Sunday, August 2, 2009

Pants! (and the Beast Beneath)

So we have had requests for an update and for more photos. We haven't posted photos for a while because our camera is broken. Apparently our model breaks down in extreme heat, and I first noticed it having trouble in San Antonio. We're sending it off to be repaired, and in the meantime, Ma Johnson is letting us borrow hers. We took one family photo with it last night before the batteries died. It's recharging now, so expect more photos soon.

We haven't posted anything new because not much new is happening. Baby still doesn't eat like she used to, but she continues to improve by tiny increments. She completely shuns bananas (which thing we thought could never happen). We've actually reverted to baby food for a while to try to get her eating. It's... working? Doesn't eat much of it, but tastes it here and there. She has lost almost 2 pounds from her pre-surgery weight.

In good news, baby gets to wear real clothes! The photo above is her first foray into t-shirts and trousers. Cute, no?

Underneath those trousers is some pretty nasty bum rash. As of last night, her whole bum was a crimson red. As of this morning, her entire bum was dripping in blood. We have a wicked trade-off with which to contend. Sleep? Or multiple bum changes every night to control the rash? Her sleep schedule got so screwed up at the hospital that she's been confused like a newborn about night and day. We got her to sleep through the night both Friday and Saturday (last night), but sleep without diaper changes each hour takes it's toll on her once beautiful skin.

We've found that the Night Time Desitin (layered with ostomy powder and doused with baby powder) actually works better for her skin than anything else, including the Ilex. Talking to another Total Colon HD mom in Israel, she found the same thing for her baby. However, now we're considering doing Ilex at night and Desitin during the day. Maybe that will help on the long stretches without changes.

Jeff is doing a good job at work, and I am mostly playing with and watching the babe. Bridgette has become suddenly more interactive post-surgery (and even does a titch better with tummy time), so I'm having fun telling her about everything in the house, even if she doesn't say any of it back. We're also working on our home business more (we'll let you know when you can check out our first of many web sites), and I've started writing my book again. All in all, our lives are settling back into normality.


Angela said...

Bri looks so adorable in her shirt and pants outfit!!!!! :-) I love it!

I'm glad things are getting normal for you. Hope your camera gets fixed soon.

I hate that her bottom is so raw. It must be awful! The key is to find the right combination and it sounds like you are working on it. I hope you find your potion soon.

I'm so glad she has perked up too, she'll be moving around in no time!

Anonymous said...

No school + no bag = normalcy for you. I am so happy that you can experience some normalcy in your lives. I do like her new outfit. Did she like it too?

I am glad to hear that Bridgette continues to improve a bit each day, albeit minimally, with her eating. Two pounds is a lot of weight for her to lose, but she did have some to spare. Hopefully, she will begin to eat more normally for her soon.

I am also glad that she seems to like tummy time a bit more. Maybe, now that she has such a nasty rash, the tummy is preferable for comfort reasons. It has got to hurt to sit on that bottom.

Seeing this picture of Bridgette confirms my suspicions that she left "the baby" in the hospital and came home a toddler, even if she isn't "toddling" yet. I suspect it's not too far off. A little sad, yet exciting too.

We love you lots.

Jacqueline Miller said...

I know how you feel - the bagless world is GREAT, but then there's the whole butt rash to deal with. Glad you found your "formula" already. You compared it to fingerpainting - one of our nurses compared it to "frosting their butts" and for some reason that's what I think of - layers of fluffy white frosting and sprinkles of sugar on top. For Curly, it hits the hardest when he's getting a tooth. LOVE the pants outfit!!

123 checkoutourfamily said...

Yay for Bri in pants!Sorry to hear about the sleep schedule mix up and the bum rashes. Ouch! No fun for any of you.

Wow, you're writing a book and starting a business. That's amazing! What is the book about?

PS. sorry we didn't get to see you in Utah. Can I just say I'm not sure where any of the time went. We bounced all over the place.