All Trached Out

Last night, for the first time ever, I managed to get to the NICU early, before it reopened to guests at 7:30 after the one hour it closes in the evenings for shift change. So I'm standing in the waiting area, idly re-reading the posted information about requirements and expectations for taking your baby home. It notes that babies generally cannot go home until they are no longer experiencing apnea, but that you might be able to take your baby home with an apnea monitor and oxygen. This made me laugh. If only I was taking my baby home only on oxygen and a benign little canula. We'll probably have oxygen, yes, but it's going to be feeding into a trach. Yet, when I read that about the oxygen four (yes, four) months ago, I was horrified. No way did I want to take a baby home on oxygen! How would I care for a baby on oxygen? Could I put a baby on oxygen in a sling? Could we go places? I didn't even want to know the answer. I just wanted to walk out of here with a baby as healthy as if she'd been born full-term. I wanted to walk out of here with this nightmare firmly behind me.

Instead, I got a trach. Or, rather, Brave Baby got a trach. Now she's all trached out. I don't mean to be blithe about it. Sometimes you really do have to laugh to keep from crying. You have to see the humor in the thing. It's true, though, that there is very little humor in this. When I am not numbly roving along through my days, just trying to get it all done, I am inwardly pained, saddened, angry, afraid, bitter. I'm still very frightened that we will lose Brave Baby. I'm afraid of what more she will have to endure. And still, it occurred to me yesterday that it's unhelpful to her for me to feel this way. I don't, after all, want her to feel this way about her condition, about her life. I don't want her wallowing in self-pity, feeling angry about her departures from "normalcy". I suppose every parent whose child has special needs at some point goes through some period of adaptation. Maybe more peace will come once we get her home and I become confident that we can really handle taking care of her on our own and still manage to have some semblance of the life we hoped for ourselves or, even, some other life that we can learn to embrace and be happy with.