Cleaning & Control
My house is cleaner than it usually is (please note, I said cleaner, not clean).
I have a confession to make, when much of life – the big things in life, the things I can’t control – is overwhelming and frightening and unknown I clean. And I organize. As if in rebellion of my inability to control that which really matters, I up my control of those things that don’t really matter. And so I clean the crevices that usually get ignored. Organize drawers. Sort through clothes. Purge. It’s a coping strategy. The good news is it’s good for the house. The bad news is it doesn’t fix my heart.
We came home from our Seattle appointments last week and promptly signed up for life flight insurance. This means should a member of our family need to be sent by chopper over to Seattle for urgent medical care, it won’t financially devastate us. The fact that we are in great need of that insurance devastates me.
We sat in a room, cradling our second miraculous bundle of grace, listening to the warning that a single respiratory illness – just your average run of the mill fall and winter sickness – would most likely send that child straight on a chopper and over to the hospital in Seattle.
“She just doesn’t have reserves. She’s already working hard enough to breathe.”
And for – is it the third? fourth? tenth? – time of this journey I find it hard to breathe.
But we know the truth in the statement. We watch her breathe. Cute clothes stripped away revealing a chest with severe retractions that only lessen a bit when sleep comes. We see the effort of each breath, and our eyes meet sharing the unspoken concern and wondering and fear of parents madly in love. She breathes. Without assistance. That is a miracle in and of itself that we thank God for each day. And really, each one of our breaths are tenuous, never guaranteed. I could breathe my last tomorrow. So could you. But the tenuous nature of breath is shown in bold relief in her little body – leading us to plead each day. For more breaths. For less labored breaths.
There is more news in that cardiology office as well. It’s not just her lungs working hard, that little heart, with its missing wall and unique valves, is overworked as well. Its right side already starting to enlarge a bit. And then there’s another piece of anatomy. A persistent left superior vena cava. We all have a right, but to have a left? That is an anomaly. Not a terribly uncommon one, and in most cases not even a danger. It’s an extra vein carrying deoxygenated blood – usually to the correct location, the right side of the heart. But in Shiloh they’re suspicious that this vena cava is dumping into the left side of her heart. Right now, you don’t see the effect of that as much, because with her common atrium, she already has a mixing of blood and lower saturation. However, the problem comes when her heart is repaired – when a wall is built between her left and right atrium. At that point, we do not want deoxygenated blood dumping into the left side of her heart. However, rerouting that blood flow is a tricky procedure, especially when operating on a tiny infant’s heart.
And so we’re left in a difficult position. The doctors are trying to decide whether it’s better to operate this fall. To bolster her heart to help her lungs through the winter. But they really would prefer if that heart were bigger, if she were bigger. If she were to have surgery this fall, they might not be able to repair that LSVC, meaning a second open heart surgery at a later date.
Oh, and have I mentioned I have another daughter? Who is having open heart surgery on October 5th?
The plan with Shiloh right now is watching and consulting. They’re closely watching her weight gain, which despite her rolls is not quite as rapid as they’d like. And thus enter my other full time job night and day – feeding this child as much as she will eat. Our cardiologist is consulting with the head surgeon to get his thoughts on the best way to proceed. When we come over for Bella’s surgery, Shiloh will have another echo. This time they’ll put in an IV with agitated fluid to be able to hopefully see exactly where that vena cava is dumping out. She will also be meeting with the pulmonologist to get a baseline and see if there’s anything we need to be considering to help out those little lungs.
And then we’ll go from there.
And so I clean, organize and purge.
And each morning I get up and I get on the treadmill. And with the pounding of my feet, I attempt to pound out my anxieties. I listen to truth. Piper’s sermons preached two decades ago for such a time as this. I pound in truth, and then I pound out prayers. And then sometimes in the shower afterward heavy hot tears mix in with the water flowing down.
And then the day begins and I try to be faithful with just the next thing. And I wipe bottoms and tables, prepare food, play games, tackle work tasks, and live with the constant refrain in my mind, “There is grace enough for today.” And, “For God has not given us a spirit of fear.”
Because really? The question remains the same regardless of what looms before me.
Do you trust me with your tomorrows? Do you trust that those days have been lovingly ordered, and that regardless of their contents, they can not separate you from me? Do you trust that this life, with all of its brokenness and beauty and heartache and blessing, is not all there is? That the greatest affliction will one day be made to seem light and momentary?
I believe, help me with my unbelief.
My son has different medical challenges than your daughters, but he does have a congenital heart defect that required open-heart surgery at 3 months old.
I am so amazed and grateful for medical technology that so seemingly simply saves our babies!
Two things helped me when Anthony had his surgery. First, I made sure to get a photo session of him before surgery, with a bare chest. He had a diaper on, but the way we had him in the basket, it looked like he was a baby Jesus. (looked naked, but was covered up on bottom!) I knew he would still be perfect even after surgery, but I wanted to document him before scars for some reason.
Second, it was EXTREMELY helpful to google the kind of heart defect he had and see what children look like when they first come out of surgery. They have a lot of tubes, wires, and other scary things. It’s really helpful to have an idea of what to expect, somewhat.
I love how you have great family support, and I know you have a great team at Children’s. They have been fabulous with Anthony, and I know they will do everything possible to help your girls. <3