It was more like 2-4 appointments in one depending on how you count. First we saw audiology which did two tests that determined his hearing might be slightly impaired right now due to fluid in his ears. Don't worry. He can totally hear as he, without a shadow of a doubt, responds to sound. But this is super common in babies with clefts and can lead to increased ear infections and later could interfere more with hearing if not fixed.
Next, we saw the ENT (ear, nose, throat doctor) who reviewed audiology notes and told us he wanted to put tubes in E's ears. I pretty much knew this was going to happen but I secretly hoped E would be the baby to defy the odds and not need the tubes. The good news is that they can do it during his lip repair surgery in about five minutes so that they don't have to put him under anesthesia a separate time.
Then we met with the plastic surgeon Dr. Flores. He was really impressed by E's progress. I *think* it's been about ten years since he was at NYU, so they have continued improving NAM over the years. Dr. Flores was so pleased at how much things are in line that he said he would chat with the NYU orthodontists to see what they thought about bumping up E's surgery date from March 19. Even though I don't think we will bump it up even if given the choice, it's very reassuring to hear. Affirmation that this work is worth it. I will post this progress picture again because I am about to talk anatomy.
Left to right: pre-NAM to a month in to about a month ago. It's even better now. E's cleft is bilateral, so both sides of his lip and gumline didn't fuse. Because the NAM has pushed the center piece of gumline that was sticking out of his mouth back into his mouth and almost completely in place, the lip repair will be easier for the surgeon. He will form the philtrum (the skin above the lip that has the ridge in the middle) from the prolabium (the piece of separated "lip" that you see centered and just on top of his gumline that sticks out. I hope this makes sense. Sorry if it doesn't. Then he will connect the two side lip flaps to complete his upper lip.
He will also round and connect his nostrils to complete and close them. His nose won't need as much work later because the NAM has done so much work before his cartilage hardens. Finally he will hopefully connect both sides of the center piece of gumline to the lateral gumline segments. He may not or may only connect one side depending on how the segments line up by the time of surgery. I am hoping he can because then it could possibly reduce another surgery down the road.
I am fixated on reducing surgeries, but Dr. Flores assured us that NAM is still very much worthwhile even if those surgeries are later needed. One major thing it does is prevent a lot of orthodontic problems later. He explained more but I can't remember the details. Plus, I already mentioned the nose molding, which is a big benefit to NAM.
The surgery will take at least 4.5 hours, but I am expecting/preparing for 6 hours. He will have to stay overnight. Recovery is pretty rough from what we hear from other families. E won't be able to suck on anything (bottle, pacifier, his hands which are his favorite now, toys etc) for three weeks. His arms will be in braces to keep his hands from doing damage to the surgery site during that time. I am anticipating very little sleep for him and us during that time. We will have these special bottles that are basically containers that you squeeze to squirt milk down the back of his throat to eat.
Nate has taken the week of surgery off which is great. My mom is coming up for a few weeks to help, and my dad will join her at the end of that time for a few days. Plus Nate's parents will be around for the surgery so we will have some great help from the grandparents.
After we met with Dr. Flores, we met with a few other specialists but nothing much to report. We will have to go back to NY after the surgery 3-5 more times, but those will be spread out one trip per month if all goes well. We will have to get more nasal stints after surgery from NY to keep his nostrils from closing up. I am not sure why they don't have that at Riley. I wish now that I had asked. But once a month to NY isn't bad. This picture is exhausted E after his long morning. We did go see the pediatrician for his 4 month well check up that afternoon too. What a trooper!
We did get to go to NY this week. We were accompanied by my friend Marisa who has four kids of her own. She is great with babies naturally. It was great to spend the whole day with her and catch up on life! We have a lot in common, so we had no trouble finding things to talk about.
We ate pizza for lunch to make Nate jealous.
Marisa took this beautiful picture of E sleeping.
Precious.
Fortunately, we did not get stranded at LaGuardia. I feared we would when we arrived to the airport in the afternoon and most of the flights after ours we already cancelled. But we made it home in good time.
Last I will leave you with this picture of our Valentine.
He is pretty charming, if I may say so. Nate and I are so lucky and blessed to have this little guy.
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