More struggles

Brandon sleeping

Derek holding Katelyn

Blake also holds Katleyn but he always seem to be done when we pull out the camera. Blake and Derek really like to hold both babies and are very loving.

Let me start by telling you how well Brandon is doing. He is growing and last night he nursed really well. Before he can go home there are three things that need to happen. His the amount of oxygen he needs must improve a little. They want to make sure his eyes don’t continue to get worse and he needs to learn to eat completely on his own (not through a tube). Notice that "have his operation" isn’t on this list. We talked to the surgeon and while they may do the operation before he goes home it isn’t a requirement. He could come back later. We may however, want to get everything taken care of before he comes home. He now meets the minimum size requirements for the operation but because he is doing so well they aren’t in a hurry to do it. The longer they wait and the bigger he is the more likely it is to go smoothly.

Now, for the latest on Katelyn: Not long ago she was doing so well and now she is really struggling. Yesterday she was headed down for an MRI and she had another seizure. The nurse noticed and brought her immediately back to the NICU. They gave her a couple of medications. The first one seemed to temporarily stop it but it didn’t stop completely. They gave her a second medication that seemed to do the trick. After she had been settled for a awhile they did the MRI. She hasn’t had another seizure since yesterday.

As of right now they still don’t have an explanation. I learned something interesting. If they don’t find an explanation, then these seizures will be considered to be epileptic seizures. Not knowing the exact cause is the definition of epilepsy. The good news is that the doctors say that most babies outgrow seizures. They could be a lot of different causes. They have checked for many of the scary possibilities and everything has come back negative. Today they are focusing their efforts and checking for a virus. They are going to do another lumbar puncture and are working on a bunch of cultures.

Katelyn also received a very needed blood transfusion yesterday. She has been very heavily sedated because of the siezures. Since she has been sedated she has also had a lot of problems breathing. She seems to be retaining water and it is clouding her lungs. They have given her medication to help her get rid of the water. They also have moved her back to the C-Pap machine and they continue to test her. There is a chance that if she doesn’t improve they might have to re-intubate her.

Right now they attribute the breathing problems to the amount of sedation she has needed. It just seems like we are moving backwards really quickly. While I know that things could turn back around quickly, it is very scary and causes a lot of stress to her mom and dad. Please remember her in your prayers and we will keep you updated.