Born with a Death Sentence

365 days ago my daughter started her fight for survival. Her first gasp for air was a harsh awakening that she was born into a world that her body wasn’t made for. She had already been labeled as “incompatible with life” outside of my cozy womb. Annie was projected to live 48 hours.

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But we chose intervention. We chose to try. We chose to hope.

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So we let them tangle her up, cart her off, and fly her to Philly where her 5-day-old body endured a 4-hour open heart surgery 3 days before her projected due date. We watched as she held her breath from searing pain. We held ours as the nurses crowded her bed, shook her body, and demanded, “Breathe, Annie! Breathe!”

Then they taught her how to eat. First through a tube, then on her momma. They also taught that momma how to not be afraid of her fragile baby, something I never expected to have to learn.

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We were both fast learners, so when Annie was 16 days old, we got to try real life together. It was harder than I thought but better than I thought, and of course, Audrey was a pro big sister.

Sissy lovin'

Then Annie’s heart failed. Real life screeched to a halt. We stuffed a duffle bag full of travel shampoo and clean underwear to carry on a medical jet so that we could live 31 days in the Philadelphia Ronald McDonald House. That’s when my heart failed. I knew that I was praying to a God who could heal, but all of my prayers left Annie bedridden and kept alive by an IV drip of heart failure meds. That wasn’t exactly what I was praying for.

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Then we got to come home for 3 short weeks, where we fought for Annie’s life with oral meds and oxygen canulas and frequent checkups. And finally we made the 1300 mile journey back, complete with a midnight call to CHOP’s cardiology emergency # from a Virginia hotel room, while one of us held a blue-faced, vomiting baby and the other begged for answers from the doctor still 500 miles away.  We made it to CHOP and handed Annie over for her second open heart surgery, a surgery we were told she had a 60% chance of surviving. The odds were in her favor!

Our first post-op look at Annie.

Our first post-op look at Annie.

She came home 5 days later to swim and swing and snuggle her sister. And to remind us that we aren’t promised tomorrow, so we live up today with gratitude and courage!

Annie is living it up in the swing!

Annie is living it up in the swing!

That’s what we’ve been doing ever since: living delicately, intentionally, gratefully.

Going to football games,

Dr. Arnold prayed the SWEETEST prayer, while Annie was recognized on the field!

Wearing matching dresses with the cousin,rehearsal dinner

Being a tired baby flower girl,

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Smiling,

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Smiling,

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And still smiling!

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That smile is so irresistible that, by God’s grace, we’ve done a lot of that this year too. Obviously our plans for the first year of Annie’s life didn’t include multiple open heart surgeries, heart failure, living in another city, wondering if she’d live. But we’ve allowed the Lord to direct our steps. We’ve been inspired by another mom who asked, “Do we want to insist to God that our child’s life be what we want it to be? Or are we okay that He has created her uniquely to fulfill His purpose?” God has grown us to the point of choosing, rather than to fight against His way with prayers for something different, to submit to Him and ask, “God, do something significant and show us how to make the most of every day we have with her.”

Happy Birthday to our miracle baby Annie! Your heart and your fight are significant. God has already used you in ways I never could’ve imagined. What a joy to call you mine!

“Remember this: Had any other condition been better for you than the one in which you are, Divine Love would have put you there.” -Chalres Spurgeon

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4 thoughts on “Born with a Death Sentence

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