I never update this, so tonight I decided to. We finally brought Janessa home on June 6th 2010. It was a very happy day for us, to finally be as a family. The adjustments were a bit difficult, but I wouldn't trade them for the world to have my baby home. On June 22nd, Janessa was put on the transplant list for a liver, stomach, pancreas, small intestine, and colon. We were having a lot of problems with the lipids in her TPN. They were causing horrible liver damage, and her coloring was becoming more, and more yellow everyday. Finally they put her on a lipid called omegaven, which is made of fish oil, so her liver has been improving =]. Janessa has been hospitalized a few times through out June, and July for central line problems, mostly from her pulling them out, or being mispositioned internally. We had one central line infection scare, but the cultures came back negative. She is at the hospital tonight, tomorrow she will be home, her electrolytes went out of whack, and her potassium dropped to severe levels. Luckily they got it at a good level, and she will remain on 22 hours of TPN which was adjusted from 24 to 22 hours a few days ago.
Out next step, is keeping Janessa healthy, and waiting for the transplant call, and having a normal healthy baby that can eat<3
I'll try to keep this updated more, with recent events, usually I just post them on facebook, and forget about this.
