Norah’s bilirubin levels were very difficult to predict after that first hospitalization. We went for several bloodwork panels, went to the hospital a time or two and in general felt totally naive to what was happening. No one we knew had ever gone through this with their babies and as 1st time parents we were teetering the line between denial and paranoia all the time. I mean, before she was born we had no idea there were 2 kinds of bilirubin and had difficulty remembering the significance of direct vs indirect bilirubin levels.

During the first month or so of her life we had many visitors! Grandma Tam and Grandpa Gary were the first to meet Norah, then Papa Fred and Nana Linda. Grandma Jacki was able to visit for 10 days and then shortly after Aunt Cindy got to visit. Norah was quite the popular gal!!!

However, when at 5 weeks old Norah’s bilirubin levels again went up to over 9 mg/dl total bilirubin we were told we needed to get a liver biopsy to determine the cause. We went in on a Monday for the procedure to Sunrise hospital and after about 40 minutes the procedure was done. By Tuesday evening we were released even though th biopsy still didn’t provide a definitive diagnosis. We were told Norah needed to start on a medication and a vitamin regardless of the correct diagnosis because it was either a form of hepatitis or Biliary Atresia. We were also told we had to meet with a surgeon the next day (Wednesday) and that she would be scheduled for a cholangiogram by the end of the week.

Friday morning we met with Norah’s doctors and got her prepped and ready for the procedure. The surgeon told us that depending on what happened during the cholangiogram, he might have to perform a very serious surgery called a Kasai procedure if they determined that she indeed had Biliary Atresia. He also said that she would be in the operating room for a minimum of an hour but up to 3 depending on what happened and that a nurse would keep us updated. So the nurse took her from my arms as I looked one last time at her cute, nearly flawless belly and prayed we would see her within an hour or two.