Confessions of a Mended Heart

Katja's Journey to (W)hole Heartedness

Welcome!

Welcome to Katja’s blog. A place for information, updates and our “laugh instead of cry” humor of living with a child with CHD (Congenital Heart Defects). Take a seat and prepare for a long emotional journey of our ups and downs. Feel free to browse posts about Katja, her heart and her previous surgeries. Newest updates are available below:

Updates

  • Failure Isn’t An Option

    Failure Isn’t An Option

    As I always say… “No news is good news”.

    We spent the summer blissfully appointment and hospital free. Katja was doing great and we very much enjoyed the break.

    Two months…. We got two.

    Early Sept I started to notice her a little off. I had hoped it was just the Tween years upon us. Then we saw Transplant…..

    There is significant changes to her pulmonary donor valve. Some minor/moderate ones to her aortic. Then her DSA’s (donor specific antibodies from her donor) increased with new types showing. Yesterday she had repeat labs. Her BNP (measures heart damage) increased 3 times in 2 weeks. Her immunosuppressant levels plummeted too.

    Seattle is consulting with DC and Boston. We still don’t know what rejection looks like in PHT kids. We have no way to test the tissue either. Her teams are scratching their heads as to what is causing this.

    For now, we are continuing to repeat labs, repeat her echos and watch/wait. Pray for Katja, she needs a break. This kid has suffered so much through her short life, she deserves a break 💔

    Jenn's avatar

    Written By:

    Jenn

More Updates

  • Stages of Grief with a complex child

    Stages of Grief with a complex child

    It’s taken me a long time to write this. I wish I could have found the words sooner but the many stages of grief have been difficult. I’ve been in denial. Hoping that what I’ve been seeing was just my imagination. If we pretended everything was okay, then it would be… Right? Guilt for not…

    Read more: Stages of Grief with a complex child
  • (W)Hole Heartedness

    (W)Hole Heartedness

    Katja’s recovery has been slow and smooth. Which is just the way we want it 😉 Her stamina is improving weekly. The first days after surgery included multiple naps, then getting to lunch was difficult. Now she can make it to about 6pm before she’s ready for bed. The amazing thing about the human body…

    Read more: (W)Hole Heartedness

  • She’S Out!!!

    7 days Post Op and she’s out of the hospital and resting comfortably back at the Bon (hospital housing).

    Read more: She’S Out!!!

About Us

We are a fun loving family of 7. I’m Jenn, the Mom and words behind the blog. Dad Jori is the IT backbone of making sure I don’t go crazy over features. We have 5 beautiful children. Nevaeh (17), Twins Arianna & Araceli (15), Katja “Our Mended little Heart” (9) and Gryffin “Finn” (4).

Save Katja’s Heart: Urgent Flight for a Rare Transplant

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