Monday, November 22, 2010

Week 3...Just Keep Moving Along.

Well, we certainly had a much better week this week. Despite having more tape added to her treatment, she is tolerating it pretty well. Before the one piece of tape across the top of her lip (called a "mustache" for obvious reasons) was pulling her upper jaw in one direction. The addition of a second piece of mustache now pulls her upper jaw in both directions...inward, toward the middle of her nose. This is going to further her progress.

How is her progress you ask? Well, when Kaylee was born her cleft was measured. It measured 12 millimeters. Since we started her NAM treatment her cleft has been reduced by 4 millimeters. So now, she is at 8 millimeters. Her dentist said that she didn't expect that kind of movement yet, and she is very glad that Kaylee, myself and Grant are so dedicated to making this treatment work.

Tomorrow we begin week 4 of her NAM treatment. In addition to that my Monster is getting her first shots. All in the same day, all due to scheduling conflicts with her doctors. I wanted to do them each on different days to avoid having the most pissed off two month old in the world tomorrow, but it didn't work for them. So, oh well I suppose. Oh, Kaylee had her weigh in last week with her nutritionist...11lbs and 12oz. She has gained almost 3 pounds since birth, and is the 76th percentile (out of 100 2 month olds she is heavier than 76 of them). This is a good thing, it means she is healthy.

Anyway, without further is her 3rd week picture. And a few of her smiling just to lighten up the day!

Week Three.

Smiling at Mommy.

 Just a little grin.

Sunday, November 14, 2010

Week 2...Oh, the pain!

So, it has been two weeks since we've had Kaylee's NAM in. And it has been two weeks of pure anguish for her. Imagine (anyone who has had braces will agree with this) that your upper jaw is being stretched in one direction and there is nothing you can do about it, the pain that would cause is immense. Now, imagine that you are barely two months old going through that. Talk about pain.

By doctor's orders we are only allowed to give her one does of infant Tylenol per day, so we have to give it to her wisely (or as wisely as we possibly can). As a result we have a grumpy baby most of the day. Yesterday she cried for about four hours solid - no breaks - before she finally fell asleep for 20 minutes; only to wake up again to be fed and then cry for another few hours solid. Some might say she is colicky, but take the NAM tape off of her and the tears, crying, and screaming stop dead in their tracks.

As much as my Monster is in pain, the benefits outweigh the discomfort. Fewer surgeries, more facial symmetry, and a healthy childhood are all more important in the long run and let's face it: She will not remember this. It is only because of that fact that I allow this to continue. It hurts me to get up every morning, remove the tape and the NAM to clean it and then shove it back in her mouth, then pull and tape her cheeks. Every morning she screams in pain, and yet it needs to be done.

In the end, it will be worth it. If you scroll down to one of her first pics you can see how wide her cleft was. It was so wide that the good shaped nostril on her nose (her right side) was smushed (which I know isn't a word, but it is the most appropriate here) and you couldn't see up into her nasal cavity like a normal person's; it was just a tiny little slit that no oxygen could get through and she had to breathe through her mouth exclusively. Now - the nostril has opened up just a bit and she can actually breathe through her nose! She is getting better oxygen while she sleeps, and she is eating better because she doesn't have to do everything through her mouth.

Without the tape, notice her right nostril is open!

Here, they had to pry open her nostril to put the feeding tube in.
If you look hard enough at the two pictures you can see the width of her cleft has been reduced a whole lot! I just noticed it myself after looking at the pics side by side. Obviously, what she has to go through is so worth it. And since she is growing steadily I am sure the doctor will allow us to give her just a bit more infant Tylenol. I will be sure to ask at our next visit.

So, there you have it. Week two complete; roughly 18 more to go (give or take a couple depending on what the dentist says). Tune in next week, we'll have a new picture up, and a new batch of experiences I am sure. Thanks for reading,

Jess, Grant and the Kaylee Monster.

Friday, November 12, 2010

The First Stage...Continued.

Sorry, it has been a while since I've written. It has been a busy couple of weeks for us!

So, our story so far: we had to reschedule Kaylee's NAM appointment and as of two weeks ago Kaylee had her NAM placed. Our first appointment was a meet and greet and then the molding of her mouth. Her dentist is a very nice woman, who is very talented with this kind of procedure. The fitting was the most horrible thing I have had to do with my daughter since she was in the NICU. I had to hold her down so they could put a mold with silly putty in it to take the impression of her mouth. She was not happy at all. I cried. But it is worth it in the end.

Here is the NAM itself:

Before her NAM was placed:

After NAM placed:

Week one:

So far, the doctor says thins are going well. The main goal of the NAM is to move her upper jaw into normal alignment. Once her gums have moved closer together she'll have her first surgery to close her lip, and maybe her gum line. Her first surgery won't happen until she is at least 5 months old probably. Until then my strong little girl is developing as normally as any other newborn would.

She started smiling this week, and she is sleeping for longer and longer stretches of time (for which both my husband and I are very thankful).