Today we had to stop Caleigh's feeds completely. Her little belly swelled up again and got really hard. We put her g-tube to gravity and got 40ml of what looked like stool out of the stomach. Her tummy is softer now and she seems to be feeling better. She was backing up all this time and it finally caught up with her. Caleigh has been running a low temp probably because of the skin infection. She is still on antibiotics for the infection so hopefully they will start making her feel a little better. Her blood pressure has been good throughout all of this and she hasn't needed her medicine in a few days now.
So what does this mean? We aren't sure yet. It could be a combination of things. They are doing x-rays every morning to watch for blockages and our main doctors and surgeons will be back on Monday. So we will see what they say. We are also going to meet with a GI doctor to see if we can find some sort of 'magic' mixture of formula and medicines that will work with Caleigh. We still seem to think that Caleigh has motility issues from when she was in-utero there was a lot of damage. Even though the bowel 'pinked' up and was able to be saved it still suffered some damage. So we think things just aren't moving though at the pace they should be.
Frustration is a constant everyday now. The amazing surgery that Caleigh struggled to make it through, seems to have been only a stepping stone instead of the answer. We can't explain just how badly we want Caleigh to come home and feel better, the feeling is overwhelming. We still get our strength from Caleigh and how amazingly strong she has been through all of this. We can only hope that the situation just gets better from here on out.