Day 23

We met with the neurologist this morning to discuss Avery.  He walked us again through her head ultrasounds, and talked about the implications of the damage she has and the size of the hydrocephalus.  It was certainly not a cheerful conversation, and I think he couldn't quite completely understand our choice to move forward with treating her condition, but we just felt like it's the right thing for her to do, right now.  It seems like at this point we are just going on what we feel is right on a daily basis, not knowing the end result other than what we can hope for.  Avery will have her first surgery procedure tomorrow morning, and the doctor will insert a small reservoir just below the surface of the skin and some tubing for fluid to drain out of the ventricle.  The idea is once the reservoir is installed, I think they can regularly extract fluid out of it by pulling it out with a needle.  This is a short-term solution, but it could get her closer to potential long-term solutions a little further down the road once she is bigger and a bit stronger.

Wren had another day of ups and downs. The staff noticed a bit more of the indications of infection on her arm, but none of the cultures drawn have confirmed whether it is fungal or bacterial as yet.  She spent some time on her stomach and really loved it, but she has gotten pretty sensitive to touch, so when I tried to contain her today she did not care for it and started desaturating a lot.  She still lets me read to her, so hey, I'll take it.

Both girls still have prominent PDAs and are not yet taking a lot of food or working toward getting off the ventilator.