Saturday, August 25, 2012

Ellie's First Heart Day. {And Super Heart Giveaway}

The hardest thing I have done in my life was watch the medical team take Ellie out of the prep room and into open heart surgery.  We prayed.  We cried.  We waited.  We wept in relief when we were informed that Ellie went through surgery just fine.  A year ago we got our baby back, or perhaps really got our baby for the first time.

Ellie was five and a half months old that day.  She was undergoing her second major surgery, the first being a duodenal atresia repair when she was one day old.  The day before surgery, we met with the surgeon who would save Ellie's life.

We were told that the odds of life-threatening complication were one percent.  Those are really, really good odds for a problem-free surgery.  However, Ellie seems to find narrow odds.

The odds of a life threatening complication were higher than the odds of a woman my age having a baby with Down syndrome.  The odds of something going wrong were higher than the odds of a woman my age having a baby with Down syndrome and a heart defect.  The scary odds were higher than the odds of a woman my age having a baby with Down syndrome and a heart defect and a GI defect.  I hesitate in sharing these fears.  I know some of you will find this post because your baby is about to under a complete AVSD repair.  I'm taking about my fears.  Ellie did great.

A week before surgery.
HOME!

I am eternally grateful that Ellie failed to find the narrow odds on this one.

I don't have any photos of Ellie in the cardiac ICU, nor any photos of her recovering.  Perhaps I had one or two on my old phone, but I don't need to see Ellie with tubes and wires to remember how little and fragile she looked.

Who you calling "fragile?"


The phrase of choice among expecting parents seems to be, "As long as the baby is healthy."  But what if the baby isn't healthy?  What if the baby requires major surgical intervention(s) to survive to the age of 18 months?

The answer is that you love that sick baby beyond belief, just like you would a healthy baby.  And you hand that baby over to the people capable of making her better.  Then, you get her back and celebrate.



These bubbles are not easy.


We'll be celebrating for the rest of her life.

Happy First Heart Day, Ellie!  We're so glad that the doctors fixed your broken heart.  To kick off the celebration, we're giving away "heart" themed prizes, thanks to some sweet Etsy vendors.  Ready... here we go!

Heart Chalkboard

TRWpainted is giving away this cute chalkboard to one reader.  I'd love it for a "to do list" board in the kitchen or to use for sight words or math facts at school.  You can also find TRWpainted on Facebook.

(Photo courtesy TRWpainted.)

Awesome T-Shirt/Onesie

WittyBitty is giving one lucky reader this amazing onesie or toddler t-shirt.  Wouldn't this be ideal for your little heart baby if you have one, or in the "I {heart} Nerds" design if you have a sweet little nerd?  I would love to dress Ellie in this shirt for her next cardiologist appointment.

(Photo courtesy WittyBitty.)

Two Heart Hats

Lizzziee is giving away not one, but two adorable hats, which means two lucky winners!  The hats are made in sizes ranging from 0-3 months up to 4-12 years, and will be custom made and shipped out within three weeks, just in time for fall weather.  You can also check out the shop on Facebook.  Or here.


(Photos courtesy Lizzziee.)


To enter:

(1) You must leave a comment on this post.  Tell me anything, but if you have a heart baby, please tell me about him or her!

(2) For an extra entry, share this post on Facebook or Twitter, then leave a separate comment on this post telling me you shared.

(3) For another extra entry, "favorite" the vendors above or "add to circles" on Etsy.  It's a nice way to say thank you.  Then, leave another comment on this post telling me you added them.

(4) For another extra entry, follow along, either via email, the "Follow" button up top, an RSS feed, or on Facebook.  Then, leave a comment here and let me know that you did.

The fine print...

I'm not responsible for vendors, mail, or computer problems.  The entries will remain open until 11:00 pm Eastern time on September 1, and will be announced here shortly thereafter.  I will also attempt to contact winners via email.  Open to US residents 18 and older only.  Winners will be selected via random.org.  No prizes for immediate family, which means Daddy and Grandma.  Cousins and stuff are OK.  If you do not respond to a winner notification in a timely manner, I'll pick a new winner.  

Putting bubbles away.  Then spilling.


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45 comments:

  1. We no longer say "as long as they are healthy" because we've been there for non-healthy ;-) It is amazing that these little fighters are doing so fabulous now! So happy they missed the narrow margins this time! Happy heart day, Ellie!

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  2. Shared on Facebook...have to share that pretty little face :-)

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  3. This is such an awesome post (and not just because of the giveaway!) Whenever I'm told of the slim odds of things happening, I immediately assume that they WILL happen to me because of the lottery that I've already won in Addison. Once you've been that less than 1%....it's hard to feel safe ever again. Beautifully written and well put....thank you for sharing Ellie's heart day with us and letting us celebrate too. YAY ELLIE!!!!

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  4. Happy Heart Day, Ellie! Miss Kelly cried through this post, and your friend Charlotte just noticed the bubbles in all of your pictures!

    Charlie has a healthy heart, but her sisters Josie and Annie both have a zipper just like you!

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  5. Happy Heart Day, Ellie! I like your pictures. :) Ben's been on medication for his heart since 2 weeks, but hasn't needed surgery. He'll either need OHS or a patch done in the cath lab, and we're just waiting to see what happens. Now that he's a year, we are really hoping for the cath lab! It's been good to read about those that have gone through it already: Ellie, Hailey and Cora's stories encourage me.

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  6. We are already two weeks past our heart repair. I used Ellie as an example to myself of what joys will come after the heart surgery was done. I know exactly what you were saying when you said you don't need pictures to remember how fragile she looked after it was completed. Its still fresh but I'm pretty sure those pictures don't fade. :-). So grateful that Bellies heart was fixed and we can all celebrate with her. Happy Heart Day!

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  7. Happy heart day elli! What a wonderful day to celebrate!!

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  8. Happy Heart Day, Ellie!!! My LO is being followed for a PFO that may need to be closed in the cath lab. She loves watching Ellie videos as does my 4 yr old son.

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  9. Happy Happy Heart Day! I remember Reagan's surgery as being the worst and then the best day of my life as I handed her over in fear and got her back looking oh so much better. This is surely a day to celebrate!

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  10. Happy Heart Day Ellie!
    I came across your blog a little more than a month ago when I came across your link on Down Syndrome Pregnancy on BBC. I love reading all about Miss. Ellie and she's cute too. :-)

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  11. Happy Heart Day Ellie!
    I'm 23 weeks pregnant with a little boy and we received a down syndrome diagnosis at around 17 weeks. I love reading about Miss. Ellie and sharing your journey with my boyfriend.

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  12. I just shared this blog post on Facebook. And I follow on Facebook as well.

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  13. I forgot to mention that I favorites each of the vendors on Etsy. :-)

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  14. Happy heart day! Beautiful photos, as always. Our middle daughter, Kyleigh, who is 2, has a VSD.

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  15. Happy Heart day to your beautiful girlie! 1 year has already passed. Amazing and such a gift to have that in the past. Handing your little one off for this surgery was not an easy thing, this I know first hand. Happy that our girls have both defied these odds!

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  16. Awww happy heart day sweet Ellie! You sure are a special little lady!

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  17. Happy Heart Day, Ellie!!!! We are celebrating here, too, as we are soooooo happy those broken heart days are behind you and you are thriving! As you know, Emmrie is a heart baby too, and we will celebrate her 1st Heart Day on October 5th!
    *we shared your link on FB and already follow!*

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  18. We live in the wrong part of the world to be included in the giveaways, but I just wanted to say Happy Heart Day to Ellie! We're so glad those clever doctors fixed your heart and we think you're a superstar. Lots of love from Australia x

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  19. Happy heart day, Ellie!!! My Lily was just 4 months old on her heart day...we are about to celebrate her 4th heart anniversary. Cathy Harms Thompson on FB

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  20. I do not have a heart baby but I just wanted to say your daughter is just adorable and those are gorgeous photos!!!! Happy Heart Day!

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  21. Ellie...you are rockin that extra chromosome!!i can't wait to see w hat you'll be doing in your second heart year. You are an inspiration to me and my daughter!! Hugs and kisses. :)))

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  22. I don't like the pictures with tubes either!! Id rather try to forget the images. My little one had surgery this past February and is doing great now. He was in the hospital for a month because his heart was bruised during surgery. Were hoping he wont need any more surgeries. His doctors and therapists are all very pleased with his progress. :)

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  23. Happy Heart day, Ellie! My husband made a comment just last night about how we hit "all" the odds last summer, including the incredibly remote odds of losing our little Max, who had no heart of digestive issues. It has changed our entire viewpoint, it is hard for us now to not always assume we will be in that incredibly small minority for just about anything. We will never be that secure again, although I know we never really were. You hit the nail on the head with the "as long as they are healthy" sentiment. That is not what matters, what matters if loving our beautiful babies, with all our heart, soul and very being. All my love to you, Ellie. I love watching you grow and thrive.

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  24. While Josh never had to have heart surgery, he was in the NICU for three months and had three hospitalizations for respiratory illnesses. We took loads of pics when he was in the NICU to share with friends and family far away but never any when he was intubated. Images like that don't seem to leave you and there are always so many opportunities for fun photos! I have followed you for about a year now, and I just love your fun, informative posts and adorable Ellie. Thank you for sharing! Debbie in Arizona

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  25. Having experienced three babies going to heaven before we truly had time to meet them, we no longer wish for a "healthy baby". We just hope for A baby, and trust that God will gift the baby to us as He sees for for as long as He sees fit.

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  26. Thanks for sharing your blog. I do not have a heart baby, and for us, Nichole was perfectly healthy, down syndrome and all. it just took me a while to realize that!

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  27. Wow, she's getting so big! Looks super healthy! I love the i love heart shirt!

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  28. I loved this post, it gave me the warm fuzzies! Happy Heart Day Ellie!

    I also can't believe how blonde her hair is getting, too cute!

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  29. Happy heart day Ellie, Megan and Matt! I remember praying for a healthy baby, too - it took me awhile to realize that I got exactly what I wished for and prayed for:) I don't think I've ever shared Bella's NICU photos, either...still couldn't. Already a FB follower! Love the pictures and her pretty pink shirt (very brave little girl with the Nats doing so well this year!).

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  30. What an amazing journey - it's hard not to love that little ellie!

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  31. I hope you guys had a great day. I imagined what that moment of handing over my baby would be like so many times. We ended up never having to do it, but I can imagine it being the hardest thing a parent could face. I'm so glad that Ellie got the care she needed. She is amazing.

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  32. I don't have a heart baby but Ellie is so precious!
    family74014 at gmail dot com

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  33. Ellie - Love to see you saying bubble and driving the bus ! I "heart" you ! Love your Mom and Dad as well :)

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  34. Love reading about Ellie. I don't have a "heart baby"....but I do heart my babies! I heart Ellie too and I'm glad she is doing so well despite her setbacks early in life. You'd never know it if you looked at her now! Go Ellie! YOU ROCK!

    Kelly
    wetrevinos@aol.com

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  35. I just "liked" (facebook) and/or "favorited" (etsy) all of the vendors. So excited about the cute stuff!!

    Kelly
    wetrevinos@aol.com

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  36. I also follow you on Facebook. Love getting updates and reading your blog!

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  37. My Ellie's happy heart day is November 4, 2002. She has AVSD repair too. Her recovery did not go as planned and was very touch and go. However, today she is a smart and healthy vibrant 10 year old. From my Ellie to yours Happiest of Heart Days!!!!

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  38. Congrats on your heart day, Ellie (and mom and dad!)! Owen's 3rd heart day will be on Monday Sept. 3. He was nearly 4 mos. old when he had his AV canal repair. I agree that the hardest thing was handing that little person over to the docs and the team and praying everything would go well. But now I have a very happy little dude who will start pre-school next week and probably give his teachers a run for their money! From Owen to Ellie......happy heart day!!

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  39. OMG! shes so cute, love her fragile gesture:)

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