After over 10,000 surgeries and more than 4 decades of placing teeny tiny heartsick babies carefully back into the arms of their hopesick mothers, Annie’s world renowned heart surgeon retired last month.
When Annie was first diagnosed during my pregnancy, I became the research mother. One set of videos I found online eerily explained the scholastic details of each of her 3 palliative operations. The doctors in the videos weren’t afraid. They talked as if they had a plan that they knew how to execute. That’s what a mother like me was looking for and a baby like Annie needed.
When Annie and I arrived at CHOP when she was 4 days old, we were both prepped for her surgery with Dr. Spray, looming a mere 12 hours later. The resident came to consent me: “We know how to help your baby. She’ll go on bypass. We’ll cool her way down…essentially, ma’am, it’ll be like she’s drowning in an icy lake. But that will protect all of her organs while she’s on bypass. We’ll keep her alive through the machine. He’ll do the first stage reconstruction on her heart in about 27 minutes. She’ll be pretty sick after. But then, if it goes like it should, she’ll get better. If it goes like it really should, you’ll walk out of here holding her in a couple of weeks. But sometimes it doesn’t go like it should. You need to know you might not ever get her back. Especially on such a fragile newborn patient, the risk of death is certainly there. Can you sign here please?”
I nodded and tried to steady my shaking hand enough for the ink to scrawl my name.
“And one more thing, Mom, Dr. Spray’s the best. I guess that’s why you came. You made the right choice.”
We made the right choice. We made the very difficult choice to leave our 1-year-old daughter behind, not knowing when we’d see her again. To leave family. To leave friends. To leave everything familiar during the most terrifying time in our life. To go to a new place to choose to hope and fight for life for Annie.
We’ve done that countless other times over the past 4 years:
- a 31-day heart failure hospital stay at 8 weeks old
- another open heart surgery at 3 months old
- an 18-month-old developmental checkup
- more heart failure at 20 months old plus a heart cath to measure to severity of it
- another open heart surgery at 3 years old
- a 12-day hospital stint to kick off 2018 trying to medically manage a new PLE diagnosis for our little girl with her eyes swollen shut
We’ve never regretted going so far to provide the right care for Annie. But we’ve never been blind to the repercussions that being a medically fragile family, too often separated, has had on all 4 of us. But today that ends!
Tonight we board a one-way flight from Little Rock to Philadelphia so that we can be an always together family. So that Annie’s primary care can be at CHOP. So that we can make new friends and find a new way of life that is choosing the best life for all of us, not just Annie.
Matt showed Annie a picture of her surgeon, letting her know that on our upcoming visits he won’t be there. She said she’d never seen that guy before…thanks to effective anesthesia!
She wanted to know why Matt and I think he’s so important. I explained to her how she was asleep every time but he worked on her heart so carefully. Then he would come out to meet with us and report: “She did great. I was able to make the necessary repairs. All went as it should have. She’ll be waking up crying for you again in just a few hours, so you’ll want to be at her bedside.”
Annie smiled in awe. “Did you say thank you, Momma?! I mean for me. Since I was asleep and too tired to say it.”
That’s probably the phrase I’ve said most to Dr. Spray. I’m not sure much else was ever needed to the man who time and time again gave us more and more days with Annie.
But that brings me to today, as I ready my family to set off for our new land. I want to be sure to say thank you for the glorious mundane moments that we wildly hoped for every time we handed Annie to Dr. Spray.
Thank you to the best siblings I could ever ask for. We hear comments regularly about how shocking it is how much we like to be together. I guess we’ve taken it as normal all these years.
Thank you to our bestie exact match family. How could we ever quantify the value of every park, pool, hand holding, sunrise exercising, football talking, girl parenting moment over the last 6 years?
Thank you to our church family who made it so easy to find a spot to fit and a community to do life with. Annie is wondering who she’ll talk to at school next year if it’s not Kennedy, Rebecca, and Graham.
Thank you to our parents who have excelled at grandparenting. The girls already have plans for your visits!
Thank you to our friends who have walked parenthood with us from the literal beginning, budding friendship over doula recommendations and blooming friendship through shared tears and prayers around kitchen islands and playroom toy piles.
Thank you to everyone in Little Rock who has made our life the best! We can’t imagine anything better. But because we know the joy of the good life we’ll be able to piece it together again…this time with cold winters, public transportation, and Wawa.
Tomorrow morning we’ll wake up happy and hopeful in our new city!