NAM update

1 month stats

Weight: 8 pounds 10 ounces (25th percentile)

Length: 21 inches (25th percentile)

Head: 37 cm (25th percentile)

Last tuesday was to be the day we started NAM. While I was not am not crazy about the device for the simple fact that it is somthing on my sweet little baby's face, I have resigned myself to the fact that this is absolutley going to give us the best outcome. I mean, come on, this is my little guys face, of course it is worth it!

However, G- man decided to through a little wrench on our plans...

Since Graham was born we have noticed that he was quite a loud breather, but the doctor's reassured us that this was to be expected. Over the past few weeks this has gotten worse, with less of a "noisy breathing" sound and more of an obstructed airway sound. I say "obstructed" because it appears very difficult for him to move air during these times through his nose, yet he is able to catch a few gasps through his mouth until I can get up and calm him. The puzzling thing is that he does not do it all the time. He has perfectly good hours of sleep with little to no noise interrupted by these intermittent struggles. There seems to be no rhyme or reason. We have him sleeping upright with the thought that maybe it is reflux but it seems to do no real benefit as when he is in bed with us he is no worse.

When we went in to our clinic visit I expressed my concern to the dentist. Needless to say, he was not comfortable starting the NAM with these unidentified breathing issues. And, unfortunately the whole craniofacial team was out for the week. Fortunately, we got an appointment set up for friday with a new (to us) doctor and headed over to our previously scheduled 1 month pediatrician visit.

Dr. C was concerned and agreed with not starting the process. She gave us the option of being admitted to the hospital and "observed" on monitors. We all know that this comes with it's risks too and I was not so much a fan. We toyed with the idea of starting a PPI (proton pump inhibitor, aka. anti-reflux medication), but we NICU nurses know that there is a lot of controversy over weather or not they really work in infants. In the end we agreed that we would watch him a little longer to see if maybe it is a passing thing and see what craniofacial had to say on friday. One thing Dr. C was not so concerned about was his 27 ounce weight gain in only 22 days! And she wanted me to start supplementing with bottles! Pa-sha!

The next 2 nights were relatively uneventful and we met with Kelly on friday. After a lengthy discussion and a overwhelmingly normal exam we decided to start Graham on some Zantac to see if there was any improvement. She felt comfortable with following through and starting the NAM with the knowledge that it can always be taken out should Graham get worse. She also wanted us to continue the nystatin we were on for thrush to make sure that there was no evidence of it when we introduced the device.

So... while I don't feel there is any huge improvement with the Zantac (if anything he has been much more spitty) he has only had 1 self resolved period of difficult breathing. Tomorrow we will visit the dentist, Dr. K and I assume he is going to be ready to start. Graham's cleft has made a huge improvement with the taping and I am nervous, yet excited to see the progress with the NAM.

Last night as I lay Graham down to administer his medications I thought to myself, never in a million years did I ever picture this. This is what I do at work. My little boy is not supposed to need all this stuff. I am not supposed to be spending my maternity leave in doctor's offices and hospitals, worrying about wether my little man is going to stop breathing, putting cavilon, replicare and steri-strips on his face daily, and administering his medications.

But now this isn't my work, this is my life. This is my perfect littlest guy and I wouldn't have it any other way. I would do anything for him and I can't agree any more with Dan when he says "he was meant for us".