Survive: to remain alive

Multiple national studies show a risk of dying at 15-20% for the initial hospitalization, and close to 50% by one year of age for patients with Hypoplastic Left Heart Syndrome.

So we had a big backyard bash to celebrate our one-year-old little Annie, who is a survivor.

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Her rolly thighs and rubberband wrists continue to rank her in the 95th percentile for weight. She’s currently filling out Audrey’s hand-me-down 2T clothes. It’s because if her menu choice is not on her high chair tray, she’ll squeal and squelch and point and kick and finally yell, “Momma Momma Momma” to get to Momma Momma’s plate and pick out every little piece she wants. And then also make her way to sister’s plate to enjoy Audrey’s helping, since our 2yo is currently on an eating strike.

It was no surprise that our little chubby dug into her heart-shaped smash cake and devoured handfuls until Momma Momma decided that was enough sugar for one sitting.

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We were so honored to receive a cake from Icing Smiles, who partners with local vendors to donate cakes to special needs children. A bakery called Tracy Cakes made this beautiful and perfect cake for Annie’s party. I was a little emotional, crying and hugging the baker and left with my shirt covered in flour and icing from her apron after my overly friendly thank you. But FREE, really?! Wow!

Annie's Cake

And remember our precious friend battling lung cancer who I asked you to pray for? He felt up to baking one day and made tasty heart-shaped cookies to have at Annie’s celebration. Again, we are honored to be loved so well by strangers and friends alike.

We celebrated Annie but we also celebrated you: our faithful friends and family who’ve held us up and kept us going over this wonderful, yet scary and chaotic, year.

Thank you to

-Our moms who have nurtured us, flown to Philly, made sure we were eating, wrung wrinkled hands in waiting rooms, cared for a displaced Audrey, cleaned out our stinky fridge, organized our mailbox full of medical bills, paid our Ronald McDonald House rent, slept on Ronald McDonald House floors in a rented room, cried, laughed, rejoiced, and been there. Thanks for teaching me how a mom should love!

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-Our community group who has continued to remind us that our faith is enough, cooked meals, prayed 1000s of prayers, sent Jimmy John’s and Potbelly’s gift cards because that’s a better lunch than CHOP cafeteria food, asked, and also listened. Specifically to the Meskers who set up our gofundme account where God has provided over $50,000 to help us wade through those stacks of bills. And to the Sheaffers who drove 3 hours to spend a day with us in Philly, a day with friends when we hadn’t seen a familiar face in a month was an indescribable gift. Thanks for doing life with us!

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-My sister Ashley who talked me down from 6th floor psychosis many times, had the courage to fly our then-diaper-wearing 2yo to Philly (landing at midnight), helped me comfort that 2yo who screamed and whimpered to go home for hours late into every night, “babysat” Annie in hospital rooms so Matt and I could leave at the same time, learned doctor lingo to describe to our home nurse how NOT to hold Annie, and still recently panicked when I left Annie in FSK on a Sunday morning…in the care of a pediatric cardiologist! Thanks for having the protective aunt thing down!

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-Brandi who was the first person I told something was wrong as I told her to fill the poppers with pink confetti, who cried with me so many days in person and over the phone, who stood in the gap and believed when I couldn’t, who loved Annie and bought her very first something of her own when I wasn’t brave enough to, who leans over ICU beds to kiss our girl, and always lets me feel how I feel and say what I need to say. Thank you to you and your family for stepping into our suffering and sitting with us in the midst.

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-Paige who reminded me that we could still have fun with Annie too. “Let’s put the babies in the rafts and the big girls in their floaties and go swimming while our husbands are out coaching!” And who brought meals and sent monogrammed care packages and trades oil on porch steps. Thank you for getting it.

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-Emily who has never been afraid of Annie and is always willing to step into my home to help in any way to remind me that I can take a break sometimes. Thank you for acting like you simply fit in our home, our girls certainly think you do!

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-To 2 secret “milk maids” who have provided countless gallons of breast milk for Annie. Thank you for my child’s healthy immune system, fat rolls, and lots of saved $.

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-To Annie’s cardiologist Dr. Best who originally committed to always doing all he can, which has meant taking consult calls on a family road trip, texting at any hour of the day, orchestrating care connections across thousands of miles, and even repping a #heartforannie shirt, coming to her baby dedication, and celebrating with us at her birthday party. Thank you for officially being the best and doing way more than we ever expected!

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The same study shows that the actuarial survival of all infants with HLHS placed in the palliative surgery pathway is only 47% at three years of age, so we grieve that we will never really be out of the woods with Annie. But we also choose to celebrate each victory that Annie has and live with hope for the years to come.

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.

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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