Good News

Yesterday, we met with the cleft palate team and were blessed with some good news. Henry has Pierre-Robin Sequence (or syndrome). This means that he was born with a cleft palate and small jaw. Again, don't look this up on-line... quite often this is accompanied by many other genetic problems, but Henry only has these two issues: the cleft palate and small jaw. Pierre-Robin is just a label for that.

Henry has a small cleft palate. It only involves his soft palate, not the hard palate. (so the hard part on the top of your mouth is all there, but the soft part in the way back of your mouth... that's what Henry is missing). To me, his cleft looked so big... but hearing that it's actually small is a great relief. (I suppose anything looks big in such a tiny mouth). The cleft palate is easily surgically fixable, and will probably happen around 9-12 months of age.

His jaw is small. This makes his normal, baby sized tongue, sit far back in his throat. So, he occasionally chokes on his tongue. This makes sleeping on his back tricky. So, he sleeps on his side or tummy right now. The doctor said that hopefully, Henry's jaw will grow to normal size within the year. He probably won't need surgery to fix it.

The great news is that the geneticist doesn't think that Henry has a genetic anomaly that caused the Pierre-Robin. He seems to think that when his jaw and palate were forming, in utero, he was just positioned funny, so it didn't grow right. Maybe his hand was up (like he was posing like "The Thinker") and just didn't give his jaw room to grow. Crazy to think about... Henry did this to himself :)

So, goals to get him home:
1. Henry needs to eat. Since he doesn't have part of his soft palate, it's tricky for him to suck on a bottle. So, we are learning to feed him with a special bottle. Since he's never had his soft palate, for him, this is just learning how to eat. For us, it's learning how to position him so he doesn't choke, and how to use the bottle so he gets enough food. He is doing better each day, just a learning process. He eats every three hours, so Lucas and I are trying to alternate feedings, trying to be at the hospital as much as possible, while keeping a "normal" schedule for Owen.

2. Henry needs to breath. Seems so basic, but since he occasionally chokes on his tongue, he
needs to get stronger to keep it in the right spot. We also need to learn to position him to keep this from happening. (like he can't sleep on his back, rather his side or stomach). Again, this is a learning process for him and us. He MIGHT need a little surgery to help him out... but we are giving him more time to figure this out.

3. He was born with teeth. Crazy I know, but he already has "natal teeth". They grow in very loose, so will need pulled so they don't fall out and he chokes on them. A very minor thing, that we will figure out on Monday. He will still grow his baby teeth and adult teeth... he just has three sets of bottom teeth!

Overall, he is doing very well. Our current goal is to go home on Thursday. But the doctors keep reassuring us that they won't discharge him until we are all ready. While I want him home today, I am very thankful he is still getting such close monitoring!

If you have any questions, feel free to ask.

Here is Henry yesterday. They stopped his IV fluids, so he gets to wear real clothes!!

Proud papa and baby boy!

Me and my baby.

Sweet sleeping boys. Last night Lucas just held Henry and sang to him... it's so nice to feel comfortable enough with him to hold him "like a real baby".

And, here's my cheese-ball. Owen was dancing while in a bucket... he thought he was quite clever!

My sister Suzi is in town which is WONDERFUL. This morning Lucas took the morning feedings with Henry, while I stayed home with Owen. Suzi, Owen and I went and played at Munchkin Playland, then home for more play and lunch. Trying to give Owen a sense of "normalcy" and getting to the hospital as often as possible, well... it's tricky. But so far, we are doing OK. By the time night rolls around I am exhausted. But, we are getting a solid night sleep. If Henry was home, we'd be up every three hours! So, one way or another, I'd be exhausted anyhow. I'm going to the hospital with Suzi this afternoon... I should have more pictures to post then!