Ty's Day 6

Today was a good day for Ty...and it was a roller coaster day for Tim & Lesley. Ty news first...he keeps looking better. We had a great afternoon with him...he was wide awake for his 1PM feeding...I even got about 10 minutes of breastfeeding with him. Ty and I have some "coordination" issues to work out, but we feel confident we can work that out. He took the rest from his bottle like a good little bird. Tim got to change several diapers (good Dad). He is keeping his eyes open a lot now when he is awake and had his eyes open for his entire feeding.

Now, for Tim & Lesley's roller coaster day...I knew it had to happen at a certain point. When we got to the NICU this morning, we had all new nurses! They aren't new to the hospital...just new to us. The nurse (while very experienced and knowledgable) just had a different demeanor. When I asked if Ty had any seizures overnight, she said, "Well, you know...he had some seizure like activity...yawning and stretching and mouthing." What the hell does that mean? Wasn't he yawning and stretching and opening his mouth for food yesterday and everything seemed okay? Aren't babies supposed to stretch and wiggle a bit? Long story short...Lesley without good sleep (those lactation consultants are nazis about me waking up during the night) combined with frustration that I won't ever know if Ty is having a seizure or simply being a "normal" baby stretching makes a very frustrated Lesley.

However, when Lesley is frustrated and showing it, social workers show up and ask immediately what they can do. So, we had a good "sit down" with the attending neotonologist. We asked her how the hell a yawn is just a yawn on one day and how a yawn can mean possible "seizure activity" the next. She concurred and said that she even can't discern it after 30 years. But, she said that we should feel great about his progress. he said that there really is no way in the world to discern from visual cues that is absolutely not having seizures. And, she said that we should not get hung up or fear that his yawns or any more than him actually yawning. We also talked a bit about Ty getting out of the NICU (which no one had discussed yet). She confirmed for us that they want him to get his breathing handled and to not have any definite seizures (yawning wouldn't keep him in the NICU). And, obviously, they want him feeding well.

Ty had a second EEG today. Also, the doctor is having Ty rigged up with continuous monitoring overnight of his brain. While it is really crude monitoring, they are trying to monitor his brain to pick up on possible seizure activity. Also, the test helps look at the overall health of his brain activity. The doctor pointed out one thing I hadn't really thought about. Essentially, Ty had a stroke less than a week ago...which means that he still may be dealing with the trauma of a major event and that some of the seizure activity may simply be him working through that trauma. Somehow, that made me feel better about him needing him to hang out and take his time getting well in the NICU. So, Tim & I left the NICU tonight on a good note. It was probably good that I had a little meltdown so that we got some dedicated time with the doctors today. Next steps? Tim & I still have to figure out how to take care of a real baby!