08 August 2013


Today is Abigail's second heart-versary! Two years ago today, she had open heart surgery to repair 4 out of 5 congenital heart defects.

This road started when I was merely twenty weeks pregnant. You can read the abbreviated story here. It was a long road full of specialists, hospitals, and even a misdiagnosis, but as we stand here today, other than a small Gortex patch, the cardiologists say her heart acts just like any other heart they'd expect in any other two-year-old. There is only a 5-10% chance she'll ever need another heart surgery and her beloved cardiologist thinks we're on the lower end of that scale.

Abigail was only 2.5 months old. She was 8.5 lbs, a mere 2lbs 3oz heavier than she was at birth.

Today, I seldom even think about the heart troubles we once had. Her scar is easy to overlook - just a mark on her soft, white skin - no more noteworthy than a birthmark or a freckle. It is not scary anymore, it just is.

The long, white line is the incision scar. The small dot to her right/our left is from the chest drainage tube. If someone asked me what the hardest part of heart surgery was, I'd say the at-home recovery process was the most difficult for me. I remember it being overwhelming and cite it as the worst few weeks of my life, but to be honest, I don't remember it much anymore. It's like labor pain. Time passes and God lets you forget. When I think back to heart surgery, usually the first thing I remember are the kick-ass awesome nurses. The other main thing is how awesome it was to live in the hospital for week - I honestly didn't go outside from the moment we step foot through the doors on August 8th until we were discharged on August 12th. My world stopped for one week as we lived in a complete world inside of a building as the days and nights blended together - it was such a blessing to never have to leave.

Click to see photo larger.

It has been worth living through every painful day that Down syndrome brings to experience the 100 blissful ones that Abigail gives us.


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If you're interested in the real-time posts, you can find them below. As you're reading them, please remember that the writer was a new, first-time mother who was dealing with post-partum depression, healing from a recent emergency c-section, learning what it meant to have a child with Down syndrome, and watching her baby going through a very serious surgery. There are typos, emotional rants, and more seriously, I hadn't yet learned the loving and sensitive ways to talk about Down syndrome.



Holly M said...

What an amazing story! Thanks for sharing it with everyone. You two are truly amazing parents.

Matt said...

I love Abigail! She's so cute! Here's to many happy returns!