Waiting semi-patiently

Dylan continues to grow and learn, and we continue to wait for him to be ready to come home.

He is doing fairly well. He has had no spontaneous episodes of bradycardia or O2 desats. He has had a few desats while feeding, but these can sometimes be attributed to positioning or the fact that he doesn't always pace himself well when eating. Sometimes he gets so interested in the eating part of things that we have to pull back on the bottle for a few seconds and give him time to catch his breath.

We experimented with the bottles that we were planning on using at home with him the other day, but Dylan apparently doesn't like change. When he was using the new bottles, he couldn't quite get a good seal around the nipple and had to work very hard to get anything out of the bottle. This caused him to desat a bit and to brady as well. So... we've put those bottles away and we'll just use the ones that he's gotten used to at the NICU until he's a bit bigger and stronger.

He continues to get physical therapy to strengthen his trunk muscles, and it definately appears to be working. He still has some work ahead of him though, as he needs to be able to hold his head up and keep his lungs expanded for when he get';s into the carseat. He failed his first attempt at the carseat study, having some difficulty keeping his sats up when in the upright seated position. He just needs some time and more work to get those muscles strong enough to support his head to keep his airway open and to help expand his lungs as needed, especially when in a more compressed position like they are when sitting.

Overall, he's moving along at a solid, steady pace. We'd love for him to make huge amounts of progress voernight and be ready to come home tomorrow, but that's not very realistic, so we'll just keep working with him as he allows us to and take things as they come.

I'll probably be going to updating the blog on Wednesdays and Sundays from now on. It's just been too difficult to try and do it at night after our visits, so I figured posting twice a week in the morning would be a great way to keep anyone interested up to date. Of course if there are any major developments, we'll post sooner, but for now, count on the Wed/Sun updates.