See my baby is awake.
Hang tight Ava we will get over this soon.
Ava is looking so much better today. I am just a litttle shocked. Her face is back down to normal size. Her hands are still not quite there but much better. Her belly went from 54.5cm yesterday to 52.5cm this morning. I was getting very concerned yesterday that her tummy was still really large ina a spot. Her drain tubes for her belly were working over time yesterday and last night. I did get scared when at about 10pm we started seeing blood out her stomach opening drains. It was not severe so they thought it was alright. She is off Lasix and peeing great. She is really starting to really look like Ava. Her eyes are still very sickly. I think that might be because of the sedation and pain medicines.
As I mentioned before they are not sure when they are going to do the surgery to put a better patch in place to hold her tummy contents inside. The patch has to be strong so she can get up and start moving around. The OR here is just being used for emergencies because of staffing conflicts due to an anesteologist conference. Great reason huh? So I have my meeting today with the staff here to see if we can come up with a plan. I'm worried if we don't do this surgery soon she might get tired of the ventilator. She is coping pretty well for a two year old. Bless her little heart.
We are going to have Physical therapy and Ocupational therapy come in and do work with her. They also have musical therapy as well. This hospital has a program called Child Life that helps with all kinds of things. I think I have mentioned it before. They do crafts for the siblings and they also let parents borow laptops. They do all kinds of wonderful things. Robin is the lady I always to to about this program and she is so awesome.
Thanks for all the prayers. I love to see her being alive. She is just such an amazing little girl. Her will to survive is unbelieveable!