Oxygen off

 The last 2 days have been very good for Michael. He has been weening down on things all week, and today he finally got his oxygen off - for the first time since surgery! He looks awesome! All he has in is a feeding tube now. They are feeding him every couple hours through the tube and they are also starting to try bottles. He is handling everything really well. He looks at us and responds to our voices when we talk. The fear and worry about another surgery seem to be contained for now. His arrhythmia looks like it's under control. He has been in a normal sinus rhythm for a about a week. I think the only thing he is on now is the arrhythmia medicine, everything else has been turned off. His oxygen is still in the 90's and his respiration doesn't look as bad as it did last week. He also got to wear his first piece of clothing today. We are both getting excited to finally take our little boy home.

The reality of having a baby with a heart condition is starting to worry me a little bit. I don't know if I will ever feel comfortable going on a road trip again. I don't think either of us are ever going to sleep. I don't know if I will trust anyone to watch him or take care of him. There are just so many things to worry about, but I also don't want him to be the bubble boy. I want both my kids to have a life full of experiences and adventures. I am hoping this mitral valve will just grow with him and start functioning better as he grows. I am so excited to see him and Zoey together. This is a roller coaster ride.