Hurts My Heart

The past few days have been up and down for Avery. For the most part, she is still stable...just trying to get used to the little changes. She is back on the pacemaker because her heart rate dropped some. She is doing better now. She is still not peeing as much as the docs would like, but some of that is to be expected because they removed the medication to help her pee. Her little kidneys just need to get used to working on their own. She is really swollen and doesn't quite look herself. Hopefully she can get rid of some of the fluid soon. Her ventilator setting was increased some because she was not getting rid of CO2 as much as she should. Her meds for sedation have also been weened so that is good. She is able to move around a little more. She is now getting 2ml an hour of formula. She still seems to be tolerating that well. The nurse said she pooped twice today. We are really in that stage of one step forward and two steps back.

All of this is just so hard to watch. We just want to take it all away. We love her so much. I am feeling tired today and a little defeated.

Carissa