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

  • Surgery Day choices

    Surgery Day choices

    To say “it’s been a day” would be an understatement. There are so many times when this little girls bravery amazes me but each time it still takes me by surprise. Today was long. Very very long. As adults, we struggled with the schedule. There were lots of shed tears, frustrations, cries to return home…

    Read more: Surgery Day choices
  • Getting Settled

    Getting Settled

    We arrived safe and sound yesterday. It was definitely a whirlwind of a day. Patient housing is situated right by Fenway park. Which means we have lots of food options to try out 😉 Katja picked Woodfire pizza for dinner and some delicious noodles for this evening. We did some grocery shopping and found a…

    Read more: Getting Settled
  • cotten Candy clouds

    cotten Candy clouds

    Up, up and away…. We’ve departed Seattle and have had a fairly smooth flight. We are about halfway in a 5.5-6hr flight. Katja’s tired, crabby and always hungry. So it’s been a struggle keeping her entertained AND masked! 3 days to surgery, she can’t get sick now! I think the highlight of flying for her…

    Read more: cotten Candy clouds

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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