Wednesday 2 May 2012

Bad days can get worse...

As my mom wrote yesterday, things have been stressful to say the least.  Shawn and I slept at the hospital last night in one of the parent rooms.  They must make these rooms intentionally uncomfortable to keep you from wanting to move in!   Sleep was limited, but were thrilled that Hope stabilized a bit more through the night and we didn't have another close call.

We are blessed that our little one is still with us, but we have a long way to go.  This afternoon, an echo was done that showed that the blood flow in Hope's Superior Vena Cena is not great.  They can't see an actual clot there, at this point, but are sure that something is obstructing the flow.  The obstruction may be outside the vessel, but they aren't sure what it is at this point.  The echo will be done again in the morning. If it looks like the flow is still not as it should be, they will order a CT scan.  They are hoping not to have to do a CT scan on Hope as the radiation is high and pretty intense for her little body.

One of our major dilemmas right now is Hope's IV lines.  The IV in her head collapsed this afternoon and we are down to only one line in her hand.  This line is looking red and likely won't last too much longer.  They are talking about putting in another central line.  This is a very unsettling idea for Shawn and me. What if she clots again and we aren't as fortunate this time?  Both central lines she's had have caused an infection, why wouldn't this one?  We feel very uncomfortable with another central line going in and wish we had a better option.  They are going to try again to put in a PICC line.   It is still a form of central line but is a bit lower risk for infection and clotting.  Please pray that her IV's will stop failing and that her body will not get an infection, or even worse, another clot.  This entire line situation has brought me to tears many times and feels overwhelming as a parent, there doesn't seem to be a good option.

How are we doing?  We're not doing well.  Shawn is so frustrated about being back in Edmonton after tasting the comfort of home for a mere 72 hours.  I am emotionally numb and feeling beat up by all the bad news and set backs.  We're torn between our two kids, as Sadie is still in Calgary.  We miss her like crazy, but aren't sure how to balance having her here and being available for Hope.  My mom is going to need a heart transplant herself if we go through too many more close calls.  We really need a better day tomorrow.  Please pray for some improvement in Hope's condition.  They are talking about the possibility of extubation as they don't feel it's safe to keep Hope extubated because of the sedation that is required.  Hope responds poorly to the sedation and that puts her at risk for a lot of other problems.  I'm nervous about the tube coming out, but also looking forward to Hope being more comfortable.

We're praying our stay in Edmonton is short, but also nervous to return too early and return a third time.  Being in a hotel is good and bad.  We do have a higher level of privacy, but you can't beat the rate at the RMH!  We're on the waiting list at RMH and are hoping we can get a room before too long.  Thank you for praying for us, I honestly feel unable to pray for myself right now and appreciate you all carrying that on our behalf.

22 comments:

  1. Hang in there guys. We're praying for you. Christ is present with you in all of this. He feels your pain, your frustration and everything in between. Keep trusting!

    Jason & the rest of the CSC Youth Ministries community.

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  2. Praying for you amy!!! So many people are too!! Your so strong!!!

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  3. Tamara Greenway2 May 2012 at 21:13

    Let us be the ones praying for you when you can't anymore...

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  4. I know you are tired and exhausted and beyond your breaking point, but when I read your posts, I begin to believe you must be the strongest woman ( and your husband the strongest man) on the planet. Hope is so lucky to have both of you as parents. For all that she has had to endure, at least she is surrounded by people who love her with all their hearts. My family and I continue to pray that Hope will make some big steps in the right direction and that God will give you the strength to keep walking this journey with her.

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  5. Proverbs 3:5-6 Trust in the Lord with all your heart, and lean not on your own understanding. in all your ways acknoledge Him and HE will direct you path!
    Trusting at time like this is so hard.......praying for God's blessing on your lives, and your daughters. Praying continuously for this little angel to be healthy!!!

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  6. We are holding you up and praying for all of you! I'm so sorry these days are so hard... You are not alone. Sending love and fierce mama-bear prayers for your sweet and strong girl and for you. - Annie Paul and Miles in Toronto

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  7. Eric Marzinke2 May 2012 at 22:14

    Amy,
    Karen and I are praying for you and Shawn and Hope. We pray that the new line takes hold, and that the days ahead are better for you both. We love you guys and our prayers are with you.

    Eric & Karen in Cary, IL

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  8. Oh my goodness Amy, Shawn, Charlotte and Sadie. Your faith is so strong and with everyone else's prayers the days will get better. These little angels are truly supported in our prayers.

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  9. Hoping and praying for a better day tomorrow. When there are no words to say there are still groans and sighs, and God hears each one.

    Anno (in Edson, ab)

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  10. The Lord is close to those who are brokenhearted and saves those who are crushed in spirit. - Psalm 34:18

    ...Praying!

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  11. We just prayed for Hope and you guys in our growth group! We are all still fighting and here to uplift you in this hard season. We can see the power of prayer and we will not stop praying until she is healed! God is so good and pray that God's presence would flood Hope's room and bring a peace that surpasses all understanding. I can't imagine what you are going through, but we will keep walking alongside of you!

    Love, YWAM Maui family

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  12. Praying and praying. You guys and your wee girl are on heavy on my heart. I lift you all daily in prayer to the Lord.

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  13. Thinking of the song "Someone is praying for you"....when you feel you can't go on, and there is nother else to do, remember Someone is praying for you"
    It is an old song, but a reminder that there are a lot of people who care, and are praying for a miracle in Hopes body! She needs to feel loved, and also God's protection on her life!
    Praying for God to do the Miraculous!!

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  14. beyond my prayers for Hope, which are frequent & fervent, I pray for supernatural stamina for you and Shawn. I pray for God to protect each of you from the normal insecurities and misunderstandings that can happen even when all is well, but which can hurt so much when you are all wrapped up in concern for your precious child. Remember that your love for each other came first and will last and remember to comfort each other as you wait on God! I hardly know you, but I love you. Isn't that just like our Lord to draw believers together even over thousands of miles! Hang in there Amy - it will be alright!

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  15. I know I do not know you or your precious little girl Hope. But, I am praying for you and know that God will give you and your family the strength for everything that He already knows is in your next steps! Romans8:26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. 27 And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.

    28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

    "'For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future.'" (Jeremiah 29:11)

    We will continue to pray!

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  16. I am from a ladies bible study group in Waterdown, Ontario, and we are all praying hard for you!

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  17. "I have told you these things so that in Me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33

    Praying this over you today.

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  18. Hello,
    I am a friend of Darcie Smith's. My daughter Addison FAITH has HLHS. She is now 2 and full of life, however it was a long journey. We did not leave the hospital at all until she was nearly 2 months old. Hope is in our prayers as is your whole family. I know how hard it is to watch and hope your baby's body will respond and do what the doctors want it to only to see it do the opposite. God has been so mighty in our lives... so present and so powerful! We will be going to His throne throughout the days ahead asking that He pour out His comfort on you and to be extraordinarily generous as He heals HOPE!
    God Bless,
    Amber Cameron

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  19. Thinking of you and your family several times a day - and praying every chance I get. Stay strong...

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  20. I have been following your story through Sheena MacKay's facebook page. My heart breaks for what your little one and your family are going through. I just wanted to let you know I've been praying for you and thinking about you daily. I can't even imagine the emotions you must be feeling right now. May you feel God's loving arms around you lifting you up. May you feel renewed and refreshed in the days ahead. I especially hope Hope has a better day tomorrow and that your entire family can begin to heal.
    Sincerely,
    Wendy Rae

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  21. So many tears fall for you guys in one day. We got you covered in prayer and even Brison and Makana pray for Hope and Sadie.I was praying that Sadie wouldn't be sad that she can't be with her parents all the time and Brison interrupted me and said " Sadie would understand why she can't be at the hospital with her parents because they need to take care of Hope- the whole family has to help and that is how she can help." I thought it was amazing how much kids can understand and put on themselves. Thanks for your honesty in your blogs, it makes it easier for us to pray specifically. Hold on guys and when you feel you can't let the prayers of others carry you.....

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  22. We're keeping you in our prayers. Our hearts go out to you at this time.

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