Thursday, April 18, 2013

Step One: NAM Molding.

Yesterday Ondine was fitted with her NAM molding. She’s such a chill baby even the doctor commented on it. “I think he might be the easiest baby we’ve ever fitted.” And she must have been. The molding was like a binkie, she loved it. It was the tape on her cheeks she didn’t like. But she fell right asleep afterwards and we made our way to the nursing floor.

We checked in pretty quickly and the nurse did the normal weight/growth check and then proceeded to watch in wonder as Ondine wolfed down 65ml of milk as if it was nothing. She did her little fake burp, I insisted on a real burp and fell back asleep. This is my hope that she continues to be so chill every time she gets a fitting. Wishful thinking, I know.

So now this device. They call it an appliance. Since I can’t blend a smoothie or toast bread in it, device seems more appropriate. It’s not dissimilar to a retainer for post-braces in orthodontics.  Only it has this button that sticks out her mouth  that you use to hook tiny little rubber bands to and attach to her face with tape. It’s frankly awful. But again, I have a super baby. She doesn’t seem to mind. Praying for a quick molding so that we get her through this before she realizes what’s going on.

Saturday, April 13, 2013

Struggle for Air

It’s 5:15 am on a Saturday. The only thing I can do is type a note on my iPhone while my baby girl sleeps. What’s that? Put her back in the bassinet you say? I’d love to. Except she has a bilateral cleft pallet. That’s easier said than done.
I’ve previously written about the heart break and fear my husband and I went through during my pregnancy because doctors scared the shit out of us with the news that our child would have a bilateral cleft lip and possibly a pallet as well. Even more recently I talked about the process of delivery. But no blog I’ve read, no doctor I’ve spoken with could really prepare me (or my husband) for caring for a newborn with a cleft.
It not that different I suppose. You wake every 2-4 hours to feed/change/cuddle. There are giggles at her precious sounds and complete frustrations when nothing you do will console a screaming baby.  There’s the normal fears of am I a good parent, what if I’m doing it all wrong?
None of that compares to the fear of holding your helpless baby in your even more helpless hands as she stretches her neck gasping for air.
Hence I sit in a recliner at zero dark thirty, with no Oscar nomination in sight, and my 3 week old slumbering at a slight angle on my chest so she can breathe a little easier. We discovered this brilliant little trick at the hospital when one of the very clever nurses tilted her bassinet ever so slightly so that she wouldn’t choke if she threw up, and to ensure that anything in her mouth went where it was supposed to go: down her throat and not into her nasal cavity.
I guess I should explain. A cleft pallet is essentially a hole in the roof of the mouth. It means the barrier between the nasal passage and mouth is MIA. This leaves her open to fluid in her ear canal, problems with sight if milk clogs her tear ducts, and the very real possibility of her choking every time she eats which is about every 2 hours.
But in spite of all of that, the fear, the frustration, the sheer panic that wakes me after 5 minutes if she gurgles instead of breathes is worth it. Because her voice is the sweetest sound I’ve ever heard, and her deep blue eyes see right through my soul. Because right now I have a flesh and blood angel sleeping peacefully over my heart.