by A year ago today, our lives changed forever.
Most people say that when they have babies, but AJ brought with him more change than We could have ever expected.
Birth was the easy part, he was born with his umbilical cord in a perfect knot, but there was no emergency, and compared to Averie, it was easy. I was up and sitting cross legged not long after and we were snuggling away, passing him around, though mostly he was in Averie’s arms, and she politely requested AJ back whenever someone else had him for more than 2 minutes.
Then the Dr came in to check out AJ. I remember with Averie we didn’t see the dr until right before discharge, and I thought something was up. It didn’t take long to confirm my suspicions. She told us they suspected Down’s syndrome. And that we’d have genetic testing and an echo in the near future. We tried to look him over to see what they were seeing. The shape of his eyes, the space between his toes, the solid line in the palm of his hands… We struggled to see anything other than the perfect little boy he was and the Down’s syndrome wasn’t going to change any of that.
Then I was nursing him and he choked. I don’t recall who was in the room, I think it was only my mom and I. But he turned blue. Incredibly blue. We pushed the call light. He recovered, but looking back at the pictures, you could tell his color was off. Then he was whisked off for monitoring. His oxygen saturations were a little low, but nobody seemed terribly alarmed until we went up to the NICU and they did an echo. The girl doing his echo had to call someone else in to look at it. She had no idea what she was seeing and told us she doesn’t usually do babies. Neither did the guy she called in though. They started plans to whisk him off to Iowa City. We cried and we prayed. A lot.
That night I spent in the hospital with my mom and Liz while Aaron was in Iowa City with the rest of the family. It was the hardest night of life at the time. Not knowing what was happening, being away from my baby and stuck with a breast pump instead of a warm cuddly baby. I don’t wish a night like that on anyone.
Fast forward a year – 2 open heart surgeries, 5 heart catheterizations, 3 failed extubations, 1 trach/gtube surgery, countless ventilator, nitric, oxygen and medication weans, 2 codes requiring chest compressions, 11 ambulance rides between hospitals and airports, 4 cross country flights, 1 stroke and an extreme abundance of love, kisses and cuddles later — we are doing something that for a while there, I wasn’t so sure we would get to do — celebrating this little miracles first birthday.
We didn’t make a big song and dance out of it (it’s a school night after all), but we did let him dig his fingers into a little bit of a cupcake and sang at him. He got a couple of gifts that he was happy to play with. It was pretty low key. But – it was a birthday. This little miracle baby defied the odds. A once 5% chance he’d survive just the first surgery has turned into a first birthday full of slobbery kisses and cuddles. Our prayers have been answered thus far, but this journey is so very far from being over.
We still have at least 2 surgeries – one airway reconstruction and one open heart. As well as what will likely be multiple heart catheterizations to go. And even then he will never be “fixed”. AJ will always have half a heart. But the amount of love he manages to not only give, but receive back from others more than makes up for the half that’s missing.
Thank you to everyone who sent birthday wishes, gifts, thoughts and prayers. And a special thank you to everyone who in the past year have stopped and took a minute to pray for our little guy and/or for all of us. I feel like I say it a lot, but I truly don’t know how we could have done this without all of you.
And with that, make sure you watch the year in review for AJ at the top that made me cry trying to piece it together. I’m off to sneak in one last birthday smooch before bed, even if it’s super late and technically no longer his birthday anymore. 💕
