Tuesday, 2 October 2012

Searching for Joy

Today was not a great day for Hope or for me.  Hope seemed to settle well last night and was doing surprisingly well after her surgery.  This morning she was agitated and was sleeping constantly.  By noon her blood pressure began to plummet and her oxygen levels continued to dip.  She is now on 16 times more oxygen than she was last night!  That sounds like a ton, but she was barely on anything when she went to sleep last night.  It will take some work to wean her off her new oxygen levels though.

Hope was moved into the ICE (step down from ICU) to be watched more closely.  She was given a lot of fluid to see if she was simply too dry.  It appears to be helping and her blood pressure has come back into a more normal range.

The hiccups with Hope are tolerable, we almost expect them and are able to stay decently calm.  The staff seem to react quickly and keep a close eye on Hope.  She has proven that she can't be trusted and can change quickly.

The most difficult thing today has been the frustration of this entire situation.  The doctors continue to remind us of Hope's fragile condition and their lack of faith that she'll live a long life.  In many ways I feel like they have already decided she will die.  With this in their minds, no one wants to be the one that tips the scales in a negative way.  As a result, Hope's heart surgery is being avoided at all costs.  We do not want Hope's surgery to be an emergency procedure that is done as a last resort.  We'd like her to receive it while her body is still decently strong and she has a stronger chance of survival.

It is so painful as a mother to feel like you have to truly fight for your child's life.  The weight of the responsibility is almost crushing and I was feeling very down today.  I'm emotionally exhausted and looking for a plan to be made.  I need to know that Hope is not being forgotten and that she is a priority here.

We want what's best for Hope and nothing less.  Being here in Edmonton is not easy on our family, yet we are willing to stay as long as we need to for Hope.  There are so many obstacles with Hope leaving the hospital and being discharged to the Ronald McDonald House or being transferred back to Calgary as we wait for the heart surgery.  Hope needs oxygen and a feeding pump, and apparently this is a very difficult thing to arrange because of "the system" that exists.  Mind-bogging to say the least.

We still have no idea what will happen next, but we are worried and would like you to pray that Hope is the focus of the decision.  We pray that what is done is best for Hope and nothing less.  Please also continue to pray for us, we need to be encouraged today.


  1. Yes, absolutely praying for encouragement for you. Also praying for healing & a miracle in Hope's body. Praying that the doctors will have wisdom and do what is best for Hope. You are an amazing mom to fight for your daughter. Parents are an essential part of the team in caring for our kids in the hospital!

  2. It does sound like the doctors are afraid to be the ones responsible if things don't go well with heart surgery, like they don't want to be blamed. Praying for encouragement for you and Shawn as you advocate for your baby girl. You have done an amazing job so far! Hope is blessed to have you for parents.

  3. My wife and I are praying and thinking you guys.

  4. Oh... I can only imagine what you are experiencing and feeling right now. How exhausted you must be and how empty and insufficient words must seem for describing your world and your feelings. Praying that God will turn this around and astound the doctors. Praying for a long, abundant life, for wholeness and healing in her body. Praying for the fluid to recede, for the hernias to heal. Praying for strong and healthy veins, heart, lungs...
    I know Psalm 23 is quoted so often... but i just keep thinking it's for you today... so here it is. He is anointing your head with oil, and Hope's. He is the restorer of your soul. Even when you can't feel it. But I pray that somehow you do.
    -Annie and family in Toronto

    Psalm 23
    A psalm of David.
    The Lord is my shepherd, I lack nothing.
    He makes me lie down in green pastures,
    he leads me beside quiet waters,
    he refreshes my soul.
    He guides me along the right paths
    for his name’s sake.
    Even though I walk
    through the darkest valley,
    I will fear no evil,
    for you are with me;
    your rod and your staff,
    they comfort me.
    You prepare a table before me
    in the presence of my enemies.
    You anoint my head with oil;
    my cup overflows.
    Surely your goodness and love will follow me
    all the days of my life,
    and I will dwell in the house of the Lord

  5. You are doing the best you can! Don't ever doubt that Amy! Your family has been there, stood by you and Shawn, has lifted Hope to our Lord, have believed in miracles that should not have taken place, yet His faithfulness is very evident.
    God is on the throne, He loves you more than you know. He is giving you wisdom, and strength, and as we continue to pray as out siders, and Christians, we beleive that God will encourage you today with someone, something, a good report, a special deliever, or just anything that would encourage you!
    He loves you, He loves Hope, Sadie, Shawn and every one that is involved in Hopes care!!!
    Stay strong, don't doubt your instincts as a Mom. You are strong, you are her advocate, and you are doing such a great job! Can't imagine being you!! Just can't imagine.
    Praying for you, God brings you all to mind a lot during the day...so I pray!
    How precious to know that He is doing all the work in the background, planning Hopes care, her life, and her future.
    She is in His Hands, and I know you already know that, but just love on her today! You are being a wonderful Mom.
    Thank you for all the updates, that you don't have to write, but you take the time to do so.
    We appreciate it, as we all feel that we are there in the room with you. Also, thank you for the pic's, it helps us to see what Hope looks like, what she is doing, and how she is being cared for.
    Praising God for Hope today! Praising Him for taking care of you, and your family. His ways are not ours, and He wants the BEST for you all!!
    with much love, and concern, but with lots of Faith in God!! Jesus Christ is there with you in the room, as well as the Holy Spirit.
    Love to all!!

  6. You have every right to be a mamma-bear, Amy!
    I will pray that you quickly find a strong advocate to fight for Hope's future - even today - that God would send someone.
    Praying for peace and rest... A quiet day. A healing day.
    In His love,
    Ps: my two girls are almost 4 and almost 2: every day they beg for pictures of "baby Hope" - and our oldest prays for her all the time.many love her without knowing her yet - but we have faith we will. :)

  7. My boys are now also praying for baby Hope.

    May the peace that transcends all understanding be your strength today (Phil 4:7).

    Michele Carr

  8. Hi Amy - So sad to hear that Hope is not doing well. We're praying bold prayers over here! I'm also remembering another family who were told the same thing about their now 8 year old son. They made sure to tell the doctors to account for the power of our GREAT GOD! God's Spirit be with you and give you all HOPE and power, power, strength, and courage as you care and advocate and fight for your little girl. I pray that God will lift you above your circumstances and give you rest. If you need anything, please don't hesitate to call or leave a message here. 780-250-9250.

  9. Praying for a miracle for Hope. Praying for incredible peace for you as decisions are made and Hope's situation unfolds before you. May God be your strength. May He be your comfort. May you truly feel Him carrying you through this tremendously difficult time. May He give you and the medical team wisdom and guidance to determine where to go from here. Praying!
    Lindsey J Bleach

  10. This verse came to my mind today...

    Psalm 71:14
    As for me, I will always have hope;
    I will praise you more and more.

    May God give you hope abundantly and encouragement to see you through the day. Blessings to you and Shawn and Sadie. Sending our prayers to you daily. Steve and JoAnne (Katie's Mom)

  11. So sorry for you all and the roller coaster ride u r on. Only the lord knows the how's and whys . Just know that there is a whole company praying for u al in Alabama. We were friends of your parents in Burlington and my husband taught your brother. I appreciate the time you take to express your thoughts and feelings too. I'm sure it is a good outlet for you also.