Half way check-in - March 3

So we're halfway through our Monday. I had to come pick up the bigs from school then I'll head back for the sleep study tonight, then back in time to take them to school in the morning and take Big Big to the orthodontist...whew!

Baby Girl woke up with sleepy smiles this morning and was sharing them with everyone! Dr. G said she's usually reserved with her smiles toward her, but even she got a few this morning! And one of my favorite nurses stopped by and got lots of good grins :)

We had an up and down respiratory day so far. She was down to 1L at 24% when I got there and was holding steady with her oxygen levels so Dr. G said she wanted to wean her off the cannula since they would have to take it off for the sleep study anyway. She seemed really comfortable and even had smiles for the RT when they did her percussion treatment. So they got her down to 21% (room air) and 1L pressure which is the lowest setting for both. Then they took the nasal cannula off and I got to take pictures of her with NOTHING on her nose or mouth or head! She did ok, and then not as well, and then pulled it back up and then got stuck in the mid 80s for her oxygen saturation. Ideally it would stay between 92/3 and 98/9. So they put her back on a smaller cannula, but this one only provides a flow of oxygen, no pressure to keep her lungs inflated. She was sleeping comfortably at 97 when I left so it seems to be helping. She might just need a day or so to adjust to not having the pressure assistance.

Dr. G said she's doing "beautifully well" at expelling the CO2, which she considers to be miraculous considering her lung capacity. So, based on the results of the sleep study, depending on the severity of any episodes she's having we will ideally only be going home with a CPAP machine for pressure support while she sleeps - if we even need that. We'll see.

She got her new hand splints today - her first purple clothing item :) They are a really flexible material (like a neoprene glove) so she can still move her wrists and arms but they keep her fingers a bit extended at the end, and her thumb pulled out to start working on that range of motion. The OT and PT loved the video of her pulling out her cannula - both commented on the control and range she was using!

They have condensed her day feedings down to one hour, but she wasn't handling the volume very well. She had several instances where it seemed like she was trying to throw up, but because of the fundoplication surgery isn't able to get anything out (which is the intent). It was pretty sad watching her. So they reduced the volume of her day feeds to 74 mL/ hr every three hours, and will increase her night feeds to 34 mL/hr continuous feed so she's still getting the same amount every 24 hours.

Last thing as I wrap up a lengthy post: Dr. G is planning on doing her two month shots as "we prepare you guys to get ready to go home". Those were her words, but I didn't want to get my hopes up by asking about a time frame.