Wednesday, May 13, 2009

12 month NICU follow up

So we had our 12mos (actually the boys are 13.5mos) NICU follow up. The last one was in January just before we went into the hospital and had the GJ feeding tubes put in. Since then they have made significant improvements. But not enough. We met with the Developmental Physician who says that their reflexes are fine, their tone is getting much better, but they are way way way way behind in their gross motor skills and oral and a little bit behind on some fine motor skills. No surprise, we knew this. But they are advising we see a neurologist and have an MRI done of their brains and blood work to determine or rule out any fragile X chromosomal syndrome disorders and karyotypes. Their stranger danger is so bad that they think this may be the clue, and everything else to do with their reflux, the GJ tubes has really confounded the situation and it makes their developmental improvements very slow. But all in all they show now other signs explaining why they aren't doing leaps and bounds more developmentally.

The Neurologist would be looking at the brain to determine what the gray matter and white matter are doing, any other issues that might prevent development and maybe even aggravating the reflux and spontaneous vomiting (though nothing near as bad as Sweater's boy Jaxon).

I'm so depressed. This is exactly the the kind of thing that I kept telling myself when I was pregnant and hormonal and already scared about having preemie twins that was an irrational fear and that these babies would have it rough in the beginning but it would all work out in the end. And naturally having read Sweater's post on her son Jax really makes me even more depressed. I know, I know we haven't had a diagnosis of anything yet, but it does put the worst thoughts in your head. And it is the NICU follow up doctors job to present the worst of it all to us so we have a place to grow from. And our PT and OT team from the State Infants and Toddlers program think that they are doing much better on the gross motor skills such that they will catch up eventually and are already talking about needing to scale back or discontinue the PT. We'll see what happens once the NICU follow up doctor sends the report to increase PT and OT but I think per the state's guidelines we're already maxed on our services. But the medical team still want to find out why things are falling in to place like they should.

We didn't even get to talk to them about why the boys aren't sleeping through the night and other things I can do to help that improve since they agreed crying it out isn't an option with the vomiting issue.

At least this time the NICU follow up doctor was nice and very understanding and went out of her way to make me feel like they know I'm doing everything I can for the boys, so my big stick with rusty nails to beat the doctors up with stayed tucked in the stroller basket. We start feeding clinic next Tuesday and Chiropractor maybe in two weeks. Basically we have no free time to have play dates and do fun things like normal kids.


Kim said...

I hate that you have to go through all of this. I really wish that you were able to spend more time just enjoying them. They're such sweet, sweet boys.. little miracles. With the best momma ever.

Jennifer said...

They just started feeling better with the tube adjustment, so I bet they start doing more "skillz" every day. Stuff just clicks one day and then they do all this new stuff in one day, ya know? Hey, my twins have been deemed Developmentally Disabled by the state of WA- what a hoot. They have social workers because they don't want to use a spoon! Still haven't felt like blogging about that... Oh, and your picture of the stick was the first thing to load on my screen and I LOL'd.

Blue Moon Mama said...

I don't mean to sound pollyanna-ish, but I do think it's important to take the advice of any doctor with a grain of salt. There are just so many unknowns, and doctors do seem to feel that part of their role is preparing people for a worst-case scenario. I hope that turns out to be the case.

Thinking of all 4 of you today.

Annie and Jason said...

I'm sorry the boys didn't do as well as you had hoped. Did they say why they're concerned now instead of earlier?

I wanted to tell you that you may want to just ask/bend the ear about the whole "motility" thing. Our specialist said the thing that tipped him off was the fact that Jax vomits so often with a J-Feed. Apparently reflux shouldn't really cause much vomiting when fed into the intestines. (sigh)...just thought I'd pass that info on. I'm going to just assume your boys have reflux and are getting better and better every single day until one day they are rockstars or some professional athlete :)

Did the boys score significantly under their adjusted age? I only ask because Jax's motor skills were around 5 months with an adjusted age just under 8 months and they didn't seem concerned beyond that he needed PT along with OT....I think with everything your boys have been thru, those therapists need to cut them a break!