May 30, 2018 Latest post:
Nov 29, 2018
April 2nd, 2018 - During our 2-month checkup at our local clinic, we casually noticed our baby Jordan had looked slightly yellow still. Although jaundice is common in babies, the condition usually takes care of itself in the first month or so, with some children needing a simple phototherapy session.
Our pediatrician ordered labs the same day to check as a general precaution to check various blood levels, namely bilirubin, which is tied directly to jaundice. We went home the same day, with no reason to think anything else was needed.
The next day our pediatrician called us and mentioned that her bilirubin levels and other liver enzymes were uncharacteristically high. She continued and said we need to check-in to our local hospital and plan to stay for the evening. The goal was to do a variety of tests and get a better handle of why her levels were high and increasing.
First Hospital Stay
April 3rd, 2018 - During our stay at the local hospital, we had teams in and out through our entire stay trying to get a better handle of what was going on. They wanted rule out some major conditions that she could have and hopefully provide a quick fix and send us home. But as time went on, there were signs that things were becoming concerning. They could rule out simpler conditions, like a UTI, hepatitis, but not more serious ones like biliary atresia, which they were most concerned about. Additionally, the ultrasound technician had trouble getting a read on her liver's main bile duct and gallbladder, which further complicated what could be going on.
The next day, her results came in. Doctors and GI specialists said her liver was failing and we needed to go to the Children's Hospital in Minneapolis immediately. They said plan to stay for two weeks and they'll be ready when you get there.
Doctors feared what they had been trying to rule out may very well be a reality: Jordan may have biliary atresia, an uncurable liver disease that affects 1 in 15,000-20,000 infants. Her main bile duct from the liver was not fully formed, meaning bile and other toxins weren’t able to drain properly into the intestine. This caused inflammation, cirrhosis of the liver, and bilirubin to be passed through her bloodstream, providing a yellow tint to her skin.
Minneapolis - Diagnosis
April 4th, 2018 - We headed home that afternoon, scrambled to pack our belongings, and quickly made arrangements for family to take care of our dog. Stress began to mount on that drive, as we had no clear indication of what was going on, but knew the situation was very serious and time sensitive.
When we arrived, more testing had to be done to confirm our local hospital's assumptions. The next day they said all signs lead to biliary atresia and we needed to schedule her for surgery ASAP.
On April 6th, 2018, Jordan underwent a surgery called the Kasai Procedure where the surgeon recreates a bile duct with her own intestine. During the surgery they could tell there was significant scarring and said it was a “tired” looking liver. We were told the Kasai procedure had a rule of thirds: one third of the time the procedure fixes the Biliary Atresia, one third of the time the Kasai is a temporary fix and the child will need a transplant later in life, and the other third of the time the procedure fails and requires an immediate liver transplant.
May 21st, 2018 - After Jordan’s recovery and additional blood testing, doctors at the University of Minnesota Masonic Children's hospital in Minneapolis agreed that the procedure failed and the only solution for her is to receive a liver transplant.
Jordan’s health is slowly declining and she will need a liver transplant before the end of the year. She is now four months old, still eating/sleeping well, meeting her developmental milestones, and loves being sang to, going outside, smiling, and munching on her fingers. We’ve got a long road ahead, but doctors have reassured us that she will thrive and live a normal life after she receives her new liver.
We appreciate your kindness and are grateful for all the support from our friends, family, and everyone else who have taken the time to learn more about Jordan's story.