So, yesterday we had our second appointment with Gabriel's plastic surgeon. Chad was unable to attend, so my sister graciously went along. All I knew was that I couldn't go by myself. My mom and I are much the same in that the first thing we hear that is negative - we stop listening altogether. My sister has always been one of those people who can stifle any emotion to get through the conversation. An admirable trait really. At any rate, not likely what you came here to read about!
When we had our first ultrasound around 20 weeks and found out about the clefts, we went to visit the plastic surgeon. At that time, he indicated that because we had no way to truly know the severity of the clefts, he would outline everything for a worst-case scenario and we would continue to pray for the best. I knew things were bad on Monday when he outlined the exact same scenario as before - we truly are facing the worst-case scenario where Gabriel's clefts are concerned.
He first confirmed that the clefts are complete and the premaxilla is protruding - this I already knew. Then we talked about the palate - which again, we are only speculating how severe it is - and based on his experience, he expects that the palate is open in both the hard and soft palate, on both sides of the mouth (which has been confirmed) and that the uvula (the little dangling thing in the back of your throat) is also likely split in half.
The plan of attack at this point is still to implant the Latham Device at 3 weeks old - which he said the screw has to be turned by us once a day!!!! I thought it was once a week - see, proof I stopped listening the first time. Between 3 and 5 months old, he will close the gaps in the gums and do a preliminary lip reconstruction. This will not close the gaps in the lips entirely, but will make the full-blown reconstruction easier. Said full-blown reconstruction will occur between 9 and 12 months of age. I know what you are thinking - you have already heard all of this. How could this be worst-case scenario if all work is done by 1 year old? Well, that's where the worst in worst-case scenario comes in.
Our surgeon indicated that we should be prepared for Gabriel to have surgeries all the way into his late teen years. With bilateral babies, there is extra work that always has to be done due to the palate being open in two places. There will be major orthodontic work that has to happen. When the premaxilla is protruding (as Gabriel's is), the lower jaw is going to grow at a faster rate than the upper jaw. So, at some point when his mouth has stopped growing, the lower jaw will be reset to correct this. Gabriel will also likely have to have a nose job at 17 or 18 years of age. A nose job!!!! I was talking to Chad afterwards about how much this upset me because that means he will not have a perfect nose through the hard parts of school and that everyone will know when he has had a nose job. It's not like we live in LA and give our kids a new nose for their sweet 16!!!!! Sigh.
Needless to say, I have felt slightly defeated since yesterday. I don't know what I was expecting to hear. Chad wasn't at all surprised. Perhaps it is the eternal optimist in me. For those of you who know me well, stop laughing...
Funny thing about all this is, my dad went to my niece's school function on Friday and met the father of a 5th grader who had the remnants of a cleft lip. His dad said he just recently had his 11th surgery!!!! I told my dad I didn't want to hear anymore. I am truly not trying to feel sorry about all this. I am working hard to find my strength. But as time draws near, I find my fears are killing off every other emotion I have. I guess it's a good thing I have 2 weeks and a day to get my shit together (as my mom often tells me to do) and remember that I am strong enough to get my son through this.
No comments:
Post a Comment