Max and his Cleft Palate

So four hours after Max was born the pediatrician came in to check him over, like they do with every baby. So she checked him over and all went well until she checked his mouth and suction and tongue and all that joy. That's when she discovered his was missing his soft palate. but here is how she told us.

"So everything is perfectly fine with your baby, however there is one concern. But don't worry he is perfectly healthy and it really isn't that big of a deal, he's a healthy guy. He has a cleft palate."

Seriously is that anyway to break the news to new parents? My thought was no he doesn't. He's perfect. Because me and my tired brain only remembered a cleft palate as being something that involved the splitting of the lip as well and Max's lips were attached beautifully!

But then she went on to explain he was missing the soft palate at the back of his mouth. She even showed it to us. Hence why breastfeeding was proving to be a challenge. He was having to work so hard to try and form a latch and keep the suction. She said to keep trying and he may eventually get it. The lactation consultant even came and worked with us for a while. He got so close so many times!

So they sent a referral up to the Alberta Children's Hospital in Calgary for us. When Max turned a week old we were on our way up there for his first appointment!

What news we got!

We got in at 1:00 and met with the plastic surgeon first. He's the one that will do the surgery on Max's cleft when he is 9-15 months old. It's pretty young yes but they want to get it done before he starts talking. Other wise that just starts a whole new problem for us with his speech. As it is when he starts the babbling phase and making sounds they did warn us that his will sound a little off. And that's all because of the roof of his mouth that is missing. That pesky little soft palate! He also explained the him getting a latch and maintaining it wouldn't ever happen. There is a small chance of it happening. With that news I dismissed the idea of BF and just took hold of the thought that I'll be pumping for a long time. (oh how i hate it! the perk is Dan gets to help do night feedings now. FANTASTIC! more sleep for me!). He also gave us the happy news that we will be coming up to Calgary at least once a month until his Palate is fixed and then some. And then basically we will still probably see them off and on until Max is 18! wow.

Then we met with a Pediatrician who checked him all over again and took a look at his mouth of course! She said he was doing wonderful and was quite a healthy guy. The only area they want to watch is his weight gain and eating, because it does take a little more work for him to eat. He has a special bottle called the Hauberman Bottle. It's got a longer nipple on it so to reach the back of his mouth and kind of "plug" the hole so that milk goes down his throat and not into his lungs. (though it still comes up outta his nose and it's kinda funny.. he doesn't like that too much.) This bottle also works by pressure not suction. So he just bites down on it and milk comes out. (Forget BFing now!!!)

Then a dietitian came in and took a look at how he was doing with the bottle and she was impressed. He's taken to it quite well and downs his food really well. (of course he does! my babies love food!)

Then we saw an Audiologist who took some tests on his ears to see the fluid build up. Because of the cleft his Eustachian tubes can't/won't drain properly so there is a little bit of fluid build up in his ears and he is more susceptible to ear infections. So after that news we met with an ENT.

The Ear Nose, Throat specialist met with us and said a lot of the same things everyone else did. But he did talk more about the ears and explained the whole Eustachian tube thing and how the soft palate is really what pulls your mouth together. It helps your ears to drain and your speech to not sound like its coming from your nose and all that. So from all his explaining we go in when Max is 3 months old and he will get tubes in his ears. And then after the palate surgery he will get another set of tubes in his ears and once those fall out he should be good to go and his Eustachian tubes should be able to work on their own.

After that the nurse came in and talked with us about feeding and if I wanted to borrow a pump from them. I was so brain dead because I myself had just gotten discharged from the hospital and lack of sleep I didn't fully understand what she was saying so Daniel had to tell her yes. Talk about brain dead! man. So we have one borrowed from them for free for as long as I need it!! SCORE! But it's pretty big and bulky so I've borrowed one that's more compact and use that when i'm out and about (thanks AMIE!) So I've still gotta get my own carry around one! The nurse also asked if we wanted to stay and meet with the Social Worker. But since she was running around, and we really have lots of family and friend support, and social workers are nuts, we said no and left. We got out of there at 4:00.

LONG LONG day.

So overall Max is a really healthy baby still. Might be a little slower on his weight gain but he's still perfect!

We go up in a week for a follow up and genetic testing lab work. Sounds like so much fun eh?
I'll update again soon!

MAX PICTURES!