No rest

We've been up since before 3 am and laid down a little after midnight. We sat and watched her daddy sleep(along with Frosty the Snowman) wishing he was awake, but knowing he had to get some rest. He woke at 4 and then slipped out to catch his cab to the airport. He's gone and I wish we had gone with him. As he left her whispered to me that he would see us some time this week. "Maybe even tonight" he said as he kissed me on my forehead. He could feel I was disappointed and tried to be encouraging. I just have a sinking feeling inside of me. It may be too good to be true.

Her output has increased through the night and all though she looks better than she has in a month I think they might be suspicious of the increase and want us to stay. I don't know that for sure, but I think. It makes my heart sick to think of not catching that plane today. I desperately want her to be well and on her way closer to home. I'm just not sure if it will be today, so like her daddy said perhaps one day this week?

Why she had to increase her stool on our "last" day just confuses me. She was perfect the first half of the week and then slowly beginning on Thursday it began to creep back up. I want to think it is because they have been pushing her. Increasing her feedings every single day and her caloric concentration. We took her from 5 ccs and hour up to 35 this week and from 15 calorie Neocate up to 20. It takes time. A long time. Last year it was 6 months before she was on full feedings and not requiring any IV or enteral fluid replacements. I know it is going to take a while. The question is, are they going to allow it to take awhile at home, close to home, or right here in Omaha? I don't know if they will back out and change the plan this morning. She has gone from 40cc/per kilo to about 70cc/per kilo. They won't do a biopsy unless she is around 100-150 all of sudden.

My stomach is just sick. Sick from my nerves. Sick from Dave leaving this morning. Sick over her stool output. Sick from lack of sleep. I wish I were just resting in the knowledge that what He wanted to take place for us today is exactly what is going to take place, but for some reason my mind won't slow down and my stomach won't settle. I know this is true, but its easy to say and a little harder to rest in.

I guess we will have an answer by the end of the day. I just can't imagine disappointing the kids today and its a little hard to imagine the disappointment I fear will settle in with us too. I wish I could just be excited but nothing about raising our sweet Ashley is easy. Except the loving her part.