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Friday, October 21, 2011

Long Day Friday 10/21/11 @ 8:43pm

Hi, everyone! It's been a long day, and I'll try to be quick but give you lots of information about our little girl!
This is Gracie's early morning "hello Mom & dad" picture!!  She dropped her 20 grams she gained yesterday, and that's okay..she's still 4lbs. 2oz.  Last night, about 1:00 a.m., she had a pretty big d-sat, where her stats they stopped the feedings.  (We think the hernia is really bothering her..we actually see how it bothers her, she arches her back & cries.. this is the most we've heard her cry!)  Then this afternoon, she had another one.. a big dsat.  So, I'm pretty clear to them that I want the surgery sooner than later. 

We met with a sleuth of people today... another G.I. Specialist, another Pedi Surgeon, another Neo doctor weighed in on the conversation..and I gathered from the Pedi surgeon that her current weight is not an issue to have the surgery, whereas yesterday's surgeon said that she would like to see her weigh closer to the 5lb mark.  As of yesterday, we were originally going to wait another two weeks to talk about it (the surgery) again; but after the last 24 hours, we don't want to see Gracie suffer.. and we don't want to continue to see her have these horrible d-sats.  She is a smarty pants & she closes off her airway, so as not to asspierate into her lungs, but geesh how many times do we need her to do that?!

Anyway.. I think we've all agreed to let her rest & get some nutrition in for the next week, build up her strength a little and schedule the surgery for the week after.  So, she will have the hiatal surgery fixed with the nissin funlipcation & then a g-tube surgically placed into the belly for feeding (which she can go to a level 2 with or HOME!). We will work on feeds orally as well, and she will keep the g-tube in as long as it takes to get her weight & nutrition up.  Then she will have her umbilical & groin hernia fixed as well.  She'll be a new babe! We'll love her anyway!

Her shirt says, "Princess Preemie".. we put it on for Daddy!! His little Princess!

And Uncle Ross visited today.. we took him out for lunch at Applebee's and he stayed til 6:30ish..we had a nice visit with him.  Thanks for coming up Uncle Ross!!

I'm liking taking these pictures of people who visit like this!! :)
I know some of you had said you like my dinner posts; although Ross said he laughs with it.. but hey, at least your talking about it.  But I really post the dinners so people really know how GREAT an organization The Ronald McDonald House is.. and that every meal that is cooked here is done by volunteers!!
Tonight's dinner was chicken & salad, potatoes & the leftover beans from yesterday.  And the delicious carrot cake!!

I need to go to bed soon, and watch Grey's Anatomy!!
A big HUG & THANK YOU to our nurse, Susan today..who really helped us get our point across with the doctor's.. and to Mari (another nurse) who was just there at the right time to hear me bitch & cry!! :)  Thanks, girls!!

Love you guys..
pattie & gary, gracie & max

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