Monday, August 10, 2009

Off C-PAP, then right back on

Saturday morning Pam and I got the pleasure of being there while Riley received the last round of her 2-month vaccinations. She actually handled it pretty well and only "screamed" (all face, no noise) when the needle was stuck in and calmed down pretty quickly. After that, we left for Kansas City to go see the Royals play. Early Sunday morning, they decided to go ahead and take her off the C-PAP. But after only a few hours she already was having multiple episodes of apnea/bradycardia. They put her back on, and after she still had another episode they had to turn the pressure back up to 5. So...after all was said and done she's behind where she was last week. There's a good chance it could have just been a little too soon after the vaccinations, or could be her phenobarbital levels needed adjusting (since they had to up her dosage again today). We're hoping she is able to try again in the next few days so we can move on to the next step. Once she's off the pressure and on just straight oxygen, they will move her feedings from being spread over 2 hours down to 30 minutes. If she can handle the food filling her stomach quicker without spitting up, they'll move to trying breast feeding.

Overall she's still making progress, but like I've said before she takes a few steps forward then a step back. One thing we've learned throughout this whole ordeal is that Riley wants to set her own pace, and not follow what anyone else says she is supposed to do. As of an hour ago, she weight 2713 grams, which is just barely under 6lbs!!! By the time she comes home, she's going to be right at her expected weight - both Pam and I were around 6.5lb.

We've been holding her quite a bit the past week - just about every day. Here's a good one of Mom and baby.

She has taken well to the pacifier. Can't keep it in her mouth that well, so we have to hold it, but she does suck on it quite a bit - a good sign that she'll take to the bottle or breast when we get to try it.
And here's a great closeup from tonight. When they put her back on the C-PAP, they didn't put the pressure relief tube back in her mouth (blue tube from the previous photos). I'm sure she's glad to finally be able to close her mouth fully for the first time since she's always had something down her throat until now. Still has the feeding tube down her throat, but it comes in her nose, not her mouth. Also note the pads under the tape on her tubes to keep the tubes off her cheeks. The tubes had been rubbing her skin and caused some abrasions on her cheeks. She's had bad reactions to the tape before too, so not sure if she has some allergies to them or not.


  1. She really is looking a lot more filled out. I do see a few rolls -- and her double chin! You haven't said lately so I am curious. . . is she still being supplemented with formula or is she doing 100% breast milk? She sure is gaining weight beautifully!

  2. Such cute pictures - lovin' that red hair - ha!
    Riley is doing so well and we're getting closer to getting her home....yea!
    Love, Granma Ginni

  3. She is getting so big, and she is looking so good! Can't wait to see her home, happy, and healthy.. Love you all. Give her a big kiss and hug for me.
    Aunt Jill