Monday, 10 December 2012

Cafeteria Turkey!

I'm not sure why, maybe it's God speaking, but some days I have fantastic ideas that come out of no where.  Today I was reflecting on the fact that Hope has been on oxygen forever!  Her oxygen levels are remaining consistent and she appears settled where she's at.  No one seems to monitor her oxygen levels, unless she sets off the alarms.  It seems as though they will leave her on blended oxygen forever.  I decided today to try to take her off the oxygen.  I brought her from 50% to 40% over a 5 hour period with no change in her oxygen levels.  I then told the nurse what I was doing and she felt that as long as Hope could tolerate it, it was clearly fine.  Tomorrow I will attempt to go from 40% to 30%.  Hope's body is good at telling us what she doesn't like and if it needs the oxygen, her levels will drop and we can put her back up.  I wondered today if the oxygen is making her lungs lazy, causing less blood flow to her heart (because of her anatomy) and was a source of our problems, not our solution.  We'll see if I'm right and what the doctors say when I bring it up in rounds tomorrow morning.

Hope's nurse today is one of my favourites.  She is very loving to Hope and constantly fights people to leave her alone to let her rest, not that she sleeps anyway.  She talks to me about a lot of spiritual things and comments on the 'spiritual energy' in Hope's room.  It really sunk in that Hope has an impact in the hospital with the staff.  She was commenting on the fact that our "community" is keeping us sane and that many parents are loose canons after being in the hospital as long as we have.  She may not realize it, but she is witnessing the power of God at work.  No mother is strong enough to endure what I have and be sane, I should be on meds and living in a psych ward.  This is clearly God working in me and through the many people that are carrying our load with us.

Hope is running a fever once again and the doctors fear that she is brewing another infection.  Blood was taken off of her line, as well as her arm today to test for infection.  We should find out in the next 48 hours what the results are.  She is now back on antibiotics and we feel frustrated with another step backwards.  We are up to 13 mls of feed an hour and will be going to 14 mls at 2am tomorrow morning. She doesn't appear to enjoy eating and although I wish we could stop, I know that eventually she will need to endure the pain of the adjustment.  Her stomach has not had a full feed in a long time and will take time to learn how to enjoy food once again.

A month ago the very thought of Christmas in the hospital was too much to bear.  Today I am sad to think that it won't be a relaxing Christmas full of family time for Sadie at home.  Overall I feel like I can handle the holidays in the hospital and that in a years time, it won't matter anyway.  I have so much to be thankful for in life and I refuse to allow the building we spend Christmas in to ruin our joy.  I'm sure the cafeteria serves turkey on the 25th!!

Life is certainly not perfect and I would change so many things if I had a choice in the matter.  But, I am not capable of seeing the bigger picture like God is.  Perhaps the things I would change would take away so many of the blessings that come with the heartache.  I trust that His ways are greater than my own and will continue to trust in His good and perfect will.


  1. I've heard it said that the stars are always there - but it is only in the blackest of nights that they show how brightly they shine.
    Your life - in this dim & uncertain place - IS being used by our God in a great way, Amy.
    We continually pray for you & Shawn and the girls trusting that Hope's story has so much more to reveal... And although, like you, we haven't a clue as to the conclusion - we trust the Writer.
    Hugs with love - and praying for a good night's rest for all!

  2. Amy, my heart is with you. In a very different situation, I too experienced waiting, hoping, trusting, and praying for my own daughter's healing. Like you, it was God and him alone (and he used others to help me, too) who gave me the strength to handle that time. I'm so encouraged by your faith, and I pray that the impact Hope has on those around her will bring some of them to a knowledge of Jesus as Savior :) God really does use all things for our good and for his glory! I pray for Hope's healing and for you to be able to bring her home. God can change things in an instant! My daughter is doing well now and we hope that she will continue in good health from here on. I am praying for you and trusting God along with you, and hoping for Hope :)

  3. Amy & Shawn, if I may be so bold....please allow yourselves a relaxing Christmas morning at home with Sadie. And please allow yourselves a relaxing Christmas supper with your extended family. These times are important. Hope will not be missing out. She will be FINE for a few short hours on that one day. You can spend Christmas afernoon with Hope and late Christmas evening with her. She will be fine and I think it is important for the rest of you to enjoy those times together.

    Continuing to pray for healing and hope and strength for all of you.

  4. You are being an amazing child of God! I'm sure HE is using you in ways you can't even see right now...around the world:) I know there are good days and bad, but thankful His joy comes in the morning.

  5. God bless you! What a wonderful witness you are to His loving care for His children. X

  6. I know that you have been told this before, but Hope's life is having an impact far outside those hospital walls. She is teaching people about the power of prayer and that steadfast faith is what is needed. She is a series of miracles, and although it must be SO hard for you to walk the path you are on, your faith and trust in God's power resonates throughout your writing. God is using you and Hope in mighty ways. My heart breaks to think what Hope goes through in the hospital and pray that she soon has a chance to experience normal "babyhood".

    1. Amen! Was going to write almost the exact same thing as 'anonymous' above. Amy, we are friends of your parents' friends, and I have passed your blog on to numerous of my sisters in Christ who are also praying. You are part of an enormous family of believers who can't wait to hug and cry with joy together in Heaven... except there won't be any crying - just joy! During the past three months of reading & praying, the same words for you keep coming to mind. "Well done, good and faithful servants." Keep pressing on loved ones. <3