Max Walter Lautner : Make A Wish

As we prepare for Denver we are proud to announce our best bull name and meaning behind the name that we have ever had. Our powerful yellow tag 431 Monopoly x Ali bull raised by Curtis Weidel of Nebraska has been a favorite of many that have stopped by the barn since the beginning of September. The bull’s name will be “Make A Wish” in loving support of our 4 month old son as he prepares to come home from a 4 month stay at the Mercy Neo Natal Intensive Care Unit (NICU) in Des Moines, Iowa.

From the day Max was born our wish was that he got to come home fully healthy as soon as possible. As that goal comes closer we would like to share his story with our friends & family. We hope you enjoy the words and pictures that tell his story.

DECEMBER 21, 2017

T

DECEMBER 15, 2017

he following is a letter to our infant son Max Walter Lautner, we hope he enjoys reading it sometime in his teenage years to let him know the circumstances surrounding his first few months after being born in the Fall of 2017. We love him and hope he enjoys reading this as a healthy teenager.

You were born on September 2, 2017 at Mercy Medical Center in Des Moines, Iowa.

Mom was having a normal Fall Saturday at the barn with Janie. You weren’t due for another 3 weeks and Fall Saturdays were spent working on sale calves at the barn. Dad was in Eastern Iowa at Ben Danner’s looking thru his sale calves when the call came that he needed to get on the road back towards Des Moines quickly, “drive fast cause Max is on the way!”

Dad arrived at 8:00 pm and you were delivered only 45 minutes later by the night nurse Lauren as the doctor was just walking into the room. You were ready to be out and you were not going to wait! It was the quickest delivery of the three we had, mom did great with no pain medicine. You weighed in at 4 pounds 7 ounces and had a full head of bushy black hair.

You were born with a condition called esophageal atresia, and this meant that your upper esophagus ended in a pouch and wasn’t connected to your lower esophagus and stomach. With no way for food to pass from your mouth to your stomach, intravenous nutrition would be needed.

We were made aware of the condition over the summer leading up to your birth via ultrasound imaging. This particular condition is extremely rare so when your mom and dad googled info there wasn’t much that could help us prepare for what was to come in the Fall.

Your Dr. Tarun Kumar stated that we would feed you and let your two ends grow closer together and at some point have surgery to connect the two ends.

Only two days after you were born, you had surgery to insert a g-tube for direct feedings to your stomach to replace the intravenous nutrition you received initially. This would become your mom’s passion, She spent countless hours pumping breast milk that would enable you to receive antibodies that would protect your little body and help you fight off infection, allowing you to continue to fight and grow.

Daily walks down the hallway of the NICU were overwhelming. We worried constantly about the “what ifs” and the constant internal battle to ensure the best possible outcomes for you. During those walks down

SEPTEMBER 2, 2017

the 100 yard hallway to your room in #4005, were pictures of past NICU patients that had grown into healthy children. This was our wish, that your picture too would hang on the wall of the NICU. Most of September, October, November & December was spent with your mom spending her free time with you at the hospital. The nurses and staff came to know mom on a first name basis and she became extra close with many of them that watched after you when she had to go home. So many of these nurses would become allies with your mom, fighting for you, and always your biggest fan.

Matilyn even got to meet you for the first time in October and she said she was going to be the best big sister ever.

Halloween came and went, you were growing great.

With each pound you gained it felt like a victory to us.

In November Dr. Tarun Kumar informed us that your gap between two ends was 1.5 cm. The plan was for a few more weeks of growing and then possibly have surgery to connect the two ends.

Your sister Matilyn’s birthday party was November 3 at Chuck - E - Cheese. It was an enjoyable time with friends & family but mom and dad both felt a little bit empty that you weren’t able to attend. While you were in the hospital we had to do our best to balance a sense of normality with your sister and brother. They needed

SEPTEMBER 20, 2017

us, you needed us. We did our best to provide for all of you.

On November 19 Michael got to come to the hospital and meet you for the first time thru a glass window.

NICU rules say children under the age of 3 can’t enter the facility. Michael was excited even though there was a barrier between him and you.

In late November another x-ray was done and the gap unfortunately had widened to 2.5 cm between the two ends. This felt like a huge set back.

In that time period we were made aware of a procedure using magnets that pull the two ends together to connect the tissue. This procedure is useful when the two ends are less than 4 cm apart, the magnets polarity is affective. The drawback is there have only been 11 cases in the United States where this procedure had been used.

According to our doctors the FDA would need to sign off on the procedure because it is not a standard treatment. So the paperwork was filled out with slight resistance from a member of the Mercy hospital administration.

After a few days word was then received that the FDA had taken the magnet procedure off the market due to a labeling issue. Our doctors told us we would need to wait at least another month to see if your two esophagus ends came closer together. We felt this

MAX’S X-RAY ILLUSTRATING THE GAP BETWEEN HIS UPPER AND LOWER ESOPHAGUS

SEPTEMBER 6, 2017

labeling issue was a case of bureaucratic b.s. This felt like the second huge setback.

MERCY NICU SUCCESS STORIES IN HALLWAY

This the part of the story which we really want you to remember Max. On December 1 after a sleepless night and some consultation with mom’s friend Erin Houghton, they decided to send an email requesting emergency use of the magnet device directly to the FDA. Erin & Mom didn’t know if the email request would work but as the saying goes “hell hath no fury like a woman scorned” so a strongly worded and compassionate email was sent with no assurance it would ever be read.

Exactly 3 weeks from the day the FDA letter was sent on December 21, you had the magnet procedure completed by Dr. Tarun Kumar who was guided by Dr. Mario Zaritzky. Dr. Mario Zaritzky was the creator of the magnet device and he flew in from Chicago the morning of the procedure. There were still hurdles to cross but the magnets were in place. Tears of happiness were shed.

NICU MIRACLE BABY

To our amazement and delight a return email was received the very same hour! They detailed what we needed to do to “grease the wheels” and get the ball rolling in Max’s favor. OMG! 90 days into our NICU stay and we finally saw a small light at the end of the tunnel.

MATILYN MEETING MAX FOR THE FIRST TIME

NOVEMBER 2017

ERIN HOUGHTON & MICHELLE LAUTNER

PRE MAGNET SURGERY X-RAY

18 HOURS AFTER SURGERY MAGNETS CAME TOGETHER

Then... you will never guess what happened the following morning. An early morning call from nurse Mel informed us that the x-ray showed the two magnets were kissing! Tears of joy were shed again.

Just in time for Christmas Max was finally getting closer to the positive outcome we had hoped for.

It was now the hope of Dr. Mario Zaritzky and Dr. Tarun Kumar that the magnets touching thru pressure would kill the barrier tissue and then scar tissue would form around the two ends connecting them. Only time would tell if this process would be affective.

On January 3 Dr. Mario Zaritzky flew back into Des Moines for the removal surgery of the magnets. We once again were cautiously optimistic. After a 1 hour procedure we were informed the magnets had been removed and it appeared the magnets had been successful!! Michelle gave Dr. Mario Zaritzky & Dr. Tarun Kumar a very big hug on that day.

While you were still working hard to prepare to come home, we were so thankful for everyone in our family, the hospital and the FDA. In mid-January we proudly displayed “Make a Wish” in your honor at The National Western Stock show in Denver. “Make a Wish” will always have a special meaning for us. We feel that “Make a Wish” stands for the dedication and perseverance that a family takes on to make things happen. We found in the Fall of 2017 this is true not only in the show barn, but within our own lives. We often get caught up in the daily work and forget how fragile life truly is. Max, thank you for reminding us that what we do should be done in love, to stay tenacious and not be scared to make a wish.

MAX WITH SANTA CHRISTMAS 2017

-Love, Mom & Dad

FROM DECEMBER 21 SURGERY DAY PICTURED WITH NURSES & DR. MARIO ZARITZKY & DR. TARUN KUMAR

NAMED IN LOVING SUPPORT OF OUR SON MAX WALTER LAUTNER