The big day had finally arrived – we were all going home! We had deep cleaned the carpets at least three times, had his oxygen equipment setup, his room was ready, and so were our log books. In case of an emergency, the power company and the fire department were notified of his medical needs. His first pediatrician appointment was scheduled for the next morning, with a nurse coming over to check on us afterward. We had all of the information we needed for his specialists – the pulmonologist, cardiologist, ophthalmologist, audiologist, neurologist, pediatric surgeon (for his upcoming hernia appointment), the compounding pharmacy, the home nurse (for additional checkups between weekly doctor visits), and of course, the medical oxygen supplier; for starters.
We took our first walk with him in the stroller, and our last walk around the NICU, sharing hugs and photos with his nurses and doctors who were currently on duty, the receptionist, and the March of Dimes coordinator. Five and a half months after he was born, he took his very first breath of fresh air, and I almost cried thinking that it was just a garage parking lot. We drove home, switched him from the portable oxygen tank to the home’s oxygen concentrator, and just sat down on the floor, in our dining room, watching him and his monitoring equipment. It was all so surreal.
A friend, who didn’t know he was being released that day, was planning to drop off toys at the door. She and her boys had gathered items which they no longer played with and wanted to donate them to our little one. The gesture meant a lot to us, and we loved that we could open the door and at least let her see him, even if it wasn’t safe for her to come in. Some of the toys, such as his favorite ball, he was able to play w/ fairly soon; while others he’s grown into more recently (he loves the construction trucks and cars!).
One thing which was mentioned repeatedly was how careful we needed to be once he came home. We were told that due to his prematurity, immune system, and lung damage, he had a 90% chance of being re-hospitalized within the first year, and a 50% chance of surviving if he was. The specialists told us that it would take a couple of years for his immune system to catch up, and that it needed time, not exposure, to do so. His lungs were also still recovering from the Pseudomonas infection, and while the scar tissue will never go away, healthy tissue will become a larger and larger percentage of his lungs over time. We were warned, repeatedly, that friends and family members wouldn’t understand and would try to argue with us, but they also provided us with the statistics. There was no such thing as “too paranoid,” because all it would take was someone who didn’t know they were sick (or carrying a bug which is harmless to you and I, but potentially deadly to a micro preemie), to land him back in the hospital, or worse.
When I did have to go out, such as to the compounding pharmacy to pickup his lung medication, I was always super careful, touching as little as possible, often wearing medical gloves under my winter ones, and sanitizing often. When I got home, I’d sanitize again, leave my shoes in the garage, my clothes went directly into the waiting washer, I tossed his meds in the fridge, and went straight upstairs for a shower.
We were fortunate that our trips out were limited (with the exception of his medical appointments), and we could grow my company and work from home, all while taking care of our son and handling other family matters. There was a lot to do, and our preparations were about to be tested – it was time to batten down the hatches.
Over the next few months, he had surgery for his hernia, and as his lungs grew, he was able to come off oxygen support. His follow-up appointments with the specialists and his pediatrician all went well, and he was meeting his milestones on time for his corrected age (the age he would be if he wasn’t born early). He was generally a happy baby, loving and curious, growing up so much faster than I could have imagined. We have had some struggles with speech, which we’re working on, but he still loves to socialize and it hasn’t slowed him down.
Home schooling has given us the freedom to both teach at home and also attend classes and events through the park service, museums, and other organizations. He’s very social, enjoys talking with everyone, playing with the neighborhood kids, and will be taking swim lessons soon. His lungs are strong, with no outward signs of the damage which nearly took his life. Academically, he’s testing several years ahead of his peers.
When he was born in 2016, we were told that statistically, his chance of survival was 0%. By the grace of God, and a willing and amazing medical team, he’s thriving. Every baby deserves a chance to write their own story, and I’m in awe of his. As medical knowledge continues to advance, the survival rate is also increasing. In 2024, of those hospitals which are setup to assist micro preemies, the survival rate for 22 weekers is now 67%!