Nasoalveolar Molding Device (NAM)

Here are a couple of pictures of the NAM. These are from late August,so keep in mind the NAM has changed a lot since it was originally put in Emily's mouth. Originally the NAM did not have the nasal stents. Also,the stents were much smaller. I wish now that I'd taken pictures of the NAM after each adjustment so that I could see the progression from when she first got it in on 4/21 to the present. I'm putting this post back in with the April posts but will link to it throughout the blog.


Top view of the NAM. This is the shape of the cleft in Emily's palate.


Side view of the NAM. Look at those honking stents! They look like jelly beans now.

The hole in the center of the NAM is for airflow in case her nasal passages become obstructed, but the nasal stents actually help to open up her airway (another bonus of the NAM). The indentation down the center of the NAM fits over her nasal septum which runs down the center of her mouth. I'd originally thought her nasal septum was a piece of palate, but Dr. Grayson set me right on that. Emily has no palate tissue at all and so the nasal septum is exposed. There was a huge sore on her nasal septum when we first brought Emily into NYU when she was six days old. This was from her tongue rubbing up against the septum which is normally protected by the bony palate. The NAM protects her septum (yet ANOTHER bonus) and we haven't seen any sores in her mouth really since the first couple of weeks she had the NAM.

NAM Appt. #6

Emily's appointment went very well today. Dr. Grayson (the orthodontist who does her adjustments) said she her premaxilla (the segment of her gums that juts out just under her nose where her first four teeth will come in) is moving into place. The columella is already stretching and because her premaxilla has moved so much we can ease up on the tension of her cheek tapes. Jim (Emily's papa and my husband) came up with a novel way to tape up Emily's prolabium (that's the tape just beneath her nose that's meant to stretch her columella). Dr. Grayson said it was cool and very simple. He thinks if it works that they will start showing other parents the technique!!

Smiling (picture)

Emily is really starting to smile now. Even though she's sick with a cold, she spent some time hanging out on the rug with Ana (big sister) who is three, cooing and smiling. We took the NAM out because the Tegaderm (that's this thin tape we put on her cheeks to protect her skin from the white tape strips called Steri-strips) just plain quit. There's no way that stuff lasts a week! We find we change it every 3 days or so when we give her a bath.

Emily's first cold

Emily was very restless last night and cranky this morning. Very unlike her. I noticed her eyes were watery and thought she may be sick. I took her to her pediatrician and sure enough she has a cold. Her ears looked ok, so I just need to watch her temperature. She weighs 9 lbs 14 oz. That's a full pound up from her appointment on 5/10 - very good!

Taping the Prolabium

In my previous post I mentioned that Jim, my husband, came up with a way of taping Emily's prolabium that is much easier than what they showed us at NYU. We have been using this technique for months now (I'm back-dating this post) and I have decided to write a step-by-step guide on how to do this, complete with photo's, for other parents who would like to try the technique.

Summary of technique: Take two rubberbands (elastics) and attach them to each other using a slip knot. Then fold a piece of Steri-Strip over the knot. If you cut one Steri-Strip into four pieces, then you can make four prolabium tapes. You will not be folding the STeri-Strip in half, but just fold it over enough on the knot so it is secure and leave a bit of Steri-Strip sticking up (with the backing on). This sticky part is what gets stuck on the baby's prolabium. Here's an illustrated guide.

Create the slip-knot using two elastics...

I use a pair of scissors to hold the first rubber band..


Then I slip the second rubberband throughthe first and loop it into a knot.


Once the rubberbands are knotted together, you can pull them across the scissors and just fold the tape over the knot.


Here is the end result on Emily's prolabium. The part that's sticking to her skin is not folded and so the Steri-Strip is still sticky. I put glue on her Prolabium to keep the tape from coming off due to saliva.

NAM Appt. #5

Amy, Emily's Aunt and my sister-in-law, met me at the hospital today. The appointment was about two hours - we got a new piece of tape on the NAM. This one is to pull the columella (that piece of skin in between her nostrils) down so that it stretches. The longer the columella, the better result we'll get with the surgery. The taping is very complicated, or rather difficult to do and you need to glue it to the space below her nose (called the "prolabium"). WhenI got home, Jim took one look at it and figured out a much simpler way to do it. I took pictures of it and emailed it to Dr. Grayson and he thinks it's fine to do it our way.

Nasal Stents

Day 2 with the stents and no apparent irritation though sometimes she gets a finger caught in them. She smiled at me today - I swear and not even a month old yet. She slept poor as f*** last night though. I'm going to try to start a feeding schedule from here on.

NAM Appt. #4

Fourth week at NYU and third week with the NAM. Emily got her nasal stents in today - we were at NYU for over four hours. It sucked because I was so tired, but it was actually kind of relaxing otherwise. I went in by myself (Jim stayed home with Ana). Emily was really good. She didn't cry much at all except when one nurse held her arms above her head - she hates that! There were two students, one clincial fellow and a nurse plus Dr. Grayson all hovering around her and she did just fine.