Anna is doing better now. She is talking a lot. Creating her own words. She is doing all the funny stuff to make us laugh. Her personality changed a lot after coming from the hospital. We are saying it is new Anna. Started to walk along the couch again. I am not going to work now, so Anna is so happy to have mommy always with her. So now I am running with her all day. We are having a great time together. While working it was very difficult to have a quality time with her.
Her Gtube feed is going good now. For a few weeks after coming from hospital, she was throwing up every morning. Later we found out that the pump was malfunctioning. It was feeding her in a faster rate than the rate we set. We got the pump replaced to a new brand, Kangaroo, which is a lot better than the first pump, Interalite infinity. Since we are running in a lower rate now, she is not getting enough calories. We need to slowly increase it. She still has occasional throwing up, I feel like, it is taking more time for her to digest. Children in her age can drink more than 4 ounces at a time, but she always was able to drink only two ounces at a time in 2 hour interval. We were thinking like it was because of her mouth hurts that she is drinking less. If her throwing up gets worse we need to look into this issue. She has reflux too, for which she is on Prevacid.
Then, most of you might have known that Tripp got his wings. He was very very sick for a long time now. Now he is free of pain. His mom, Courtney is a very nice lady, she is the first person I contacted after we got the diagnosis of Anna. She was very helpful to get started with Anna's care. I am praying for her to cope with this difficult times. Saying goodbye to our baby is very very hard and no mother should go through that pain. I can't think of a life without my Anna. Praying real hard to God to keep my baby healthy and safe!!