Our routine

Graham is supposed to wear the NAM 24 hours a day, 7 days a week. While I try to be good about keeping it on him, I do tend to stall a little bit when the tape comes off... or rather, when he rips the tape off. The process of replacing it is heart wrenching. You see the look of relief on his face when he gets it off, then the screams of agitation when it goes back on. I don't believe it hurts him. He doesn't have any sores and the appliance has not been adjusted and therefore is not moving anything right now. I am convinced all his fussing is simply pure agitation. Although we saw glimmers of him getting used to it, those are long gone. He hates it. There is no way around it. The last 2 night have been rough to say the least. Up until the NAM Graham has used his binky to go to sleep. Since the NAM he has refused anything in his mouth with it in. The biggest bummer is when I take it out to feed him before bed, he eats and falls sound asleep. The problem is, I have to get the NAM back in. It ALWAYS wakes him and ALWAYS sends him into a tizzy. I walk with him and pat him until he falls asleep and then try to gently lower him into his chair. Sometimes it works, most the time it doesn't and we start all over. And then we do it all over again at 3am and 6am when he wakes up to eat. I keep trying to get him to latch with it in but have had no success yet. It would be so much easier to just be able to leave it in all the time.

We have gotten into quite the routine with the taping.

1. First I gather all my supplies needed.

-the NAM, cleaned and dried

-cavilon barrier for his skin

-replicare, which is a tape to protect his fragile cheeks from the steri-strips

-steri-strips for both his lip and to hold the NAM in place.

-rubber bands

-rubber band block to prepare the NAM tape

2. I get Graham nice and calm with his binky and a tight swaddle. I usually do it in front of our big windows as he loves to look outside. The first step is to take a really good look in his mouth to make sure that there are no signs of redness or sores caused by the NAM. This time I did not need to replace the replicare on his cheeks but, if I did, this is when I would place that on. The replicare is a this piece of tape that acts as a barrier to the steri-strips. The steri-strips need to be changed frequently so this way we are not continually ripping them off his skin.

3. Next the steri-strip across his lip is placed. The goal of this is to try and guide the 2 closer together. If you look at his birth pictures you can tell that this simple taping method has produced a huge amount of change. I am sure to most this seems like minimal change, but to me it is huge. You can see that his gum has noticeably shifted down and is now actually touching the gum on the left hand side. His lip has been brought closer together and his left nare actually has some shape to it. Seeing these differences makes this process a tiny bit more tolerable.

Occasionally I can coerce a big old grin out of him.

It makes my heart melt.

4. The last step is the worst. I hate it with a passion, as does he. I prepare the rubber bands on the block by folding one steri-strip around each one. This is going to become the anchor that will hold the NAM in place. The NAM is gently placed in his mouth and secured with the tape and rubber bands... and then the crying begins. Although he still hates it, the amount of time he cries gets a little shorter each day. I am sure that will all change tomorrow when the nasal wire is added. My stomach is already in knots.