Tag: Heart Defect


  • 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
  • The last minute shuffle

    The last minute shuffle


    With all the chaos going on before we leave (I’m looking at you refrigerator that decided to break down yesterday 😑) what’s a little last minute date shuffle? Received the call this morning that the surgery date has been moved from Friday (June 23rd) to Thursday (22nd). Looks like we won’t make Legoland before surgery…

    Read more: The last minute shuffle
  • What’s life without a little chaos

    What’s life without a little chaos


    It’s the 10 day count down! Things here have been super busy. Lots of end of school year activities, last minute appointments and getting everyone ready for us leaving. We’ve been trying our hardest to keep Katja’s day to day as normal as possible but with the heat and her heart, she’s been pretty tired/crabby.…

    Read more: What’s life without a little chaos
  • Echos of the Heart

    Echos of the Heart


    Latest Heart Echo update

    Read more: Echos of the Heart
  • No Growth In 5 Days!

    No Growth In 5 Days!


    Katja’s cultures for endocarditis came back

    Read more: No Growth In 5 Days!
  • We have Dates for OHS #3

    We have Dates for OHS #3


    Katja seems to be a little better. We had an ER visit  last week after she spiked multiple high fevers a week apart. Her Cardiology team was worried about endocarditis.

    Read more: We have Dates for OHS #3
  • ADHD and Heart kids

    ADHD and Heart kids


    Children that have gone under bypass are 5 times more likely to develop ADHD.

    Read more: ADHD and Heart kids
  • Unforeseen Complications. What is Post Pump Chorea?

    Unforeseen Complications. What is Post Pump Chorea?


    Complication. It’s a word no parent ever wants to hear after surgery.

    Read more: Unforeseen Complications. What is Post Pump Chorea?
  • What is an Ozaki? Katja’s 2nd OHS was complicated.

    What is an Ozaki? Katja’s 2nd OHS was complicated.


    During an Ozaki procedure the diseased aortic valve leaflets are removed, and a new aortic valve is recreated by sewing the leaflets into the aortic valve, providing a new functioning valve.

    Read more: What is an Ozaki? Katja’s 2nd OHS was complicated.

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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