Alivia's annual Children's visit

  

We made our annual trek to St. Louis Children's Hospital on Dec. 13. I always feel some sense of anxiety as we pull into the parking garage, but knowing we are just there for an outpatient clinic visit is comforting. There's just no way to ignore the memories of how it once felt to be there - trapped, sometimes hopeless, completely scared and confused, but I'm glad they are DISTANT memories. The smell of their soap is what gets me most - as soon as I wash my hands there, I'm instantly taken back to Alivia's bedside in the ICU. 

Our visit this time was the most laid back of all our other prior clinic visits. Perhaps it's because it's hard for the staff to feel very strongly about her need to be there (and I'll write more on that later). We skipped the usual bloodwork this time (YAY!) and headed straight for the echo lab then onto the clinic visit. We didn't see Alivia's main physician but instead met his usual nurse (who we love) and his new partner. While we were waiting, a nice doctor who remembered Alivia from when she was on the ICU popped her head in to say hi and see how well she's doing. She commented on how much hair Alivia had and how healthy she looked, which was great to hear. :) There were two main types of doctors we interacted with during our stay - the very clinical ones who laid it all on the line, quite bluntly, and the ones who, while still being honest and upfront, were encouraging and made you really believe you'd get back home and eventually feel normal again. She was one of those encouraging ones.

We didn't learn anything new from the echo - everything looked better than our last visit there last December, which we assumed they'd see since we had an echo in Springfield just three months ago. Her function was in normal range, her Z-score looked good, and the size of the heart was good. The doctors couldn't really explain what has happened other than Alivia is one of the kids who presented with idopathic (meaning no known cause) dilated cardiomyopathy who has spontaneously recovered.

We left with instructions to completely stop her last heart med, which she's essentially been weaning off of for a year now, and come back in a year.

Bye-bye heart meds!

Before leaving for home, we dropped off three very large bags of toiletries to the Ronald McDonald Family Room. Thanks so much to the more than dozen people who helped collect items with us!! The volunteers who accepted our donation were very happy. :)

Some of our loot!

We also made a stop to the CICU. We haven't been on the unit since August 2010, and I wasn't sure how it'd feel to be there again, but you know what, it wasn't so bad! We dropped off cookies, explained who Alivia was and when/why she had been on the unit, talked with the doctor who admitted her and a few nurses, who helped me remember the name of our favorite and most encouraging nurse (Tracy! It feels so good to remember her name!), and then took a few photos outside the unit.

The Build-a-Bear company helped fund the unit. When you enter, you see this heart box to drop in a satin heart.

Love this. How true!

I was somewhat surprised they wanted us to keep coming back instead of just keep Alivia monitored here at home with her local cardiologist. But then the next day, the doctor's nurse called Andrew and left him a message saying, essentially, 'Don't come back.' !!!!!!!!

This is yet another remarkable chapter in what's become an encouraging, amazing story in Alivia's life. We are so thankful, so grateful, for her healing. With the birth of Tristan, his health, Tyler's health and Alivia's healing, we're ready to enjoy Christmas and celebrate a God who answers prayers in ways beyond our comprehension.

Merry Christmas!