Norah had been in the operating room for about 45 minutes when a staff member of the hospital called our names in the waiting room and said that the nurse wanted to speak with us. We picked up the phone and I held it out so that Jason could hear what the nurse had to say. I don’t remember everything that she said but the phrase, “We are going ahead with the Kasai” was all I needed to know that Norah did in fact have Biliary Atresia.

The link below explains what the Kasai Procedure is and provides an illustration of what is disconnected and reconnected during this surgery for Biliary Atresia:

http://uofmchildrenshospital.org/HealthLibrary/Article/88701

Keep in mind Norah was only 7 weeks old and was having major abdominal surgery… Jason and I were a mess. In fact I vaguely remember getting light-headed and nearly falling to the floor with the phone still in my hand. Jason quickly pushed me into a consultation room as I cried hysterically, asking, “Why?” and “How can that be?” through sobs. We were soon put in a private consultation room so that we didn’t have to sit with everyone else in the waiting room for the remainder of Norah’s surgery. Once complete, the surgeon came to the room to speak with us about how the procedure went. He apologized that it was Biliary Atresia and said that overall her liver didn’t appear to be that unhealthy and they did manage to see bile flow before closing her up, so there was hope that she wouldn’t need a transplant if this procedure worked well. Through teary eyes we said thank you to him and awaited the anesthesiologist to come in once she had been taken to recovery. Both doctors commented that she did very well and there didn’t seem to be any complications during surgery, but Jason and I were still in shock and overwhelmed with what was happening to our baby.

I went to see her first while Jason stayed with the anesthesiologist in the consultation room for a few minutes to prepare himself to see her. When I went to her bedside, I was mortified to see her eyes wide open and a breathing mask over most of her face as she breathed heavily. I exclaimed, “She’s having trouble breathing! She’s not ok!” but the nurse assured me that the breathing mask was just drying out her eyes and once he readjusted it, she was able to appear more relaxed and a mist was put on her face so that her eyes didn’t get overly dried out. It was tough seeing her like that, hooked up to tons of wires, cords, with a huge scar across her belly, a drain sticking out of her lower abdomen and a central line in her neck as well as a couple of IV ports (one in her left arm and another in her left leg). When Jason came to her he nearly had the same reaction that I had a few minutes before. The nursing staff quickly realized that we were having difficulty with the situation before us and go us large reclining chairs that we could safely sit in next to Norah in case one or both of us got light-headed. It was all so surreal.

After a little while they transferred Norah to the PICU where she was in a private room with a large glass window and door looking right out to the nurse’s station. There was a small fold out chair that I would sleep on so I could stay with Norah 24/7. There was a parent lounge with a couple of bathrooms and a kitchen we could use, along with the other families on the  floor, so Jason stocked me up on snacks and drinks to keep me while I lived at the hospital. Norah would stay in the PICU until Sunday afternoon when we were moved to a room on the regular pediatric floor.