Case’s story
Written by: Heather Hollon
September of 2019, we found out we were pregnant after trying for 8 months. Our first baby. It was the happiest day of my life! I imagined all fun things that were coming in my near future like announcing our pregnancy, cute baby clothes, newborn snuggles and introducing our new baby to our families. Well at about 15 weeks, that all came crashing down around me. At our gender ultrasound, we found out we were having a baby boy, but he had a birth defect called an omphalocele. Basically, his liver and intestines were growing outside of his body in a little sac. To say we were devastated is an understatement. Of course, at first, I blamed myself. Is there something I did that hurt my baby? I had done everything you’re supposed to. Take your vitamins, avoid alcohol, take it easy. There is no known cause of omphaloceles. Once I stopped blaming myself, I started researching. But that scared me even more. Google told me that a lot of omphalocele babies have genetic conditions or other health concerns like heart conditions. That’s when the worry really set in. Was my baby going to be okay?
We did genetic testing and everything came back normal. Thank the Lord. But they warned us that there is only so much they can know until he is born. At this point I put my trust in God. He wouldn’t put us in a situation we couldn’t handle. After that, I tried my best to be positive and do all the fun things you do while you’re pregnant. Baby showers, decorating the nursery, picking out names. I was very lucky that besides all the extra doctor’s appointments and ultrasounds, my pregnancy was totally normal and I actually loved being pregnant. Those little kicks are the best feeling in the world and something I will never forget. Although I did get to do some of the fun things, a lot of that had been taken away from me. We didn’t want to buy many baby clothes because we weren’t sure if he could wear them. We didn’t get to buy the car seat because there was a good chance he would need a special one. I did get to have a couple baby showers, but we chose to keep his birth defect to ourselves aside from some close family members, so it was hard to pretend like everything was okay. But by this time, I was pretty used to it. I finally felt like we could do this.
And then COVID-19 hit. A nightmare on top of an already unimaginable situation. Before I knew it, I was working from home, going alone to my ultrasounds and crying daily about the fact that my husband might not be able to attend the birth of his son. It was at this point that my faith was really shaken. I was mad at the world and mad at God a lot of the time. He knew how much I wanted this baby. Why would He do this to me? What had I done to deserve this? All I wanted was a normal baby and a normal delivery, but that wasn’t in the cards for me.
At 1:00am on May 17th, 2020, two days before his scheduled c-section, Case Eldon Hollon decided it was a perfect day for a birthday. And when he makes up his mind, there’s no stopping him! He was coming fast! By 1:45am we were at Children’s Mercy KC hospital being prepped for surgery and at 3:24am, he made his grand entrance with his Daddy right there with me. Because of his condition, we were only able to see him for a second after he was born before he was whisked away to be stabilized. Those few hours in recovery seemed like the longest hours of my life! Finally, they brought him into our room and I got to hold my son for the very first time. It was at that moment that all my worries slipped away. He was beautiful and perfect, and I wouldn’t have changed a thing about him. My whole pregnancy I had stressed and obsessed over his defect, but once I laid eyes on him, I didn’t even see that. All I saw was my precious gift from God. He was then taken to the NICU and later that day, once I had recovered, we were able to go see him. Seeing him with all the cords was hard, but I knew that was what was keeping him alive.
He was such a strong little boy! He proved everyone wrong and did everything better than anyone expected! He didn’t have any other medical problems other than his Omphalocele and a small hole in his heart, which a lot of babies have. We were so grateful. Everything that could have gone right, did. I didn’t get to spend as much time with him as I wanted because I was recovering from major surgery, and we were required to wear masks outside of our room which is difficult after you’ve just given birth. Then came the dreaded day. I was discharged and I had to leave my baby behind. I wasn’t expecting to be so emotional, but I cried the whole way home. A piece of me that had lived inside me for 9 months was now a 40-minute drive away. Those 4 weeks he was in the NICU were some of the most trying times. I wanted to be with him as much as I could, but recovering from a c-section and pumping at all hours of the day meant I was unable to do that. At about 3 weeks, I decided to end my breastfeeding/pumping journey because it was just too much on my body and my mind. I wasn’t eating or sleeping, and my mental and physical health took a huge hit.
The day came when we finally got to bring our baby boy home. He came home with a NG tube, but we were just happy he was finally home. It was at that point I thought we had been through the worst of it. But boy was I wrong. In the 3 weeks that Case had been home, we had taken 3 separate middle-of-the-night trips to the ER. One being an ambulance ride and another resulting in a 6 day stay in the hospital. He came home on oxygen, a pulse ox monitor and was diagnosed with Pulmonary Hypertension. Case was NG fed until about 7 months old, when we decided to hire Growing Independent Eaters to help us wean him off the tube. He went from being 100% tube fed on day 1 of our wean, to 100% oral on day 17 and he hasn’t looked back since.
He was on home oxygen for about 12 months. He has had two surgeries so far; one being a cardiac catheter to get a better look at his pulmonary pressures at 6 months; and another to correct his bilateral inguinal hernias at 15 months. He conquered both procedures like a champ, bouncing back to himself the very next day. He was also diagnosed with Strabismus at 8 months old, which is unrelated to his birth defect, and has worn glasses ever since. His surgeon isn’t planning on repairing his omphalocele until after 3 years of age and his cardiologist suspects he will need surgery to close his ASD around 5 years old. Although we aren’t looking forward to those, we are grateful that our life has slowed down a bit and we can just enjoy him now.
He is 19 months old and unless you saw his bare belly, you would have no idea he was ever born with an omphalocele. He struggles a little with gaining weight, like a lot of O babies do. But he is growing and that is all that matters. Since the day he was born, he has been a light in so many peoples’ lives and has inspired more people than I can count.
In the beginning, I was worried about all the things that were being taken away from us, but now, all I see is the things we have gained since he joined our family. He not only made me a mama, but he made me into the person I was supposed to be. God’s plan really is so much better than ours. Throughout our journey, one quote has stuck with me. “God gives His toughest battles to His strongest soldiers.” Our life with our son didn’t start out how we imagined it would that day we found out we were going to be parents. But he is the strongest little soldier I have ever met. This journey has included some of the hardest days of my life. It has made me question everything. But when I look at his sweet face, there’s no question at all. God chose us to be this perfect little boy’s parents. And I’m so glad He did.
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