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.