Avery’s Story

Site created on April 18, 2018

Avery Kate was admitted to Johns Hopkins on April 3rd with what we thought were complications from the flu. 3 weeks later we are still here and facing the fact that Avery needs a heart transplant.  Previously a healthy little girl with no heart issues, our world has been upended as we embark on this journey.  I hope to make this page a place for you to come on the journey with us. We are so blessed to have an amazing community near and far cheering, supporting, and lifting us up in prayer every single day.  We couldn't do this without your love.  XO

Newest Update

Journal entry by Jamie Doehne

Hello friends. It's hard to believe that it has been 10 months since our last post. As an outlet to share Avery's Heart Journey with you, thankfully my silence means that all has been going well!

A few things to mention before I jump to where we are today- Over the summer we said goodbye to our FAVORITE cardiologist. Dr. Kristen Nelson, is an angel that literally held our hands through this life changing event.  She is following her mentor/heart surgeon to Chicago to continue her work. We had the pleasure of celebrating her along with the amazing community she served during her time at Hopkins.  

In August we returned to clinic which resulted in more promising news!  They were not going to wean her from her meds, they were going to stop them altogether, removing all of Avery's medications from her daily routine. A huge victory for sure, but we were nervously optimistic as she was set to begin kindergarten. The principal, teacher, school nurse and staff all knew of Avery before she even arrived, so they have all been wonderful and supportive to our family.  

Our latest clinic visit was this past Monday.  Having been off of her heart medications for 3 months, I was anxious to say the least.  After going through all of the usual tests, we met with our doctor who said she looked AMAZING!  Her ejection fraction was 64, her strain better than before. Basically, her little heart was no longer enlarged. It was a normal 5 year old sized heart, squeezing at a normal rate, without any struggle, and without any medical support!  Our doctor said it was time to be removed from the heart transplant list!!  I am just going to say that again, Avery is not going to need a heart transplant!  I am not sure how we ended up here...only by the grace of God, Praise Jesus. All that followed that bit of news were tears (from me).  Tears of relief and gratitude- a weight has been lifted and our girl made healthy again.  We know the future is unknown and she will have a weaker heart than someone who has not suffered from myocarditis.  But we are celebrating this victory and her continued strength.  She still has time to grow and her heart to become even stronger.  We will return to clinic in 6 months and if all good, again in a year.  We are just so thankful for all of your support as we navigated this unimaginable journey.  We are happily closing this chapter in Avery's heart journey.  She will always be our brave little Avery!
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