Friday, 3 May 2013

Officially Listed!

Today was moving day!  And that's why it's me, Amy's mom, who is writing this blog!!......

The move has gone well and Amy, Shawn and Sadie are in their new house.  They may be surrounded by boxes, but the beds are made up and they can crawl in bed tonight knowing that the biggest job is done!  Many thanks to their awesome friends who have helped in various ways....packing, unpacking, providing meals, keeping Sadie entertained, cuddling Hope and just being supportive and generous with their time and their love.  What a blessing you have been!

Hope was officially listed for transplant on Wednesday.  And now, the wait begins.  The doctors have told Amy and Shawn that the best chance for Hope would be to get a new heart quickly.  They have talked to them about other options to give her more time, should Hope's heart continue to fail, but because of Hope's complicated anatomy, these options are not ideal for her and some should not even be considered.  For instance, ecmo, the heart/lung assistance machine.  Because of Hope's clot in her neck, the doctors feel that by the time they were able to find a viable vein to use to place the cannula, too much time would have elapsed and Hope would be at risk for brain damage.  The Berlin heart is an option (mechanical heart) but this could also be very risky for Hope due to her tendency to clot.  A clot while on the Berlin heart could result in a stroke for her.  All in all, the ideal scenario would be for Hope to get a new heart as soon as possible.  And so....this is what we are praying for!

Ever since we got the news that Hope would be born with a severe heart defect, people have been praying for her and her family.  Many of you reading this blog right now have been faithfully and earnestly praying throughout this long and difficult journey.  Today, the stats for the blog show that this site has been visited over one million times and people in 65 different countries have read the blog at some point since it was created.  We believe, without a doubt that Hope would not be here today, if not for the army of prayer warriors standing in the gap for her.  She has overcome so much this past year through God's miraculous power!  We give Him ALL the glory for what HE has done in this little girl's life and we humbly ask Him to continue to spare her life and give her the new heart that she so desperately needs.


  1. Thanks for the update, Charlotte. Such monumental decisions. Praying for the best possible outcome. Amazing statistics that you mention. Proof positive of the value of congregated prayer.

  2. Thanks for the update! Praying!

  3. Hey Amy, My church has been praying for Hope and the ladies have made her a prayer quilt. I actually met you years ago at Christen and Ryan's wedding. I know Christen and Ryan from when we all went to uni together. Christen gave me your address a while back, but have you moved yet? If so, just wondering if I could have your new address, or the address of best place to mail you the quilt. If you have a spare moment (And goodness, I know you have so few) could please email me at We will continue to pray for Hope, specifically that she gets a new heart soon. What a journey you've been on as a family.
    New heart, God speed.

  4. Praying for Hope daily. What a remarkable little girl!

  5. Praying for a new heart.

    Naomi in Ontario

  6. I feel impressed to share something encouraging with you and your family. When our daughter was coming out of her first open heart surgery, she asked a nurse who that tall man was standing at the end of her bed. I realized that a guardian angel had been commissioned to stand watch over her. Earlier that day, the family with us were eating out - just to get out of the hospital because we surely had no appetite! - I put down my fork and stated with conviction to the effect that I sensed angels all around her room. I could "hear" the swish of angel wings. Later, I shared this with the consulting surgeon. His response was to the effect that he wished all parents of his patients had my faith...after all, there was only so much surgeons/medicine could do!

  7. Dianne Ducheno Johnson5 May 2013 at 00:05

    Thank you Charlotte for the update on all. First I would like to congratulate Amy, Shawn, Sadie & Hope on their new home. Praying to God for a new heart for Hope soon as he has & continues to give Hope strength, live & loads of love & prayers from around the world. It is only with his love that we all survive each day through all the trials & journeys we are chosen to go upon. May God provide each of the family, friends, volunteers , medical personals & all out their praying for Hope & her family the ability & knowledge to in one form or another be there for not only Hope & the family but also for their own. God works in wonderful ways & only gives to us what we are able to handle. May God bless all & through the miracles already performed with Hope alone strengthen our love for him & bring new people to him daily. We have an awesome God. Have a great day.