Thursday, April 22, 2010

My Favorite Game--The Waiting Game!

The Waiting Game began a long time ago. When The Kid was six days old The Docs did a head ultrasound and found bleeding in his brain. "Very minor and very common; the kind that usually just goes away and no one would ever know," they told me. Grade I on one side. It looked like it was already starting to heal, they said. Probably actually happened in utero. But don't blame yourself, they said. Well, that's a whole different story. But in this story, they checked The Kid's brain again a week later and found bilateral Grade I, almost Grade II. The wonderful Nurse Practitioner, Charlene, explained this diagnoses with pictures and all. Learning disabilities can be expected but not guaranteed, she said. And they would keep a close eye on it. And do daily head measurements to make sure that he wasn't getting hydrocephalus.

A few weeks later it was Grade II, almost Grade III. Learning disabilities and sensory disorders are almost guaranteed and physical or mental disabilities would not be surprising. When his eating abilities were drastically lagging behind what was expected of a baby his age, they did an MRI to check for unseen damage. They found one very small spot where the bleeding caused damage on the surface of his brain. It isn't bad enough to cause his eating problems, but depending on where it is in his brain it could cause mental retardation or cerebral palsy.

So, The Waiting Game begins. There is no real way to know what problems we may face with this "brain damage" until The Kid reaches his developmental milestones. So far, he is right on track. Thank goodness. All of his social milestones were reached early, as a matter of fact. A few weeks before his due date he smiled his first social smile at his favorite nurse, Catherine. I saw it. She was talking sweet to him, he liked it, so he smiled at her. It was adorable. He cooed his first coo at another nurse within the week following his due date; she was very much taken by surprise. I guess that doesn't happen much in the NICU. Weeks before that, I used The Clown (in two posts prior) to test The Kid's tracking abilities. He did great.

Now...we wait. He holds small, light rattles, but he doesn't yet bring them to his mouth. That should happen very soon. We practice every day.

It is very nice to know that there may be some delays, so I can take note of everything he does and get him help at the very earliest sign of trouble (and besides, there is an OT, an RN, and a case manager who visit regularly to check up on these things with me, give therapy, and show me what to do and watch for). But it sure is easy to go crazy. There is a very wide range of "normal ages" to reach milestones. If my kid is in the late range (according to his adjusted age) of normal, I'll probably start having heart attacks. Daily heart attacks. I mean, we can handle any problems that come our way, but waiting and watching for the problems is the hard part.

So, I just need to relax. I don't want The Kid to grow up too fast. I want to enjoy his tiny baby stages. Let's live in the present, ok? Ok. I'll keep telling myself that.

But for now check this out:

Does that look like a kid with cerebral palsy to you? No? Me neither. He clearly has control over his skinny little legs. And as we speak he is doing the same thing with his arms. He can't grab the toys yet, but he bats at them. Go, Kid!

And he played with his legs like that for at least 45 minutes straight. ADD/ADHD? I think not.

Autism, you might say? I might say that, too, especially since it's in my family, but the last time that The OT was here, she looked at him and he looked right back. They stared at each other. She said, with awe and delight, "He's the kind of baby who when he looks at you, he sees straight into your soul." And he does that often. Many, many times a day.

And he "talks." I say something, he looks at my mouth, I pause, he looks at my eyes and babbles something back to me. And on it goes. And he moves his mouth into many different shapes, as if he sees my mouth and thinks, "How do you do that? Is it like this?"

Ok, so I'm a little crazy, but wouldn't you be? Every little thing he does calls for celebration. I don't think we parents celebrate life enough. We have these little miracles who do these amazing things. Have some cake and ice cream. Why not? Life is good.


Katie B said...

Hear hear! I'll have some cake and ice cream in sweet Caleb's honor.

Megan said...

You are so much more positive than me. I hate waiting and freak out daily that something is wrong even though D has far fewer things up against him to start with.

I have been trying to read some preemie books to help me understand his delayed development but all they talk about is the potential problems they can face. It is making me more nervous than it benefits my knowledge. If I stop I think the waiting game will be easier. Thanks for helping me remember it is going to be ok!!