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Beckett’s Diagnosis – Day 1

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I woke the baby up at 7 am to feed him before he had to fast for four hours for the ultrasound that we had scheduled. We arrived at the hospital at 11 am and got checked in. Then we got called back to the ultrasound room. The tech (Brad) was great. He was really nice and helped us feel comfortable. Beckett had to lay there for about 45 minutes while we did the ultrasound of his liver, ducts, and gall bladder. He did amazing! Shawn just laid his hand on him and helped him keep a binky in and he did so well lying still. The tech was impressed. After the initial pictures were taken, the radiologist came in and looked at everything before they sent it over to Dr. Books (the liver specialist) office. We could hear the tech and radiologist talking but couldn’t really understand everything. I thought I heard them say that they couldn’t find his gallbladder at all. It was really scary not understanding what was going on. After they finished talking, we were done and were to head straight to Dr. Book’s office. We took a quick pit stop so I could feed Beckett and then we headed over.

We got to her office, checked in and got Beckett undressed for measurements. Then came one of the most painful waits of my entire life. Because this was a last minute appt and there was no set time, just a head over when he’s finished, we had to just wait for them to get to us. On the one hand it was super frustrating sitting there for over an hour but at the same time we were just so grateful to be able to get seen so quickly especially if this turned into something scary. We still had hopes that it was something quick and easy to take care of. Beckett was amazing. He just hung out and was as cute as ever.

Then one of Dr. Book’s associates (Krishna) came in the room. We did a thorough history and he checked him out. Then he went and consulted with Dr. Book and shortly after that, they came in the room, along with Brooke who is the liver coordinator at Primary Children’s. Dr. Book sat down, introduced herself to us and then it was straight to business. She said based on what they had seen so far she was fairly sure that Beckett did indeed have Biliary Atresia. She pulled up a chart and started to explain what that meant to us. Here is the basic idea. You have your liver. Coming out of the liver are a series of ducts that connect the liver to the intestines. This is how the liver drains the bile. If Beckett did have BA, then that meant that those ducts were either missing or severely damaged. Thus no drainage. The bile was just building up in his liver and that was causing the jaundice. It causes liver damage because the bile is toxic to just sit there. If that was the case then we would need a surgery called the Kasai. They would cut his small intestine and connect it directly to the liver, essentially bypassing the ducts. Then the part of the small intestine that connects to the stomach would be sewn back to the piece now connecting to the liver.

We were stunned. And overwhelmed. And confused. We asked questions about what that meant for his life. We learned that the surgery is just a band aid. If we don’t do the surgery, he would die or need a transplant within the year. If we did the surgery then it buys us time. Time for him to get bigger and stronger. This would allow the pool of donors to be larger. We both were sobbing. It was the hardest thing I have ever had to process. Dr. Book was amazing. She said we needed to run further tests to confirm the diagnosis. She wanted us to be admitted to the hospital so that we could streamline the process since the surgery is time sensitive. They won’t typically do the surgery after the baby is 90 days old because the success rate goes way down. So she wanted to jump on it. She reassured us that it was going to be ok and that they would take good care of us. She then turned us over to Brooke. She was amazing. She helped us get admitted to the hospital and told us that she would be there every step of the way through all the craziness. We were so overwhelmed but were so grateful for the help that we were receiving.

After the appointment, it took a little over an hour to get admitted to the hospital. We had to wait until a bed was ready for us. We ate some lunch, called our parents and cried a lot. Finally we were told that our room was ready and we could head up. It was late afternoon by the time we were admitted so the game plan for the rest of the day was to take a bunch of blood and also start an IV. It was hard watching them do the blood again, and again, and again but the IV was the worst. We asked if they could do it in his foot because he loves sucking on his hands. They tried one of his feet and it didn’t work. So then they moved to his hand. Again it didn’t work. Finally they tried his other foot and it worked. He just screamed and cried the whole time. And kicked. He kicked a lot and the nurses kept commenting on just how strong he was. All I could think of was how grateful I was that he was big and strong because if he needed surgery then he would need that strength.

He did really great. Even with the IV and the monitors that he was hooked up to, we could still pull him out and hold him. That was so nice to be close. We also blessed Beckett. We were told that surgery was imminent and didn’t want to wait until after. I wanted him blessed before. So we had a few family members come up to the hospital and we were able to bless him. It was really special. I’ll do another post on that later. That first night in the hospital, we slept horribly. I got ONE hour of sleep. The rest of the time was spent praying, crying and thinking. I was trying to process just how much this was going to change our lives. And how scared I was for the surgery.

Written by: Kimber

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The Beginning – 2 Month Appointment

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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

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