Thursday, 16 May 2013

Extreme Highs and Lows

The last 24 hours has been one of the most intense roller coaster of emotions we've experienced yet.   I am typing this as quickly as possible as my migraine is not enjoying the computer screen.  There is simply too much going on to not update and have you all praying more specifically.

It started early this morning just after midnight.  Shawn and I were asleep in bed, had not been asleep for long but had finally managed to fall asleep.  Our home phone rang and Shawn managed to get there before I could.  I ran next to him saying, "Oh my goodness!" over and over.  He handed me the phone and I anxiously answered, hoping we were getting a heart.  Unfortunately it was the Calgary hospital calling with bad news.  Hope had been vomiting blood and they would be holding her feeds for the night.

This morning I arrived exhausted.  Although I had a shower, I heard more today about how tired I looked than I normally do.  I simply did not sleep well after the discouraging news and the extreme high of thinking we were getting a heart, to the low of realizing there was no heart and Hope was getting worse.

Hope was extremely sleepy all day today and less grumpy, but not herself.  Her feeds were re-started and after only a couple of hours, the vomiting returned.  The blood has not increased so we don't know what that is from at this point as it wasn't severe enough to warrant a great deal of testing.  Her feeds were rested for a while and restarted.  The vomiting returned and Hope was not happy.  The feeds are coming back undigested and clearly not tolerated.

This evening just before 7pm the hospital called once again.  Hope continues to not tolerate her feeds and they needed to make a decision on what to do.  This morning Hope weighed in at only 12 pounds. That does not leave her a great deal of weight to lose and we need to guard every gram on her body.  The doctors did not feel that putting her on IV fluids through the night was safe with her being so skinny.  They decided instead to up her heart meds.  That doesn't sound like a big deal, but you can only go so high on them and they reserve this tactic as a last option.  Hope's dose was increased by 50% of her previous dose.  If this works, we have more time.  If this is not effective, Edmonton will be contacted in the morning and there is a good chance we'll be heading to Edmonton for the Berlin heart. This is obviously devasting news and signals the end of our battle with Hope.  If Hope does not get a heart quickly, there is nothing more they can do.  Although the Berlin heart may give us more time, it is also extremely dangerous with Hope's clotting tendency and how tiny she is.

Just before 10 tonight I found out that one of Hope's heart friends is getting a new heart tomorrow morning.  You would think I would feel jealous and frustrated.  I actually feel slightly encouraged.  I have felt all along that until Caleb got a heart, Hope would not receive one.  It is more complicated to match hearts than simply the number of people on the list, but I always felt he would get a heart first.  Knowing that his heart has arrived, I feel like Hope's heart will not be as far away as I had thought it would be.

We need a miracle.  We could truly use a heart by morning if possible.  I know that God is in control and is watching over our family.  I pray that his plan is for Hope to have a new heart before she needs a Berlin heart.  Please join us in praying for a miracle.  We are also praying for a heart for Curtis, pray for him as you think of Hope.  He's much older than her and needs a bigger heart, but is in great need as well.  Pray for the parents of North America.  I read an article this week that talked of the lack of organ donors and how the problem is getting worse and not better.  I pray that Hope's story not only raises awareness for her, but for everyone that will need an organ in the years to come.


  1. So sorry to hear Amy...
    Dear Lord PLEASE give wisdom to Hope's doctors as they attempt to keep Hope stable until a new heart comes. Father, I pray that a new heart would be found before Hope needs a Berlin Heart. Lord I pray for Curtis as well Lord that you will be with him and his family as well. You Lord know all the needs here and I pray in the midst of this extremely hard time that you Lord, would bring peace. I pray for health for Amy and Shawn, give them strength for today and hope for tomorrow. Please Lord, be with this family today in such a great way that they feel your presence deeply. AMEN...


  2. I am so sorry to hear about hope. I will continue To pray for her, and for you to help you and your family get through these tough times. I've had this feeling while I have been following your blog, that hope is going to be all right.

  3. Amy, thank you for sharing Hope's story with us. I have been following since last year and live in the same town as Lindsay... A year ago my 5 year old daughter became critically ill and was subsequently diagnosed with a malignant brain tumour. Over a 24 hour period, she fought for her life and I had to consult with the organ donor team about whether I would allow Jasmine's organs to be harvested should she pass away. I was terrified and could not agree even though I am an organ donor myself- it felt like they would be carving up my baby girl and I couldn't bare it. Having followed Hope's news through your amazing generosity in sharing her life and journey with us, I would now make a different choice and allow her organs to be used to help save another child. Thank you for your amazing courage, strength and faith. I stand in prayer with you and believe for a miracle for your daughter and family. I pray your strength, courage and faith to continue to grow and bring you comfort and hope as you travel this season. I ask for Hope to receive her heart and for her to be completely and wholly and healthily restored to you and I praise God for his goodness. Sending much love to your family x

  4. Dear Amy and family. I have been following your blog and know a little of the roller coaster ride you are on (we have a son who has a similar heart problem). We are praying for you, praying that you may know the everlasting, strong arms of our Abba, our Heavenly Father who loves us so much holding you up and hedging you in as you walk this road. Whatever the outcome, whether Hope receives a new heart or goes Home to be with Jesus, we pray you may know His incredible peace, comfort and strength. It is awesome to be reminded of Deuteronomy 32:3-4 "Ascribe GREATNESS to our God! The Rock, .......His work IS PERFECT....." Much love in Christ to you and the family, especially over the next few days. Xxx

  5. Hi Amy

    I think you are very brave and strong. I will be praying for hope and her heart friend. I know the importance of organ donation and am a registered organ donor myself (though with all my health problems and disabilities I doubt my organs could be used.) A note to everyone that you have to sign up on line and not just carry an organ donor card to be an official donor. I hope someone can give Hope a heart. The decision is a hard one to make and I pray parents would allow their children who have died to help other children live. Take good care.

    Knuffels to you all including Hope (Dutch hugs)

    Naomi in Ontario

  6. Hi Amy & family,
    I followed a link from f/b as friends of Caleb..we have a son (Sawyer) who has heterotaxy syndrome who has underwent the Glenn procedure for his heart condition. My heart breaks with your family, and we will lift your little Hope up in a prayer for strength, stabilization and for that miracle heart she is so in need of. May He grant you rest and peace. ~Jana

  7. Though I don't write often, I keep reading and praying. Every day your family comes to mind, and I pray! My heart is with you and with Hope, and with hope in our Lord!
    with love,