The only way someone – not acquainted with our little fam – would ever know this little babe has a heart anomaly, is the occasional glimpse of an electrode or two peeking up from the holter monitor strapped to his chest, beneath his shirt.
And he is only required to wear one every few months. Thankfully. Keeping 5 little sticky things and a small black box attached to a mobile baby is about as easy as herding cats.
I suppose a peek in our medicine cabinet would belie his vibrant health. Digoxin and propranolol; as common as mother’s milk to our little lad who’s slurped the stuff down since he was 10 days old.
And yet it feels like forever ago that he was fighting for his life in the PICU.
SVT {Supraventricular tachycardia} seemed like a thing of the past.
Well, sort of.
Despite our brief encounter with it in early June {just before we left on vacation, and right before I started this blog} – 2 short weeks after having been weaned from his meds – it feels very separate from the daily life we live.
For all intensive purposes, he’s perfectly healthy. Nothing seems different about this spirited, almost-one-year old. Nothing screams “heart issues” in his delicious little personality or other-wise healthy body. He’s standing without assistance {from the ground up, something our daughter never mastered in learning to walk}, is sporting 8 sharp, little teeth and a voice that could simultaneously melt your heart and crack your windows. And talk about a sense of humor!
He’s perfect. Really. He is.
But. I would be lying if I didn’t confess my heart was broken when we found ourselves rushing to the Pediatric ER again 2 months ago {now an hour away}, faced with the reality that SVT is still very much apart of his little life.
I think we were just going through the motions with his medications, wanting to be wise and cautious, but truly believing his heart was healed.
We were devastated by the accidental discovery of his vibrating chest {what his body feels like when his heart is in SVT}, just days before we were to head out of State on vacation.
We had pushed for an early weaning of his medication. It usually happens around 1 year old. But due to his lack of break-through SVT and his consistent monitor results, his cardiologist felt comfortable with taking him off at 9 months.
We were thrilled. And, I must confess, a little cocky.
In hindsight, I’m so thankful it happened when it did. What would we have done on the East coast…14 hours away from the cardiology and PICU team we’d come to know and love and trust?
Yes. It’s apparent that God has other plans for our son. And I’m learning to be okay with His detours. He truly does hold our futures in his ever-loving, super-capable hands…and most certainly does know best.
Bug is back on all his meds. And doing well. I suppose that has to be good enough for now, right?
His last monitor came back clear {while on meds}, and we’ll check back in with the cardiologist in a couple of months.
Maybe then we’ll try this weaning thing again.
But in God’s perfect timing, not ours.
