Sunday, 27 January 2013

50% Good and 50% Bad

Today was split, the morning was not very good, and the afternoon was not very bad.  Hope's PICC line continued to leak and was no longer useable at all.  They had to pull the line and in doing so, found that it was no longer even in her vein.  After the line was pulled, her leg was found to be leathery and firm.  Please pray that this fluid would quickly leave her body and not cause any damage.  The cardiologist, who also does heart caths and is great with IV's, tried to get an IV on Hope 6 times.  None of them were successful and Hope fell asleep in exhaustion when they finally gave up.

At noon an anesthetist was brought in to attempt an IV.  He managed to get one in Hope's right arm on his second attempt.  They began running fluids for a couple of hours and then started her IV antibiotics.  After a mere 3 hours, it was clear that the IV was failing and the line was pulled.  We are now without access to Hope's body and we know that access if extremely difficult to find.

However, the afternoon was amazing.  For the first time since we arrived in Edmonton, Hope was settled.  She has only been happy while sleeping for the last two weeks.  It makes me wonder if the PICC line was causing her pain and making her uncomfortable.  I am praying she will not have any lines put it and that they wouldn't be necessary.  She seems to be so much happier without something sticking out of her body!

It takes 48 hours for the blood cultures to truly come back negative.  They are given that long to grow bacteria.  Hope will reach the 48 hour mark at 6 am tomorrow morning.  If her cultures are negative, we will not need line access and can leave the poor girl alone.  Our other problem is feeding.  At this point, Hope is receiving only 8 mls an hour of feed into her stomach.  She needs to receive 24 mls an hour in order to avoid the use of TPN.  We are moving her up slowly, please pray that we have success in her feeds.  This would be the first time Hope has tolerated full feeds since August, we need a miracle!

If Hope can tolerate her feeds, we can bring her home to await her next heart surgery.  If we cannot get her to feed, the heart surgery is a must at this point as she won't grow in the hospital.  Please pray for the doctors as they make decisions about Hope this week.  Please also pray against infection and the need for antibiotics.

I don't know how long I can handle our family being in two cities.  As I loaded Sadie into the car with Shawn this evening, she said, "I don't want to go home without you.  Why can't you come?"  I explained that I needed to be here for baby Hope and she said, "but baby Hope isn't even at home with you here!"  I cried as Shawn and Sadie pulled out of the driveway and started the drive back to Calgary for another week apart from Hope and I.  I would love to make the drive back to Calgary this week with Hope in my backseat!


  1. Thank-you for the update. I continue to keep your family in my prayers and pray at random times, multiple times during the day. I've learned from Hope that prayer does heal and there is power in it. I have faith that you will be taking Hope home in your backseat soon.

  2. I'm so sorry you're away from your sweet girl Sadie and from Shawn... I can only imagine how hard that is. May you find peace while you wait... may Peace find you, actually. Praying for Hope's feeds and for you both to head back home SOON. Also just praying all the time for healing and for good good news. Hang in there, mama. You are a warrior and an inspiration. However it feels, this is a season. And one day you will all be on the other side of it, in awe of what you endured and how God brought you all through. Praying for renewed strength for you, and praying that you give yourself all the grace you need.

  3. Hi Amy. I saw your blog through a friend..good thing for technology such as this where people from all over the world can join in prayer with you. Thank you for sharing your journey with us. I pray that God will renew your strength and heal baby Hope. Amy with all the antibiotics Hope has been taking have you thought of giving her some probiotics? I ask this because my daughter could not hold her feed. I gave my daughter probiotics and it made a big difference...think about it ...check with the Doctors. I know that Hopes condition is so complicated, but I can only pray that it could be something simple.

  4. In church yesterday our pastor was talking about enduance. The Lord has given you such endurance and I pray He continues to. The Lord bless you in this journey and continue to give you strength and wisdom!!

  5. Tears and prayers from Ontario.

  6. Amy...I read your blog through Kayla and Megan's FB page. I have been praying for you that you will keep strong. You are an amazing women of God. Keep strong. I am praying for strength for you today.


  7. Wow...just so much going on everyday of every hour!! The rollercoaster just never seems to end, and yet your heart attitude remains the same.
    Your Trust in your Heavenly Father is very evident, and your love for your family is so strong. Someday when you look back at all of this, you will truly know the feeling of totally surrendering on Christ alone.
    You are there right now, surrendered to Him, you are His child, you are loved by Him, and only He knows how much you can take.
    I am sure that you are surprised at the trials, tests, and endurance that you have gone through with Him by your side.
    He is your strength, and you have allowed Him to be. For that alone, it is a testimony and witness of your love for your Savour.
    May God heal this family, may God bless you, as you take care of your sick little Sadie, and continue to fight for her. She has needed you there, as there has been so many times that you have stepped in, and taken care of mistakes, and talked with Dr's about her reactions to things.

    May God continue to give you wisdom to know what to do, to be strong for your family and be the wife, mother to Sadie, and Hope that you need to be. We will continue to pray for you, and always remember you each day.
    May God bless you, and continue to keep you in His Hands!

  8. Hello,

    In the physical all this is really overwelming.

    After reading this the scripture that comes to me is - Mat 8:17 - This was to fulfill what was spoken through the prophet Isaiah: "He (Jesus) took up our infirmities and carried our diseases." I want you to remember and meditate on this for Faith is the substance of what we hope for, the evidence of what is not seen. Have faith and stay strong.
    Our prayers are with you all.

  9. Praying with you for a miracle. Our God is more than able! So glad you have your momma here with you...

  10. Amy -
    Every time I think of precious baby Hope and your family I burst out in song "our God is greater, our God is stronger, God you are higher than any other. Our God is healer, awesome in power, Our God." Praying and believing for the miracle in Hope's body and a renewed strength in you and your husband.

  11. There is nothing I can say that would ease your journey through this valley. My sincerest prayers are with you!