Monday, September 27, 2010

Just how it is

I have NICU on the brain. One big reason is that we got to take a visit there last week. They asked us to be part of a new Family Advisory Council to get parents' opinions and advice as they look at making changes and overall improvements for families. Pretty cool. We were so, so happy with the care that Noah (and Mommy and Daddy) received there and it is a very special and important place to me. It was a good meeting and I am looking forward to seeing what comes of it all. And there is just something good for me about being with other NICU moms. We are the most recent "graduates" of the NICU on the council and they all said that the effects of the whole experience didn't really hit until about a year afterward. Oh great. I guess we'll see.
One thing that really struck me this time was how many of the staff commented about how rough a start Noah had. When I think of his stay overall, we really were blessed, considering how much more could have happened that is fairly common for preemies that early: infections, heart surgery, eye problems, brain bleeds... (not a pretty list is it?) We are so thankful to not have had any of that. But his delivery and those first few weeks were pretty rocky. I was talking with Corey about the meeting and then some of our memories and he mentioned something that either he hadn't or I had never really caught before. A kind of random detail--how many staff were in the delivery room when Noah was born. 28. (We pretty much monopolized the NICU and birth center staff...) Yup, 28 people were needed to help me and my child survive. The "why"s of that are hard to think about.
Fast forward to today; Noah had his first PT (physical therapy) session. Personally I am really not concerned if he is late on hitting some milestones. Really, I'm not. But the fact is that he has and will continue to develop differently that a full-term baby. His systems and muscles were affected in ways that will continue to show up. That's just how it is. Despite my working on skills and propping him to his side, gravity and being out in the world took its toll on his little body. That's just how it is. He was supposed to be curled up safe and warm in my womb for those three months and he was laying in a plastic box hooked up to machines and sensors.
He really is doing so well and doesn't have too much to work on, and like I said things could have been much worse. And he WILL catch up. But some days, like today, the "just how it is" of being 3 months premature is especially hard on Mommy.


  1. Hang in there, Ellie! You're doing so great. Isn't it nice that you KNOW about potential problems so that you can take care of them with therapy right now, so he can overcome everything completely by the time he's just a few years old? The problems won't follow him all of his life, but the miracles will.

  2. You have been through so much and are amazingly strong. You'll be an excellent member of the Family Advisory Council because you know what can happen and are sensitive to the needs of both parents and staff. Good for you for accepting their offer.

  3. "The problems won't follow him all his life, but the miracles will"...that should be in a NICU mom handbook or something! Thanks.