A lot of people have asked how we got to this point. After Beckett was born his bilirubin tested a little high. It wasn’t that high but enough that we needed to come back in a couple days and get him retested. We came back when he was three days old and got retested. The levels came within the normal range so we went home and didn’t think about it. At Beckett’s 2 week appointment, the doctor commented that he looked a little yellow but neither he nor I was concerned. After that it seemed like Beckett’s eyes got more white so I figured that his bilirubin was finally going down. A couple weeks before he turned 2 months, I started to notice that he looked really yellow. I started to see it in pictures and could really tell sometimes in his eyes. I had the 2 months appointment set up already so I decided to bring it up at the appointment.
On Monday October 6th, I got mastitis. I was so sick and nauseous and had hot and cold flashes. I was so miserable. But I didn’t want to reschedule his appointment because I was feeling concerned. Because of all that I asked my mom to come with me to his appointment and I am so grateful that was the case. I could not have handled all of what happened by myself. We showed up at the appointment and the nurse asked if I had any concerns. I said I did. When the doctor came in he said, “So you have some concerns?” I said, “Yeah, he’s yellow.” My doctor replied, “Yep, he’s really yellow. That was the first thing I noticed when I came in. I don’t like it at all. It’s super concerning.” My heart sank. I thought it would be an easy fix, bili lights or something. But I could just tell that it wasn’t good. My doctor said he was concerned about Biliary Atresia. He then said, “Don’t you dare google this until we confirm that’s what it is.” He then told me I needed to go to the hospital to get some bloodwork done and that he would make some phone calls. He said I would hear from him the next day to get the results of the labs.
My mom and I took the kids over to the hospital. The nurse gave me a heat pack to put on his heel so that we could just do a heel prick for the blood draw. Once we got called back the nurse looked at Beckett and said to me, “I don’t think we can do a heel prick. We need too much blood.” My heart sank. We then went to the back room and I had to hold him down while two nurses tried to draw blood. They blew a vein in his one arm and had to go to his other arm. It was so sad!
After the hospital, we went home. I tried not to cry but the fear of what could possibly be going on was so scary for me. I tried to keep busy knowing that we wouldn’t be hearing anything until the next day. I called Shawn at work and he came home. We both were really distraught and then we got a phone call from our pediatrician. He had already received the results of the blood draw and was really concerned. He had called up to Primary Children’s and just happened to talk to THE liver specialist, Dr. Book. She was really concerned about the labs as well and told him that her office would be reaching out in the next day or so to make an appointment. We hung up the phone with him and immediately got a call from Dr. Book’s office. They wanted us in the next day Wednesday the 8th at 11 am for a liver ultrasound. They told me that he had to fast for 8 hours but then changed that to just 4 hours which I was so grateful for. We got directions to the hospital and then hung up the phone.
I remember feeling so helpless and confused. I had no idea what was going on, just that I went in for a 2 month well check visit and now I had appointments with really big Doctors and there was talk of a possible surgery. It was so scary. But I had no idea just what we were in store for.
Written by: Kimber