Thursday, February 6, 2014


February 7-14 is a week of awareness for Congenital Heart Defects, or CHDs.

About half of children with Down syndrome have some kind of heart defect.

Ellie is in that half.

She's also in the group of kids who required open heart surgery to repair the heart defect.  Some can be outgrown, others are corrected in the cath lab, but some kids need open heart surgery.

In the past year, Ellie has started to talk and to walk and to attempt to run.

She started gymnastics and she started school.

She has been the cause of sleepless nights and exhausting days and insanely early mornings.

Today?  4:30.  "Wake up, Mommy!  Morning!  I help you!"

Ellie is currently going through her sign language flashcards "reading" them all to me.  Yesterday in the car, she was telling me a story that I didn't fully understand, but it included, "Blocks.  I build castle."

We officially lost all chances of sleep when Ellie's heart was fixed, because she now has so much energy and cannot stand to waste a moment of the day.

Despite losing sleep and sanity, we gained a little girl with energy.  A little girl who is learning and healthy.  A little girl who never stops talking.  A little girl who informed that that I was a "zebra" earlier this week when I wore stripes.

Thanks, Dr. Jonas.

Pre surgery.  She looks weird to me without her "zipper."  It's part of her.

I try to post a reminder of Ellie's heart surgery two times each year - her happy heart day and CHD awareness week.

Darling girl, we are so glad you are healthy and that you were born in an era when open heart surgery was only a four day hospital affair.

Just a few months later.

We love you.


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  1. I was just thinking today about the fact that Tuesday will be Teagan's 18 month happy heart day. I too am glad we live in era and a country where open heart surgery on infants is "routine". Scary as that is, I'm glad they have all that practice.

  2. Your Ellie is SO sweet! I came across her through ETST and finally made it over to your blog. Our sweet Phoebe also had the double bubble (surgery at 4 days) and then had her PDA closed at 8 weeks. Now she's a happy chubby 9 month old :) I wish I had come across your blog sooner as we didn't really know what to expect from her first surgery except for what the doctor's told us (3-4 weeks recovery - unfortunately she didn't come home for good until she was 11 weeks old). Looking at Ellie's sweet face I am sure would have taken the edge off a little! She shows us what fun times ahead we have with Phoebe :)


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