying that baby's head was there and immediately got the rest of the team in, before I knew it I was being told to push, and within 10 minutes he was out! As I looked down, he was quickly taken over to the warmer so they could work on him. All I remember is him looking grey. Baby was in the room for half an hour before they moved him up to the neonatal unit. The whole time, surrounded by medical staff, I had no idea what was going on. Eventually he was loaded into an incubator and I got a quick glimpse as they left the room. A few minutes later Donovan arrived looking stunned! After what seemed like forever, and a LOT of pestering we were allowed up to see him. Leo weighed 2lb 11.5oz. It was all very overwhelming! I remember his skin looking like jelly, all red and you could clearly see his veins, ribs, etc. His ears were all floppy and folded over and his nails were barely there. The next few days are a bit of a blur. Leo did really well and got out of intensive care on day 4, the day after I had my first cuddle!! But Leo had a funny turn on day 5 and I had to have tests for a suspected blood clot! It was on this day that I opened Leo's drawer as usual and found a pack inside containing a teddy, teeny nappies and other goodies. The nurse told me this was from ADAPT. When I went back to the ward, I spread it all out on my bed and sat looking through it all. There was a small comforter to wear in my top before giving it to Leo so that he could smell my scent. It was an emotional day already but by this point it was happy tears as this was the first time I'd really felt I could connect with my baby! On day 9, feeds were stopped as Leo had become unwell. A few days later, I was told that Leo would need surgery to repair a hernia that the Dr had found. All I heard was the word "surgery" and went into panic mode, thankfully Lesley (ADAPTs family support co-ordinator) came in soon after and we had a good chat about it, I felt so much better and was able to get it into perspective.
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Leo's Story Born at 28 weeks Weighing 2lb 11.5oz
It was plain sailing for a few weeks. Leo moved into a cot and was doing well with his feeds. He got transferred to Leicester General Hospital at a month old. After being there for a week I got a 4am phonecall, he was being rushed back to intensive care as they thought his hernia had become trapped. His feeds were stopped and he was put back into an incubator, this felt like a HUGE step back. They managed to pop his hernia back so he didn't need surgery straight away, but decided it was best to have it sorted before he was discharged home. At 7 weeks old, Leo was 4lb so the surgeon decided it was time to operate. He also came off his monitors! At this point he was still desaturating during feeds but Leo's nurse decided it was time for me to watch Leo rather than rely on the monitors. Scary! I arrived bright and early on the day of surgery and was devastated to see Leo already loaded into his transport incubator, I was hoping to give him a cuddle first. Leaving him with the surgeon was awful but thankfully within half an hour I had a call to say the procedure was a success. Just a day later, it was time to room in with Mummy, and at 7.5 weeks old and 4lb 15oz, Leo came home, and big brother Tyler was very pleased!! After a couple of months of being at home, I ventured out to ‘In B Tweenies’. Everyone was really lovely and welcoming. It was amazing to meet older prems and see how well they were doing - it gave me hope! Leo is now a toddler and doing really well! He started walking at 18 months and there's no stopping him now. We've been going to In B Tweenies, coffee mornings and other ADAPT events for over a year and it's helped so much - we've met some amazing people who are a big part of our lives, Lesley and Lindsay have been a great support in so many ways, I don't know where we'd be without them!!
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Leo's Story Born at 28 weeks Weighing 2lb 11.5oz