We have a date

First let me say that those tools do not go in Simon's mouth, thank goodness. They are used to adjust the NAM device that he is wearing to reshape his nose and bring the cleft palate/gumline closer together. We went in for our regular adjustment, and after another infuriating 45 minute wait in the exam room, we finally got the orthodontist, plastic surgeon and nurse coordinator in the same room at the same time!

We have a date for Simon's first surgery: Thursday, August 5. Three weeks from now, when he will be 13 weeks old. Everything is going very smoothly and exactly according to the schedule outline we were told from the beginning, but it is just agonizing waiting for it all to come together.

In spite of my complaining about the waiting and the difficulty of dealing with the NAM, the craniofacial/cleft team at Rush has been great to us. Very encouraging and helpful, and we have had a chance to see families at other stages of the process while we are in the offices, all the way up through 16 years old.

This first surgery will be to close his lip and build a nasal floor on the right side, using all existing tissue that will be repositioned. He will also probably have the soft palate closed at the back of his mouth, and the ENT will examine him and place ear tubes if necessary (to relieve buildup of fluid in the eardrum). His palate will not be repaired now. That is the second surgery, which will probably be around 1 year old.

Here is a video produced by another hospital, which explains a bit about the process. There are a few shots from the surgery itself, which can be a little hard to watch, but it is just very brief.

Hurry up and wait

We have been doing a lot of waiting at doctor's offices since Simon was born. Most of all, we've been waiting to hear when his first surgery will be. And we're still waiting. But today the orthodontist said he's making enough progress that he will recommend to the surgeon that we schedule a date. We still have to wait 2 weeks for the next appointment before we get the date, but it will probably be 4 weeks from now more or less, when he is 12 weeks old.

It's great to feel like we're making progress, and we're very anxious to be done using the NAM (palatal obdurator) which is helping shape his nose and narrow his palate cleft. We were not pleased to hear that after surgery he will have to wear a nasal stent for another 2-3 months to continue shaping the nostril on the cleft side, since that means more devices to clean and more tape on his face, but obviously we want to do everything we can to minimize the need for "nose revision" surgery later on.

At today's visit, we also were able to meet a 16 year old boy who was born with a similar cleft and see what his palate and gumline look like now. He was gracious enough to let us take a look while he was getting his braces adjusted. The palate looks pretty different from a non-cleft palate, but no one is going to be looking at that. The gumline looks great and he seemed like a happy, well-adjusted kid. Then we did our part and went to show off Simon to a couple that had a 9 day old baby so they could see how the NAM looks and how comfortable Simon is wearing it.

Simon was a good sport about all of it, and only cried after an hour when he got hungry.

Ears, Nose and Throat

It's been another busy week for Simon. On Wednesday we went to Rush to have his weekly NAM adjustment - he's growing so fast at this stage he needs it fine-tuned every 7-10 days. We can already see that it's making a difference in the shape of his nose when we have it out to clean it. He has adjusted to eating with it in, and actually he is eating more than ever now. He has gained almost 2 pounds in his first month, so he is right on schedule.

Today we went to see the pediatric Ear, Nose and Throat specialist (ENT) to check out his ears. The doctor used special tools to look into his tiny ears. He has some fluid built up in his inner ear already, which is very common for cleft kids. Luckily he does not have an ear infection yet, but we will probably have them put tubes in his eardrums during his lip surgery at 3 months so that we can make sure his ears are draining properly. That should reduce the risk of ear infection and guard against hearing problems, which is very important during the time when he is developing speech. The tubes will not be visible, and they only take about 15 minutes to put in.

The ear tubes eventually work their way out of the ears on their own, and he will eventually have 3 or 4 sets of tubes over the course of his childhood until he is maybe 8 years old or so. By then his palate muscles will develop to the point where his ears will drain without the aid of tubes.

In fun news, Sy is giving us dreamy smiles as he drifts off to sleep. We're hoping for real waking smiles soon. His Mom-Mom was able to feed him his bottle the other day, the first time someone other than mom and dad has succeeded in a whole feeding. I think pretty soon he'll be a chubby little dude.

nasoalveolar molding device (NAM)

Here's a closer look at his "retainer." The little ball on the end of the wire lifts and shapes his nostril while the plate brings his palate and gumline closer together.

The Damn NAM

Yesterday was not a lot of fun. We headed over to Rush in the morning to pick up Simon's NAM. It's much bigger and bulkier than we thought it was going to be. And needless to say, Simon did not appreciate having it stuffed in his face. Once it was installed, it was time to try to feed him. That didn't go well...Simon basically choked and gagged the whole time, seemingly unable to open his little mouth wide enough to allow the bottle to get through. Even their pro cleft baby-feeding nurse, dubbed the "Baby Whisperer," couldn't get him to take in and swallow anything. Instead, he just let the milk dribble all over his nice little outfit.

For the next couple of feedings after getting the NAM, we basically had to pull the thing out, feed him, and then put the NAM back in, with Simon screaming his little head off the entire time. It's an incredibly messy process because it's held in with denture cream. So he gets this goop all over his mouth which is really hard to clean. Yuck. And of course they make this denture cream pink so that you can't even really tell where it is until you finally mop up a big gooey gob from somewhere in the back of his mouth with a q-tip.

Miraculously, and thankfully, he finally "figured it out" yesterday evening, at the exact moment when Aunt Birdie walked in the door. Something about her presence made him relax and just start eating. Since then, he's been feeding pretty well, and much more quickly. He was boring us to tears the last few days, spending 40 minutes to suck down a couple ounces of milk. He's cute and all, but watching him suck on a bottle for 40 minutes every 2.5 hours gets old pretty quick, especially in the wee hours of the morning. But with the NAM, he's sucking down 2-3 ounces in 15 minutes. So that's ONE good thing about the NAM.

Anyway, Simon got through the day. The nurses made a point of mentioning several times that he's incredibly strong and willing to fight. Betsy and I were well aware that he's a powerful little guy, but didn't really have a good frame of reference. The nurses confirmed for us that he's particularly punchy and loud. The first little signs of his personality are starting to come through...

And so it begins...

Simon had a busy day today. Yesterday, the little tooth at the site of the cleft in his gumline was getting really irritated, so we called the cleft team and they moved up his next appointment to this morning. We headed over to Rush first thing in the morning. The orthodontist pulled his little tooth, which was a big relief both for us and for Simon. I don't think it was very painful for him...it's not like pulling an adult tooth. This one was just hanging by a thread and had to go. They were nice enough to give us his tooth after they pulled it, presenting it in a surprisingly cute little treasure box. We'll put it under a pillow tonight and see what happens.

While we were there, they also took an impression of his mouth for the NAM device. The NAM is basically a retainer with a little ball on the end that goes into his right nostril, helping to reshape the nose before his lip is repaired. We're supposed to head back in on Friday to pick up the NAM, learn how to install it, clean it, feed with it, etc., and then he'll wear it until the lip surgery later this year.

The whole process of pulling the tooth and taking the impression lasted only a few minutes, and although the Little Dude cried through the whole thing, he was surprisingly calm afterwards. I like to think he was relieved to have that irritated tooth out of his mouth.

So the process of fixing up his little face really got started today. On the one hand, it's a relief to get the process going, but on the other hand, it's a little sad to see all the poking and prodding underway. For his first couple of weeks, Simon was pretty content to just hang out and be himself, cleft and all, without any tape on his face or any weird dental devices in his mouth. But we trust that one day he'll be glad we put him through all this.