The first month after surgery felt amazing! While it was like bringing home a newborn all over again (we had to relearn her hunger cues, how to take care of her incision, how to give her medications, working on breastfeeding, doing super quick diaper changes because every time she laid down she screamed in fear), we were just so happy that our little girl was doing so well. All her doctors marveled at her progress in such a short amount of time and her bilirubin got down to 1.3 after surgery… lower than it had ever been!

Grandma Jacki came to visit again right after we got home to help with the adjustment and to let Mommy & Daddy get some sleep after such an exhausting 2 weeks in the hospital. Seemed like everyone was smiley about everything!

We also had visits from Papa Fred, Grandma GG, and Jason’s brother and his family over the next few weeks.

It was about 6 weeks after surgery and I was continuing to notice swelling around the incision and all around Norah’s right side of her abdomen. I was assured over and over that it was fine, and even when her bilirubin levels were checked after my insistence due to concerns about lighter stools, the doctors kept telling us that it was too soon after surgery to be concerned that something was going wrong. She didn’t have fevers, didn’t appear to be sensitive to the touch anywhere on her stomach, wasn’t vomiting or having diarrhea, and kept having plenty of wet and dirty diapers so none of her doctors were concerned. However, later in April I again pushed for blood work as Norah appeared to be getting more and more yellow to me and I wasn’t satisfied with just phone calls to the doctors’ assistants telling me not to worry. I knew better…

Norah’s bilirubin suddenly jumped up again, and this time it was pretty major. We had a couple more blood draws, doctors appointments, ultrasounds and chest x-rays but the bottom line is that our gastroenterologist’s office called me late on a Friday afternoon and his assistant relayed a message along the lines of, “A HIDA scan would not be helpful diagnostically at this point because even if there was drainage her bilirubin levels are too high for appropriate readings/scans. She is being referred to UCLA to their liver transplant evaluation team and your insurance has already been checked as UCLA is a preferred provider and they will contact you for an appointment.” I’m sure there were other things said and that these weren’t the exact words, but the gist of it was that the doctor felt that she had taken a pretty drastic turn for the worse. We were devastated to no end. Absolutely. Utterly. Devastated. Jason came home from work early that night so we could all just be together as a family as we tried to comprehend what was ahead of us. How could things have been going so, SO well and then go so horribly wrong in such a short amount of time? We still don’t know…