Sunday, 3 February 2013

Cheap T-shirt

I feel like a cheap t-shirt.  You know the one you saw on sale at a store you never shop in, but this time you decided to give it a shot.  After wearing it for 2 hours you find the first hole, and after one wash the t-shirt is only useful as a rag.  I am a cheap t-shirt right now, I'm extremely thin and too much more of this is going to cause me to tear.  Once again I had to say goodbye to Sadie for the week.  Snuggling with my daughter while she repeats, "I don't want to go, I just want to stay with you", is an absolute torture.  Shawn and I have decided that going into our 4th week living apart, that this will be our last.  If Hope and I are not home by Friday, he and Sadie will be moving up to Edmonton until we can return as a family.  It's just too hard to only be together as a family for 2 short days a week.

Hope's left lung continues to drain large amounts of fluid.  She is over 1500 mls already.  The medications we tried have not been enough.  Hope stopped receiving her feeds an hour ago.  After working so hard to get her eating again, we are going to have to start over.  Hope will receive only TPN (liquid nutrients) for at least 7-14 days, depending on how long it takes to get her left lung to dry up.  Please pray that it happens quickly and we can get her eating again.  After having that food in her stomach, she is going to feel hungry and will surely wonder why we are starving her once again.

Hope did very well last night and had a decent day today.  She was awake often and yet was able to have some good naps as well.  Her platelet levels are really low, so they are looking into this and wonder if she has a new clot somewhere.  This would be so discouraging, as we have more than enough clots already.  If she doesn't get her levels up soon, they'll have to give her some platelets to get her back up to a safe level.  She also continues to have 50% of the chest tube drainage replaced with albumin.  Albumin is taken from human blood and we are using a lot of it every day.  Please consider donating blood if you are not already doing so.  Blood donors are keeping kids like Hope alive.

I had the blessing of holding Hope for a little bit longer today.  She still got uncomfortable quite quickly and wanted to be put down.  The time I did have her in my arms, was absolutely wonderful and I cherish those moments.  I always struggle when Sadie is only here for two days.  I don't want Hope to feel like I'm not around and to be looking for me all weekend.  Yet, I want to spend my time with Sadie as well.  I'm not very good at playing with toys and running around.  I'm the type of mom that wants to read books, watch movies or take you out on an adventure.  I have a really difficult time keeping Sadie entertained at the hospital.  So if I want to have some intentional time with Sadie, I have to leave Hope. It's a position that no parent should be in for such a long period of time.  It's been 6 months already (not counting the first 2 months of her life in hospital).   Hope will have her 10 month birthday in the same room she celebrated her 6 month birthday.

I am praying that next week is full of good news, encouragement and hope of a return to Calgary.  This past week has been absolutely exhausting and finishing it off with another goodbye to Sadie and Shawn was a kick in the teeth.  We need things to turn around, we're starting to wear thin and I'm not sure how much more we can take.

13 comments:

  1. I'm praying for you, Amy. I believe you can be strong and you can keep going for both your girls. God created you to be the woman of strength you are and I believe He will be with you and keep getting you through these long days, weeks and months. I pray that God will keep sending you people to help you and your family and provide you with food or time away from the hospital or whatever your need is at the time. I pray that God will help Shawn and Sadie in their week away from you and I am also praying for next week to only be full of good news and bring you back home to Calgary. I'm not tiring of praying for you and Hope, you have an army with you.

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  2. I too continue to pray for you even though we have never met. Hope was my first thought this morning. As a mother and grandmother I feel for you as you are torn between family in two cities. You continue to be an amazing example of a faithful Godly woman and I stand in awe of all you have to deal with. I stand with your army of praying warriors. Praying for miracles.

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  3. Hi there, someone found your blog and shared it with me. We are at Sick Kids in Toronto with our daughter who was born Dec 4 with HLHS. I know our stories are very different and things are very difficult for you right now, but I will be praying for you - and at least I'm so familiar with all the lingo that I understand what you are saying! :) I hope the chyle drainage stops soon and you can get home!

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  4. Still privileged to be praying for you and your family. I can only imagine how draining the roller coaster ups and downs must be. Know that you have many many people praying to support you. Your strength has been amazing and I pray that you get the rest you need and that you are built up by those special moments with Hope. I pray that the doctors will have wisdom to know what is best for Hope and to know the solutions to the mysterious issues Hope is experiencing. Hang in there Amy!

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  5. “When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn.”
    Harriet Beecher Stowe

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  6. praying for you here in Malawi each morning at the SIM office.

    Words of encouragement for you taken from "Experiencing God's Presence" by C. Tiegreen, Jan. 11 reading
    "Be sure of this: I am with you always, even to the end of the age." Matthew 28:20
    Close your eyes (after you've finished reading this, of course). Picture Jesus sitting in front of you - His eyes looking gently into yours, His smile as encouraging and patient as you need it to be, His posture calm and unassuming. Hold this image on the screen of your mind as long as you'd like to. Then open your eyes and ask yourself, Was that an escape from reality, or an escape into it?
    That's just my imagination, you might think. It wasn't real. But consider this question: When are you closer to reality - when you're holding a picture of Jesus' presence in your mind, or when you are going about your day, forgetting that He is with you? Never mind if you got the details of His face right: that isn't the point. The point is that when you picture Him with you, You're holding onto biblical truth. And when you're bogged down in the details of life without consciously thinking of Him, you've forgotten what's true. Your sanctified 'imagination' is more in touch with reality than your preoccupied mind...
    ...Thank you, Jesus, for being with me. Help me see You more clearly, hear You more certainly, and trust You more fully - every moment of my life.

    Amy - hold onto this, as you walk the halls of the ward and cry, Jesus walks with you and cries too. He is hurting too - for Hope, and for you, Shawn and Sadie because you are his 'babies'.

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  7. I found your family's incredibly brave story some time ago. I am a friend of one of the heart buddies you have spoken of in your blog. I want to thank you Amy for sharing your story. There are many more people than you imagine that have you in our thoughts and prayers. Life as a mother can be difficult at times with healthy children, God chose you to be Hope's mother because He knew you could handle being an advocate for her. People say He will not give us more than we can bear. Don't give up!! Accept the prayers of this stranger that you find the strength you need to keep going, this darkness will pass. I am very sorry for what you have all been through, and I have thought of Hope daily lately. I wish you all the luck and love that a complete stranger can offer. Praying for you...

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  8. Just to say praying for you from Scotland sending you &n the family lots of love xxx

    Anne

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  9. And another country heard from (Scotland). I am constantly amazed at how one little girl in Calgary/Edmonton Canada can have aroused the prayers of the faithful all over the world. As always, thank you for sharing - not just the good news, but the bad as well. Sending prayers and healing thoughts from Ontario.

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  10. I don't know how you do it day in and day out. May He give you all the strength you need.

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  11. Praying for you. Your strength is admirable and your girls will no doubt be stronger for it, too.

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  12. An hour ago at supper time, my 3 year old said: "Baby Hope. Pray for Baby Hope in the hospital." She said this completely out of the blue in the middle of eating her dessert.

    Your are thought of and prayed for by people of all ages, in all parts of the world. Hang in there.

    "Endurance is not the ability to bear hard things, but the ability in bearing them to turn them into glory" (Barkley).
    You are turning all this heart ache into Glory.

    Thank you so much for sharing your story so faithfully with everyone. To go through everything you are AND blog about it consistently and well is quite amazing.

    Be kind to yourself. I hope you all get some great rest tonight.
    "And underneath are the everlasting arms."

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