Still Waiting

Not much change today. We're just waiting out the time on the ventilator, and hopefully Emma will do well enough this weekend that they can try to take her off of it on Monday. If she improves a little over the weekend and they can wean her off of it, they'll try to completely take her off on Monday. Then they'll just wait...wait for her to either breathe on her own for a long time or wait for her to stop breathing again. That's the scariest thing I can imagine. You may think us uncaring parents for this statement, but there's no way we can be in the room with her while we wait for her to stop breathing again. If they can't even try to wean her off the vent or if she does stop breathing when they take her off, we'll sit down and talk about having the Chiari surgery. It's kind of a given that she'd have it in either one of those cases, but we still have to discuss the risks and expectations. The expectation is that the Chiari malformation isn't causing these problems, but it's one more thing to cross off the list of possibilities. I asked Dr. Troup today how long we'd wait after the surgery for results, and he said it would be hard to say, but probably a week. In addition, the results wouldn't necessarily be 100% or 0% improvement; it could be anywhere in between, which really muddies the waters. What do we do if her breathing only slightly improves, but not enough for her to breathe on her own?? We don't have an answer.

Today they did another EEG to test for any seizure activity. Emma was asleep, so there wasn't a lot of brain activity to measure, but they still concluded that seizures aren't causing her problems. I wish they were. It's so strange to pray for seizures, or a virus, or an infection, or a shunt malfunction...but we need (1) an answer and (2) a way to fix it.

Here are some pictures of her in the hospital crib. We haven't taken many; it's so hard to see her lying there without being able to pick her up. It's amazing, too, that we now get so excited to see her opening her eyes or trying to move an arm, when just days ago she was all over the place. But soon after the amazement, we realize that she could be in pain, and that's something else to look for in order to give her meds. The worst is when she tries to cry...squints her eyes...tries to make a noise, but can't because of the tube in her throat. So all you moms, be thankful when your babies cry; something may be wrong, but at least they have the ability and outlet to tell you. Emma has been swaddled or had her arms wrapped up in blankets that look like angel wings, and she hates this. She loves to move her arms, but the second she gets one free, she's grabbing a tube.

Oh, and look at that strawberry blonde hair! Russell's grandma is the only one with red hair...and so fitting that she finally got a little girl with her hair after 2 sons, 5 grandsons, and 1 great-grandson.