Update - Saturday, May 3

Today has been a day of ups and downs.

Early this morning, while the nurses were trying to move Kamryn's IV she had the first seizure since being on the phenobarbital. They think it might have been somewhat stress induced, being as she is starting to get rather upset with people poking and prodding at her. She doesn't like sharing her blood much with people. It was a disappointing event, but the neonatalogist and neurologist weren't too concerned about it. They decided to give her a "booster" of the medicine to get her levels up a little, but will continue with the same "maintainance" doses after that.

The neonatalogist spent some time with us this morning. He said that they want to try to get her off of the IV in the next few days, which means that she will have to start getting her nutrients some other way. They began feeding her breastmilk from a tube running from her nose to her stomach today. She's going to tube feeding right now as a transition between the IV and the mouth. Her stomach needs to get used to digesting the milk, but her mouth has to be retrained in how to suck, since she's been working off of an IV for the last few days. The doctor said that it can vary anywhere from a couple of days to a couple weeks to retrain and get the mouth's coordination back into "sucking" mode. One of the only things the various sundry of doctors do agree on is that she will not be able to come home until feeding is well established. That means off the tube, in the mouth and up from 1/2 oz to 2 oz.

Later today, the neurologist came by to check in on Kamryn. He told us that the results from MRI that they ran yesterday came back and looked good. Of course that doesn't get us a cause, but that isn't necessarily bad, he reminded us. He did mention that the EEG was not normal, but I guess it wouldn't be if you are having seizures... He was also concerned about her lack of alertness. She has spent most of the last few days asleep; what little time she has been awake, she's been groggy and in a sort of stupor. He didn't give any sort of indication as to what any of that means, just that it concerned him. Of course, the other doctors and nurses have been telling us that the phenobarbital and other medicines would play into that quite a bit. Still, the neurologists words got us a little shaken.

Before we left tonight, Kamryn spent a good 45 minutes awake, eyes open, and pretty alert. Of course, this was all in the 45 minutes before they kicked us out for the night. She was about to have a feeding and diaper change, so maybe that helped her continue to stay awake and alert a while longer.

Hopefully tomorrow morning we'll get a good report and have some more positive news to share.

Here are a couple of pictures of Kenedy and Kamryn. This was Kenedy's first visit to Kamryn since she's been in the NICU. She came up with Janma, Memere, and Pepere. JJ, Kevin, and Tiffany also came by to visit tonight.