American Heart Walk : Ellie’s Story

Ellie Jo.
Ellie happens to be my husband’s cousin.
She also happens to only be [almost] 4.
That makes her one of Henry’s best friends. 
Keep reading to learn a little about Ellie’s life.
[Inserted throughout are quotes from Ellie's Mom, Heidi.]

 
Ellie Jo.
Every year, the Heart Walk for the AHA lands right around Ellie’s birthday.
Every year, Ellie’s family and friends get together for the walk, and then celebrate her birthday.
This year, we’ll be celebrating her 4th birthday.
And I’m so excited to be able to walk this year. [No wedding cakes to be delivered!]
I’m also excited to step in on my mother-in-law’s behalf to raise some awareness.

Ellie Jo.
Born with a congenital heart defect [CHD].
More specifically, hypoplastic left heart syndrome [HLHS].
Having open heart surgery at five days old.
Five months later, another open heart surgery.
Just this past April, when she’s nearing her 4th birthday, another open heart surgery.
The hope was for this to be the last.
It’s not.
She’s now waiting to put in a pacemaker.

“We were so excited for our routine ultrasound at twenty weeks gestation. It was then that we discovered our first child, a daughter, was diagnosed with a life threatening heart condition. The most exciting day of our lives as new parents turned into one of the scariest, most confusing days of our lives. Ellie was diagnosed with HLHS and severe aortic stenosis. Born at UIHC on August 8, 2007 Ellie underwent her first open heart surgery, the Norwood, at five days old. She was hospitalized for 31 days and went home with eight medications & an NG tube. At exactly 5 months old Ellie had her second open-heart surgery, the Glen, and was hospitalized 21 days with Chylothorox. With over a year of therapy she learned to drink her bottle, crawl and walk. This April Ellie had her third open heart surgery, the Fontan procedure. This was the completion of her pallation and three staged surgery process. Her heart will never be fixed but now the blood will flow more easily to the lungs with her single ventricle use. The Fontan was a very rough and long surgery for Ellie; we came very close to losing her. Each surgery is difficult but the older your child is the more you know them and love them. After prayers from nearly half of the country and around the world Ellie was guided through her recovery. She was hospitalized for 36 days this spring. We are now 9 weeks post-op and she is really starting to become her cute, sassy old self! Her voice is back, she is walking well, and has even started to do stairs again.” — Heidi 



Ellie Jo.

Enjoying arts and crafts with her mom.
Her favorite color is purple.
She’s a girly girl.
A wonderful friend to Henry.
As well as a wonderful big sister to Katelyn.
Ellie Jo.
Twenty years ago, her life journey would be very different than it is today.
Due to research and funding, Ellie has led a pretty normal life.
Due to research and funding, Ellie has recovered from three open heart surgeries.
This research and funding has provided improvements in her surgeries.
Imagine what another twenty years will bring for Ellie.
Ellie Jo.
One day, Ellie will need a heart transplant.
Hopefully that day is way later, rather than sooner.
With research, we can hope that day can be put off longer.
The longer the wait, the more research that can be done.
More research means more improvements in her treatment.
Walk your local American Heart Walk to help raise awareness.

“To look at her you would never know she has had six cardiac catheter procedures on top of her three open-heart surgeries. Doctors tell us she will need a heart transplant someday. When? Nobody knows the answer to that. It could be next year or in twenty years. Right now we will continue to laugh, play and count our many blessings each day. Ellie is truly a miracle.” — Heidi

 
———————-
My personal goal is to help Ellie’s Entourage team raise $1000 for the American Heart Association.
Click below to make a donation to help Ellie.
Any little bit helps.
One dollar or five dollars.
In addition to your contributions, please leave comments below.
With each comment I receive before the Heart Walk,
I’ll put in an additional donation of $1.
If you’re in the Cedar Rapids, Iowa area, come to the walk on August 6.
———————-
Please help spread CHD awareness and share this with your friends.
———————-
 
jamie @ hands on : as we grow
Henry is 3 years old.
George is 9 months old.

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Comments

  1. Heidi Schmidt says

    Wow, these comments are about as touching as this post. Thanks again for doing this, it means a lot. We are lucky to have such an awesome family to support us!

  2. Susan Silver says

    I will tweet this out for you, I hope you get many more comments :) I wish I could do more, but I will keep this charity in mind when I have some cash to give away. I

  3. Zeke Archael says

    I'm sitting here getting goose bumps over and over again. I stumbled upon your website when searching for toddler art projects which led me to Ellie Jo's story. My step son (now 10 and thriving) has HLHS. Lots of love to you and your family. Stay strong–from the photos you can see Ellie Jo has the will to live!

  4. OneMommy says

    Thrilled you will donate $1 for each comment. My nephew was born with the same condition. He will be starting high school this year. I consider my sister to be one of the strongest moms I know for going through so many surgeries with him and staying positive. Ellie looks adorable.

  5. Aunt Annie says

    Wow… that's a very touching story. You feel so helpless when children are hurting. Will share.

  6. Anna @ The Imagination Tree says

    This is beautifully written and an inspiring tribute to a brave and gorgeous girl! I thought I had commented before, so sorry! I hope you raise a ton of money! I may come back and leave you another 20 comments :-) :-)

  7. Susanna says

    Coming on by from Anna @the imagination tree. This is written in a wonderful way. Happy walking everybody!!!!!

  8. Mercedes says

    Thank you for the post. We support our Local American Heart Association Chapter. The pictures are beautiful!

  9. Mama Pea Pod says

    What a brave little girl, and what a brave Mommy she must have. I can't imagine going through that as a mother. x

  10. Pat says

    Thank you for sharing Ellie with us. I had never heard of HLHS until about 4 yrs ago when a friend's grandson was born with it. My prayers for you all to continue this brave fight and for Ellie Jo's walk on a path to good health.

  11. happyhooligans says

    I am so touched after reading Ellie's story. What a brave, beautiful sweetheart she is. My heart and prayers go out to Ellie and her family, and of course to you and yours. Bless you for doing all that you're doing, Jamie.

  12. Rashmie @ Mommy Labs says

    Jamie, I got goose-pimples reading this…
    Such a heart wrenching story and what a beautiful lively, vibrant girl
    I'm glad I'm in this with you.
    Teary eyed I am…

  13. Liz says

    My 2nd daughter was diagnosed with HLHS (but after birth). She had her 1st surgery at 5 days old, but was not as fortunate at Ellie. I am always intrigued at survival stories of others that had the same condition and how their recovery is. Congrats to Ellie on her 4th birthday and her vibrant life.

  14. Larissa says

    My 13 yo step-son has the very same thing (HLHS), let Ellie's parent know that they can talk to us since we are in the same situation. Thanks, Larissa Abbott

  15. PPardue says

    My oldest son was born with HLHS in 1973, unfortunately all of the amazing resources available to Ellie were not available to us at that time. He lived only lived 48 hours. I love reading that now children born with this defect have so many more opportunities. I pray that Ellie continues to thrive. You are blessed.

  16. Michele says

    On Valentine's day this year, we will be celebrating with a blood drive. Our sponsor is a sweet 7 year old girl and her family. She also has HLHS. Her parents support blood donation because their daughter was saved by the kindness of others. This Valentine's day consider donating blood and signing your organ donor card.

    Thanks to all who have big hearts …

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