Paisley’s Journey as a HLHS Warrior

01/28/2026

It’s been seriously ages since I’ve used this page to update our loved ones.

Paisley had her Fontan in July of this year and it was a big deal.

At home her oxygen saturations were dipping into the 30’s and she couldn’t take more than about 5-6 steps at a time.

We received a miracle with the successful open heart surgery. The risks were extremely high and we had been working on. Loving to Boston to have her surgery there. We ran out of time and she needed the Fontan. So with the risk of making it off the table 0-50% we prayed and leaped.

She made it and she came out of the OR extubated! No one thought this would be the outcome, but Paisley knew what to do.

It was a bit of a rocky recovery with several complications, one of them being chylothorax (which took many many chest tubes and other tough things to heal.)

She’s home and growing and developing into such a great person.

Thanks for all the love and support.

I’ll try to keep this a bit more updated. ❤

01/12/2024

My heart breaks (because I was in the hospital), but rejoices that Paisley celebrated her second birthday!

Happiest Birthday to the strongest human I’ve ever met!

I love you P Sugar!

01/12/2024

Because everyone need a cute nakey heart warrior Paisley photo!

01/12/2024

Paisley had an echo this week while I was in the hospital. To all of our loving suprise her heart is “stable” at the moment. She’s growing (she’s a whopping 25 pounds!) and having so much fun with all her hospital family and her Grandmas who visit her everyday.

I feel immensely grateful for this news.

10/20/2023

Paisley is seriously the cutest human on the planet! 🎃

10/18/2023

My good friends made a GofundMe for my cute little family.

I’d really appreciate it if you could share with your friends, family, and your communities.

We love you and are so grateful to have such loving support during this really difficult time.

Love, Steph and Family

Hello! Our amazing friend, Stephanie Sorensen “Steph,” is the most amazing M… Heather Rapp needs your support for Sweet Baby Paisley needs a Heart Transplant

10/16/2023

Paisley’s surgeon requested a Heart CT Scan to measure how much room she has.

…They gave her versed and then propofol and off she went to sleep.

These things are never easy for me to watch.

I love her so much.

10/11/2023

Hey Friends, I have had several people reach out to see how they can help or what they can do to make our life a little easier.

Honestly, I’m barely functioning at times.

Paisley could be in the hospital up to a year, possibly longer depending on when she receives her gift of a heart transplant. ♥️

I’m spread thin between all of my roles and spend all of my time at the hospital with P. (When my big girls aren’t home.)

I put together an Amazon wish list at the advice of a friend on things we need or may like.

I have made this shareable if you feel like you’d like to share with your friends and family.

Please don’t feel obligated to purchase anything, but if you’d like to, thank you. ♥️