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Challenge: NICU Parenting

Cutler Hills 212 Day Journey through the NICU

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My name is Jessie Hill it is my honor to share our journey with the most incredible preemie little boy that we have ever met. My husband Cody and I tried to get pregnant for three years exhausting all fertility treatments up to IVF. We were told we fell into the “gray” area of unexplained infertility. At that point in time we decided to opt out of IVF treatments and move on to the next chapter in our lives together. As several months passed by you can imagine my surprise when I realized I could be pregnant. The doctor confirmed to our amazement that yes, we were going to have a baby. Little did we realize that our miracle man was going to change the course of our lives forever in the most amazing way. My pregnancy was cruising along as I was getting more ultrasounds than the typical woman due to my age. Who knew being in your late 30’s with “unexplained infertility’ and now pregnant would get me so much attention. I went in for a regularly scheduled ultrasound around 23 weeks. We were told that Cutler had not grown from the last ultrasound to this ultrasound. This information put us on the fast track to see a Fetal Medicine Specialist in the same week. Arriving at the office of our fetal medicine specialist we were filled with worry, anxiety and the fear of the unknown. After further testing that morning our specialist sat down with us to deliver what felt like earth shattering news. Our son was diagnosed with sever IUGR (Intrauterine Growth Restriction), he had abnormal fluid levels in his brain and the extent of damage due to the fluid would not be known until after birth, he had a bi-lateral cleft lip, they could not confirm the cleft palate as they could not get a good picture at the time and they could not confirm that all parts of his brain were present due to his small size. They were looking for the corpus collosum in the brain and could not see its presence at the time of this ultrasound. We were then told that for our son to have a fighting chance at survival he needed to weigh at least 500 grams which he did not weigh at that time. On top of hearing the news of our sons condition we were told that my body was not cooperating, and my cervix was already thinning, the odds were not in my favor that we would make it anywhere close to full term. The doctors weighed out the risk vs. reward of treating my thinning cervix and decided at that time we would treat with medicine as the risk of bleeding and pre-term labor with other procedures were too high. Cody and I landed at ground zero that day attempting to plan for the biggest emergency of our lives. We knew that our son had less than a 20% survival rate and that if we were to go into labor at our local hospital they would not have the lifesaving technology available to keep our son alive. We were over 1 hr. away from the hospital that we needed to deliver our son at. For the following 4 weeks we were monitored very closely sometimes multiple times a week by our specialist. She was the first angle that had entered our lives. Even though she had to deliver the most devastating news we had ever heard she cried with us, loved us and helped us prepare for the unknown. On 8/13/16 my body could not carry Cutler any further. At the time of his delivery we did not know if he weighed enough for a fighting chance at survival. Cutler entered this world at 27 weeks only weighing in at 1lb 11oz. He was intubated upon arrival as he was struggling to breath. Cody and I heard one cry in the operating room that we hang onto and cherish until the time may come when we can hear him cry again. Cutler was then rushed to the NICU for immediate attention and treatment. Little did we realize that day that our family had grown in more ways than one. We had gained the most amazing medical teams that would be guiding, educating and loving us through the journey ahead. We were transferred from our initial NICU at Methodist Hospital in Indianapolis, IN after 40 some days to Riley Children’s Hospital for the continuation of our 212-day journey. We were initially transferred to Riley for Cutlers first surgery a PDA heart ligation to close the hole in his heart. Throughout the days to come Cutler would endure many more procedures/surgeries. Decisions would be made to give Cutler the best chance at survival he would need a G-tube for feeding, Tracheostomy for breathing due to his tracheomalacia, endless bronchoscopies, airway lasering, ROP eye lasering to save his vision, PIC line placement and plastic surgery for his cleft lip (his palate surgery would come later) are to name a few. I describe life in the NICU with a preemie like a rollercoaster ride that your child controls. As a parent in the NICU you are making life altering decisions for your child’s survival. You are forced to talk about things that you had never even thought about or imagined possible. I will never forget the first conversation Cody and I had about “modifying” our child for the sake of survival. Your heart is heavy with the weight of each decision weighing the positive/negatives. Cody and I found ourselves making life alerting decisions daily with Cutler as he was unstable for much of our stay. In the blink of an eye Cutler could be having the best day with no bradycardic events, holding his O2 and eating when in a mater of seconds, minutes or hours he would be fighting for his life. In seven months we lost count of how many times he coded. As I looked back on my journals I read that on day 112 Cutler had coded twice due to airway issues. I believe the length of your stay in the NICU with a preemie revolves around their fight for life until your baby has the strength to pull life’s simplest tasks together….. Breathing, Eating and going to the bathroom. Cody and I vowed early on in our journey that if Cutler was willing to fight each day we would fight with him side by side and hand in hand. When you are in the NICU long enough you learn how to calculate weight in grams, feeding volume in milligrams, calculate pump times for feeding volume on a continuous feeding drip, recognize the difference between strong and weak wave forms, read O2 saturation levels, know which buzzers and alarms are ok vs. life threatening, watch holidays go by: Halloween, Thanksgiving, Christmas, New Years and Cutler watched the World Series with one of his favorite night shift nurses. We watched miracles and mayhem happen every day! After stabilizing then graduating from the NICU we were sent to the PICU for our final 3 weeks in the hospital. We were placed on the Home Vent Unit in the PICU to learn how to turn our house into a hospital and to keep our son alive on life support. Cutler would be coming home on a ventilator due to his tracheomalacia along with his upper airway having stage 4 Subglottic Stenosis. His upper airway stenosis meant that at his time of discharge he could not pass any air through his upper airway. Cutler will need an upper airway reconstruction surgery done when he meets the medical criteria to be able to breath trech free. My definition of prematurity evolves as does our journey. Prematurity is love, laughter, tears, heartache, anger, hope, frustration and sheer determination to survive. Our personal journey is not a sprint it is a marathon, Surviving the NICU was just the first big fight – it was however a VICTORY! After having a healthy daughter prior to Cutler, I quickly realized all the little things I have always taken for granted having a healthy thriving child. I waited 12 months to rock my child holding him over my shoulder with both of us enjoying the moment. Cutler was relaxed because he could breath with more ease, I felt his relaxation, we were home and thriving. We were both present in that moment and it was wonderful…..Little is so BIG! Cutlers journey towards optimal health will continue for most of his childhood as he follows with 7 specialty clinics at Riley, has multiple major surgeries still to come, he will have specialty orthodontic work until 18 due to his cleft palate and lip and potential plastic surgeries depending on his facial development. Cutler was diagnosed with conductive hearing loss as he has grown. Cutler does have the ability to hear through a bone conduction hearing system that we are still waiting on for him to hear for the first time. Since Cutler is unable to speak due to his vocal cords being caught up in stenosis of his upper airway our family is working diligently to learn sign language as a form of communication until his upper airway reconstruction occurs allowing him to opportunity to vocalize. Knowing all this Cutlers prognosis is amazing. He defies medicine everyday doing it the “Cutler way”, he has beaten the odds of survival, he is currently at 15 months old (12 months corrected age), he is thriving with all his therapies, showing no signs of any cognition issues at this time due to his enlarged ventricles, weaning off of the ventilator all day long and only using it at night, awaiting an upper airway reconstruction in the years to come along with his palate surgery early next year. Cutler is not only thriving he’s active, happy, loving and determined to fight through it all. Cutler reminds us with all his smiles that nothing is written in stone, we must continually adapt and that’s ok, to live each day to the fullest, never take a moment for granted and to never give up! The Nurses, Neonatologist, Physicians, NNP’s, RT’s and Therapists are the reason why I am able to right Cutlers story today. Due to their amazing knowledge, care of our son, and willingness to teach Cody and I everything they knew along with our son’s sheer determination to fight has equaled our success. Our second family resides at Riley we love and appreciate all that they have done for our family and continue to do for Cutlers progress. Talking about prematurity and the journey that it brings is so very important. We were asked to be the Ambassador family for the March of Dimes walk this year in our local area. Organizations such as the March of Dimes that help increase awareness, provide ongoing research and advocate for family’s education are crucial. As parents we are the advocates for our children and on the journey through prematurity … Knowledge = power, strength and survival.







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