Friday, 28 September 2012

Pleading for Life

Brokenhearted.  That sums up how we're all doing.  On November 18th when we were told that Hope's little heart was broken, I mourned.  I wasn't sure if she would live or die, but I mourned the blessing of a healthy child and feared the worst.  Today my heart feels much the same.  Do I know that Hope will die?  No, but I fear the worst and am being forced to face reality.

This afternoon and evening have been difficult to say the least.  I sat through 3 important meetings with our most important doctors.  I met with our favourite cardiologist in Edmonton, our surgeon and the cardiac anesthetist.  The reality is not good and Hope is running out of options.

The failed PICC line is a much greater devastation than we initially realized.  The cardiac anesthetist explained to us today that he went into the OR for Hope's procedure (although he was not handling her care) and watched.  When they ultrasounded her arms in search of a useable vein, what he saw was not good news for us.  He informed us that we will come to a place, and are near there now, when they won't be able to operate on Hope any further.  They simply won't have a vein that is useable and there won't be anything else they can do.

Every procedure, surgery and poke is destroying Hope's veins.  If we had an option, we would cancel Hope's hernia surgery on Monday.  After meeting with the heart surgeon, we don't feel this is an option.  If the hernia were to strangulate (close off at the top), whatever is inside the hernia would be killed.  This is something we already knew, but that's not the worst of it.  If this happens, it's a death sentence for Hope.  She would not survive and there would be nothing they could do with her current set up for circulation to her bowel.  It's simply too risky to leave and the hernia operation will have to be done.

Each time Hope is put to sleep she does not tolerate it well.  Anesthetic is dangerous for a healthy person with perfect anatomy.  When Hope is asleep, her heart struggles and she needs to be given different drugs to keep her going until they finish.  It is dangerous, and becomes more so with every procedure.  The anesthetist working with Hope on Monday is one of the best.  The head of cardiac anesthesia selected her personally to put his own children to sleep.  There is only one cardiac anesthetist on service this week, and he'll be in the OR doing heart surgeries.  This is our next best and only option for Monday.

There is one thing that every doctor agrees on, Hope's surgery on Monday is VERY risky.  They also agree that we don't have another option.  If Hope defies the odds and sails through her surgery on Monday, Dr. Ross will book her Glenn for when she is recovered.  If she runs into complications and does not do well, as they expect, he won't operate.  At that point, if she stabilizes, we would be sent home to wait.  They would wait until she was literally not able to live without the Glenn and would then take the risk.  They aren't sure if waiting would help, but hope that somehow it would.

This is not the end of the terrible news.  If Hope sails through and has the Glenn, they are fairly sure she won't be a candidate for the Fontan (the third and final surgery) because of her liver.  The pressures from the new circulation would kill her.  She would have to be listed for transplant.  There is a surgery they do in Toronto that we could attempt first, but the survival rate is low.  We'd have to weigh the odds and make a tough decision at that point.  The doctors don't talk much about it as they aren't sure she'll make it to that point.

If you saw Hope on a good day, it would be hard to believe that things are so serious.  Many days we forget how fragile she is and feel so confident that we'll walk her into her first day of school.  On days like today, we are reminded that celebrating her first birthday will be nothing short of a miracle.

One of the doctors raised a really tough question with us.  He shared that here in Edmonton specifically, they have become incredible at working with hearts.  They are able to do things that were not thought possible before.  He shared that he struggles with whether they've gone too far at times and pushed families and children through surgeries that won't change the final outcome.  He challenged us to think of Hope and not to make her suffer any further once there was no Hope of a future for her.  He doesn't feel we are there right now, but warned that we were getting close.

In our third meeting, when I had worked up the strength to ask, I asked if the doctor thought Hope's chance of survival was low.  He looked down and stated that to be honest, he didn't think she would survive.  He feels that the clotting, lack of useable veins and liver issues have pushed us into an impossible corner.  I pray he's wrong.

On days like today I don't know how to pray.  I feel pain and nothing else.  I don't know what to ask God for other than Hope's life, and I know that is already in his hands.  I plead that he spares it, but trust that he has a plan, even if I may not like it.

I'm truly numb and don't want to talk to anyone.  Shawn and I drove to RMH from the hospital in silence, what do you say?  Shawn is sleeping at the hospital with Hope and I asked my parents to go to a hotel tonight as they had planned to do.  I know that this is difficult for everyone and they need an opportunity to mourn as well, I simply don't have the strength to witness it.  I needed to be alone with my pain.  Sadie is sleeping beside me and I can only hope that somehow I'll find a way to sleep as well.


  1. Wow, that is incredibly hard news. I will pray for you and hope, that God will give you peace that passes all human understanding

  2. Praying for you my dear!! When all hope is gone, there is Jesus! So dear Jesus, please heal Hope and be near her, and her mommy and daddy as they are doing the best they can to make decisions to help her.
    Holy Spirit move Mightily on this family, and use their lives to be intruments to give Glory to YOU. As they rest tonight, Lord surround them all with your presence, and love, and give them encouragement, Joy, and peace in the midst of this night.
    Lord only you know the outcome, so we give Hope to you, to use her life to bring you Glory!
    Dear Jesus, we pray for a miracle, and know that you are the God of miracles!
    Just be near everyone tonight, and be near Amy as she is in so much pain....only you know her pain. Lord, give her wisdom, and peace, and may she feel your presence right beside her......thank you for what you are going to do, and what you have already done! We love you Lord, and Praise you in the storm......Amen xo

  3. Sometimes the tough decision, is the one that takes the least medically invasive route. Sometimes it is taking the risks, and knowing the consequences can be devastating. What an impossible place. Much love.

  4. Amy, we met last night, and I just came across your blog. I am sad for you, and this big risk you're up against. I am also in prayer for you and especially Hope. Praying for the surgeons & doctors caring for Hope, and for the best results. Praying that Jesus will be your comfort, and guide your thoughts towards Him, and give you peace. When there is nothing else to do or say look to Jesus, he already knows, and He cares. I'm close by if you need, in room 16 on 4C. Karey

  5. As I was reading through your blog today, God placed this song on my heart and I wanted to share the lyrics with you. Many times when I am just feeling I can't pray, think or work my mind through difficult decisions, God places this song on my heart and it comforts and reminds me of His love for me. This is so very difficult for all of you Amy. I am truly sad for you all of you going through this. I cry tears for you you all and have never met you. I will continue to lift you, Hope and all of your family in prayer. Remember that when the footprints are not there that He is carrying you. Know that so many are praying for you all. Still praying for a miracle.

    Lay it Down-Jacki Valesquez

    I've been looking till my eyes are tired of looking
    Listening till my ears are numb from listening
    Praying till my knees are sore from kneeling
    On the bedroom floor

    I know that You know that my heart is aching
    I'm running out of tears and my will is breaking
    I don't think that I can carry the burden of it anymore

    All of my hopes and my dreams and my best laid plans
    Are slowly slipping through my folded hands

    So I'm gonna lay it down, I'm gonna learn to trust You now
    What else can I do everything I am depends on You
    And if the sun don't come back up, I know Your love will be enough
    I'm gonna let it be, I'm gonna let it go, I'm gonna lay it down

    I've been walking through this world like I'm barely living
    Buried in the doubt of this hole I've been digging
    But you're pulling me out and I'm finally breathing
    In the open air

    This room may be dark but I'm finally seeing
    There's a new ray of hope and now I'm believing
    That the past is the past and the future's beginning
    To look brighter now

    'Cause all of my hopes and my dreams and my best laid plans
    Are safe and secure when I place them in Your hands

    Much Love, Kimberley

  6. I don't know what to say other than as I read my husband this post and found a picture of Hope, I looked up to find tears rolling down his face and his eyes clenched tightly in prayer. We are pleading with God with you. Prayers for you and your husband.... From me and mine.

  7. Hello,
    We've never met but we have mutual friends. I've been following Hope's story and praying along with you. Our babies are about the same age and so when I'm up at night, I've been praying for your family. I cannot begin to fathom the choices you have before you; your fears, your nightmares, your victories and your hope. Please know that there is a large army of people praying for you tonight. Pleading with you for Hope's life and shedding tears with you. I prayed that especially tonight, that God's presence would be tangible to you. That if you wake up you'll be able to feel him and actually rest against him. I've prayed for him to be tangible in your silence tonight. I'm not sure why but this Irish Blessing came to mind tonight when praying for you:
    May the road rise up to meet you, may the wind be always at your back, may the sun shine warm upon your face, the rains fall soft upon your fields, and until we meet again, May God hold you in the palm of His hand. Amen

  8. I'm so sorry you're going through this :( What pain...

  9. I love you sooo very much my friend.. I am so so sorry.. I am praying, hoping, grieving , and wishing I could come and hug you all at the same time..

  10. Im so sorry for what you're going through. We are praying for miraculous change and for odds-defying health and healing. Come, Lord, bring your healing and your peace. -annie in toronto

  11. Dear Lord,
    Thank you that You are God and we are not. Thank you for the times when we have no control because over some things we wouldn't want to hold that control. Thank you for baby Hope. Thank you for creating her and for hand picking two perfect parents for her. Thank you for preparing Amy and Shawn their whole lives to be equipped for this impossible trial and for never letting them do this without You and without the love and prayer of so many others. For such a young little girl she has united so many in prayer and has already touched so many lives. I thank you for skillfully and deliberately creating and shaping her. For loving her and knowing her before she was ever conceived and for creating Hope perfectly in Your image. I pray that You send your angels to watch over Hope and her family and to surround this family in Your peace and comfort. I pray that whatever Amy and Shawn need today it will be given to them. When they need strength, may they find the will to keep going. When they need comfort, may they hear words that bring them peace. When they need hope, may they find Your promises. You are the God of miracles and nothing is beyond Your power and no one is too sick to be healed by You. I ask you to heal Hope's heart and her body in Jesus' name.
    In Your holy and precious name,

    1. My heart echoes this prayer. In Jesus' Name, Amen

  12. Praying in Toronto! I've only just read your story this morning, but I will pray for this sweet baby girl of yours, for you, for the doctors and for healing. Amber in Ontario.

  13. As you face the next couple days, struggling to understand, may you feel God's presence embracing you and holding you in his hands. He knows your deepest desires. Although this is so difficult, God will give you the peace that passes all understanding. We have been following your blog on facebook through a friend... Keep your eyes on Jesus and His presence will be your light during this time. Peace to you.

  14. Oh sweetie. Your friends have prayed so beautifully for you. As I read thru your heartfelt sadness and pain, I prayed too. And as I read through the powerful prayers of those who love you I prayed with them. I cannot say it better. And as I read and heard Jackie V's words run thru my mind and heart, I prayed for your emotions...which are now so raw. Amy - I'll pray today as God leads me, of course for Hope, but also for you, and Shawn and Sadie. You are truly so very much like the Holy Spirit. This is the kind of pain He feels right along with you and He will give you comfort. Love Kathy

  15. tears and more tears.... praying for comfort beyond words.

  16. My heart aches for you. The one thing that has not changed through all of this is God. He is still strong and mighty. Psalm 46 is a good reminder of God's power. Even in the worst situations. I will continue to pray for your family as you walk this road with Him.
    Sara Enns (nee Hildebrandt)

  17. Many prayers for you and your family.

  18. Our hearts and prayers go out to all of you. I can't even imagine how you are feeling other then the ache I read. I am truly sorry for this very sad situation in your lives.
    Knowing God is with you each and every minute has to be some comfort.
    I will continue to pray for the strength you need from God, to not leave him for one minute, to pray for courage and to show your sweet Hope the love she knows you and your husband have given her while on this earth.
    God does have a plan and through Hope, we have all come closer to you. With so much love to you and your family, God bless

  19. What an amazing young woman you are,all I can say I'll continue to pray for you all,A very difficult position to be in God Bless you all

    Anne xxxx
    from Scotland

  20. Amy, through tears sending love, strength and many prayers for little Hope, the fighter and your whole family. Always on our minds. Cate & Steve. xoxo

  21. Holding you and Hope in my heart <3

    1. Amy,
      I had a dream the other night that I was hugging you. I wish I could hug you now. Praying for you every day. Lots of love,
      Catherine Moon

  22. Amy, I am the grandmother of a HPLHS baby. I hurt for you. I am praying for you, your entire family and especially little Hope. I know that you are not in a good place right now. Tired and hurting. My prayer is that the Holy spirit surround you and Hope with all His angels and give you strength and healing. If you do not know what words to pray, God has his Holy Spirit do that for us, and you have a network of spiritual friends to support and hold you up. My prayer is that the surgery will be done on Monday and Hope, who has been such a wonderful soldier, will come though this. "Our God is an awesome God!!"

    -- an Oma

  23. A friend of mine posted a link to your blog. I wanted you to know that our family in Utah is praying for Hope and your family. My 9 month old son has been in and out of the hospital with complicated health problems and we've seen God work amazing miracles. These little angels he sends us are strong and they teach us great lessons. It is my prayer that it's Gods will to let little Hope stay with your family and continue to teach you great lessons. Hugs and prayers from Utah.

  24. God puts us here to live a life for him. We are here simply to complete the mission he brought us into this world for. Your Hope has touched lives around the globe, completing a mission others take years to complete. Prayers from Wisconsin tonight for your strength and divine guidance.

  25. Dear Amy,

    We went to Park Academy together, your sister Lindsay and I were in the same class. I've been following your blog and have been praying for your family since you were pregnant with Hope. I am so very grieved to hear this difficult news. It is not what you or anyone else wanted to hear. My prayer for you is that you will be filled with courage during these days. That God will comfort you and give you clarity of thought as you make decisions for your precious daughter. Cling to Jesus...he knows pain and sorrow intimately. May God bless you and may your honesty and transparency during this season of your life bring many people to know Him. Love a Sister in Christ,

    Jennifer Boughan (nee Robetson)

  26. You don't know me; a mutual friend posted this link on her fb page. I just wanted to write that you are not alone. But more than your family, your community and random internet well wishers standing by you, you are covered in God's love. In the depths of your personal hell, God is there. He sees you, He loves you, and He will never ever leave you. This is a broken world, but our God is a merciful God. He will redeem this season of suffering. Hope's story and your faith and courage have touched many lives. Praying for you in Edmonton, AB.

  27. Our family is going through similar situation. Our daughter has major heart condition and they gave her 30 percent chance of survival or gave us the option to keep her comfortable. told us she wouldnt make it with out having brain damage and other complications. She made those doctors scratch there heads when she survived the glen and was out of the hospital in five days with no brain damage or signs of delays. These heart babies are fighters. remember these doctors are only man like you and I. They are not God and do not have a clue what our big God is capable of. he still performs Miracles and is mighty to save and uses these situations to bring himself glory. Dont be afraid to seek out second oppinions. Boston medical is one of the best for treating heart cases. If you ever want to talk or need anything please call 714-336-2472 my name is Melody our website is

  28. Praying for Hope. Praying for you, your husband and your family. I feel I have met you as two friends have relayed your story and strong faith. Our baby just had complicated heart surgery 5 weeks ago, but can't imagine what you are going through. My heart goes out to you. Just know how much you are all LOVED ...... !!!

  29. Praying for a sense of peace as you try to rest with Sadie and strength for the days ahead. You are a strong woman xo

  30. What a blessing this sweet girl is and will continue to be, come what may. She will define and enrich your lives for as long as she lives (and I pray her days are long and joyful!) You have been given a great opportunity (I know you could probably just slap me for saying that) to show the world what it's like to really Love. Because you truly know Love. And He knows you. For the world to witness your faith, for the world to witness the strength you're exuding (which CLEARLY is NOT your own but His) can and will change those people's eternities. I'm praying for your sweet Hope. She has captured my heart! And I will be praying for hers. Remember how much you are loved. Remember that even if everything you held most dear were suddenly gone (a la Job) the Lord would still be enough. May you find peace in his provision during Hope's next surgeries.

    Love from North Dakota and the Smith Family.

  31. Amy, we were in Edmonton today for the Walk to Remember. I could not help but think of you when the LRT stopped at the hospital station. I pray that you never have the need to go to Walk to Remember. I thank God that I never had to know my Mackenzie would pass away just before 38 weeks gestation. I never had to make any hard decisions... I think God knew it would be too much for me. I will continue to pray for your strength and Hope's health.

  32. Amy, I have no words. I just had to write and let you know that people are here praying for Hope and for you.

    Wishing, hoping and praying in Ontario.

  33. The prayers continue to flow for your little bundle of strength and joy!

  34. Oh Lord, I lift this precious little girl up to You in prayer and beg you to spare her life and heal her. I know nothing is beyond Your power, Jesus, and ask you to work a miracle in her life, if it is Your will Lord.
    Comfort this family, Lord. I shed tears over this terrible news, Lord, without even knowing them. I cannot imagine the pain they must be going through.
    Lord, to think that You voluntarily gave Your Son to save our lives. Thank You, Lord, for that.
    Please bless this family and give them the strength to get through this terrible time. Wrap them in Your arms and show them Your love and strength.
    In Jesus' name,

  35. Dear Amy,

    My husband and I have been reading your blog lately because we know Ryan and Christen (we did a DTS at the sunshine coast in 2009) and my heart broke when I read your last entry. We feel so sorry! We are thinking about you and praying with you for a miracle! Even if the doctors have run out of ideas, everything is possible for God. We are on our knees interceding on Hope's behalf and long to see the God of miracles show his power and bring glory to His name through the life of your daughter!

    Lots of love from Germany,


  36. You don't know me at all. Because of the prayer support group, Tristan's Prayer Warriors, I am praying for you and for baby Hope. I know that you are in a hard place....I have not been there myself except for losing a baby by miscarriage. I have walked alongside friends who have buried their children, including baby Tristan that this prayer group was named after, and baby Truman, who was the first baby after baby Tristan, that we prayed for, who caused Tristan's parents to want to open the prayer group up to anyone who wanted to pray for children in need. Last month, again, some close friends buried their daughter. I want to assure you and give you "hope" that when you can't pray, others will pray for you, when you feel that you have no more faith, others will carry you by theirs until yours is strong again, when you feel that you can't take another step, others will walk along beside you and give you their strength. Jesus is always with you, he cares, and those who are his people will surround you and care for you too. Thank you for sharing so poignantly. You remain in my prayers! One more will be surprised at how much light there will be in your darkest night. You will be amazed at how much joy will arise out of your deepest sorrow. You will be shocked by how much love and comfort will flow to you out of your deepest pain. You will be astounded by how much faith is able to grow from a seed of doubt, like Thomas..."I believe, help thou my unbelief." Even if the worst should happen, you will soon realize that there is no death to Hope...Hope lives forever and this is not an end, but a new beginning in your lives...and you will always look back to this time and how God blessed you through your little Hope's life, and how she blessed others too. We are only healed through brokenness.