SICC Report

Our evaluation and appointment at Duke's Special Infant Care Center (SICC) went very well - and very long. We arrived for our 9am meeting on time (for once for me) and rolled back into our driveway at 3pm - just in time for me to jump into the truck and make my 3pm dentist appointment (only 3 minutes away.) I'm honestly not sure what we did for 6 hours there - it didn't seem that long, but we did get a lot accomplished.

Here's the run down:

Weight & Height

Natalie: 20 lbs 2 oz! 32.5 inches.

Abby: 20 lbs and 32.5 inches.

We were pretty excited about this! Finally - 20 pounds and counting!

Development:
According to the Bailey Scale of Infant Development, Abby and Natalie both test at their adjusted age (20.5 months) in nearly every category: cognitive, receptive language and fine motor. As expected, their verbal expression was not as high and they tested between 16 and 17 months. Ironically, Natalie actually tested higher than Abby. Normally Abby is the chatterbox and Natalie more quiet. I will say that Natalie has come a long way int he past month. She has really started babbling and trying to repeat words you give her. Abby does more "jargon"; baby-speak in sentence form. For instance, she will point to something and say, "abba do dee doo?" She is clearly asking a question; the inflection of the words and tone is right, we just can't understand it. I have more to say on their language later, but this delay wasn't a surprise and in fact, it's documentation is somewhat welcome since we will now test to qualify for speech therapy for them both.

I do have a few words about their test results. I was a bit surprised they didn't test at or even above their actual age in some areas - especially language comprehension. According to some of the other developmental scales they test much better in several areas. I'm not sure exactly how the Bailey is different. It seemed to me they didn't even try to see how far above their adjusted age they could go. For instance, they had to identify three body parts and three pieces of clothing. "Where is your nose, your hair, your shirt, your pants?" Once they did that, the tester moved on. She never checked to see how many they could do. It just so happens that they can point to at least 15 body parts. Obviously, that alone doesn't jump them to a next level, but there are many things they can do that they never looked at.

I'm not sure what all that means, really. Maybe they were just trying to see if they were where they were supposed to be, and not the limits of what they can do. I don't know. At least we know they are on track for their adjusted age, which is really quite remarkable for 26.1 weekers and we are very, very proud of them.

More on the verbal expression ie. talking...
As I said, we were fully expecting some delays here. The girls really have made tremendous strides in the past few months - especially Natalie. But, they still don't really have very many words for 2 year olds. It's hard to say why. Maybe because they were premature, maybe because they are twins, maybe they would have talked later no matter what. Honestly, if they hadn't been premature, I probably wouldn't be that worried about it, especially since it seems every week they say more and more. But, since they are preemies, I see no reason not to use very resource available and help them as much as possible.

So, we have spoken to our CDSA case worker to set them up for evaluation for speech therapy. It just so happens that they stop adjusting for prematurity at age 2 which obviously works in our favor. Testing at 16 months isn't too bad if you are 20.5 months old. It's only a 4 month delay. But, if you tack on the extra 3.5 months, then the delay becomes nearly 8 months and that is certainly worth addressing. Therefore, we have evaluations coming up soon, and will begin Speech Therapy sometime in the next month or two.

Along with Speech Therapy, we will soon also begin Physical Therapy for Abby. I have recently been concerned about the way she seems to turn her right foot in when she is running. She also throws her arms back a bit when running. I had also noticed she seemed a little tight in her thighs; she has a lot of resistance when changing her diaper, for instance. So, I had PT look at her. She and the other doctors agreed that she seems to use her foot and arms to compensate when she starts to lose her balance. This likely indicates that her trunk muscles are not as strong as they should be. It also turns out they both have extremely flat feet ( one of the few things inherited from me - sorry girls). This causes them to "flap" their feet when running. You can hear it on solid surface floors that they sort-of have a clapping sound as their feet or shoes hit the floor. It's as if they aren't rolling their feet - heel, toe, heel when hey walk or run. They just slap them down flat-footed.

We've been given some exercises to help Abby with at home and the PT will help a lot as well. There is also the possibility that she will need some little braces on her lower legs to force her to keep her foot turned out the right way. It makes me sad to think of it, but I'd rather her have it done now than have problems later. I actually had a similar problem as a child and my parents were told I'd grow out of it. As a result, I have very flat feet and walk very much on the inside of my feet. It causes me a lot of pain in my ankles as well as very weak ankles which means I twist my ankles a lot, and sometimes actually fall right down. I don't want Abby to have the same problems later.

Other issues and discoveries:
The doctor felt Natalie's frequent pneumonias and both girls' reoccurring ear infections warranted further investigation. First up will be a trip to the pulmonologist for both to do some lung function testing. Premature babies are at risk for Chronic Lung Disease due to the scarring left by being on a ventilator when born. The girls have actually done very well considering they have not had any re hospitalizations since their discharge from the NICU (re-admits are very common for preemies). But, the last few months have been much more difficult, especially for Natalie. It's hard to say though how much of it is prematurity and how much is simply more exposure to other children. In any case, it's worth looking into therefore we will soon visit the pulmonoligist.

The ear infections will also warrant a visit to a specialist. Dr. G thought it appeared as if the girls had a bit of fluid in their ears and Abby's ears were especially waxy (again, sorry girls - that's a mommy thing). In light of the reoccurring ear infections and their delayed speech, an exam and opinion on ear tubes is in order.

The good news: The doctor was very pleased with their overall development and progress. She also did not seemed too concerned about their weight and I was thrilled not to get any lectures. She offered some suggestions to deal with the spitting up (which happens at least 5 times a week - maybe more). We may be giving Nutrum Junior or Bright Beginnings a try. Both are similiar to Pedisure but easier to digest and, of course, I think, more expensive and harder to get (special order from the pharmacy instead of on the shelf at Walmart or Target). We'll probably get some and give it a shot just to see if it makes a difference. It would be nice. We've given up on cleaning the carpet in their room. Now we just keep a towel spread out on the floor for them to throw up on - and to cover the already existing spots:-)

Overall it was a very good visit - if not very long. The girls were so tired. They were asleep in the car within minutes and slept when we got home until almost 6pm. It was a long day.

We are very pleased with how well the girls are doing, but the visit did offer a few eye-openers. Until now, Abby and Natalie have seemed to defy all odds and have met and exceeded all expectations. They seemed to escape the pitfalls of prematurity. It seems however, that it may be catching up with them a bit. Although flat feet and ear tubes are in no way limited to premature kids, I think we felt a bit much like we had dodged the premature bullet and our babies would continue to be pretty much perfect. We've been brought back down to earth, I think, and now face a number of the concerns many preemie parents face - including concerns over lung disease.

I think it goes to show however, how important it is for preemies to receive and continue to receive services that allow monitering for several years since it can take time for problems to crop up. As mentioned above, technically, doctors, therapists, etc. stop adjusting at age two because supposedly children are all caught up by then. Well, that's considered one of the biggest, and most annoying, myths among preemie parents. While it may be true that 36 week preemies are caught up by age 2, micropreemies are a whole different ball game. Obviously, some problems don't even begin to show up until 2 years, nevermind resolve themselves by then.

I have a feeling the next few months are going to be very busy. I'm not sure if I've mentioned it before, but I'm actually going to stop my babysitting job in the next few weeks. It kind-of breaks my heart, since the kids I watch are almost like my own and I'll miss them every day, but the girls have actually struggled more these past 5 months since I've started babysitting again. As always, it's the chicken and the egg argument, but it seems prudent to err on the side of caution. Also, the girls being sick throws a wretnch into the work plans of the kids' mother, which makes me feel just awful. So, no more work for me.

Aside from knowing I'll miss the kids so much, I'm happy we are making this move. I have felt like I never have time to play with the girls anymore the way we used to. I feel like I have been neglegent and I don't like it. I also think we are going to be pretty busy between Speech, Physical, Feeding, and Developmental Play Therapies. In between all of that, I also hope to travel some with the girls - to NY to see Auntie, to Luray to see Poppy and Nanny, and to Franklin to see Mema and Grammy. Folks, it's going to be a very busy next few months!