January 5, 2022
Tomorrow we go in for Leyton’s heart check up. For weeks leading up to these CHD appointments I feel a bit like a ticking time bomb. Waiting for the nerves to take hold, the flashbacks to strike and the tears to flow.
We have a few “good” appointments under our belt this time and as the day drew near I really started to think the panic may never come. Just this morning my friend asked how I was feeling and I was happy to report I felt confident and ready.
Then I went out for a walk after work. All the CHD “what-if’s” started swirling and the floodgates opened. Thankfully the sun was setting so I can only hope no one caught a clear glimpse of the crazy pregnant lady sobbing through the streets of our neighborhood.
To some it may seem like just another doctors appointment. But once you’ve…
held your newborn covered in scars, wires and tubes,
pushed your mama intuition aside and given full control to medical staff to decide what’s best for your child,
spent your pregnancy reading medical journals instead of mommy blogs,
stepped out of the way as nurses sprinted into action to tend to your infant,
locked eyes with your child’s doctor’s and knew they were about to deliver difficult news,
pinned your baby down to be poked and prodded, apologizing over and over…
it will never feel like *just* another doctors appointment. The experience changes you. While the flashbacks dim and each stable appointment builds confidence, the anxiety never fully leaves once you’ve experienced that kind of medical trauma. CHD is lifelong and the knowledge that we are in this for the long haul can be soul crushing at times.
All that to say I AM feeling confident and ready for whatever tomorrow holds. Sometimes I just need a good cry first. We’ve done everything we typically do to prepare Leyton and make him as comfortable as possible going into these appointments. All that’s left to do is hope for the best, with his CHD’s that usually means “see ya in 6 months” (or even a year!). Here’s to hoping our boy is stable and his special heart is holding steady.
January 6, 2022
Dating these really makes them feel like diary entries, but I write at such sporadic times, (Instagram is usually more up to date!) it can be hard to follow so I think it’s the easiest way to keep all our CHD updates clear.
Crying happy tears because not only is our heart warrior stable, but today he received a one YEAR clearance from his cardiologist.
This is huge for him. We’ve been closely monitoring his pulmonary stenosis and residual coarctation of the aorta while testing out different interventions just praying that they will stick, and today’s appointment finally assured us that they have. His echo looked just like it did 6 months ago which is just about best case scenario!
We talked about what the future holds and while he will need another “tune up” when he’s a bit bigger to optimize his heart function, we can all agree his future is looking bright. There are so many potential outcomes and factors to weigh, it’s hard to predict what will be necessary or when. The unknown has always been one of my biggest challenges as his mom. I got through my pregnancy by clinging to “the plan” and lying to myself about the predictability of it all. Over time we felt blindsided by every slight deviation from that plan, so now I try my best to stay in the moment and celebrate the wins as they come. And today was a big one.
I’m so proud of this boy. He’s taught me so much about life these last 2.5 years and I’m beyond thankful that he’s ours.
