Friday, January 27, 2012

another face of CHD..

Natalie is 4...

..and proves everyday..

..that she's got this whole CHD thing under control. 

Every day that you wake up to start your day is another day filled with reasons why I am mesmerized by you, Natalie. Boy do I love you. 

***Natalie is now 4 (going on 15) and was born seemingly perfectly healthy and pink on April 21st, 2007. After worries of what her heart murmur, constant napping, purple-tinged extremities meant, we found out 17 days later, on May 8th, 2007, that Natalie was born with half of a heart: her heart's right ventricle was completely malformed and this is called "Tricuspid Atresia". After several months of super close monitoring, Johns Hopkins Hospital completed her first heart cath at 5 months old, where we were told that the beginning stages of heart failure were happening. Thankfully, 6 days later, the surgeons at Hopkins completed her Glenn Shunt on October 1, 2007 and Natalie handled it all beautifully. We relocated from Baltimore to Denver in April of 2009 and it was that summer of '09 Natalie started to turn purple more often that any parent of a CHD kiddo would like to see. She coped with this until October 8th, 2009 when she had several collateral veins closed and the change in her activity level went from slow speed to warp speed. Natalie's completed Fontan (external conduit with fenestration) was on January 12th, 2010 at The Children's Hospital of Denver and beat the hospital record by 1 day leaving within 6 days.
She has always been feisty and that has always seemed to keep her strength and tolerance levels way up high. She is a true girly-girl by every definition: all things pink and purple and sparkly, but will happily play with cars and army men with her big brother who's 6. She is tough as nails and is a free spirit. This changes daily, but she hopes to one day own a pony and become a veterinarian.***

Recently, I came across a really cool blog entry by another "heart mommy" named Stefenie. I read her post and immediately became amazed by this new Pinterest board and the mission to spread the heck out of CHD awareness all over this site. I keep reading and reading the stories under the photos of these beautiful faces. It's hard not to. 
Below is the post that I copied and pasted so in case you come across our family blog, you'll be able to join in too! What a cool way to get ready for CHD Awareness Week! And in case you didn't know, it's February 7th through the 14th. : )

As many of you know, I am the mother of two little girls born with congenital heart defects, known here as Superkid and Lily. I'm also an avid Pinterest pinner--I love collecting ideas and inspiration via Pinterest.

Those two elements of my life had absolutely nothing in common...until today! With your help, I'd like to help promote awareness of and advocacy for children (and adults) with congenital heart defects by founding a Pinterest board devoted to sharing the stories of families affect by the #1 Birth Defect. The board is titled, "The Faces of CHD - Congenital Heart Awareness Week Feb 7-12, 2012."

Pinterest is a virtual bulletin board, where people can "pin" pictures with captions to be viewed and shared by others. Because pinned items can be viewed by thousands of people, pinning pictures and brief stories about your experiences with CHD will bring awareness to many people who might not otherwise have an opportunity to personally meet anyone with a congenital heart defect.

If we start pinning now, we'll have a thriving board by CHD Awareness Week, Feb. 7-12, 2012.

If you already have a Pinterest account, you can find The Faces of CHD board here. If you would like an invitation to join Pinterest (it's free!), please email me: triptoholland {at} gmail {dot} com.

For those of you who have been affected by congenital heart defects, here is how you can participate, with or without a Pinterest account.

    • Create a blog post that tells about your experiences with CHD. (Or you are free to use one that you already published.) Please make sure there is a picture of the heart child/adult in the post. Please link to the CHD Pinterest board in your post. (
    • Send me a link to that post, either in the comments below or in an email (triptoholland {at} gmail {dot} com) or (jacks_rswl {at} mepotelco {dot} net).Please include a brief (10 sentences or less) description of your experiences with CHD when you do. Make sure that description includes the heart warrior's name, age, and heart diagnosis. You could also include number of surgeries, favorite hospital, etc. As the founder of this board, I reserve the right to edit your description if necessary.
    • I will add one of the pictures from your post and your description to The Faces of CHD board. Pinterest members will be able to click on the picture and be directly linked to your blog post to learn more about living with CHD.
    • If you do not have a blog, but would like to be included on The Faces of CHD board, please email me and I'll provide an alternate means for you to participate. (triptoholland {at} gmail {dot} com.

      If you do not have an experience of your own to share, please show your support for those of us who do by pinning this post, viewing the Faces of CHD board, and repinning the stories you find there that touch your heart.

1 comment:

Becca said...

She is so cute :-) thanks for sharing her story!