Disappointed

Well, things didn't go as planned today. Emily didn't handle the formula we had her on well past a certain point. We tried twice, but she seemed to have pain and cry when the rate went past a certain point. The good news is, she was really close each time, but not quite close enough. The infection might be complicating feedings too.

She has lost so much weight in such a short time (almost 6 pounds now). They are starting her on lipids with her IV because they can be given through a peripheral line, but if she isn't able to go all the way up on the new feedings by Wednesday, they are going to place a picc line and start full TPN. Please pray she tolerates feedings. She digests just fine, but she's never been fed 24 hours a day before and seems to struggle with the constancy of the feeding schedule more than the volume. They did change the formula today, so hopefully that will help.

If they have to start TPN, we will be here a few more weeks.. If she can tolerate feeds, we could go home by the end of the week, or early next week.

I went home for a few hours tonight because I just needed to get out of here. I can't do this again. I cant handle the whir of the iv pump as background noise for weeks. I am so sad that another summer is spent in and out of hospitals.

I miss Abby so much, and all of this belly talk is killing me. Most of the time when I'm here, I can't even think of Abby and deal with Emily too. I have to push all of that grief aside and deal with the living. Then, something small makes me think of her, and I see her smile in my mind, and feel like I've lost her all over again.

It all seems so unfair. I know life never is, but sometimes, for some people it seems exceptionally unfair. I walked away from Hannah and Sarah again tonight and again, hated seeing the looks of concern mingled with resignation on their faces. They looked so very young for such knowing, aged expressions.

Even if everything else goes perfect, it will take time and energy to get Emily back to where she was. Remembering where we were this time last year with Abby makes me thankful that Emily can get better. I guess I just feel so upset that she has to.

Disappointment is overwhelming tonight. I'm praying for my girl as we go to sleep, for healing for her little body, and for God to replace this disappointment we all feel with peace, hope, and honestly just a little teensie glimpse of what in the world He is doing!