Submucous Cleft Palate - What the heck is that!

That is exactly what I thought when I heard those words...Lets start the story...

August 2008 - we get a new speech because our old one never shows up. She comes to our house and does the basic evaluation with the boys. I was a little steamed because I felt we were starting all over from scratch. Within the first hour she asks if the boys have allergies. I told her not that we were aware of. She states that she hears a nasally sound coming from the boys and that she suggests that we get them checked out by and ENT (Ear, Nose and Throat dr)just to rule out that there is nothing going on there. So I make the appointment thinking nothing is wrong and we are going to waste $30 in co-pays for them to say nothing is wrong they are perfectly healthy!

September 2008 - We go to ENT's office, fill out mounds of paperwork times two, I have two tired two year olds (can you feel the stress - LOL) We get in to see the dr and they ask a million questions. He looks in Justins ears first, then Joshua's. Justin has tons of fluid in his right ear which explains why he failed the hearing tests. Joshua's is fine, just a little fluid, but not a lot. Then he looks in their mouths and says, "So when did they have surgery" while still looking in their mouths....I said "what?" and he repeated himself. I told him they had never had surgery and asked why he thought they did....He then proceeded to tell me that they were both born with a submucous cleft palate and I said "a what?" So he showed me in their mouths and sure enough there is deformaty on the roof of their mouths and in fact they both have what they call a bifid uvula. this is where the roof of the mouth does not come together properly and causes them to have either two complete separate uvulas or one that is connected at the top but split at the bottom.

Joshua has two separate uvula, Justin's looks like a snake tongue, it's connected at the top and split at the bottom like a snakes tonge is forked. You can read about it more here http://www.cleftline.org/publications/submucous

The doctor asked about four times if I were sure they had never had surgery, because the scaring on the roof of their mouth is indicative of having surgery. Albiet it didn't heal properly, but it was fused together. Justin actually has a little dimple (hole) above his uvula. I finally told the doctor "I don't know how religious you are, but the only surgery they could have had is divine sugery, because they've never had any medical surgery". He kind of looked at me funny, but the nurse smiled. This is the only way I can explain any of this....a divine miracle.

It's kind of crazy and I was in shock and disbelief. The doctor kept asking me how long they were in NICU and all kinds of questions. Our question was how could the doctors in the NICU miss this. According to the doctor, this is common in premie babies and he thinks they should have checked for this. Especially with their feeding issues, swallowing, choking and subsequent ear infections over their first year of life. It explains so many things. It explains why they could never latch on very strong, which all the doctors told us that was normal in premies. So we believed them. It explains why they got choked very easily and why we had to use premie nipples for almost the whole first year of their life. And it explains why the speech delay....

However, the ENT is amazed at how well they are doing and have over come this on their own. He contributes it to a few things we did when they were little. We never laid them down while they were taking a bottle. We held them on an angle and we proped their beds up on a slight angle under the mattess. He thinks these few things we did on our own helped them not have as many ear infections as they had. Also the fact that they were speaking at all was amazing to him with the amount of problems they had going on.

Justin's left ear was so full of old fluid, he couldn't explain why it wasn't infected. So he gave him Nasonex to try for three weeks and if it wasn't cleared up, he recommended Justin for ear tubes. We went back in at the end of September only to find out there was no change in the fluid - so off to surgery we went.....

October 9, 2008 - Justin was set for surgery - we waited longer to see the doctor than the surgery took. About 10 minutes and it was all over. First words out of Justin's mouth after surgery was "where's Joshie". They can't be away from each other for very long. This was the first time they were apart for a long period of time. After surgery, we were going to go home and take a nap and leave Joshua at my sisters house for a bit, but Justin was so adiment on finding Josh that we thought it would be a good idea to get Joshua and put them both down for a nap....

Follow up visit went well for both boys - no fluid at all. Joshua's went away on it's own without getting infected! Another shock to the doctor (isn't God amazing!) He would have been scheduled for tubes next....so far so good though!

December 3, 2008 - both boys passed their hearing tests with flying colors! Just pray the tubes stay in place and that Joshua doesn't get any ear infections....we tend to keep their ears covered all the time now, especially in the cold...

So that is the long story, but felt I needed to document things for them....so now when they don't come when I call them I know they are ignoring me on purpose, not that they can't hear me!