March for Babies

March of Dimes is not my favorite charity of all time. Sometimes their advertising annoys me. It seems to me that if all preemies turn out as well as the ones that they pick for ambassadors, why should we bother fighting prematurity? If all preemie moms are drug addicts who don't seek prenatal care, will more education about premature birth really help? If it's just a rough few months in the NICU and then life is normal, why bother?

So why do you now see a link to my March for Babies fundraising page on my blog?

Because all preemies don't turn out fine. Many of them, particularly the very early ones like Noah, end up with life long disabilities and March of Dimes wants to change that. They research treatments for things that can be debilitating for preemies like chronic lung disease, and they look for cures to many of the pregnancy complications that can cause babies to come earlier than they should. Lots of people think that if moms would just take better care of themselves, then premature birth would just disappear, but that's just not true. I wasn't a teen mother. I ate healthy foods, sought regular prenatal care, and didn't smoke or drink. And yet at 24 weeks I developed HELLP Syndrome and almost died.
But there's more. March of Dimes doesn't just try to stop premature birth, they also support families that are dealing with it. Noah started out at a wonderful local NICU where I felt loved and supported, but after two months he was transfered to a bigger regional NICU that could handle his surgical needs. I felt lost and alone. My support system was 3 hours away and I couldn't even figure out how to get to the hospital without turning around in a parking lot. Tthe family coordinator came to see me. She told me how to get to the hospital without getting lost, where to find the cafeteria, and invited me to a March of Dimes NICU Family Support event. Suddenly I wasn't alone anymore. The March of Dimes NICU Family Support program helped me get through that awful time when I was so alone.
So yes, the March of Dimes' approach sometimes really annoys me. When I see commercials on TV that tell me that if I would just get prenatal care my baby would be fat, healthy and normal I burn with anger at their insensitivity. But the fact is that both Noah and I would not have survived the NICU without them. And that it why I'm going to March for Babies.

Please donate to help me reach my goal! Click on the link in the sidebar to get to my donation page.

Bilateral Bionic Boy?

If you'd asked me two years ago when we were preparing for Noah's first CI surgery, I'd have told you that there was no way that I would ever be interested in getting him a second CI. Choosing to send my son to the OR for an "unnecessary" surgery once was more than enough for me. It either would work or it wouldn't, and at least we tried. And yet today I find myself wondering "Is it better to schedule the surgery for the earliest possible date (March) or should we try to get him in over spring break in April?". In my mind it's not a done deal until they actually preform the surgery, but it sure looks like Noah is going bilateral after all.

Periactin

Noah started Periactin on Thursday in an effort to increase his appetite and motivate him to eat. It appears thus far that it has the additional effects of keeping him from coughing, being congested, or vomiting. He took Periactin on Thursday and Friday with no vomit (two days in a row is a record!). We didn't give him any on Saturday or Sunday and he vomited both days, along with early Monday morning. Then we again started Periactin and no more vomit Monday or today (yes, that's right - almost 4 out of the last 6 days without any vomit). If this trend continues it could mean amazing things in terms of Noah feeling safe and comfortable around food, not to mention a huge decrease in laundry. Too bad he can't take it on the weekends.

Speaking of neglecting things...

I may have missed my opportunity to post this, since Noah's recent illness has led to major feeding regression, but check out Noah's newest skill:

He's not nearly the expert that he seems in this video. The most he's done at home at any one meal is 6 bites independently, and those require coaching. But we now know he can do it, so it's definitely something we'll be working on once I get him to eat again.

Busy

Noah has kept us occupied with numerous doctor's appointments, ER visits, and a slew of holiday engagements (I think he got invited to more parties than I did!). I didn't want to neglect to mention that we now have a NEW Teacher of the Deaf who actually has a clue about oral kids and cochlear implants. Unlike our old TOD I actually feel like she's interested in helping Noah to learn. I find that I don't really fit into any of the main philosophies regarding deaf kids so I never really totally agree with anybody, but I think she's a keeper.

How to drive a speech therapist crazy:

1. show that you comprehend a question but never actually get around to answering it

2. sprinkle in a few nonsense words

3. change the subject

Food

Yesterday Noah put a goldfish cracker in his mouth. Of course he took it out again without even attempting to chew or swallow it, but for a few seconds he had real food in his mouth. I never thought I'd see that happen!Of course only a few short hours later he was hysterical because someone tried to give him a wrapped candy cane. We'll get there someday. I hope.

Our feeding team is inspired to try new things so we've made some changes. Noah's Prevacid has been doubled from 15mg to 30mg and he now takes it in the morning instead of at night. The big difference that we've noticed so far is that now he throws up all over his bed each evening instead of his high chair or carseat in the morning. Anyone know why he might feel the need to vomit an entire meal approximately 12 hours after a dose of Prevacid?

We're also sampling EO 28 Splash in an effort to try Noah off of dairy. Thus far I've noticed a distinct lack of couching, retching, gagging, and congestion in my house. Lots of grimacing over the flavor, though, and a major increase in avoidance behaviors at meals. About the same amount of refluxing - that never changes. We still have 2 more flavors to try before the official test, so hopefully he'll fall in love with one of them.

If the increased Prevacid and/or the lack of dairy don't solve all of Noah's feeding issues, or next step will be to try Periactin. After that we may or may not try Neurontin. If that doesn't work I imagine they'll try to come up with this or that in an effort to look like they're doing something, but the fact that they've recently started to refering to "if" Noah eats real food as opposed to "when" makes me think there probably isn't a lot left to try. Not that it matters to me, really. I mean, pureeing food isn't all that much trouble. Id'd be nice if he'd feed himself, but we're actually making progress with that, so I don't imagine it'll be too many years. That'll be a day to celebrate!