Day 102 - The day we went to Children's Hospital

Ava's blood gas was in the 40s today so they moved her vent down to 30 bpm. She was in 65 - 72% O2 today. She was moved to Children's around 2pm this afternoon. I got to hold her for over an hour this morning before she left. It was heavenly and she did really well while I held her. She even satted at 100%. The nurse at Children's this evening said that she was 100% there too.

They put her on lazik's again to get rid of the extra fluid in her lungs. They said her lungs looked moist. The doctor also said that Ava isn't the worst baby that she has seen. That is good to hear for once.

As of this afternoon, Ava weighed 6 lbs. That will probably be different tomorrow with the extra fluid. They also put her down to 47ml of food so she isn't so saturated with fluid.

When I went in this afternoon, I met a woman who has a 4 month old on a trach. It's funny because I had this feeling that the daughter she was speaking of, was in that situation. Her daughter has a trach and g-tube as well, and will be going home soon. She was very nice and she gave me her phone number. It was good to find someone in a similar situation. She also had a daughter. It seemed like a very open environment and very welcoming. We are looking forward to Ava coming home. When we told the doc that we were told that Ava may possibly be in the hospital in 2 years, she told us that she hasn't seen that in over 30 years. So that made us hopeful that she can come home as long as she doesn't get an infection.

Thank you to everyone who has helped us with kind and encouraging words and of course to my wonderful parents who have watched my two other beautiful girls dutifully every day for the past 102 days.

Praying that Ava gets healthy and any infection stays away from her...