4th Birthday Photo Session

4th Birthday Photo Session

Friday, September 16, 2011

Bring On The Egg Nog!

Andi nearly aced her swallow study!  There were little amounts of residual left in her mouth, that could potentially be a problem, but they were rather impressed with her progress.  However, it's not something that would warrant sewing up the current g-tube site and relying on 100% oral feeds.  Nope.  She has to put on weight.  She needs fat stores.  She needs full nutrition.  Therefore, they want to move forward with the "revision" which is 'paint-it-pretty' code for sew up the old and put in a fresh, new hole, and let's hope it doesn't happen again! However, in a few months, the feeding specialist, said that we could work more aggressively about weening.  Oh, and she's now allowed liquids, although thickened liquids would be better!  I'm thinking chocolate flavored buttermilk or half & half!  Is that gross or what?!  Oh, EGG NOG!  That's fatty and thick, and tons of flavor!!!  HA!

In any case, they are coming back in the next hour to put in a NJ tube.  The NJ is a tube that goes up the nose and snakes past the stomach directly into the intestines.  She is going to HATE it!  They're also going to put "no-no's" on her hands/arms, to prevent her from pulling at it.  She will also be tethered to a feed tube 24 hours.  This is going to suck.  But, the thought is to get her nutrition that won't leak and let her stomach rest over the weekend before surgery on Monday.  I have yet to see the surgery team to ask them the list of questions I've written down.  I'd like to know how long after the surgery they'll want to have the NJ in.  Let alone all the important stuff like, why the f is this new hole going to work, whereas the old one didn't.  No guarantees in medicine, and that's bullshit.

So, in any case, it's going to be a very long weekend for baby girl  She just awoke from a rather long nap and she is full of spunk and energy again.  A little chatterbox, she's enjoying the attention of all the people, unless they try to touch her, then she freaks. She's only pulled out her IV tube once today too, how exciting!  I have a big fat headache and got a hospital night's sleep, meaning - it was pretty bad.  I was up at 4:15!  JOY! 

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