Day 98

During the past week, Wren has been given a 10-day course of a steroid to help her progress with breathing.  As soon as they put her on the medicine, she was able to drop her oxygen needs from 60% down to 28%, the lowest I've ever seen, and has dropped her required CPAP pressure from 9.0 down to 6.0, and this should drop further to 5.0 tomorrow.  Much of this improvement is likely thanks to the steroid, but even so, it's good to finally see her progress some.  There isn't a whole lot of time for her to be able to prove to the doctors that she's not going to need a tracheostomy to come home.

Avery is also doing well on her own and has been able to drop to a cannula pressure of 1.0 Liter per minute and is holding her oxygen in the mid-30s range.  The big next step for her is to get her to feed from a bottle, but in order to coordinate the suck/swallow/breathe reflexes, she needs to be breathing stably, which includes breathing sufficiently slowly.  Right now, she breathes at a fast rate of around 80 - 100 breaths per minute, and they'd like to see that consistently drop below 80 and with lower oxygen needs in order to try the bottle.  We may be trying her out with her first bottle tomorrow if she does well enough as they evaluate her in the morning rounds.

Here are a few of the latest pics.  They're still growing!

Avery





Wren







Every once in a while, we can catch a glimpse of what their faces look like without masks and tubes.