Decannulation?!

June 10, 2014, 7 years ago today, we were pulling together all the last minute details so we could bring Brinley Noel home the next day. Supplies were organized, medical binder ready to go, oxygen concentrator, feed pump, mist machine, suction and pulse oximeters ready. The ventilator would come home with her. 

Cailyn and Raina had dress rehearsal for their ballet recital. I remember so clearly the duality of everything that we did. Excited for one, scared for another. Looking like a "normal" healthy family at an event while having a tiny baby on a ventilator at the hospital. I think those feelings and experiences are seared into my very being. 

Fast forward to today, June 10, 2021, after an incredibly hard year for everyone on the planet, our family included, we are packing up to go to the hospital for decannulation. They will put her to sleep, take the trach out in the OR, scope her to make sure everything looks good mechanically and then observe her in the PICU for 24-48 hours. 

If successful it will change many things for our family once again. Some good, some bittersweet. Brinley is excited. She is the bravest soul I know!

Please pray: 

The doctors get an accurate read and are confident in their decision. 

Brinley is safe no matter what happens.

For peace for Brinley, us and all the kids.

If successful, please pray for us during the upcoming time of transition.

I know it's been an age since our last blog post but it was only appropriate to end the way we started. If she goes home tomorrow it will be 7 years TO THE DAY, that she came home from the NICU.. Yes, I'm crying again

Sarah for us all