I ride to give hope to Children's Hospital Colorado patients like Ollie.
Oliver Gray Hybert was born at his home in Colorado Springs, Colorado on February 22, 2021. He was 8lbs 8oz, and by all appearances a very healthy little boy. We were delighted to complete our family with this sweet boy, and spent the next few days enjoying life as a family of 5. After a routine pulse ox check a few days later, we ended up at Children's Hospital Colorado in Colorado Springs. On February 26, 2021 Ollie had his first echo. The tech stepped out in the middle of the echo, and by the end, we had a cardiologist calling us, the NICU director and several nurses in our room. We were told that Ollie had Hypoplastic Left Heart Syndrome, essentially that he only had half of a functioning heart, and that he needed to be moved down to the NICU immediately.
On March 3, 2021, we handed our sweet boy over to surgeons we had barely met to save his life. Ollie's heart was the size of a walnut, and during his open heart surgery they completely transformed how it functioned. His chest was left open that first day to allow for healing, so we were able to see his heart beating in his chest.
During that 62 day hospital stay, Ollie would fail extubation, need his chest opened again as his sternum was not healing and needed to be wired shut, he would have a g-tube placed (code twice after this when his breathing tube clogged), and have a stent placed during a cardiac catheterization. He worked with therapists and underwent countless other procedures.
Ollie was home for a month and seemed to be thriving. He was gaining weight well and enjoying the time with his brother and sister. On May 29, 2021 Oliver's oxygen levels began to plummet and he was not responsive to supplementary oxygen. We once again transferred from the hospital in the Springs up to Denver, and a cardiac cath on June 2nd revealed that the stent that had been placed previously, was partially broken but unable to be safely removed in the cath lab. On June 3rd, Ollie had his second open heart surgery.
On June 25, 2024, Ollie had his third open heart surgery, the Fontan. This was the first surgery we were actually able to plan and prepare for, and it felt completely different. It was the hardest in some ways, because we had an active, thriving toddler that we had to pause life on for this major surgery. Seeing him emotionless and not eating was hard. At home, Ollie didn't start eating again until he was 3.5 weeks post-op. It was around that time that our smiley boy really started to come back to us. He didn't believe in the sternal precautions and rest he was supposed to be on anymore - running and jumping without fear. And that's just Ollie - always smiling, and just a happy go lucky kid. You would never know the battles he has faced.
It's important to note that these surgeries do not fix the problem - Ollie still has half a heart. For context, right now Ollie's normal oxygen saturations are 87-89 (his goal is to stay above 85%). Our normal oxygenation is 95+. At some point, Oliver's heart will fail. It may be next month, it may be in 40 years. We have no idea when that will happen. When it does, the next step would be a transplant. Right now, that is the only available option. We are extremely hopeful that research and medical advances will offer more options before then. For now, Ollie has half a heart, but we fight with all of ours for him.
