Saturday, 24 November 2012

Poo is Brown!!

I'm sure you don't often share publicly about your poo.  When your child has been passing large amounts of blood for days, it is worth celebrating a brown poo.  Praise the Lord, Hope's poo is now brown and the bleed appears to be under control once again. Shawn's jeans will need a trip to the washing machine as well!

Today has started out much better than yesterday.  We continue to be faced with the reality that Hope's life is hanging on a thread, and she is in critical condition.  Unlike yesterday, the doctor working with her in the PICU, is passionate about trying to save her.  It's a breath of fresh air to work with a much kinder Intensivist.

A large team of doctors spent over an hour discussing Hope's multiple complications.  We now have a plan for today and are ready to walk through it.  Hope continues to be extremely uncomfortable.  She is now on a new sedative and pain medication.  We're hoping this will make the difference and settle her to sleep more often.  Shawn and I find ourselves easily drained by the constant fussiness that appears to be impossible to settle.  Hope is currently sleeping in her crib, her heart rate is back down and her breathing more controlled.  Praise the Lord for the moments of peace that she experiences throughout the day.

We were informed today that intubating Hope would likely put her in more critical condition.  Once she is intubated (if needed), the blood flow to the lungs would decrease and she would only survive for a couple of days.  Knowing this, we are watching her oxygen levels more closely and begging God to keep her breathing stable.  If she needed to be intubated, she would also likely need to return to Edmonton.  This would be a precaution in case she needed to go on the heart and lung bypass machine.  We are thankful not at this point.

Our cardiologist this week has been a true gift.  She is honest, not trying to keep information from us just because it is difficult to hear.  She is passionate about seeing Hope survive, no matter what the odds are against her.  The medical team makes a huge difference each day for us.  We are either blessed with doctors and nurses that fight for our girl, or others that seem to have already given up on her.  The ones that have given up tend to see more of my angry side.

Last night as Shawn and I lay in bed, we talked about miracles.  We spent time dreaming about how it would feel to walk in one day and find that Hope had a whole heart.  How would anyone be able to explain that medically?  Hope's surgeon has held her broken heart in his hands, there is no denying that it was only half there.  If suddenly her heart was whole, only God could receive the glory for such a miracle.  I can only dream and hope for a miracle so beautiful.

We are aware that our daughter's life span is not long.  We realize that our days with her are precious and need to be cherished.  For that reason, we pray that she quickly stabilizes enough to come home.  Whether we are given years or months with Hope, we desire to create positive memories as a family.  That is more likely to happen with us all living together in our home.  We pray that it is not only possible, but that it will happen soon.

I feel completely exhausted.  I find moments of joy throughout the day when Hope is settled in my arms or Sadie is giggling on my lap.  Life is not always full of sorrow and tears, but it is exhausting just the same.  I dread the fact that Christmas is quickly approaching, it will only make being away from family more painful.  We need your prayers as our strength is 100% from the Lord and not our own.  We do not have any strength of our own remaining.


  1. Amy, Shawn, Sadie and Hope. Your entire family has been in my every thought and prayer lately. We do not personally know each other but your story has touched my family deeply.
    I am so happy to hear that Hopes bleeding has stopped and her poo is brown! I am also elated to hear that you have wonderful doctors that are willing to fight tooth and nail for your beautiful daughter. I will continue to think and pray for your family and I will be eagerly watching for update. Take care

  2. yay for brown poo! we celebrate these victories with you :)!!! and continuing in prayer for all of you. for long abundant life for Hope for peace and rest for all of you and a special grace over Sadie through it all. May the coming days bring good news and improvements! also still praying for that whole heart! with hope and deep expectancy for what God will do - annie in toronto

  3. Praising God for Brown Poo!!! That is a true Praise!!
    Yes...we Praise God in the Big things, and YES the small....but o so necessary!!! How awesome to think that this has happened and you can relax a bit!
    I have no idea what your life is like, sometimes as I read, I think, wow, if I were there, I would sure see the bigger pic of all of this.
    Sometimes when we see you guys in a pic with smiles, and family photo's it is a reminder that you are there, and happy! BUT in saying that, we tend to forget the heaviness of what you are going through as a family, esp. when faced with Dr's outside of your room talking about your little angel.
    I can't imagine what each day holds, I know that you truly understand that God holds all of our tomorrows in His hands. this, and am overwhelmed for you all. So happy that today you have a passionate Dr that truely cares about your little girl, and wants to do what ever she can to help her.
    That is a huge Praise!
    Today as I think of you, pray for you, I will thank God for your words of wisdom, in the fact that no matter what, you are grateful for what God is doing, and yes Praising God that Hope has brown Poo is truly a praise!
    Praying strong, and take courage, do not fear nor be dismayed, for the Lord your God is with you, and He will lights you way.
    God Bless you all! Praying for 100% strength for you and Shawn!!!

  4. Keep trying to follow what is happening out there. Concerns for Hope have taken on a life of their own in my personal thoughts and prayers. How precious life really is becomes clearer when I read your blog. Thank you for sharing with all of us who don't really know you but are connected through 'Hope'. Sending all our strongest healing vibes from Ontario.

  5. Praise the Lord for brown poo and moments of peace for Hope! Continuing to pray for healing for Hope and strength for you.

  6. Thank you Lord for this reprieve...even though small, for Amy and Shawn it is so needed. I ask you humbly for more like this...
    for more brown poo :)
    for more quiet sleeps
    for more oxygen to Hope's heart, lungs and other
    vital organs
    for more prayers from Your people
    for more miracles, or one BIG miracle!!

  7. Wow! I have been following your story for some time now, and I never cease to be amazed and encouraged by the work the Lord is doing in little Hope's life. He clearly has a plan for her life that is far greater than anything we can imagine. I pray that you all would cling to the hope that we have in Him and that He would continue doing miracles in Hope's life. Never give up on Him, as nothing is impossible with the Lord.

    Much love and many prayers from Delaware, USA...

  8. You have been very much in my thoughts and prayers tonight. God is good and He loves you and Hope very much. Love, Rosalind (Scotland)

  9. Praise God for the steps he has taken to heal Hope so far. Brown poo is a good thing. We have never met, but have followed your journey through this blog. "Where 2 or 3 are gathered in my name, I will be there also. May God and His Holy spirit continue to comfort you all. May Hope experience a miracle of a complete and full heart. You have been an inspiration to folks reading the Blog. I feel your pain, as does God. Will continue to pray for you all. May God continue to give you comfort. . . and peace.

    From Winnipeg

  10. Praise God for such things like brown poo, not many people would say that that is such a wonderful sight, but I thank God for that miracle. Continuing to pray your little Hope, doctors, nurses, Sadie, you and Shawn. Praying you feel God's loving arms around you and for continued joyous moments even through the exhaustion. May tomorrow bring more strength for you.

  11. Amy, you are a beautiful person, your continued faith inspiring, and the excitement and relief you feel over something like brown poo is something many many parents can relate to! I've been praying and hoping and asking and crying, with thoughts of Hope filling every spare moment. God sees the beauty and the preciousness of your little warrior, that is certain! I am so very happy to hear that your medical team this weekend is much more positive, and willing to fight for Hope. Despite the news given, keep faith - your beautiful baby girl has made it through the first two surgeries, even though she "wasn't a candidate." With the third surgery being quite a while in the future, to rule out that she isn't a candidate now is a very narrow focus. We do not know the mysteries of God's work, the miracles to come, or the medical advancements that may present themselves. I continue to pray for Hope, you, Shawn and Sadie. I pray for God to provide wisdom, strength, and passion to Hope's medical team. Despite the odds, Hope has incredibly strong parents, and I know that she is going to do a lot of growing in the near future!

  12. I have never met you but your blog and journey have truly touched my heart. My thoughts and prayers are with you and your family. I pray for you all to be surrounded by Gods love and light; and many angels to guide you along the way. Hope is blessed to have you as her Mommy and to be so loved and cherished by her entire family. I'm sending positive thoughts your way and truly admire your strength, perseverance and love for your beautiful daughter.
    Take care & God bless you all.

  13. I pray every time you come to my mind. And that is often. And I agree - yeah for brown poo!!!!

  14. Hi Amy, This is Laura from YWAM years back. I've been hearing about Hope through many mutual facebook friends, and I want you to know that I am and have been praying for you and Hope and your family. Thanks for your honesty in your posts. You are an inspiration to me.

  15. Praying for your precious family and for Hope to be able to come home. Praise God for your love and faithfulness through this to glorify God.

  16. Hi Amy,we have been praying for little Hope for months at our Ladies Bible study, Compass Point Burlington for months, your family is in our hearts and prayers. Over the last few days I have been reading your blogs, starting at the beginning and am truly amazing at your journey and all that you have gone through so far and survived. God's hand is certainly on your family, lifting you up and giving you the strength for another day. Hope has gone through so much and is still fighting, what a trooper she is, so brave and strong, there is no answer why she was born with this defect, but her life is a testimony as to how God will work miracles to those who believe in him. She is truly an angel and a miracle, what a beautiful baby girl and through her journey she has touched many lives, including mine. God bless you and your family.

  17. I want to thank you for trusting us enough to share your family's story. You have a beautiful family and baby girl. You all are a testament to the power of love, hope and faith. Your ability to trust in God regardless of what you have seen or been told is inspiring. It is also what will help carry you through on this journey. I admire you so and although I don't know you I wish that I could hug you and stand and pray with you. I am believing God because nothing is impossible with Him. I am asking Him to comfort you and to give you strength. I am asking that He surround you with so much love and pray that you don't lose faith and are able to stand on His word. In your story of brown poo it is evident that He is there. You all have now left an imprint in my heart and my prayers will now hold you and your family in them. I will pray for your sweet angel Hope, already such a bright light in this world. Be blessed.

  18. I came to check if there was an update today... hoping that no news is good news... sending many good thoughts your way...

  19. Praising Him for brown poo! Thank you Lord! I continue to pray for a miracle, for His amazing peace to surround you, for strength for you and Shawn, for wisdom for Hope's doctors, for rest and peaceful nights, for perfect O2 levels for moments of joy.