Tuesday, 7 May 2013

Power Down

Writing updates can be stressful some days.  Currently in life it is a huge burden.  I want to update and give people specifics to pray for and I want to make sure people don't forget about Hope.  At the same time, I don't often find the time until midnight and I'm getting 6 hours or less of sleep a night and I'm exhausted.  I'm not sure how to remedy that until we finish unpacking or Hope gets out of the hospital!

Hope is still decently stable.  Her respiration rate is high (she's breathing quickly) and the doctors are hoping this is not the start of an infection.  Please pray against infection in her body as she'd need to be taken off the transplant list until it cleared.  Today they increased the oil that is being added to Hope's feeds and she appears to be tolerating it.  She is almost at her calorie goal and we're hoping she'll start to gain weight.  This morning Hope weighed in at only 13 pounds.  She has continued to lose weight as we've been in hospital and is lighter than she was at admission, 9 months ago.

Tomorrow the doctors will increase the iron supplement that Hope is receiving and we're hoping her stomach will continue to tolerate it.  She needs the extra iron and she's done very well with it so far.  Hope's fluid balance continues to be a problem.  I think she is extremely dehydrated just by knowing what she normally looks like.  According to the amount of fluid that goes in and comes out, she's retaining a lot of fluid.  I asked the doctors to come down on her diuretics today as Hope is so thirsty and I don't care what the numbers show, Hope's body looks dry to me and she's not happy like that.  Hopefully she balanced out and will be more comfortable by morning.

Tonight we went over to the old house to sell an old hutch we had in the garage to a stranger from kijiji.  On the way out we ran into our old neighbours from across the street.  We don't know them well and they asked us what we were doing and if we'd moved and such.  We got on to talking about Hope and they told us that they have a grandchild going for heart surgery in Edmonton sometime soon as well.  The husband commented on the fact that our community has been amazing rallying around us.  He said they have noticed all the people coming by to drop things off, chip in with yard work or the many faces picking up Sadie.  I was touched to know that even without words, God was showing this man the importance of community.  It reminded me once again of how much we need those around us and how that is the only way we've made it through this last 13 months with Hope.

Rachelle is heading back to Ontario tomorrow morning and we're very sad to lose her.  It's been incredible to have an extra set of hands around here.  Shawn and I could not have done as much as we have without her help.  We keep joking that we're going to turn off the power tonight to make sure her phone doesn't wake her up in the morning!

I'm personally struggling right now with the idea of waiting for a heart.  I've mentioned before that I'm not the most patient woman.  I think waiting to find out if you child will receive a potential future, or die waiting is one of the most painful things to maintain your patience through.  We know that Hope needs to get a heart quickly, and yet I look at some of the other children waiting and wonder how long it will take to get a heart.  I hope it will be soon, but I have a feeling we're in for the long haul.  I'm not sure how much longer we can carry on without a complete burn out.  Shawn and I are extremely sleep deprived and our bodies are slowly shutting down.  Please pray for strength and for joy in the midst of these struggles.


  1. I totally understand what it is like to be sleep deprived! My biggest recommendation to you would be to observe a "sabbath" of sorts and try to schedule one day a week where you can sleep in a bit and get caught up somewhat. I have found having a sleep-in day can help me get through the rest of the week so much better!

    I pray that God grants you restful sleep tonight that will make up in quality what it lacks in quantity!

  2. My own father has been ill lately and our family relies heavily on our mother to be the strength. We have watched her become more and more frail with the added stressors. If she were to become ill too, all would collapse around us. Hope needs you, Shawn and Amy, to be well. Amy, you and Shawn continue to amaze me. Please, however, put yourself first at least one day a week. I like the idea of the 'sabbath' sleep/re-connect day. I think I'll talk to my mother about that one.Praying for the best possible outcome for HOPE.

  3. Amy, we will never forget about Hope. No matter how often you get the chance to update, she and you all are in our prayers. Praying for the strength and joy you asked for, and for complete healing. Much love to you all!

  4. Hope is always in my thoughts and prayers

  5. That is so right, we will never forget about Hope even if you do not have time to update.

    We understand that you are extremely busy and that you may not always have to time to post. That's ok. All we want is healing for all of you.

    I will continue to pray and hope for Hope no matter what and I know there are hundreds of others that will continue to do the same.

    Love your story about the neighbor, God works in the most incredible way.


  6. Take care of yourself Amy! No one would be able to ever forget Hope or stop sending you positive thoughts... it would be more terrible if you got sick too so don't worry about updating... we can wait...even if not so patiently. :) Tammy

  7. Amy you are such a trooper. I admire your strength and grace. I pray that you would feel your energy filled up in Him. One day at a time!

  8. Second the ideas of keeping a sabbath rest day and limiting your updating if that means you can get more rest. We love to read here but much higher priorities are for you to stay sane and healthy, for Sadie to feel your attention and love, for your marriage to stay strong, for you to be available to Hope etc... People will keep praying for Hope. You can update with a one-liner if you need to.

    God knows the details. People can pray simple prayers for Hope and your family without being caught up on every single thing that is going on. I say that not because we don't want to hear, but because up-to-date details are not critical to the effectiveness of a prayer.

    Take care. Hope you and Sean get some great sleep tonight.

  9. I second the commenter above posting about praying without needing to know every single detail. Your Hope is often on my mind. Especially as the son sleeping in his bed next to me was Baby Hope for so long in utero and, had he been a girl, would have been named Hope. Instead he is Nathan (gift). And a true gift he is. I think about you often and am hoping for Hope.

  10. No words, but love, hope and prayer.