Monday, 15 October 2012

Patience, where art thou??

I believe that sleep and patience go hand in hand.  If you have one, you have them both.  If you're missing one, you lose them both.  After taking Hope out on a pass, we came back to the hospital around 9 pm.  She had been fairly good all day and seemed to be herself.  As soon as they started running her feed, she began screaming and was miserable.  When the nurse checked her stomach contents, they found her last two feeds sitting in there, undigested.

Once the food was taken off, she seemed a lot more comfortable and began to settle.  The doctor decided she needed to be fed through the night regardless.  She stirred and woke up constantly through the night.  She was so uncomfortable and couldn't seem to get into a deep sleep.

This morning the nurse pulled a full undigested feed from her tummy and decided to stop feeding her.  The doctor on this morning agreed that it wasn't helping her to keep pushing food in.  She's now on a full diet of pedialite.  This is not great for her weight gain, but will give her tummy some time to heal and get better.  She's been having some much needed naps today and appears to be happier without her feeds going in.  They feel that her cold has gone down into her digestive track and is causing all these problems.  They believe it will resolve on it's own over time.

I'm exhausted, and therefore extremely impatient.  When Shawn suggested that her cold wasn't the problem and that we should switch formulas I lost it.  It was almost as if he'd personally insulted me and I responded with everything but love.  When Sadie wanted my attention during her visit and the doctor was here trying to speak to me, she got my angry mom voice.  That voice is making too many appearances for my liking these days.

During rounds we were told that her MRI has been cancelled for this week as anaesthesiology is not willing to touch her until her "cold" is gone.  That means another full week here with nothing to do.  We were also told that we have to get through all her symptoms and THEN wait another 3 weeks before her heart surgery.  That means we are delayed another full week.  I'm starting to wonder if I should have someone bring up our Christmas stockings.

Life seems overwhelming today.  I know that a new day comes with new perspective and that a good sleep can drastically change my attitude.  Lack of sleep, bad news and whiny children is not a reason to speak poorly to those I love.  Please pray that I would find patience, even in my weakest moments to love those around me.  We're all struggling and it's not fair to pretend I'm the only one that had a difficult day.  Please continue to pray that Hope would recover from this bug and get back on her feeds without too much weight loss.  Most of all, please pray she doesn't get another cold before her surgery. We are asking that anyone who plans to come anywhere near us before then, gets their flu shot!  Thank you for caring, even when I sound like a complainer.


  1. Oh Amy!! you're only human. You have been dealing with so much. I wish, even though i'm a stranger, I could just come give you a huge hug and a pumpkin spice latte, cause for me, they always help! love and prayers.

  2. know that there is limitless grace for you today and every other day. praying for all of you. specifically for this bug to clear up quickly and for hope to stay healthy and bug-free for surgery. praying for her tummy too, for all that's going on there to be resolved quickly. praying for you and shawn and sadie... for grace and love and sleep and patience , even humour and levity to be yours as you wait... as i've said before, you're warriors all. and the battle can wear on you. so give yourself the same grace you'd give others. love and prayers to you from our family here in toronto - annie, paul and miles

  3. im reading this daily, thinking of you daily, praying for you daily. you haven't left my thoughts, sweet little hope&family. you are in the palm of His hand, even if the world is insurmountably large. each day im waiting with you for your next steps - you'll take them when you're ready - and only He knows when. - p

  4. Isaiah 40:31: But those who hope in the LORD will renew their strength.
    He will provide you with every bit of what you need. Keep your eyes on Jesus and everything else will fall into place. Peace to you and may you feel a bit of that peace that passes understanding. Every day we read your blog and pray for you and your family. God has provided all sorts of people to surround you and care for you at this time. Be encouraged... you are not alone. God is loving and caring for you, Hope, Sadie and Shaun.

  5. I find myself checking for updates almost daily lately.
    I found your stroy through a friend on FB.
    It helps give me strenght each day knowing how much you
    and your family are going through and how you still turn
    to the lord for guidance and prayer. When I feel like things
    in my life are getting challenging I think of Hope and what your
    family must be dealing with daily. My daughter has Raynauds and it causes her
    a great deal of pain, and at times its very challenging to see her hurting and knowing
    that there is nothing I can do to make her feel better.
    I have always known there are people who are alot worse off
    then what I am, but some days its easy to forget,
    I am sorry your family has to go through so much but I wanted
    to thankyou for sharing your story and touching so many lives.
    It gives me a reason to look at the good things in life.
    From the day I found out I was pregnant with my daughter I wanted
    to start praying with her daily. I want her growing up knowing the lord.
    I get off track and praying with my daughter was one of the things I didnt
    get around to doing as much as I would like. Since hearing your story I
    have started saying a prayer almost everynight with my daughter I am finding
    it easier and easier to do. Every prayer we say is a prayer of thanks
    for the day we have been given and we ask every day that the lord be with
    hope and your family. This week has been a hard week a friends
    3wk old son was diagnosed with a rare lung condition and is having
    difficulty breathing. I am saddend that such bad things happen to
    such innocent babies but though your blog and the out pour of support
    for my friends son, I can see Gods glory all around.
    It's hard to understand how such a small child can have such a large job,
    but bringing people together and showing that no matter what the Lord is
    present in our lives every day is wonderful. I am blessed that everyday
    I see more and more people willing to pray for someone they dont know and more
    and more people believing in the Lord.