Tag: CHD


  • Unstoppable Heart

    Unstoppable Heart


    As always, Katja is unstoppable 🤗She’s being discharged early. She was up within 2hrs of surgery walking around the unit yesterday. She’s eating great , pain is minimal and she’s in good spirits. So she gets to come home today. She is such a Warrior 💪🏻

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  • She’s Out

    She’s Out


    She’s out and looking good! Pacemaker is in and doing it’s job.

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  • Time Starts


    She’s back. Surgery should take about 2.5hrs. She should be out around 11am.

    Read more: Time Starts
  • The Heart Of A Warrior

    The Heart Of A Warrior


    Yesterday morning Katja’s Dad found her convulsing on the stairs. She was rushed to SCH. She had multiple episodes while in the ER which was determined to be an AV block. Katja entered complete heart block for 14 seconds last night. She was immediately started on isoproterenol with full cardiac watch overnight. Her teams made…

    Read more: The Heart Of A Warrior
  • pneumonia, Blood Counts and Hospitals

    pneumonia, Blood Counts and Hospitals


    It’s been a really rough few months for Katja. She started with a minor cold in late Nov that progressed to pneumonia within 2 weeks. Since then, she’s had multiple antibiotics, steroids and medication changes including significantly reducing her immunosuppressants. However, her pneumonia continues to return. This is what lead to her being hospitalized last…

    Read more: pneumonia, Blood Counts and Hospitals
  • Home Sweet Home

    Home Sweet Home


    It’s official! We are finally heading home after 10w2d, that’s 2.5 months of being on the East Coast 😱 We are beyond grateful for all the love and support. Katja received a special private flight home 🚀 We’ll see you tomorrow afternoon Seattle with the PNW and Childrens National’s 1st Domino Partial Heart Transplant kid!…

    Read more: Home Sweet Home
  • Survival Mode

    Survival Mode


    We have been surviving these last few months. No thriving, no coasting, no getting by… surviving. We barely eat, we definitely haven’t been sleeping and we’ve let our own health go. My clothes are loose, my hair is shedding and I’m taking Motrin daily for pain. I’m surviving to give 110% of me to my…

    Read more: Survival Mode
  • Get Outta Here

    Get Outta Here


    And we are finally FREE!

    Read more: Get Outta Here
  • Realities

    Realities


    I’ve been getting a lot of messages asking how Katja is doing, what went wrong and general curiosity. We appreciate everyone’s concerns for her. I wish we had answers. I’ve waited days to post this because there isn’t much to answer. This is the reality of doing something only 40ish kids in the world have…

    Read more: Realities
  • Heart Block

    Heart Block


    Katja was given discharge instructions for tomorrow and then her heart decided otherwise… Late this afternoon she started having irregular beats that progressed to full 3 second skips. She developed Heart Block shortly after. She was urgently moved back to the CICU. Discussions about operating to put her pace wires back in, urgent echos and…

    Read more: Heart Block

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).

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