Difficult Children

You wouldn't know it now, but Toby was a difficult baby. He cried often and nothing would soothe him. Well, sometimes he'd stop crying if you just put him down. And it was crazy to try and get him to sleep. We'd spend hours trying to get him to sleep. Ugh!

Well, Alicia is different. Alicia doesn't cry much, as long as you are holding her. Holding her. She wants to be held all the time, that's all. All my day. Yes, I'm going just a bit crazy. But at least she usually stops crying when she's held. At least some of this is medical. She has reflux, which understandably bothers her, and gas too. She is often constipated. These are all preemie issues. People with old preemies, babies born after 32 weeks, often tell us, oh these are such easy babies because they are on a schedule and they are used to noise. They fall asleep so easily. Well, Alicia falls alseep easily, but that doesn't mean that you can put her down. We've heard from parents of extreme preemies (that's what they're called; I'm not trying to title a new TV show) that once the babies come home they are quite difficult. I wonder if it has to do with hitting their due date. So, she's pleasant, beautiful, strong, and exhausting.

So just how is Alicia? Good. Last Monday she weighed 7lbs 6oz. Early Intervention (a school district program) has been out to assess her and she is able to do all the things that a one-month-old should be able to do. She still has trouble pooping on her own. I think she still has fluid on her lungs. She's still on oxygen. She hasn't had any apnea or low heartrates for over a week now. She's eating more at a time. She often sleeps for three hours at a stretch at night.

Her eyes are fully mature now. There is no trace of retinopathy. She'll have to go back in six months to check for wandering eye. And then she'll have to go back each year for a couple more years to check her vision. She is at a higher risk for needing glasses. I can live with that.

There must have been lots of other things I was going to tell you, but I can't think of them anymore. A mother just called me from NICU. I knew her and her baby boy. He died today. He was born in December and he died today. He was beautiful. His mother loved him so very much.

I titled this post "Difficult Children" before I began writing. Before I got this call. Having gotten this call, I am remembering this part of who Alicia is. She is a member of a group of babies who have grave issues, and sometimes die. When you're in NICU long enough, you stop caring whether or not your baby becomes blind or can drink from a bottle. A little oxygen and a monitor are nothing. Apnea is part of a normal day. Of course you would grant your child all health if you were able to do so. But you aren't. And it becomes so unimportant anyway. We parents of the NICU babies just want to be with our babies. They aren't difficult children. They are our children. We want them to live. And we want them to live with us.

We will miss you Spencer. I'm so very happy that I knew you.