All of these pictures were taken on Monday, in Caleigh's new Bumbo seat. She has great head control and can hold herself up the whole time!
So I didn't want to jinx it, but on Monday we made our goal of 10ml an hour. Talk had turned to us going home this coming week and then Caleigh did what she always does......got her big distended belly today. So in an effort not to jinx the situation, I hadn't posted in a few days, but with Caleigh we just never know what turn she will take.
Yesterday, I thought things weren't working, told the proper nurses, doctors, etc, etc. and what'ela know this morning I showed up at shift change and stopped her feeds. Green stuff coming out of her g-button, yellow stool coming out from around the button. Once I notice a change in her it usually takes about 2 days for everything to come to a halt. We went for another contrast study at Cooks, a barium enema. Nothing new, dilated loops of bowel... yadda... yadda.... yadda. Same ole, same ole. So what do we do??? No really..anyone know out there? Eric and I are obviously frustrated, tired and about a million other emotions right now.
So Caleigh got some morphine for the pain today, had to have an arterial stick to draw blood, leaked watery stool all over me, stopped her feeds, & put her button to gravity drain. GI came and changed some of Caleigh's meds. Took her off of the Flagyl, they think it isn't working, and started her on a different type of probiotic,
, that isn't absorbed into the bloodstream so it hangs out in the intestines. They have also decided that Caleigh's new goal should be 5ml an hour. GI said that it isn't doing us any good being in the hospital and going through this every week. Maybe 5ml will be the magic number for now.
I asked for another care conference today out of frustration. I don't know where it will get us but maybe everyone will be on the same page when we are done. We love everyone at Harris & Cooks, nurses, doctors, surgeons, staff....we consider them family but Eric and I have been looking into other options, hospitals, clinics, etc. We want a short bowel specialist. If this was your child what would you do? Say your child had a 3rd arm and no one could get rid of that arm for you, but there was this hospital that specialized in 3rd arm removal. Wouldn't you want to take your child there for the best care? Just something we are tossing around. No decisions made as of yet.
Caleigh's Neurologist came by to see her today as well. Her head has grown 2cm since the last time we saw him and he was really impressed. She is still behind, just like the rest of her body but he says that is a good sign. When babies are as sick as Caleigh their brain stops growing. He says that Eric & I are the reason that Caleigh has developed as well as she has so far and to keep up the good work. So that was a bit of good news throughout the not so good day.
Anywho...I know tomorrow will be a better day and the day after that will be wonderful as well....