Tuesday, 1 May 2012

Breaking hearts for a precious broken heart

This is Amy's mom again (Charlotte).......

The last couple of days have been disappointing and very stressful, to say the least, as Hope's status has slowly deteriorated, upon arriving back home in Calgary.  I had gone to bed last night with a heavy heart and woken many times in the night to pray for little Hope.  This morning, as Amy was getting ready, I read her a verse....."Who of you by worrying can add a single hour to his life?  Since you cannot do this very little thing, why do you worry about the rest?" (Luke 12: 25-26).  I think I was reading it to her more for my benefit than hers, as I was very unsettled and outright worried (like a true grandmother!) about what had gone on in the last couple of days.  On the way to the hospital for morning rounds, I said to Amy, trying to be an encourager...."it's' going to be a brighter day today!".......

As the day is ending, I can honestly say this has been one of the darkest days we have had.  As we were nearing the hospital, Amy's cell phone rang.  It was Shawn phoning to ask us to please come and pick him up at work as the PICU called, wanting them to come to the hospital ASAP.   When we got to the hospital, the room was filled with various doctors and nurses and medical personnel, all working on little Hope's little body.  The intensivist (intensive care doctor) and cardiologist took Amy and Shawn aside and said that they had discovered a blood clot and that Hope's lungs were failing.  She had been intubated and they were waiting for the transport team to air-lift her back to Edmonton, as Calgary is not equipped with a heart/lung bypass machine (ECMO or life support) should she require it.  Moments later, Shawn and Amy left to make the drive to Edmonton to try and get there shortly after Hope would arrive.  As it turned out, they arrived in Edmonton way ahead of Hope.  As the transport team was transferring her in the PICU, one of her I.V.'s failed and it took them 2 hours to get one placed in her head.  At around 3:30 p.m., Shawn and Amy watched as Hope was wheeled back into the PICU at the Stollery.

Within a short time of arriving, she had had echoes, x-rays, ultrasounds of her head, heart, chest and neck.      Dr. Ross was there, along with cardiologists, a thrombosis specialist, R.T's and several others.  The biggest concern was that the Edmonton team had been told by the Calgary doctors that Hope's blood clot was in her SVC (superior vena cava).  Hope's second surgery (the Glenn) will need to be done at 4-6 months of age and should there be any kind of a blockage/blood clot in that vessel, Hope would not be a candidate for that surgery.  Her only hope, at that point, would be a heart transplant.  The best news all day was that the blood clot was not in the superior vena cava - it was actually in her innominate vein.  After much discussion, it was decided that surgery was not an option - since Hope was only 13 days post surgery and the risk for bleeding was much too high, and the course of treatment would be continuous Heparin to stop the clot from getting bigger, or any others forming.  If that is unsuccessful, the only option would be some very powerful drugs that carry very big risks along with them.  Her heart rate and blood pressure is very low and the first priority is to get her stabilized and take some pressure off her lungs.  They continue to suspect an infection, even though her cultures have come back negative and so they will continue aggressively treating it with antibiotics.  The doctors cautioned that Hope was in a critical state and that her condition was going to be closely monitored as they waited to see how her little body would respond in the next while.  Shawn and Amy decided to stay in the "family room" at the hospital so they could be close by through the night and I am staying at a hotel, since the Ronald McDonald House was full.

We are all totally exhausted and are still in a bit of shock that we are back here in Edmonton.  This is not how it's supposed to go!  Seeing little Hope back on the respirator and looking so puffy and pale is heart breaking.  They paralyzed her body and sedated her for transport and seeing her laying so still was almost more than I could take.  We are thankful for the fact that Hope's clot is not in the SVC and are just asking God to help her lungs recover from the fluid and extra strain, heal her of this infection, keep her I.V's stable, give her good levels/blood gases/vitals and dissolve the clot so that there would be no need for any additional intervention (i.e., the more potent/risky drugs).  It's a lot to ask but our GOD IS ABLE and we are humbly asking Him to miraculously intervene and do a powerful work, for His glory alone.

We know that so many of you are praying and we will never be able to thank you enough.  Collectively, you are surrounding Hope with God's goodness, His love, His protection and His strength and we covet every single word uttered to Him on her behalf.

Please continue praying for this precious little life.  We have only known her for 27 days and yet we can't imagine life without her!


  1. Oh gosh, I am so sorry. This road is so tough and the roller coaster seems never ending when you're post-Norwood. Praying for you all, for strength for Hope's little body, for patience and peace for you all as you wait for her body to heal. Big heart hugs...

    Amy & Bodie

  2. Many love and prayers coming your way from Arizona. My daughter, Zoe, had a rough go with narrowing of the innominate artery post-Norwood and clotting of an artery. It certainly is a rollercoaster and I'll hope and pray that your little HOPE pulls through like my Zoe did. Zoe underwent tpa therapy (which is what you might be referring to above) to assist in breaking up the clot. The innominate artery didn't clot, but had a kink in it and needed stenting. Has Hope had an echo recently or a cath to assess her BT/aorta/PAs to see if something is going on that cannot be visualized easily with an echo?

    Please don't hesitate to reach out with questions or just want someone who has "been there." stacey@sisters-by-heart.org.

    Heart hugs, and lots of them.

  3. I've said it before and I'll say it again: it is our absolute privilege to pray for Hope. That is what we are called to do as the Body of Christ. When we can do nothing else...we can pray! And if Shawn and Amy find themselves in a place, whether emotionally or mentally or spiritually or whatever, where they cannot pray, they can be rest assured that others are. Our prayers will carry them through those darkest of days.
    And the prayer warrior count continues to grow, I'm sure! I pass on the request to anyone I meet during my days who I know will pray. You guys are so loved!!

  4. My heart was so heavy yesterday for HOPE I really felt nauseated. IT was just so weird, BUT I prayed for her most of the day. God is God! HE is our HOPE, our refuge in times like this. How we need Him, every hr of everyday, and how HE loves to hear us pray for things!
    As we all pray for this precious little girl, may HIS presence, love, and PEACE fill you all, and may you KNOW THAT HE IS THERE with you!
    He is watcing, and caring for your little one. We are all praying for her, for you all, and for the nurses, and DR's.
    They need God's wisdom, and power! Holy Spirit come, and fill this room with your presence, and surround them all with your angels to keep Hope alive, and bring her back to good health. No more set backs, no more disappointments, no more discouragement, and no more helplessness. We ask that You will just take over in this situation, and do the miraculous! We pray in the Mighty name of Jesus Christ!!
    Hugs from a very concerned yet confident sister in Christ!

  5. Fervently praying for little Hope and for all of you as you travel this difficult road. Trust in the Lord and lean on Him! He will give you the strength and peace you need!

    ((Heart hugs!))

  6. Keeping your family in our thoughts and prayers <3

  7. Keep feeding your faith and your fears will starve to death.
    Praying every day for Hope's healing and recovery.

  8. Holy, Holy, Holy is the Lord God ALMIGHTY. I'm sitting here crying, as my heart is aching for all of you. I'm listening to 'Bring the Rain'. And I'm reminded that our Lord God is ALMIGHTY. All powerful, all knowing, all capable. My prayers are with you all. May He do wonders today, and in the days to come, all for His glory. Hope - you are so loved, and you are touching so many, before they even know you. Amy, Shawn, and Charlotte - keep on going on, Hope knows that you love her, and you have the most amazing Father looking after you. May He hold you all close today.

  9. My kids woke me up in the middle of the night. I couldn't go back to sleep until I prayed for Hope. And then a few more times I woke up knowing I just needed to pray for her. There is not an hour that goes by that she is not on my mind and in my prayers. Praying for all of you as well. I have never gone through anything quite like this, but I did have a baby in the NICU, so I at least understand the separation and the longing for normal, so I'm praying for comfort for all of YOU as well.

  10. We are standing with you in prayer, holding you up and believing with confidence that Hope will come through this and heal. God is GOOD. He performs miracles. And He Loves Hope. We speak life and wholeness over her body, and pray healing and stability. Come, Lord Jesus! Pray you're able to rest. Annie, Paul and Miles

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