July 17, 2011 - 134 Days Old

Today has been a pretty good day. I sang in my ward's Sacrament Meeting this morning, so Amaraa didn't go to the hospital at 6:30 AM as she usually does. We all got ready and went to church. My parents came up to hear me sing, so they met us there. We have lived in that ward for six and a half years and we can probably count on one hand the times we have made it to church on time. But we did today! I felt like my song went really well and Kandice Gardner played the piano beautifully.

The doctors decided to pull Aiden's feeding tube out today. One fewer tube...yay! Now, he either nurses or gets a bottle. He is doing well with both now, so he doesn't need that feeding tube anymore. The only disadvantage is that he has to take his medicines by mouth now, and he doesn't like the taste of them. He has a little baby swing in his room. He loves swinging back and forth, watching his mobile and listening to the music it plays. He is still receiving breathing treatments several times a day. The treatments calm him down and help him to breathe much better.

We will be so glad when Aiden comes home. Amaraa spends most of every day at the hospital. It wears her out and she doesn't get to see Skylar and Jasmine as much as she would like. A couple of weeks ago, Amaraa had to do three "12-hour requests" where she had to be at the hospital for three twelve hour periods and feed Aiden whenever he indicated that he was hungry. They are going to have her do a "24-hour request" soon, too (maybe more than one). The "requests" are long marathon sessions where she just has to stay by Aiden's bedside all day. Before Aiden comes home, we both have to go and stay overnight at the hospital with him to get used to all of the monitors and administering all of his medications and treatments, etc. That's called "rooming in". We are lucky to have Amaraa's mom with us to help out with the kids, but it is still hard for Amaraa to have to be away from home so much. Either Amaraa or Aiden or both have been in the hospital for almost seven months now. Sky and Jazzy miss their mom and dad. It has been a long ordeal and we won't be too sad to have everyone home at last.