My name is Eli and I was born inside of Children's Hospital of CO on April 27, 2017. In December of 2016 at my 18 week ultrasound, my parents were excited to get some good pictures of me but instead they were told that something was wrong. The sonographer thought that my stomach was on the wrong side of my body and referred us to a Specialist who would be able to tell my parents what was really happening. After a few hours of scanning, that Specialist told my parents that I had a Congenital Diaphragmatic Hernia or CDH. Neither of my parents had ever heard of that before but since he called it a hernia they were relieved and thought it would be something that could be easily fixed. The Doctor quickly told them that it was a very serious, life threatening birth defect and that the chances of survival nationwide were less than 50%. He told them that CDH occurs when the diaphragm does not fully form allowing the contents of the abdomen to migrate up into the chest cavity. In my case my spleen, stomach, colon and all of my small bowel were in my chest. This causes severe lung development issues, pulmonary hypertension and has the potential to cause multiple other conditions. My parents were absolutely terrified and devastated by the news and even more upset by the fact that the Specialist did not give them a lot of hope. He even questioned whether or not they wanted to continue with the pregnancy. As long as I had a chance at survival, both of my parents committed that they would do anything and go anywhere in the world make sure I was given the best chance to not only survive but to eventually thrive.
After researching the best places for CDH care in the country, my family was referred to Children's of Colorado which was right in their backyard all along. After the initial consultation that included an MRI, an ultrasound and a fetal echocardiogram, they sat down with an entire team of Specialists. Again, my parents were terrified but for the first time these Doctors gave them hope and laid out a plan to make sure that I had the best chance when I was born. From that first day, these Doctors made us part of their family and my parents knew that we were in the exact right place. The next 20 weeks were filled with a few scares, a lot of monitoring and additional tests. It was decided that I would make my grand entrance on Thursday April 27th at 38 weeks via planned C-Section to ensure everyone was ready for me. The Doctors told my parents that I would probably not be able to cry and that as soon as I was born, they would rush me to stabilization to get me intubated, put on the ventilator and stabilized for the NICU.
At 9:35am on April 27th, I came into the world and to everyone's surprise, I let out a big cry just to let my parents know that I was ready to fight. There was a room of about 15 Doctors, Nurses and Specialists that were waiting just for me and they immediately started the stabilization process which took just over 2 hours. I was then ready to be taken to my NICU room where the team continued to work on me. That first night was really scary and several things happened that they did not expect. My heart rate was way too high for a long time, my temperature was up, they saw fluid or air in my chest cavity that they had to deal with, my ventilator requirements were going up and I was requiring a lot more medication for the Pulmonary Hypertension that I had as a result of my CDH. I ended up with 2 emergency chest tubes that night and things were not as stable as everyone had hoped they would be. The next few days I continued to fight through many challenges. My parents could not hold me but I knew they were there....they would talk to me, hold my hand and touch my head to let me know they were right there with me. In fact, they really never left my side other than a couple of times during my entire 7 week NICU stay. Finally on Day four I had my big repair surgery where they pulled all of my organs down out of my chest and put them into my abdomen where they belonged! Then the Doctor, who we call Batman, fixed my diaphragm and sewed it together so it couldn't move back up again. My defect was worse than they anticipated but I came through the surgery like a champ. On day 9 my parents finally got to hold me for the first time and it was the absolute best feeling in the world for all of us. They also tried to extubate me, which means to remove my breathing tube, to see if I was able to breath with just oxygen through a nasal cannula. That was OK for a few hours but then I really started having a hard time. We were all afraid that they were going to have to put the breathing tube back in but they were able to try a new technology that worked with my ventilator. We later learned that this new technology is not readily available in many other hospitals and we are so thankful that Children's of CO was able to offer this to me. After a few more weeks of slowly weaning me off of my medications and ventilator support, I was ready to move to just the nasal cannula and to start trying to eat a little from a bottle!
I continued to get stronger by the day and finally after 7 weeks, my parents were able to take me home where I belong! I am now the happiest 9 month old you will ever meet! I eat by myself without the need for a feeding tube and while I am still on Oxygen for part of the day / night, I am working on getting rid of that too! My parents have called me Warrior Baby Eli from the moment I was born but the real warriors were our heroes at Children's Hospital. My Doctors, Nurses, NNPs and Respiratory Therapists never gave up on me and made sure that I won this fight. I had the BEST team of Primary Nurses that not only took care of me but they took care of my parents, too. They loved us and even brought my parents home cooked meals when they just couldn't eat another grilled cheese from the cafeteria. My Doctors were amazing, they treated me like I was their own child and were never too busy to explain things to my parents or to just stop and give them a hug when they needed it most. Today I have been home for almost 7 months and many of my nurses have become very close personal friends of our family. I still see several specialists at Children's for Physical Therapy (PT), Special Care Clinic, Surgery, Pulmonology and Nutrition. I am also followed by their Multi-Disciplinary Clinic to make sure that I am continuing to get stronger everyday. Thanks to this team, I am almost caught up on my milestones and while we know that I will never be fully out of the woods and remain at a higher risk for things like bowel obstructions, complications from colds or respiratory viruses and the unlikely chance of reherniation, just knowing this team is here for us brings us peace of mind.
This year I have the distinct honor and priviledge to serve as an Ambassador for Children's Hospital of CO and we couldn't be more excited to let you all know that the money I raise will go to directly support both the NICU (Neo-Natal Intensive Care Unit) and the Colorado Fetal Care Center. I was born with one of the worst things a baby can have and in many cases, babies like me are said to be the sickest kids in the hospital. Thanks to this team of Doctors, Nurses and Specialists, I am not only alive but I am thriving. We are so grateful to these amazing heroes, our access to the best technology and this incredible place. We want to make sure that every other family in CO and around the region has the same fighting chance that I did. Please consider donating to my page so that we can all give another family hope, love and the best possible chance for a happy, healthy outcome!
Warrior Baby Eli