I think I've mentioned before that we've had excellent care at the NICU. But one doctor, in particular, is especially dear to us. Her name is Dr. C---- and she gives James as many opportunities as possible to prove himself. She also told us that she's been thinking about us a lot and wanted to tell us that we shouldn't feel guilty about what happened. She said that based on all the information we had we made a good, educated decision with the best intentions for our son, family, and selves. She said that everything seemed healthy and normal, and there would have been no way to know anything like what happened would have happened. It felt really good to hear someone say that - especially someone in the medical world.
Dr. C is also the one who ordered this third cookie swallow, believing that this third time just might be the charm. Technically she is no longer James' doctor since they rotate every month, but she met with Travis and I yesterday to discuss possibilities for our son's future.
We discussed the swallow. James will need to take at least 20-30ml of a mixture of rice cereal and formula with no aspirations and no more than a few "shallow penetrations" of food into the "at risk area" of the windpipe. A full bottle for him is 80ml. The rice cereal - formula mix is like a thick milkshake. He'll have to be on formula because breastmilk breaks down starches and would thin down the rice cereal by the end of the feeding - dangerous for James. Right now the options that stand before us are:
A) James does well tomorrow at the test. He then does well throughout the weeks, slowing moving from two bottles of 80ml to eight, weaning off the feeding tube that currently goes down his nose and into his belly. He then comes home taking all this feedings with a bottle.
B) James does well tomorrow at the test. He begins taking two bottles a day but has trouble finishing them because he tires out or doesn't work up to all eight feedings through a bottle. They would then surgically place the g tube into his belly and he would be sent home to continue on his bottle / tube feeding schedule.
C) James does not do well at the test. They immediately schedule surgery for the g tube and once it is healed he comes home. About three months later he'll have another cookie swallow to see if he is ready for a bottle then. However, as I understand it, the chances will be smaller then.
Holding James tonight, Travis and I talked about going to high school football games to watch the E------m boys play. It felt like a real possibility.
I don't know what will happen tomorrow. I feel nervous for James and the results. I didn't line up a sitter to be with Ben and L and I don't know if that's good or bad. I don't know if I can watch the test with so many hopes and fears tied up in it.
Please pray that James will pass. Please ask God for another miracle and pray that he will pass with flying colors, continue to improve, and not need a g tube.
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