My baby girl has been off of feeds and on antibiotics again. No one knows what's going on with her. They can't agree on anything. (In fact, one doctor expressed a need for the doctors to be civil to each other.) I had no idea my girl had sparked such fighting in the department. I sat down on Saturday and spoke with one of the doctors for about an hour. It was a really depressing conversation. We were down to some truly horrendous options. First, some of the doctors want her to be scoped. Some of the other doctors think this could be disastrous and perforate her bowel. Other doctors want to do surgery. They want to open her up and go looking for the problem and remove it. I think this sounds horrible. Really, they've been in there twice already. Third time is a charm, huh? This would mean another couple months probably. Not to mention, we have no idea how much they'd want to remove. They could wind up removing so much bowel that she would have to be on IV nutrition permanently. Isn't that lovely? The third option is sending her to Seattle. It's already hard enough to live this far away from the rest of the family. Seattle? I might get to see them once a month if we can get over the pass. We also discussed the possibility of her having an ostomy bag her whole life or going for a bowel transplant. Did you even know they could do such a thing? And the bottom line....barring an act of God, this child was not going home for Christmas so I should hang that up.
I went out in the hall and called Mike sobbing. He was upset too, but felt like we could do the Seattle thing. I told him to have fun because I wasn't going. I didn't want to live away from my family any more.
I calmed down and went back in to be with Hope. I had a wonderful nurse that day who closed the door to my room and put up a "Quiet" sign so that I could have some peace. I sat in the room holding Hope behind my curtain and she was rooting around on me wanting to nurse. It hurt so bad to not feed her! I called Mike on my cell and told him,"I want to feed this baby." He told me no. Although he thought it was a good idea, he wanted me to discuss it with the doctor before I did anything. "Then I'm going home, because I can't sit her and do nothing anymore." Before leaving I had a conversation with my nurse. "What can I do if I disagree with what the doctors are doing?" She told me that I was the parent and I found out that I have a lot more power than I thought. She did not tell me what to do, but she wasn't discouraging me in my line of thinking.
I went home and prayed, and I know Mike was praying too. I basically said, "Lord, I've been crying out for you to speak to me, and you haven't spoken. So this is what I want to do. I want to feed my baby. If I should not do this, please tell me. At least make me wake up sick or keep my car from starting so that I can't go in." God did not speak, I was not sick, and my car started. So I went in to the hospital.
The doctor came by to do rounds. He sat down and said, "So here's the plan today." To which I replied, "You tell me your plan and I'll tell you mine." He kind of laughed, but was taken aback. I laid out my desire to treat my daughter like a regular newborn and breastfeed on demand. I said that everyone else had had a chance and been wrong, so I wanted my chance too. I told him that if it was a bacterial over-growth (one of many thoughts on the problem), then the best idea would be breast milk. I also told him that Mike and I both thought that this was a good idea, but we wanted to try it in the hospital where it could be monitored. I promised to stop if she showed any problems. The doctor agreed to let me try it, but he was not happy.
To sum up... Hope took to breastfeeding like a champ. She has been nursing for 3 days now and so far, so good. Her blood work is looking better, her x-rays are looking better, and her stool is looking better. It still has occult blood (not visible to the naked eye) in it, but it is not rust-colored like it had been. And the best part.... she is so happy! She has been giving me these big, open-mouthed grins like she hasn't done in a long time. I am so thrilled! Please keep praying. I am so hopeful that this is going to work. She has her last dose of antibiotics tomorrow night, so that will be the true test. Does she keep doing well once she's off of the meds? Please, please pray that the answer will be yes.