Dinner Time

So, yesterday was the long-awaited, much-anticipated E-day. (E is for EAT.) After some discussion among Grace's team about the best thing to start her on, they decided to go with GI's recommendation of Pedialyte. We were a little disappointed with that decision, as we were hoping to get her started on formula ASAP. Well, she tried the Pedialyte, the orange kind and the clear kind and was not having any of it, not with a sippy cup, not with a syringe. (She never would take a bottle before all this, and we don't see any sense in teaching her to use a bottle at this age.) After a few unsuccessful attempts, we tried to get the doctor on call to go ahead and put in an order for formula, but it was after hours. He wouldn't override her doctors' orders. Basically, a wasted day. Boo!

"OK, I'll try this."

"Yuck."

Today, she finally got to drink some formula! However, the doctors didn't round until 10:30, and it took forever to get the formula ordered and ready (it's some special, super-gentle concoction -- already broken down into amino acids to save the intestines some work.) So...another half-day wasted. She is supposed to increase by one ounce every hour for the first three feedings. For her first two feedings, she has taken about half an ounce willingly with a syringe and the other half ounce has been a struggle. Forget the second ounce she was supposed to get at her second feeding! She would not have it. It is good that she is willing to take any at all. That's a step in the right direction, but if she does not take enough by mouth, then they will have to put an NG tube back in. We don't want that to have to happen, so please pray that she will continue to want more and more by mouth! So far, she seems to be tolerating it well. No fussiness and no diaper explosions. The plan is to increase feeds and decrease TPN until she can be totally weaned from TPN.

In other news...I tweeted yesterday that they may have detected a staph infection, probably related to Grace's PICC line. They do at least three cultures to confirm -- the first was positive, second negative, third still out -- but they went ahead and started her on an antibiotic last night. So far, she doesn't seem to be experiencing any problems related to that. She actually slept better last night than she has in several days (and I did, too!) Praying that it is not staph, because, if it is, they will probably go ahead and pull her PICC line, which means a new IV and more sticks for bloodwork when needed. (Right now, they can draw blood from her PICC.)

Grace is looking better and better. More color, more alertness, more willingness to sleep alone and to sit alone to read books and play with toys. Her progress has been encouraging! We are so stinkin' tired of living at the Children's Hospital, but it is easier to handle when we feel like she is getting better. We have continued to be so, so, so blessed by so many sweet friends (and even strangers) bringing us food and other things, sending us care packages. Most importantly, we have been so blessed by your prayers! I have said it before, and I'll say it again: Your prayers are sustaining us!!! We are doing better than you might expect. But, we will be so happy when we finally get to go home!

One huge bright spot in this whole ordeal has been getting to spend time with my Birmingham friends that I hardly ever get to see. These are some of my dearest college friends that I was blessed to have a night out with on Thursday. Mary Beth came down from Murfreesboro and was a huge help and encouragement to me. While she was here, Justin headed to Montgomery to have a "Man Day" with the boys and give my mom a break. All good diversions from what has become our usual routine here at the hospital.

Thanks so much for reading our updates and praying for Grace!