Wednesday 12 September 2012

No Guts, No Glory

Last night Hope was put back on oxygen, she wasn't able to keep her saturation levels high enough and needed a little help.  She's on a low level and will hopefully get stronger over time, but needs the help right now.  They started Hope back on bolus feeds to see if her stomach could handle two hours worth of her feed at once.  She has been on continuous feeds for weeks now and we weren't sure how she would do.  She was a star and tolerated her feeds very well.  It was clearly more difficult for her body to handle the larger volume of food and she slept almost the entire day.

The cardiologist spoke with the GI doctor and they discussed whether or not it was safe enough to do Hope's hernia repair.  They have decided to go forward with it and plan to do some temporary solutions to reduce the fluid levels in Hope's abdomen before she goes into the OR.  If it works, it will be temporary and her abdomen will refill over time.  The cardiologist then spoke with the General Surgery doctor that is supposed to do the actual hernia repair.  Only in our crazy life would this happen, but one or more of the OR's at the hospital have been flooded and are not currently operating.  This means that OR time is limited and hard to get.  As a result, we're not sure how long it will be before they can get Hope booked in for her hernia repair.  I can't help but laugh at the craziness of our journey some days.  This surgery will be risky and although I know she needs it, it's going to be a tough day to let her go into that OR when they aren't sure how Hope will respond.  They worry she won't heal properly and will continue to drain fluid for much too long.  We are going to obviously pray against this and believe God to be in control through it all.

Today was a tough day for me emotionally.  I have always had a confidence that Hope was going to be okay and that although this journey is awful, she would live to tell about it.  It's not that I'm now confident that she won't, I'm just not sure what will happen anymore.  This is not a lack of faith in God's ability to spare her at all.  I know that God is able to do this and more, I'm just not confident that it's the plan He has for Hope's life.  Nobody can know for sure what God has planned for each one of our lives.  Through this journey I have been reminded that this world is not our home.  God has created us for an eternal purpose and our lives on this earth are nothing in comparison to eternity in Heaven.  The entire point of us being here on earth is to bring glory to God.  I am amazed that my 5 month old daughter has done just that.  God has been glorified through her struggle and many people have grown in their walks with God as a result.  It's hard to believe that a baby, only 5 months old, has already fulfilled God's very purpose in her life!  What I battle with now is whether God will receive more glory in her healing or in her death.  I simply don't know, only God knows that and yet I believe He has the best plan.  Even typing the word death is terrible for me, the idea of losing Hope is simply too painful to even imagine.  Losing a child is the most terrible thing I could think of in my life.  

I believe in God and his perfect plan for our lives.  I would be crushed and in utter despair, but I know that if God ever chose to take Hope, it would be because He would receive more glory through her death.  This world is temporary and Hell is forever, I can't even imagine forever with my simple brain.  If one person comes to know Christ through Hope's story and is spared from an eternity in Hell, her very existence has truly saved another's life.  We talk about living for the moment, but the moment ends and we have to think about what happens when it does.  Where are you going to spend your forever?  If you've been following Hope's story and you don't know, I truly pray for you specifically, that you would come to know the creator of the universe.  He is the giver of life and loves us more than anyone could ever imagine, how can we not trust that his plans are greater than our own?

Yes, my heart aches and my eyes flood with tears as I type this and it's difficult to express.  I just want everyone to know that I love Jesus Christ and not just when He gives me the things that I want, I will love Him either way and trust in his perfect plan for my family.  That being said, I will beg him to spare Hope's life until her last breath or my own.  I want to die an old woman and still see Hope living her life and sharing her miraculous story, I hope that's what the future holds.

11 comments:

  1. How amazing it is that even in the midst of sorrow, frustration, tears, doubt and fear God can still work through people and in people. This post touched me as I could see how God has been bringing you to this point and how because of your attitude in the midst of brokenness you are a living example of what it means to give it all to God. To trust when all seems lost. To be willing to give and let go in order to bring Him glory. How hard a place to be in and how He also understands and hears the deepest cries of your heart! All I could think was how abundant His blessings are going to be in your life, no matter the outcome. How much your story is going to continue to touch lives and stir hearts. May you find peace in the midst of chaos, joy in the midst of sorrow, healing in the midst of pain and blessings in every little corner around you. May the God of all comfort be ever near and may you be able to trust in the Author of Hope's life. What a beautiful life it is! I am praying for you, holding you close in thoughts and prayers and trusting that ultimately God will make all things beautiful in His time. Hope WILL be made well and no matter how that happens God will be your perfect peace. Hold her close, cherish her, pray for her and know that we are praying and longing for Christ to reach down His healing hand and make her whole!

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    1. Amen to all that chickadee says! He is a faithful God

      Anne from Scotland xxx

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  2. ...Thank you. Thank you for your beautiful, honest and vulnerable post. There really is nothing more that can be said. We are with you in prayer that God will heal Hope. May God continue to sustain you and may the Holy Spirit comfort and encourage you and your family and bless you for your courage and faith.

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  3. I saw this post on Allie Kearns facebook(i know Allie from college). It brought tears to my eyes as I read. My 3month old daughter, Clover, is asleep on my chest as I type. Clover is recovering from open heart surgery ....she was also born with a heart defect. She has tetralogy of fallot with pulmonary atresia. I know exactly how you are feeling. After surgery Clover had some complications...the worst of them being her heart stopping and needing CPR for ten min. They worked on her and got her back. When we were called to her bedside she started to decline again and drop her heart rate. We were asked to leave as they worked to keep her stable. At that moment I thought the Lord was going to take her. I was sure He had given us the time before surgery when she was stable to cuddle with her because she wasnt going to make it afterwards. The Lord brought her through and she is such a blessing. You described your daughter as already accomplishing what the Lord wants from us and I see the same thing with my daughter. I know what you are feeling and I will be praying for you. I grew up in Ontario but I live in Delaware with my husband. My heart aches for you. I read the psalms over and over through her 7 weeks in the hospital and when I was too exhausted to pray I took comfort in the fact that others were praying and lifting our family up. My name is Bronwyn Hall....like I said I saw this blog post on Allie Kearns facebook. My email is timandbronwynhall@gmail.com is you ever need to chat ir need some encouragement. No pressure...I will be praying for your precious daughter.

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  4. Weeping witn you strong and courageous woman of God. When I pray for Hope all I think of is what hope is, hope that God is going to do something good. Praying for Hope and the hope we have in Him f
    or her. Love melissa.

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  5. You don't know me, and I don't know your family. I did a DTS 6 years ago with Ryan and Christen as leaders in Oz and I am now following you and Hope here in Denmark - over all I'm praying for you! I'm inspired and challenged by your story. Thank you for sharing it! Thank you for staying strog in faith! Love Linea

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  6. Hugging you right now. May the Lord continue to sustain and uphold you, my dear sister of faith.

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  7. Been following Hope's story with God's glory for some months. It coincides with my own daughter's crazy battle for her life with cancer. You write with eloquence, bravery and beauty the combination of fear, pain and hope for these times and journeys. I pray for both our babies daily and I think of you often. YOU are amazing and yes - know how precious you and your family are to Jesus. Sending a hug your way.

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  8. Amy, your honesty is courageous. With love and continued prayer, Lyndsay and Dean.

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  9. I don't know you either, and you don't know me.... my cousin posted your story. We will be praying for Hope and your family. I will continue to follow your entries.

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  10. I've been following your journey for awhile from a friend of yours. It breaks my heart every time I read a post for I know all to well what it's like to lose a child, well make that 2. My identical twin boys were born early and their tiny lungs were not developed enough to make it, so they let me hold them till they took their last breath. Not a day goes by when I don't still feel them all snug in my arms. I've been talking to them asking them to watch over Hope and to help her fight through so she can live to tell her story. I now have 2 kids and I make it priority that I live each day to the fullest with them for you never when things might change. Your one amazing person/mother and Hope is the luckiest kid to have you by her side fighting. Hang in there and my family will continue to pray for you.

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