Tuesday, January 29, 2013

6:30a.m.

Baby girl had a good night in her new place.  The nurse said she slept just about all night; he had to wake her up to change her diaper.  She spit up once but didn't have any episodes.  She was fed breast milk into her stomach every 3 hours.  I hope the stomach feeds continue to go better than they did the last time...milk shooting out of her nose isn't cute.  But, that was about a month ago--she has grown and matured so much since then.  I'm praying this works.
 
So yes, I was totally bummed about the surgery not being the answer to Aubrey's problems yesterday.  I guess I just had my hopes up too high that there would be a clear-cut solution.  So much of what has happened has been in the gray areas--nothing black and white.  It's making me crazy that we're just back to sitting and waiting...I know the new doctors are going to do some more tests, but really we just have to wait and see what Aubrey does.  Still, after 101 days in the hospital, I have trouble with patience.

-Keli

1442 hours. 2:42 pm

Cece, otherwise know as Claudia, Keli's mother, was in with Aubrey earlier while she was being fed. While the tube was filling her belly cece put her pascifier in her mouth and she sucked on it for about 10 minutes. That was good to associate milk with sucking. Then she got tired and spit it out. That's ok.

She has been having a very good day. She is continuing to take about 42 ml of breast milk in her belly and hasn't rejected it yet. That's great. They will slowly increase those amounts and get her up to about 50ml. No plans to change to thickened formula as moms milk is the best thing for her.

The speech therapist is coming by to try a little bit of milk thru the bottle to see how she reacts. Plus she will do some other tests and exercises and see how she does.

Next week she will have an EEG or a brain scan to see where we are at there.

She is back on the iron and daily vitamins.

Her oxygen is back down to 21% or room air, and its only a half a liter. They are keeping the nasal cannula on her so that if she has an episode they can turn her up and see more of what it takes to get her out of the episodes than just to bag her.

-adam

7p.m.

Aubrey continued to have a good day.  She stayed on feeds into her stomach; she spit up a little bit once and gagged a few times, but her oxygen sats stayed relatively stable--no dramatic drops or episodes.  The speech pathologist came by and worked with her.  She tried her with a pacifier first, and Aubrey got a few good sucks in.  Then she tried her with a bottle that had about 10cc (10 milliliters) in it; Aubrey was a little confused as to what to do with the darn thing at first, but she finally started to suck.  I think it surprised her when something actually came out of the nipple.  She gagged once or twice but did get a bit of a rhythm down with her sucking and breathing and swallowing.  She only took about 2cc (half a teaspoon) through the nipple, but the therapist said for one that hadn't ever bottle fed before it was pretty good.  She'll come back later in the week to show me some things to do with Aubrey and try the bottle again. 

We are still trying to get used to the new place and new people.  It's tough not knowing anyone; we know our nurse's name (and she's wonderful), but she won't be there every day.  I guess we went through this at the other NICU too, but it seems that we got to know everyone pretty quickly there.  As long as the new people take the best care of Aubrey they can, I won't complain.

-Keli

what do I do with this thing??

ohhhh...food...this might not be so bad!

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