The NAM Device

First a quick update on the big boys...

The "Big Boys" waiting to see the doctor

Jacob and Caleb are both getting big fast!  Since Ethan came home they are learning what it means to be big brothers.  Jacob is in love with his new baby brother and he loves to help me burp him.  Anytime I enter the room holding Ethan, Jacob rushes over to pat his back and every blanket in the room needs to be wrapped around him.  It really is very sweet!  Caleb ignored Ethan in the beginning, but he is really very gentle with him and has starting paying him a little more attention.  They are both working on using utensils, sometimes more effectively than others.  Jacob is trying to talk and mimics everything we say.  Caleb is a little less interested in talking, but mimics our movements.  Both of the boys love music with a good beat and love to dance!  We are trying to get the boys over being sick.  Caleb had Strep Throat and Jacob had Croup.  It was horrible listening to my baby try to breath through Croup!  I hope we do not have to deal with that again anytime soon.

Now on to Ethan; there is a little more going on in his little life:

At the Orthodontist getting NAM device

Eating unassisted

Our first step for Ethan was to get the Naso-Alveolar Molding Device (NAM).  We went in November to have a mold of his mouth done so the Orthodontist could make the device.  This is the same material they use on adults that you have to hold in your mouth while it slightly hardens.  Ethan did surprising well with this.  He did not cry, he only tried to spit the tray out.  We waited two weeks for the device to be made and then we were going to learn how to put the device in and clean it everyday.  The moment the doctor put the device in, Ethan spit up.  The device was gagging him.  The doctor tried to trim the device, but we still had no luck.  We tried again the next week and again, we did not have success.  So now the doctor wanted us to wait a month.  I was heartbroken.  I just wanted to be on the path to fixing Ethan's lip and we were not able to even start.  We waited a month and came back on January 16, 2012.  Jonathan and I both had our fingers crossed that he would be able to keep it in his mouth without gagging.  He still did not like the device, but at least he could keep it in his mouth without gagging.  So they showed us how to put the Fixodent on to hold the device in his mouth and told us we should clean it at least 2-3 times a day.  They also showed us where to place the tape on his lip to help move his lip.  The past month has been filled with ups and downs for me.  I was told he would eat so much better and burp better with this device.  And also that he would grow to love it and not want it out of his mouth.  The first day home with the NAM, Ethan was able to use his tongue to push against the bottle nipple and we did not have to assist him at all.  I cried tears of joy (see picture of me trying to hold the tears back)!  It was the first step, albeit a very tiny one, to his healing.  The NAM definitely helped him eat better.  The jury is still out on whether this has helped him burp better.  I don't even understand how that would work, but he burps fine so I do not really worry about that.  Now to the third claim; he will love it and will not want it out of his mouth.  I call BS on this one!  We have had the NAM a little over a mouth and he does NOT like it (do not let the beautiful smile on his face fool you, he was even happier when I took it out).  It doesn't fit properly and he is able to push it out unless we load it with Fixodent and the Fixodent is not really good for him since it contains Zinc.  There are times that is takes me three times to set the NAM in his mouth properly.  It is a very difficult thing for me to willing put something in his mouth that he hates and has a substance on it that isn't good for him.  At our last appointment I told him the NAM wasn't fitting well and he said that he would add some kind of liner to it that would help.  While I am skeptical that the liner will work, you can see from the pictures below that the NAM and the tape are doing their jobs in moving Ethan's lip, so I will just keep trusting that our doctor knows what is best.

Before the NAM

After one month of NAM

Cleft Education

The first thing I would like to say about Ethan is that he is the happiest baby I have ever known. He started laughing when he was just a month old and at two months he squeals with glee when asked if he is funny.

This post is really about sharing the information I have received so far on cleft repair. I will cover all in detail as we go through each step, but I will cover the high points here. I am happy to answer any questions about Ethan or the process he is going through. If someone has a question I do not have the answer to, I will find out.

So, what does a complete bilateral cleft lip and palate mean? Ethan does not have a roof in his mouth and his upper lip, under his nose, did not attach appropriately to the rest of his upper lip. What issues does this cause? The main issue for now is with feeding, since his upper lip is not attached, he cannot form a seal on a bottle and therefore he cannot suck (he definitely cannot nurse), even though he tries his hardest! Later in his life he will likely need some speech therapy, but this point seems minor to me. To overcome the feeding issue we used a special bottle called the Haberman bottle. The Haberman bottle has a very long nipple and instead of sucking on the bottle, we actually squeeze the nipple rhythmically while Ethan sucks. Unfortunately, when we squeeze a little too hard or not hard enough and this throws him off a bit.

Next, what are the steps to fix Ethan's cleft lip and palate? I am learning as we go, so I am sure some of this information will only be partially accurate because each child has a little different path.

1. Newborn - He will get a Naso-Alveolar Molding (NAM) Device. This should help him have more normal feeding patterns and also help move his pre-maxilla (the piece sticking out under his nose) back to the position it should be in.
2. 3 Months old - He will have a surgery to repair his lip and nose. During this surgery they will put tubes in his ears to keeps him from having ear infections. Ear infections are a very common problem for cleft palate babies. Luckily, Ethan has not had any ear infections yet.
3. 9 - 12 Months old - He will have his second surgery to close his palate.
4. Around 5 Years old - He will get a palatal expander that helps shape and widen his upper jaw arch and helps set-up his palate for his bone graft. He will start speech exercises as necessary and have hearing evaluations.
5. Around 7 Years old - Ethan will have a bone graft to fill in the dental ridge.
6. 7 - 12 Years old - Ethan will have Orthodontic treatment.
7. From 12 Years to final growth - If needed, they will perform additional surgeries to adjust his lip, nose, and scar. During this time he will likely need more Orthodontic treatment.
8. Around 18 Years old - This should be his final surgery and it is to his jaw. About 20-30% of cleft patients need this final surgery.

So that's the brief version of what lies ahead of my sweet Ethan. As each of these phases comes up I will have a better idea of what each step entails.