Wednesday, 24 October 2012

No End to Bad News!

I wonder if there are days that people read the blog and imagine it is all make believe.  How could such a little girl go through so much drama in 6 short months.  Sometimes I dread writing the latest news as it makes it more of a reality to me.  I am forced to remember that this sad story is not from another family, it's our sweet Hope.  Today is another one of those days, one that I wish was filled with more good news and optimism.  

Hope made the move up to ICE (the step-down unit from PICU) around 4pm yesterday.  I was incredibly exhausted from the long, stressful days in PICU and only stayed with her through the transfer.  I left the hospital around 5:30 to get home for dinner and a much needed relaxing evening.  

This morning I arrived at 8am and found Hope asleep in her crib.  They told me she'd done well through the night and seemed to be tolerating her feeds.  When she woke up we measured her tummy, 48cm.  I asked the nurse to check her NJ tube to be sure her food was not pooling in her intestines.  Sure enough, her NJ tube has not been the solution as her intestines were FULL of feed and her food was stopped once again.

Rounds began shortly after and they began discussing the next steps for Hope.  If we're not able to feed her, she needs nutrients through Lipids and TPN (these are liquid nutrients that were given when Hope was born and include everything her body needs, but run through the veins and not the digestive system.  These are usually run through a central line or PICC line.  Unfortunately, this is not an option for Hope.  They've decided to run these through the IV in Hope's foot.  This is extremely dangerous and will keep her in the ICE for the next few days for sure.  If the IV is lost (which happens VERY often with Hope) and the concoction continues to run, it will cause terrible burns to Hope's skin.  Just writing that makes me cry as I'm fairly certain it will happen.  They will watch the IV as closely as possible, but we've seen human error is a reality of life in the hospital.  Please pray that the IV is not lost and her skin is not burned.

They believe Hope has NEC (Necrotizing Enterocolitis), it is an infection and inflammation that can cause the destruction of the bowel.  If they continue to feed Hope while her bowel is clearly striking against it, it could cause permanent damage to her bowel and result in her death.  She is now going to need to receive the IV nutrients for at least 5 days of fasting.  She will also continue on her antibiotics to attack this infection.  They feel that this is in correlation with her liver issues and the clotting there.  They are not 100% sure that this is truly what is causing Hope's bowel issues, but are going to treat it in hopes that it will work.  

I was told this morning that Hope is simply too fragile and will not be discharged before surgery.  She is not allowed to go on passes and will be here until November 7th.  Two weeks today she is scheduled to go in for her Glenn.  Please pray that she is not bumped continually and that her surgery will happen on time so we can at least get back to Calgary.  Once she's had the heart surgery and is stable, we'd be transferred to the Children's Hospital in Calgary.

After speaking with the liver doctor about Hope's MRI from last week, they've confirmed that her liver issues will take a VERY long time to resolve and will not be any better if they delay surgery.  This is a comfort for us to know as we wondered if waiting was safer with Hope.  We now have our answer and can move forward in confidence.  The images from Hope's MRI showed that the clotting issues with the liver are worse than they originally suspected.  They told me this at rounds this morning.  

It's starting to look like the Glenn may not be the life changer we had hoped for.  This may be our life with Hope for a long time.  I can't even allow myself to imagine it, the thought is simply too painful.  I'm overwhelmed today and longing to run out of the hospital and escape this reality.  Hope needs your prayers desperately, and so do we.  Today I wonder where our miracle is, and if it's ever coming.


  1. I am so sorry for your pain! Can't imagine, can't fathem how you feel.
    I get exhausted reading your blog, and thinking of how completely fatgued you and Shawn are!
    Prayer is the only thing that I can offer you. Praying for all of the above. I think you mentioned that your Mom was coming back, so having her there with you, will be comforting for you at least!
    Mom's help us to look at things differently, and also give us some extra strenght when we feel like there is none. They also remind us that God is our refuge in times like this.
    I sure pray that God will hold Hope in His hand, and protect her from all the "things" that can go wrong.
    Trying to just think of all the things that God has brought her through, and knowing that He is in control of her little life!
    Praying for your miracle!
    with love!

  2. Amy - we're crying with you. Praying and asking The Lord for healing and strength.

  3. Dear Father

    I'm borrowing from your loved child David who wrote in this psalm many of the following words. I'm plugging in the names of Hope and her family - we are fervently asking you to change this nightmare to a time of peace, comfort and joy. We are fervently praying for you to give Hope a full and healthy which will allow her to know you as her Saviour when the time is right and for her to serve you with joy as her family already does. We are fervently praying for you to relieve Amy's desperate desire to escape some of the scariness of their situation. Father, please...just be with them for they love you so...and have honoured your Name over and over again, especially in the last several months. God, give them peace!!!

    Amy is lifting up her eyes to the hills.
    From where does her help come?
    2 Her help comes from the Lord,
    who made heaven and earth.

    3 He will not the Koslowskis feet be moved;
    he who keeps them will not slumber.
    4 Behold, he who keeps Israel
    will neither slumber nor sleep.

    5 The Lord is Hope's keeper;
    the Lord is her shade on her right hand.
    6 The sun shall not strike Hope, or her parents or her grandparents by day,nor the moon by night.

    7 The Lord will keep Hope from all evil;
    he will keep her life.
    8 The Lord will keep
    her going out and her coming in
    from this time forth and forevermore

  4. I'm at a loss - there aren't any right words here, only honest ones. My heart is so heavy for you all right now. Yet I know that in this painful - and long - valley, God is with you. He weeps with you and holds you. He created and He sustains Hope and all of you... and He is still the God who performs miracles. He is at work even now - and we continue in prayer for your sweet Hope and for all of you. If you're up for it, we found worship music from the International House of Prayer in Kansas to be really uplifting when in hospital... felt it helped changed tge atmosphere around us. I can send you some by mail or you can stream it from their website if you like... just a thought. Sending you prayer and love from Toronto.

  5. There are no words to describe the pain, confusion, and disappointment you all are facing right now. I just wanted to share a few lines from a psalm: "God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its water roar and foam, though the mountains tremble at its swelling." Ps. 46. It may seem like God is distant, it may seem like He isn't doing much to help. But despite those feelings, we know and are assured that our God is a very present help in times of troubles. Our God is in control, He holds those little sparrows close to His heart, and He also holds little Hope tenderly in His hands because she is His precious child. Praying for you all, that you will call on Him, lean on Him, cry on His shoulder, and continue to fight for little Hope. I'll also be praying for her recovery and that things will start to go uphill for her.

  6. Wow Amy...that is alot of bad news but she has surprised us before so we just need to keep praying that she will be touched by God's healing hand. Praying for you and your family through this tough time and praying for precious little Hope along with the many doctors and nurses that are involved in her care. Praying for protction, sleep for you and Sean and an overwhelming sense of peace and God's presence in this situation. Take care :)

  7. Amy: I am so sorry to hear about such serious difficulties for sweet little Hope. A friend just sent me these verses. Hope they will comfort you as well. Psalm 91:1,2,4. "He who dwelleth in the secret place of the Most High shall abide under the shadow of the Almighty. I will say of the LORD, He is my refuge and my fortress, my God; in him will I trust. He shall cover thee with his feathers, and under his wings shalt thou trust; his truth shall be thy shield and buckler." Take refuge in Him, Amy, and rest under his wings. I am praying for you and Shawn as well as your precious Hope.