Maybe winter is just around the corner, but in my world, the days are getting longer. It’s been 52 days now since she was born—we realized last night that we’re now the whiteboard that the new parents notice when they look around. Oh, honey, she whispers, look at Nyana over there. She’s been here since the middle of September. They give each other sad looks and he rubs her back and tells her, Don’t worry, love. Our baby’s a fighter. We’ll be in and out of here in no time. We used to be that new couple.
Nothing much has changed in Nyanaland in the past few days—since getting her crib and her new breathing tube, she’s been mostly stable with just enough hiccups in her breathing to be sure we’re paying attention. I sit by her bedside all day and whisper sweet nothings to her and remind her that she’s allowed to be bad at just about anything in life—sewing, swimming, spelling—she just can’t be bad at breathing. And she just lies there, sometimes staring back at me, but mostly just sleeping, and often desatting.
We had a much needed conversation with an RT last night about her lungs and long-term prognosis for Nyana. It wasn’t pretty. We’re in a race against the clock, in a sense: we need her to grow and get strong enough for the lungs to heal, but she can’t grow too big that the increased respiratory demands become too much for her weak lungs. We’re looking at a tiny child who could come home from the hospital entirely unscathed, or who could lose this battle completely when she gets to a point where her lungs just can’t function any more. And between both of these extremes is a deep, scary grey area of a multitude of disabilities. While it’s nice to believe and tell ourselves that our babygirl is going to be perfectly fine, we need to accept the reality that there are many possible outcomes besides “perfectly fine”.
The respiratory therapist we spoke to last night said that he hadn’t seen BPD as bad as Nyana’s since the days when there used to be nothing that could be done for babies with chronic lung disease. Twenty or thirty years ago, a baby like Nyana had no chance of survival, and the best the NICU nurses could do for their tiny charges was make their lives as comfortable as possible as they waited for their lungs to fail them. Today, there are better therapies available, but every case of BPD is unique and there is no one course of treatment guaranteed to work. It’s obvious that our medical team is doing all they can for her, that I don’t doubt. I worry though if all they can do is going to be enough.
I won’t lie, I’m scared. I’m scared and I’m tired and quite frankly, a bit pissed off. This isn’t what we planned on when we set out to start a family. Don and I don’t deserve this. More so, Nyana doesn’t deserve this. And yet, here we are, and there she is. So we move forward, one foot in front of the other, every day one day closer to home. I tell myself that somehow the three of us will make it through this, and all that matters is coming out on the other side together. I’ve accepted that she won’t be home for Christmas—not even close—and am focused now on just getting her home where she belongs.