118 posts tagged with Pulmonary Atresia.

Labor of Love: Part 2

by Christy Sillman on Friday, Dec 09, 2011

The moment I awoke from anesthesia with my very healthy son on my chest is something I will never forget—the gratitude I felt was overwhelming. I just felt so thankful that my body made this beautiful, healthy human and that my life was now extended through him.

Throughout my pregnancy I had frequent ECHOs, all of which were read as “stable.” Two months postpartum, my OBGYN said to me “see you next time.”

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Surrounded with Heart in the “Snow”

by Becca Atherton on Wednesday, Dec 07, 2011

This weekend my family and I will have 300 or more people in our Arizona backyard for our annual Winter Party. The party was originally started about 10 years ago when my parents had snow brought into our front yard so I could see real snow, since going up into the mountains isn’t something I can do without oxygen. Family members and neighbors were originally the guests until we moved into our new house that can host more people because we have a larger backyard.

Now, thanks to a camp that I go to and several other CHD support groups, our party has become a huge get-together for kids with CHD and their families.

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Living Life in Limbo

by Jon Ritchings, Jr. on Monday, Dec 05, 2011

Waiting. We all do it. We wait in line at the grocery store, the department store and the DMV. But these are all ordinary types of waiting. What I’m talking about is waiting in limbo—that time many of us have experienced where we have seen our doctor, taken some tests and are now waiting for doctors to get together and confer about our issues and what the possible fixes might be.

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Labor of Love: Part 1

by Christy Sillman on Tuesday, Nov 15, 2011

I want to preface this blog by reinforcing that everyone’s journey is different, and just because I had a particular pregnancy experience does not mean everyone will have a similar one.

Although I was given the green light by a pediatric cardiologist to go ahead and try to get pregnant with my husband, I had to wonder how many pregnant patients a pediatric cardiologist follows. I went into my pregnancy saga full of fear, trepidation and excitement.

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The Importance of Laughter and Smiles

by Becca Atherton on Monday, Nov 14, 2011

It was 19 years ago that I met a good friend of mine when we were both babies in the intensive care unit at the same hospital. Our parents had both been told that things weren’t looking so good for us.

Fast forward a few years. When we were eight years old we met again at a camp for kids with congenital heart defects. Every year we would see each other at camp, share funny stories, go kayaking and all around just got to feel like normal kids. FYI—two heart kids in a kayak is not a good idea. We kept running into boats and we didn’t go very fast since we both get tired easily! But we had a good time!

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Investing in my Future

by Christy Sillman on Friday, Oct 21, 2011

Ever since I was a little girl I have had this idea in my mind that I wouldn’t live past 30 years old. I’m not sure exactly why, but the catchphrase of “Doctors said she wouldn’t live past three days old and she ended up living 30 years” kept entering my mind. You see, I’ve been living my life on borrowed time. Every year feels like a gift or another year of defiance, and my pure focus has been on surviving.

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Finally Living Life

by Becca Atherton on Thursday, Oct 13, 2011

Hi everyone, my name is Becca. I love writing so I figured that I would start a blog and that since I am living with tetralogy of Fallot, pulmonary atresia and pulmonary hypertension I would write about being chronically ill.

I want to take my feelings and use the written word to transform lives and bring awareness to these diseases. I hope to impact people and let others know just how truly special people who are chronically ill are.

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Born This Way?

by Christy Sillman on Thursday, Sep 22, 2011

I made a promise to myself when I was lying in the Pediatric ICU as a 17-year-old recovering from open heart surgery – I would never endure an optional surgery such as plastic surgery. I’d been through enough. It didn’t make any sense to ever put myself through surgery if I didn’t have to.

Now I’m contemplating relinquishing that promise.

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