1. Is Annie still sick?
Yes. Annie will always be “sick.” There is no cure for her heart defect. But she is not currently exhibiting symptoms of having a heart condition. We live our life as if we have two “normal” girls, something that we NEVER dreamed was possible. Our days parenting Annie are like any other parents’ days: She wakes us by giggling and bouncing on us, calling “Da! Da! Da!” and trying to suck down Audrey’s overnight milk before Audrey wakes up to discover the theft. She eats yogurt and oatmeal and strawberries and a banana and cereal and Teddy Grahams and eggs for breakfast, then smears the mixture all over her face! The rest of the day we alternate between awwwws after she kisses and leans in to love Audrey and No,no! after she repeatedly smacks Audrey’s face, pulls her hair, and swipes her toys. Little stinker! See? All very normal. Right?
2. Does Annie still only have half of a heart?
Yes, and we hope that she always will. We pray that her native heart can be enough for her and provide a high quality of life for her whole life. I’m thankful that a heart transplant is an option in the medical world, but I pray that Annie’s birth heart is always salvageable because it is her own.
3. How can someone live with only half of a heart?
I have no idea! But I’m so glad that God revealed a miraculous heart reconstruction to the doctors who invented the Norwood, Glenn, and Fontan procedures. Currently, the right side of Annie’s heart does the work that our right ventricles do: pumps blood from the heart to the body. But then, because her pulmonary arteries are now connected to her superior vena cava, the return blood flows passively from her body into her lungs.
4. What’s next for Annie?
Annie will continue to have regular cardiology checkups. Like this one that she had today.
She will likely have her stage 3 Fontan procedure at CHOP during summer 2016, still TBD. That’s really all we know. We ran into a cardiologist turned friend recently and were reminded (because of my pestering questions) that even though the Fontan is the final stage, it’s not really a great heart physiology either. In other words, while Annie isn’t currently acting sick, at some point (tomorrow or in 4 decades???) she will.
5. How do we do it?
Not very well. I worry a lot. I use oils to coax me to sleep at night. I envy days passed when I only knew from afar about suffering and questions and hurts of other families like ours. It’s hard to relax and enjoy TODAY that we have with Annie. I’m often tired of being “that family” who has to respond with grace when acquaintances pepper me with prying questions and blunt comments. And just today, walking back into the hospital, I professed wishing it were different.
But it’s not. It’s how God created Annie and how He envisioned our family and He didn’t make a mistake.
So the best answer to how we do it is cling to hope in something besides Annie. The joy of parenting Annie isn’t enough to sustain us in this life. We need something more. So we rest in Jesus and the joy found in His finished work on the cross that makes us right with God. And we rest in the comfort of knowing that a good God is directing our steps and making Himself known in Annie’s sweet face.
I’m still wrestling with it moment by moment, but isn’t that what it’s all about anyway?