It sounds crazy, but I wish my baby cried. Trisomy 18 makes James weak. He has low muscle tone. He’s very quiet. Everytime I walk past one of the other NICU transition rooms and hear a baby lustily wailing, I feel so sad and jealous. James got a vaccine today as well as a repeat Vitamin K shot, and I was happy to hear how mad he got and how he wailed. It tired him out quickly though, and he subsided into quiet baby mode again rather quickly.
I remember with both of my girls – nursing, cosleeping, middle of the night waking, just wanting five seconds to put the baby down and do something non-baby care related – hanging on for that nap time when I had a couple of hours to myself.
James sleeps most of the time. When he’s awake, he is quiet. He sleeps through the night without fussing, because he gets feedings every 3 hours like clockwork. This may sound like a dream to a tired new mother, but it truly isn’t. I want to be awake at 2am, sleepily nursing in bed or in the glider, rocking him, shushing him, putting him in the Moby with his daddy.
What I wouldn’t give to be woken by a hungry, breast-seeking newborn.
This situation gives me a new appreciation for the irritations of infancy.
We are preparing to take him home. It looks like this will likely be Sunday – barring anything else developing. He will go home with his NG tube in place, and we will feed him using a syringe pump until (if?) he becomes able to handle oral feedings better. The doctor said that to make it easier on us – we could do a continuous slow feeding through the night. That way, we wouldn’t have to wake up and feed him.
That made me inexpressibly sad.
We discussed G tube placement at some juncture down the road.
It hammered home the point that James is a “medically fragile/complex” child. He is always going to have special needs. I cannot begin to fathom how we are going to get by, how life is going to proceed and be manageable.
And then I laugh at myself for worrying about that. I am certainly putting the cart before the horse. James isn’t even home yet, and I am already worrying about the what-ifs of long term care. Who knows if I even get long term with him? What is long term for James?
And I feel ungrateful for worrying about it, because so many trisomy parents have never had the opportunity to spend this kind of time with their child or even consider the possibility of taking a beloved child home.
It has been a hard and emotional day despite the joy of him doing so well and the possibility of taking him home soon.