Progress

 The hospital is such a strange place where time both stands still and yet it races. Everything can be calm one moment and then scary the next. As of tomorrow, we will have spent three weeks at Children's Hospital. It has been quite the learning experience. Elijah is doing much better. Both Dion and I were very worried when Elijah refused his bottle. Just like with the diaphragm plication, this was not something we were prepared for. We had mentally readied ourselves for open heart surgery, but not for the complications that can accompany such a major operation. As of yesterday afternoon, Elijah was still refusing to eat. He would take a sip or two and then refuse any more. The nurse was convinced he was just anxious after being intubated twice in the last two weeks. One of the doctors thought that he may just be in a little pain and just overall not feeling well. He compared it to having a cold and not feeling well. You just don't want to eat when you don't feel good.

This was all well and good, but if he refused to eat, the doctors had to feed him through the ng tube. The ng tube made it more difficult for Elijah to eat and was keeping him in a constant state of fullness. He had no desire or need to eat when the tube would feed him. The nurse pulled the tube out yesterday knowing that that occupational therapist was coming. She also spaced the feed by four hours. This helped a bit, but not quite enough. The nurse wanted to replace the tube, but Dion and I were convinced that this was only going backward. He had been throwing up and Dion was sure it was because he was being over fed. The doctors were willing to work with us and gave us six hours to get him to eat 80mls. If we were not able to do this, the tube would go back in. Well our little fighter did it! Overnight, he fulfilled his requirement and kept the tube out. I hardly slept and instead just sat in the room waiting for his next feeding, praying he would eat enough.

This morning, they upped the goal to 500mls over 24hrs. So far, we are pretty much on track. Hopefully he continues to eat well through the night. Although I do not want to get my hopes up, the nurse practitioner told me that if he can meet his goals and everything else continues to look good, we would get to go home tomorrow. We have been here before where we were told we would get discharged and it kept getting pushed back. Hopefully three weeks is enough and our little guy will be ready to come home.