“That’s how we live our lives, right? On the edge?” —another heart mom’s words to me after we both learned two weeks ago that certain models of baby pacemakers have been recalled.
When Lydia was diagnosed with her 4 CHDs, several people (mostly nurses and echo techs) told me, “At least it’s something they can fix!” And true—while you never want ANY CHDs, ours were far from the worst possible scenarios. 🙏🏻🙏🏻🙏🏻 She “just” had 3 holes and a bicuspid valve! 😂 (But seriously. There’s LOTS harder things. ❤️) We were told that surgery was going to be a one-and-done, fix the problem and live happily ever after thing.
I kind of wish no one had said anything. Because the truth is, once a heart family, always a heart family. Things have been a lot more complicated than that. Maybe that dream scenario pans out sometimes, but for us, once we got into surgery, things were a lot trickier than they had appeared from the outside. One of the complications was that tissue necessary to help close the holes just wasn’t there; there was nothing to sew TO. Which resulted in us scoring the 3-5% lottery of “patients who may experience complications—including complete heart block.” Long story short—your heart has two halves that work together and talk to each other. The communication lines in Lydie’s heart were disrupted during surgery. She had a very gifted surgeon and we are so grateful—we don’t blame him at all. It’s just what happened because of how her heart was formed. So one week later she had to have a permanent pacemaker placed. And then I knew we were in it for life.
Fast forward to two weeks ago on my birthday 🙄 when I got a call from the heart center at the hospital. And you don’t ignore those calls. “Don’t panic, but Lydia’s pacemaker has been recalled.” Um...what? Of course there was panic. Especially when we started talking to other heart families and heard about emergency surgeries, etc. But every heart case is different and every pacemaker has extremely personalized settings. We fell under the “not an emergency, but please come in so we can check this” category. Two weeks of sleepless nights waking up to stare at her monitors. Two weeks of desperate prayers that her pacemaker will A) work correctly and B) not require another surgery that will set my girl back. Stress. All the stress. What I didn’t realize at the time of her diagnosis and what that mom was referring to in her comment quoted above is that this is a hard part of being a heart family. (Hard, but still worth it.) You never quite know when a small detail will change and shift the whole balance of your life. It really is living on the edge. And we don’t even have the worst of it!!!
Anyway. Prayed a lot. Prayed for days; prayed this morning; prayed driving to the hospital. After tests and drs etc etc the end verdict is that we are ok for now. Monitoring things, but ok. And I am so grateful. I feel a little bit like we escaped something very scary by the skin of our teeth. I am reminded again of how much I need God’s strength EVERY DAY. Because heart families are just normal families, facing scary things. Living life on the edge. With all our beating, racing, grateful, praying, tired hearts.
