Monday 10 September 2012

Depressing Details

Tonight we received a ton of information, all discouraging.  There are a million possibilities and details, all of which are over our head medically and too difficult for me to explain again.  The details don't really matter, the point is, we got a lot of bad news all at once.

What's important is how you can pray.  We need a miracle like we have never needed a miracle before. If Hope had a whole heart, her ability to deal with all her 'extra' problems would be much better.  The small problems are HUGE issues when you add Hope's heart condition to the equation.  The ascites in Hope's abdomen is one of those huge issues.  If it does not repair on it's own immediately, it could take away Hope's potential for all of the surgeries she needs.

My dream would be to wake up tomorrow with Hope's ascites completely gone and her abdomen no longer distended.  At this point no one wants to touch Hope, none of the surgeons in cardiology, general surgery or GI.  They all see her as a ticking time bomb that no one wants to touch and be responsible for.  If anything is going to happen and move forward, we're going to have to fight for it to be done and take responsibility on ourselves if it's unsuccessful.  This is the most horrible feeling I've ever had in my life.  How do we know, as non-medically trained people, what to fight for?  Could we live with our decision if we pushed for something that turned out poorly, or didn't push for something and Hope suffered as a result?

I am completely broken, this has got to be my breaking point.  Where is the light at the end of the tunnel or the level where God steps in and decides you can't handle anymore?  I feel like one of the Israelites in the Bible, walking through the dessert in search of the promised land.  I stand amongst them and yell, "How long oh Lord?"

We need wisdom and discernment, we need massive wisdom for our medical team.  We want them to tell us what has to be done and to make the best decisions for Hope.  We are heart broken and completely overwhelmed.  We know that so many of you pray tirelessly for Hope and our family.  I will go to no end in the fight for my daughter, so I ask you to continue praying.  We need a miracle, one that only God could give.

37 comments:

  1. Oh Amy! We will pray ever more earnestly.

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  2. Crying before the Lord, begging him on behalf of your family and your sweet girl. Interceding as much as I know how... thank God for his Spirit who can interpret the groans of our heart!

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  3. Praying for you guys! God is perfect in his timing. I pray that God would make things clear, that he might shine his light upon this situation. No problem is too big or complicated for him. It has all been laid out in his perfect plan. I pray that you might have peace and rest in his gentle hands. I cannot imagine how overwhelmed you must feel...but I pray tonight God might give you an overwhelming peace and assurance that he is in control. Heart hugs to you, Hope, and ALL of your dear family!

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  4. Praying with you tonight!

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  5. Praying for you and your family, I saw Christen's post on facebook. My little guy was born with a heart condition too, and I so appreciated everyone's prayers for him. I will pray for Hope and for your family.

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  6. I stopped and prayed after reading your request. Hope you're always in my prayers. Hugs to you amy

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  7. I am praying for you to receive an extra measure of knowledge, wisdom, understanding and a peace that surpasses all understanding!

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  8. Praying for the miracle of Hope's healing.

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  9. Praying for little Hope and your family. I came across this song that touched my heart tonight and I thought of Hope.

    He Knows My name

    I have a Maker
    He formed my heart
    Before even time began
    My life was in His Hands

    He knows my name
    He knows my every thought
    He sees each tear that falls
    And Hears me when I call

    I have a Father
    He calls me his own
    He'll never leave me
    No matter where I go.

    He knows my name
    He knows my every thought
    He see's each tear that falls
    And hears me when I call.


    Praying for a miracle for Hope and your family.

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  10. Praying in Indonesia for a miracle and His glory to fall.
    Love and prayers
    Melissa

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  11. I continue to pray for you and baby Hope... I can not imagine all the emotions that you are carrying within yourself but I do know that He is with you every step.. He will direct your paths and your decisions because you and your family are leaning on Him...
    my house mate is a pediatric nurse practisioner...if you want to talk with her let me know...she's been hjelping me to know how to pray for you guys....

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  12. You are an amazing mom, keep fighting for hope, we are standing by you in prayer. These are the times I don't know what to pray but just cry out to God and ask for mercy.

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  13. I'm a friend of Christen's in Australia – I've been praying for Hope. I will continue to pray, for complete and miraculous healing. For God's anointing to fall on her doctors hands and minds. For the supernatural to happen. For this to forever be a testimony to God's greatness. For you to have peace that transcends all understanding. For His presence to be tangible to you. Praying. xxx Cath

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  14. Asher and I just prayed for Hope. Love you guys!

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  15. Amy,

    We are praying constantly for you. Thank you for giving us specifics to pray for. Allow the Lord to carry you through these hardest of days. Cast your burdens on Him. Jesus, we plead for a miracle.

    The elliot Family

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  16. Praying in Chile for baby Hope. <3<3<3

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  17. Please go to www.ibethel.com web site (http://www.ibethel.org/healing-rooms-ministry). They have a prayer healing ministry on skype for the sick every Saturday. God is truly moving out there now and they are amazing people. They have so many recent testimonies on how God heals still now a days. They will gladly pray for your daughter... So will we! Give it a try! :-)

    Marie-France

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  18. Amy, my heart breaks for you and your family. We pray for Hope constantly and will keep on lifting you all up in prayer. Love & hugs from the Rickards.

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  19. Amy, we are praying for wisdom and discernment for you, for the medical professionals, and for everyone to find a sense of peace. Praying that God's will is done, and that you (and Hope) are truly comforted by His presence. With love, Lyndsay and Dean

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  20. Amy, I am praying for Hope and will continue praying for her until she is well. I am praying specifically for the medical team to assist you in a great way...for at least one of them to give your family solid guidance, for one to reach out to your little girl and know her need in such a way that they'll be able to help you in your decision making process and help you act upon the best choice for Hope. Also, lots of skin-to-skin contact has been shown to help heal babies and speed up their recovery, even if that's a gentle hand stroking her back, head, legs or arms, or lightly resting on her cheek.

    This song helped me a lot through a very hard time.
    I hope it helps you, too: http://www.youtube.com/watch?v=ptQiLSP23gU

    Lifting Hope up in prayer to our great Father,
    ~MW

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  21. Anne from Scotland, will pray earnestly for the family,baby Hope. also the doctors & nurses. God is able to heal!

    Anne xxxx

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  22. Just read your post!
    I am Trusting in the God who created HOPE to bring wisdom to her mommy and daddy as what to do.
    I know it must be difficult, I have no idea what you are going through.
    I do know that babies, especailly little girls are very strong, and Hope has been a fighter since she was born.
    In saying all of that, I pray for God to pour out His healing on her, His presence and peace on you and Shawn...His wisdom to all the Dr's nurses, tech;s and who ever else is there, to know what to do.
    Sometimes, the waiting is the healing.
    Those who wait upon the Lord WILL renew their strenght, and by the sounds of all of this, you are in need of that.
    Praying for you all....helpless in not being able to 'fix" this, but knowing that if God wants Hope to be healed, He can do it, if He wants the Dr's to wait, then they wait.
    Yes her condition is critical, and a decision at this point is prob something that no one wants to make. So don't.....just wait. God is in the waiting, we pray, and He works out what He has had planned all along!
    Faithful is our God....that I do know. Trusting the He is near you, you are near Him, and know that He loves you, loves your little girl, and we all are agreeing together for a miracle!
    Praying for Hope today to our Lord and Savour Jesus Christ!!

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  23. I've been reading your blogs, our prayers are with you and your family...continues that God's hand is on Hopes life and that you as parents feel God's undying, unwavering love. God Bless, Kim

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  24. I know of your story via two mutual friends: Sharla and Dana. I am praying for Hope, and that God would give the doctors wisdom and courage. I am also praying for YOU - for rest and peace in the now to press on and endure.
    Kendall in Saskatoon

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  25. Praying, weary warrior, that you will find the strength to allow God to redeem this situation for His glory. A mother's heart is to hang on and never, never, never surrender, and God understands that. It is precisely that sentiment that drove Him to go to the depths of hell so that we would understand the great Love that He has for each of us. He planted that seed of love within your heart for your precious daughter and He understands the depth of your anguish. Surrender it all to Him, dear one...give all to Him; your anger, your weariness, your despair, your confusion, and finally your treasure, Hope. Know that she is safe in His arms no matter the outcome of doctors or decisions or surgeries on this side of eternity. May you feel the comfort of a great army of God as you are surrounded by prayer tonight and know YOU are loved!

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  26. Amy and Shawn: Our hearts go out to you both as you face this difficult time with your sweet baby Hope. We are praying for you.
    "Thou wilt keep him in perfect peace, whose mind is stayed on thee, because he trusteth in thee. Trust in the LORD forever; for in the LORD GOD is everlasting strength."

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  27. We have been reading your blog through the Trute family. We too, are praying for the exact strength and answers and miracles God can give. Prayers will continue to be with your family and especially with Hope. Sarah in Ottawa.

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  28. We will be praying for your precious baby Hope.

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  29. I just asked our Father for a miracle for Hope - so that He will receive all the glory!!! Also, for peace that surpasses all understanding to fall over you and your family.
    Love and care from Burlington, Ontario

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  30. Amy and Shawn. As soon as I read this, stopped everything and prayed. We are praying for a miracle. God has you in his arms, and is holding you up. We pray for an answer for Hope. You, Shawn, Sadie, and Hope are in our prayers and thoughts. May God hold you all in His arms.

    Love,
    Eric & Karen

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  31. Praying... have you read any of Bowen's Heart story? Matt Hammit has written a beautiful album that you may find some hope and comfort in? God is good. Praying.

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  32. Thanks for sharing! My heart is broken for you and your family. Will certainly be thinking and praying for you, Shawn and your baby!
    Jon Hoffman

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  33. I am praying whole-heartedly for Hope and your family.

    Dolly (angela's friend in Houston)

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  34. Dear Amy,

    I am a friend of Holly's and she told me about your situation and I wanted to let you know that we have a bible study group called Sassy Sissters and we are all praying for the Lord to guide you and Shawn through these difficult times and to show you and give you both the confidence in the decisions he is guiding you both to make. I pray for his hands to be on you and your family and surround all of you with his everlasting love. Carrie Spencer

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  35. Hi Amy,

    I just wanted to let you know that I am praying for you and for Hope. I found your blog through Maxime Springer's comment on facebook. I am a pediatric nurse and have seen that God does do miracles. I am praying for one for you now. Your blog is a testimony of your faith and I trust God will continue to give you strength. May you feel His presence and love.

    Michele Carr /Vogel

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  36. Amy, God is able to do, abundantly, above all we can ask or think. He can make a way, where there seems to BE no way. I am asking Him to do that, right now! Father, You know what little Hope needs to be healed. You have created her, and though she has only half a heart, You are able to make it work as a whole heart, so I'm believing that You will do that. I'm believing You will make her strong enough to undergo the surgery she needs to correct the things that are wrong in her body. Or, if You prefer, please just do the surgery, Yourself. and make her every bit whole, and healed! And do it so that no one can doubt that it is You who gets ALL THE GLORY! And, let little Hope be that great witness of Your power, and love. In all of it, I pray you give Hope's Family peace and increase their Faith. In the Name of our Jehovah Rophe, Jesus Christ, I pray....AMEN and AMEN!!

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