I would be lying if I said most days I wouldn't love to roll in a ball and cry. Life is stressful with a medically ill child. There is a lot of pressure to make sure you KNOW your baby so you can catch the 1st change because it could be a sign of something wrong. Something as little as the common cold could be the first sign of heart failure, what I think could be teething could be heart failure, a temp could be heart failure. As Raygen's mom I weigh my decisions carefully. I know taking her to the hospital is so scary for her and before I put her through all the touching, looking, and poking I better be sure that I feel something is wrong. Getting these heart babies too upset could be a long road and you never know where it could end.
It all started Thursday night when Raygen didn't sleep well. Friday she seemed fine, but she didn't sleep well that night either. Friday we also changed her feed a little so I thought maybe the changes we made could have been the reason she was so fussy Friday. We increased her bolus, added prune juice and calorie enhancer since she lost some weight. Saturday, she was very tired, running a low temp and just wasnt herself. Same with Sunday. Today Monday she is still the same. Tired, fussy, and running a low temp. We are slowing down her feed giving her smaller bolus at a time and giving her Tyenol. I'm not sure what is going on with our girl, but I would be lieing if I said I wasnt scared. Please pray for her and I'll post more when I can. Right now we are calling and getting her doctors thoughts and will go from there on what our next steps should be.