Day 10

Today was a hard day. I went to the hospital this morning and met with Dr. Meribani, the neonatologist. He explained the problem like this...The way we eat is that we put food in our mouth, and a signal from our brain tells our tongue to swallow. That reflex then signals another reflex further down, that pushes the food toward the stomach. Then at the end it triggers the muscle just above the stomach to open and allow food to enter. That is the muscle that we saw on the swallow test that isn't opening. But, it apparently isn't the muscle causing the problem. Carter doesn't have any swallow reflex. He has the suck reflex, but no swallow. But we did the MRI and there is no problem with the brain sending the signal to the back of the tongue, the tongue just isn't reacting to the signal. So the doctor said that because Carter's ability to swallow hasn't improved during the week, he thinks there is little or no chance of us seeing a change on the Swallow test. The really frustrating thing is that they have no idea why the muscles in the back of the tongue aren't responding to the signal. So now, we will still repeat the test on Thursday, and assuming that there is no change, then he will get transfered to UMC on Friday. Apparently UMC has a better pediatric area, more specialists, more access to testing equipment, and a more long term hospitalization capabilitiy. Dr. Merabani is assuming that the muscle just needs to be developed over a long period of time. So more than likely we will sit at UMC (while continually trying to figure out the reason for problem) for about a month or longer, until they put in a G-tube. At that point they can send us home, and wait for him to develop. Obviously, getting told that we are looking at a month or longer in the hosptial, and then coming home with a G-tube was not what I wanted to hear. I feel so truly frustrated with the fact that if the muscle just needs to be worked out (its not like we can put a little baby dumb bell in his mouth) then getting him to eat would work on that muscles. But we can't do that because he could aspirate on it. So what do we do??? I hate the answer "Just wait and see."
If there is one upside to being transferred to UMC is that siblings can visit!! That would seriously make a WORLD of difference to our family.

Anyway, all of this information just was a little too much today. My poor sister happened to call at the wrong time, and got an earful of crying and frustration. Thanks for listening. :)
There was some good news today...Carter weighed in tonight at 6 lbs 12 oz..which is fantastic, because up until now he was still losing weight.
So if you all will say a little prayer, that by some miracle we will see an improvement on the Swallow Study..any improvment would be sooo encourging.
Here is a picture of our little guy from tonight. He looks identical to Kyles baby pictures, except Carter has a dimple in his chin, and slightly more hair. Here he is sleeping peacefully duirng a feeding (thanks to his new medicine!!)