Getting the NAM

Part of my plastic surgeon's procedure for fixing a cleft lip and palate is through a device called a  NAM (pronounced how it looks).  It is a Nasoaveolar Molding device, or, in other words, a retainer.  When I first learned about this, I was horrified.  No way was I going to stick this awful looking monster into my baby's mouth, put tape all over his sweet little face, only to rip it out every single day!  These heartless doctors obviously didn't have children of their own.

Despite my unwillingness to try it, I grudgingly drove an hour away to meet with the orthodontist when my son was about 2 weeks old.  When I got there, I met the orthodontist, Dr. Jones, and was relieved that he was so warm and friendly.  He explained that once the NAM was put into my son's mouth, I needed to come back EVERY WEEK for it to be adjusted.  Again, I was filled with dread, and REALLY didn't want to commit to such a huge commute.  I thought of all the excuses I'd come up with to cancel as frequently as I could, because two hours of driving every single week was a little much.

During that first visit, Dr. Jones made a mouth mold using putty.  It took a couple of tries, but when it was perfect, we were good to go.  Surprisingly, it wasn't a traumatic experience.  In fact, my son SLEPT during that process.  We were told to come back the next week, and the NAM would be ready to go.

 The day before my baby received his NAM, his premaxilla was turned and going up into his right nostril.  I'm pretty sure he wasn't able to breathe out of it.  His hard and soft palate had an extremely wide cleft, and rather than seeing the roof of his mouth, there was a gaping hole where his nasal septum was.  The NAM was going to act as a temporary roof to his mouth, which was going to make feeding him a whole heck of a lot easier.

Getting the NAM put in totally freaked me out.  My son's mouth was stretched out as the device was placed in.  It was a two person job, the orthodontist said, and again, I was overwhelmed with stress.  My husband worked all day long.  What if it accidentally came out while he was gone?!  I couldn't do this!!  I watched as Dr. Jones attached rubber bands to the retention buttons (the things that look like little walrus tusks, my husband jokes), and pull them tightly against his cheeks.  I needed to take it out every day to clean, and then to reattach it all over again.  I was handed a bag full of the supplies I would need:  base tape, retention tape, Fixodent, rubber bands, little gauze pads...seriously?  They expected me to do this EVERY DAY?!  I just wanted to go home and cry.  It might have been because I was still totally pumped full of post-pregnancy hormones topped off with hardly any sleep, but either way, it was too much.  I couldn't do it.  Maybe I'd just keep the thing in until my next appointment next week.
It might have worked, too, except that later that night, and I mean late, something happened, and the NAM came out.  NOOOOOOOOOOOOOO!!!!!  My husband had fallen asleep (his shift would start in a couple of hours), and I didn't have the heart to wake him.  It looked like I was on my own.  I laid my son down on the floor, and attached the teeny, tiny rubber bands to the retention tape by squishing them and then sliding them down each tape strip.  I used Vaseline to remove the previous retention tape, which luckily came off easily.  After cleaning off the NAM, I put the Fixodent on it (not too much, Dr. Jones advised), carefully dried off the inside of his mouth, then slid the NAM into place.  Whew!  It actually wasn't nearly as bad as it had looked earlier that day.  In fact, it reminded me of the retainer I had in junior high.  I attached the rubber bands (which were still attached to the retention tape) onto the retention buttons, and I pulled until the rubber bands were stretched to twice their original side.  It was official.  I had just put the NAM in all by myself!  I breathed deeply in great relief, and wiped my sweaty hands dry on my pajama pants.  Maybe I could do this, after all.

It took about a day before my baby was used to wearing the NAM.  He wasn't terribly fussy, but enough so that I spent the majority of the day cuddling with him.  After that, I don't think he really noticed he was wearing it.  Feeding suddenly got a whole lot easier on my part.  And the cutest part?  He puts himself to sleep sucking on it, almost as if it's his binkie.

After only 2 weeks with the NAM, his premaxilla was already starting to move down and get a little more centered!

 Every week, Dr. Jones would shave off a little bit of the NAM, and add some stuff to other parts of it, which slowly allowed the premaxilla to shift.  When it was finally centered after about 2 months, nasal stents were added, along with prolabium tape.  The prolabium is that flap of skin over the premaxilla, and pulling it down with tape was going to assist with lengthening the columella, or the little column that separates the nostrils.  If we didn't lengthen it, then my son's nose would remain flat.  The nasal stents were used to push his nostrils up, which would add shape to his nose.  I came home totally depressed, because now, instead of looking like a loveable little walrus, he now distinctly looked like a pig.  I was NOT okay with this change.  I missed his adorable, flat nose.  I avoided posting any pictures of his new look on facebook.  It was just too much to deal with.

3 months after wearing the NAM

After three months of the NAM, I finally figured some things out that would have been helpful earlier.  One of the most obvious ones is that when changing it daily, if the retention tape is tight enough, I DO NOT have to replace it!  Secondly, the base tape doesn't need to be all fancy.  We used a blister bandage, and I just cut it down the center length-wise so each cheek had a long, slender piece.  I just rounded off the edges to make it look nice.  Third, by attaching the rubber bands ahead of time to the retention tape, I could save a lot of time.  And fourth, I learned that when my baby suddenly became extremely fussy and refused to eat, there was most likely a sore in his mouth from the NAM.  I was told to look in his mouth and see where the sore was (a white bump where the NAM was hitting it wrong), and then to line it up against the NAM.  By identifying which part was causing the pain, I was able to feel it with my finger, and if it was a little sharp, I was able to file it down a little with my nail file. Dr. Jones instructed me to keep it out for several hours to allow the sore to heal, but we only made it a couple of hours since my son won't eat unless his NAM is in.

Today, we are four months in with the NAM.  His surgery is scheduled for the beginning of next month.  Typically, unilateral babies have their first lip surgery around 3 months, and bilateral babies have it between 4-6 months.  He will be nearly 6 months old for his first surgery.  One year after that, his soft palate will be repaired.  The road with the NAM hasn't necessarily been hard, but it has required a TON of patience. From start to finish on days I replace all of his tapes, it takes about 20 minutes. It's been getting a little harder lately since my baby has started to roll, and yanks his NAM out of his mouth at least once a day.  As long as the tape is tight and at a good angle, I don't always have to take it out.  Sometimes, it just pushes back into place.  Taping the prolabium has been difficult with the added materials to the nasal stents, so I have to thread it through the NAM before taping it to the rubber bands. My baby hates it, and I feel awful, like I'm torturing him. It's definitely become a 2-person job some days.  Sometimes, he just looks like a ridiculous tape face, and I get so frustrated at all the work that goes in to making him ready for surgery.  But aside from all of the annoyances, I know it's worth it, because it will lessen the scarring, and I know it's going to make surgery that much easier on him.