Jordan’s Story

Site created on May 30, 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.


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.

Newest Update

Update on Jordan - Nov. 29

Journal entry by Carli Dravitz —

It’s been 2 months since our last Caringbridge update. Let’s just say, we’ve been busy! 

Jordan is doing, overall, fantastic! Although we have been called back to Minneapolis on a few occasions and have visited our local ER about 6(?) times in the last couple months, her health is really looking up!

Our latest hospital stay was for fevers Jordan was experiencing 5 nights in a row. She caught a virus and it had to run its course, but in a patient such as Jordan, they had to be extra cautious and treat her with antibiotic just incase a serious infection was brewing. She is feeling much better, and we were discharged today after staying 3 nights at the U of M. 

We were airlifted on one occasion in October when Jordan’s fever reached 103.6. They treated her with a broad antibiotic but we never found out what caused it. 

Some of her meds have had some adverse effects such as alarmingly high potassium levels and kidney functions. Thankfully, we were recently able to discontinue some meds and reduce others!

Everyday is such a treat with Jordan in our lives. She crawls, stands, and almost walks! She loves picking on our poodle, Mr. Ben. He is a gentle giant and tolerates her frequent riding and hair pulling. She shakes her head ‘no’ when we give her medicine she doesn’t like, also when she knows she is about to get into trouble. She waves hello and goodbye, she likes to bounce to music, play patty-cake, and loves to laugh! Puffs are her favorite food, but she is an adventurous eater. Her eyes are a beautiful rich brown, she’s got hair down to her shoulder blades and 3 teeth! 

We are really enjoying being home, James has been back to work a while now and I made the decision to stay home with Jordan during the first year post-transplant. We are hoping to be HOME for the holidays, I already have her house decorated, I am so excited for Jordan’s first christmas! 

She is such a special, beautiful, fun girl, James and I are truly privileged to be her parents. We are overjoyed to see her thriving and learning new things everyday; we too, have learned so much from her. Parenthood is such a trip! 

-Jordan’s Happy Momma 


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