I was reading through Ryley’s baby journal, trying to get inspiration for our annual March for Babies letter. I realized something….never once did I write about the possibility of losing him. Never once did I write about all the things that *could* possibly have gone wrong in the NICU or after it. From the perspective of 9 years later, I’m surprised. We were most definitely given the odds and statistics prior to his birth. But it seems that once he was born, I just went into survival mode and turned all those thoughts of what might be off. Maybe I couldn’t let myself think about them. I don’t know. Maybe admitting the possibility would have meant to my mind that they were more likely to happen.
The day after I was admitted to the hospital, we were visited by a perinatologist. He told us that at 23 weeks and 4 days, the likelihood of our baby surviving was about 10%. There was, at that point of the pregnancy, a zero percent chance of him surviving without lifelong medical/developmental issues. Honestly, I think I let that slide right out the other side of my head. I was in denial. My baby was NOT coming then, so I didn’t need to worry about that. Every day I stayed pregnant, those odds changed in Ryley’s favor. So the day he was born at exactly 26 weeks, Ryley a had an 80% chance of survival. I was never given the odds of his survival without lifelong medical/developmental issues. I have since been told (repeatedly) that the likelihood of having a 26 week white male survive without ANY developmental/medical issues are at about 2-3%. Ryley represents the 2-3 out of 100 who come out the other side nearly unscathed. The issues he does have basically anyone could have.
But back to my point of not writing about the possibility we could lose him…..I don’t think I ever admitted that fear to myself. I know I was haunted every day when I left the NICU to go home. I was terrified to be away from him. But even his doctors and nurses said there was no way I could hold a 24/7 vigil by his bedside the entire time he was in the NICU. My admitted fears were of him noticing I wasn’t there, of him crying and no one being there to comfort him, and when he would come home. One baby did pass while we were there. It cast a strange pall over the entire NICU for at least a week, parents and staff included. But even then, I couldn’t admit that it could have been us.
I hear it often enough…it’s amazing what medicine can do these days. Yes, it is amazing. We have all these babies who do survive now who wouldn’t have been given any kind of a chance ten or fifteen years ago. But survival is a strange thing. People see Ryley and they expect every 26 weeker does and has turned out like him. That is completely not the case. Remember, Ryley is one of the 2-3 out of 100 who thrive the way he has. I could tell you story after story of babies born even six weeks later who suffer more than Ryley ever has. Yes, there are success stories, but there are also a million heart breaks, and a million daily challenges that go unseen. We have been diligent and worked hard to get Ryley where he is. And I have cried more times than I can count along the way. Yet we’ve had it “easy”, comparatively. We brought our baby home without any monitors or oxygen. We never went back to the hospital. We had follow-up care and some therapies, but not the constant round some people have of all kinds of specialists for their babies.
I have become aware over the years, and admitted to myself, all of the things that could have happened to Ryley, including losing him. I am beyond thankful that we are where we are, however where we are will never undo what we did lose, nor will it take away the fear of what might have been.