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Day of Life 13: Missing Organ or Sluggish Performance? | Amanda Trumpower

Jayce had a liver ultrasound yesterday. We have more information than before. We need additional time and tests to see what the future holds.

The good news: Nothing they saw indicated a need for immediate surgery. The liver was the correct size and appeared to be functioning well.

The bad news: It’s not bad news so much as a red flag. The gallbladder is supposed to connect to the liver via bile ducts. During the ultrasound, the medical team couldn’t find Jayce’s gallbladder or ducts.

Possible explanations:

  • He was born without a gallbladder. Not the end of the world. In fact, given my family history of gallbladder removal, he may be better off.
  • The ducts and gallbladder are present but hard to see because they are so small.
  • He has a disease that negatively affected his liver and closed off the ducts.

Possible solutions:

  • Time: The doctor working his case is a specialist in baby livers. It’s not uncommon for premies to have liver issues until they get bigger. The problem self-resolves most of the time.
  • Medication: This would be an option depending on how well the liver functions.
  • Honestly, I don’t remember the other solutions. We had a lot of meetings today.

What’s next: Jayce’s blood panel was sent to a Cincinnati research hospital for extensive evaluation. They will screen for 64 diseases. Most of these, they already know Jayce does not have. But there are a few liver-based diseases they want to check. It will take 2-4 weeks to get results.

Jayce will receive vitamins three times a week to help him until the bilirubin is under control. This normally is a shot but they decided to give it via capsules. Thanks, God, for eliminating that needle. I appreciate it!

There is more good news. Although we have to wait for the panel results, that alone won’t keep him in the hospital. Once he can drink bottles, breathe without problems, and regulate his own body temperature, he can come home!

He is still off the respiratory support and we love it. It is wonderful to finally see his face.

Justine continues to do well. She has finished several bottles without issue. She does need to build up her endurance before she can come home. Every day is progress!

Thank you for your continued prayers.