March 10th: Rain Rain Go Away

Today Janessa had both an urology appointment, and an intestinal care appointment at children's. We arrived at the urology clinic at 9 am and a renal ultrasound was done. Janessa's bladder was pretty full, and her left kidney showed very mild swelling, but none of that seemed to concern the urologist. They decided to cut back the catheter time to every six hours instead of four which is a huge plus for Janessa especially in the infection department. We are going to trail this every six hours and see how it goes, but if she is holding a large of urine, and not naturally urinating then we'll have to go back down to every four hours.

We got into the intestinal care appointment shortly after lunch, which Janessa was great during our lunch session by the way. During our monthly intestinal care fad we discussed Janessa's intake and output numbers, a new kind of formula for her(she really dislikes her neocate, so they are trailing her on vanilla elecare which she enjoyed so very much!), and transplant. Two transplant surgeons came in and we discussed her placement on the status 1 list, and what we are going to do about her liver. Janessa's liver looks really good, and we are hoping and they are hoping that we can just transplant Janessa's bowels, and try to keep her natural liver in, which would be better for her. In a short sense, if Janessa's bowel rejects she will be okay, and will be able to get a new bowel, at that point she will be considered short gut, but if the liver rejects the outlook is very poor for her being the liver is so essential in life.

On a positive note, Janessa's first tooth is finally coming through! We are so excited our baby is getting her first tooth, we weren't even sure if she would have even made it to that point this time last year. It's almost been a year since we moved back from Pennsylvania, on this date last year I was planning my trip for Philadelphia to get tests done on Miss Janessa, what a crazy, and hectic year it has been. I do say though, I am thankful everyday Janessa is doing as well as she is.