Sunday, February 28, 2010

Isn't that Special?

On Thursday, we had our first appointment with the Special Infant Care (SIC) clinic. This is a clinic run by the doctors in the NICU to follow up with babies who are at risk for developmental delays, and our boys qualified because of their birthweight and because of being 27-weekers. The SIC brings together all sorts of different specialists who are knowledgeable about common preemie issues, everything from speech to occupational therapy.

We were sort of looking forward to this appointment, because the people in the NICU talk about the Special Infant Care clinic with great enthusiasm, and because we figured it would be fun to see some of our old doctors again. I have to confess that I was also looking forward to it because I thought that we would get to hear how great James was doing (and Matthew, too, of course).

It wasn't quite what we had imagined. We did get to see two of the doctors that we'd gotten to know in the NICU (which was really nice), although not the attending doctors we'd gotten to know the best. And people did say how well the boys were doing ("They're so fat!" and "They look just like regular babies!", which are both high praise in the NICU world). One of the nurse practitioners even took a picture for the bulletin board ("we like to have success stories"), which was neat because we certainly took hope from that bulletin board when our babies were up there. (I always looked at the babies born even earlier than ours who were now doing fine.) We also got to check in with the awesome nutritionist (we needed to get the right recipe for concentrating James's formula to 24 calories).

They didn't have any concerns about Matthew, and his weight has him rapidly approaching the bottom of the growth curve for his actual age. They said it was good "catch-up" growth, but it still seems a bit odd to me that he should even be expected to be the same as a full-term nine month-old.

For James, there were three issues. The first was getting his feeding volumes up, which we're already working on, but they emphasized it even more because he's getting to an age where eating becomes more volitional and less a matter of instinct, so it's harder to change bad habits. On a related note, they're not concerned about his weight (he's still gaining), but they wouldn't mind seeing more weight gain -- especially because he's had a bit of a jump in height, and they want to make sure he's getting enough calories to keep a good height/weight ratio.

The second issue is that although he seems to be on track with his understanding of language (whatever that means at this age), he's a bit behind in his expressive language. I think they would like for him to be doing more of the consonants.

The third is that when he's being held, James has a tendency to hold his arms out by his sides like a tightrope walker. Apparently this is a preemie thing, but one that they want to correct by encouraging him to keep his arms more forward. The developmental pediatrician explained that having his shoulders back like that could impede the development of his fine motor skills, because it discourages him from picking up toys/objects and playing with them at the midline (in other words, where your hands come together at the center of your body). We mentioned that he already picks up toys and plays with them at the midline all the time, but nonetheless they want to have him do some therapy to address the issue. (This seems to be a case where a small amount of intervention now will avoid bigger problems later.)

So, for these last two issues, they want to have him see a developmental therapist. This will be coordinated through Early Intervention and the person will come to our house, so at least that's a plus.

Even though these aren't huge things, and it really is good that the doctors are on top of these issues and dealing with them early, it was still disappointing to have new problems. Looking back on it, I think some of my disappointment was a matter of having a different perspective. My mental comparison for this appointment was James now with James when he came home from the hospital -- and from that viewpoint, his progress has been amazing. ("He has a fully functioning liver! He's happy! He's sitting up!") But they're looking at it from the perspective that James should be just like any other kid, and at this point, that's probably the right expectation.

There were a couple other interesting things about the visit. First, the doctor said he could guess which one was the more hyper twin and which one was more calm -- but he picked Matthew as the calmer one, which is just the opposite of what we would say! (We were there first thing in the morning, and James seems to be more of a morning person than Mattie.) And second, they did a rough hearing test by seeing if the babies turned toward a ringing bell, and they both did. I think that James responds to enough sounds that if we were just relying on those kinds of tests to look for hearing, we wouldn't know that he had a hearing problem. I guess it's good that they do the newborn screening, then, because now he's getting help a lot earlier.

And speaking of hearing testing, we left a message for one of the other audiology doctors, and she's working with us to get the test scheduled. (It turns out that the audiologist who we would normally be working with is out of the office for a while because she's adopting a baby, and the adoption came through suddenly -- so that explains why we couldn't reach her!)

1 comment:

Niki said...

Your disappointment is understandable; expectations are hard to put in perspective. I'm glad that the docs are on top of things, though.