Bella’s Heart

It was in the genetic counselor’s office, during that first pregnant trip to Seattle, that we first heard about it. We had just received the crushing news that our daughter’s rib cage would not grow large enough for her lungs to develop. The counselor had tried to describe as directly and as gently as possible that our little girl just would not be able to breathe. As our meeting with the counselor drew to an end, almost as an afterthought she added, “Oh, and there’s a heart defect. I don’t want you to wonder why we never mentioned it if you’re looking at her chart in the future.”

The counselor quickly explained that it was the lungs that were primarily lethal, but the heart defect just further solidified that lethality. If the heart defect was her only problem, she would need surgery immediately after birth. Immediate surgery on a newborn is risky in an otherwise healthy baby, but downright impossible in a baby with limited lung capacity. So if somehow (and it was once again emphasized that this was highly unlikely) our baby had some lung functionality at birth, her heart would then make survival impossible. And so Arabella’s heart became just one more odd stacked against her.

As the pregnancy progressed, though, echocardiograms performed on her (in the womb!) revealed that her heart defect was not quite so severe as initially thought. And while surgery would be necessary, the cardiologist thought perhaps that would not be needed immediately after birth.

Arabella arrived into the world all pink and screaming and breathing. She had another echo done in the hospital after birth, and we met with a cardiologist before returning to Wenatchee. The defect was as expected – a complete AV canal defect. For those of you not in the medical world, that means she has two holes in her heart (a VSD and an ASD), as well as a singular valve where there should be two valves. The cardiologist told us Bella would likely need surgery in November – before cold and flu season.

But then there’s Arabella. Our little fighter who likes to defy doctors at every turn and exceed expectations in a way that makes us shudder at the grace of it all. She ate like a champ. She packed on pounds like a champ. She kept breathing like a champ. And further echo’s, as well as the deep rolls on her thighs, revealed that she could wait until spring for surgery. Her heart, and her little body, would have the chance to grow a bit.

We met with her cardiologist this past week to discuss potential surgery dates. Our perfectly pink and chubby and thriving beautiful package of grace once again passed all tests with flying colors. And so the cardiologist informed us that she might be a candidate for putting surgery off until she’s two to four years old. And all I could do was think of that other office on that dark day with the dark news of an immediately necessary surgery…and it was all I could do not to break out in laughter. The laughter of Sarah at the impossibility of a child long hoped for.

Our cardiologist is consulting with Bella’s skeletal dysplasia team, and then her case will be presented on Tuesday to the cardiac group at Children’s. This team of doctors will determine whether it will be best for her to have surgery soon (the beginning of March) or for her to wait several years for surgery. The cardiologist announced if they determined the latter, she wouldn’t need to see us for six months. And I once again had the same thoughts and disbelief swirl as the day they placed her in my arms…are you sure? Don’t you need to be watching her closer? The fear and disbelief that fails to recognize the One who watches her much closer. The One who knit her in a way to baffle and astound and defy.

If you think of it, will you pray for this team of doctors on Tuesday? That they would make a wise choice for Arabella? That they would be able to assess all of her unique characteristics and determine the best course of action for her?

Next week will be a big week – mostly because we’ll hear about surgery timelines, but also because we most likely probably hopefully will finally be moving into our new house. The house we went under contract with on September 20. Oh the ups and downs…and threads of grace…this whole moving process has been. Needless to say, I will be quite happy to finally be unpacked and settled – and put away the Christmas presents that have been traveling around in the back of my car for lack of a better place to put them for the past month.