Saturday, 6 October 2012

Lovely Liver Doctor

"I lift my eyes up to the hills.  Where does my help come from?  My help comes from the Lord, the maker of Heaven and Earth!"

I'm sitting in Hope's room tonight, our roommate from last night was taken into ICE, and we're all alone.  I've chosen to take advantage of the rare opportunity of having the room to ourselves.  We got a little CD player for Hope to listen to music.  I'm laying here listening to a mixed worship CD that someone made for me months ago.  As I thank God for all the wonderful things he's done in our lives, I'm overwhelmed.  He has sent the most incredible people to make our burden lighter.  In that moment my nurse walked in and named the band.  Another person next to Hope that loves Jesus and believes he can heal her.  Beautiful.

Every day I am reminded that God is doing more than I know.  If I knew the full extent of what he was doing in our lives, I would be too overwhelmed.  This journey is not easy, some days I don't think I'll make it through.  I'm learning that I can't do this, I'm not strong enough and I love Hope too much to not feel the pain of watching her suffer.  When I reach my lowest point, I realize that I'm not surviving and I'm not strong.  It's in those moments that I see God, I see evidence of Him moving through Hope's life and I feel privileged to be apart of it.  In those moments the burden is lifted and I realize that all I have to do is love my girl, I'm really good at that.

This morning was a bit crazy.  The baby we roomed with overnight was not doing well.  She screamed a lot and was clearly in pain.  After 4 straight hours of screaming in the morning, a whole team of doctors were around her and decided she needed to go to ICE.  I ached for the family and especially the child.  By the time things had settled and the cardiologist got around to Hope, it was after 12.

While I waited for rounds, I had a meeting with the liver specialist here.  I was encouraged after I spoke with him.  I've been worried about Hope having to transfer back to the GI team in Calgary eventually.  If her fluid remains after the next surgery (something they feel strongly will happen), I don't want to leave the GI team here.  We had such a poor experience with GI in Calgary and it broke my confidence in them.  The doctor here assured me that my experience would be better with the liver specialist there and promised to personally refer Hope.  My mother heart breathed a sigh of relief.  He shared that Hope's clot in the liver could cause her to have internal bleeding.  This would be pretty bad and gives us another specific thing to pray against!  We talked about a lot of specifics for the 3rd surgery as well.  It's a lot of medical specifics and I won't bore you.  As for the Glenn (2nd surgery), I asked him what he thought about her having it.  He said that he was totally in support of her having it and felt that she would do decently well, although she would struggle more than others would.  In that moment, I felt hope for our Hope and felt more confident for the meeting on Tuesday.

When they finally rounded on Hope, the doctors were happy with her current condition.  They took her off one of her heart meds.  I still find this unnerving, but am trusting them in this decision.  She is on less oxygen and seems to have more energy.  They agreed to let me take her out for the afternoon!  It was so nice to have her at the house with the family. Volunteers came in to make a thanksgiving dinner for everyone, it was great.

Hope is now on her regular feeds that run every 3 hours.  She has tolerated them amazingly and appears to be doing well on more formula, only one more day with breast milk.  Thank you for praying and for having a huge part in her life.  Be assured, when our sweet Hope turns one, I am going to throw a party to celebrate the miracle of her life.  You are all invited, I mean that.


  1. Seriously. We will come. My babies love Hope so much, our oldest is insisting we name her next sibling Hope. :) So many of us wait and pray and REJOICE with you... These next 6 months are going to prove how mighty our God is!

  2. I am agreeing along with you, in Jesus name, for Hope and all of the specific requests in her journey. I rejoice with you in each new miracle, and hurt along with you when things look grim. We have never met, but, I feel a special love for you and Hope. You have touched my heart deeply. If there ever was a way for me to celebrate Hope's first birthday with you I would. It's a long way from Ontario, but, I do have six months to get there!

  3. As I read I saw Gods grace. Beautiful. I will pray...and trust in a God whose grace is matchless.

  4. The journey is not easy, but you have remained strong, in Jesus' strength. We praise God for all the miracles Hope has already received and all the impact this has had on others. God is moving, not our ways, but His. We pray that the next surgeries will happen, right when they should and she'll continue to improve. We pray for you two, as parents as we know how this is drawing you closer to God. And we pray for Sadie that although she is very young, she'll always remember how God works when many pray. Blessings on this Thanksgiving weekend.

  5. Thanks for sharing this wonderful news! Our God is Greater!!! Love that song! Not sure what you listen too, but every song is wonderful, and how exciting to know that you can play music, and to think that the nurse knew the band!! LOL
    God is so good, and yes the stuff HE is doing behind the scenes prob. would blow all of our minds!
    Great to have good news for a change, and so excited about the thanksiving dinner, and you taking Hope out for the afternoon....!
    Well a party? I am sure that I won't be there, but will be in thought and prayer.
    God is amazing, and I praise Him with you today! Awesome news, sniff* God is so good!!!
    Love to all!!!!

  6. God is so good....All the time!

  7. Praise God for the little miracles! That's good news Amy. I am happy that you have a little peace this weekend. Happy Thanksgiving to you all. Continuing to pray.
    Love the Farley's

  8. Can I please help make some of the cakes (because I'm sure you'll need a few...)??? :)

  9. I am in tears and in awe of our amazing Father, his love for us, and his protection over that precious angel. Your faith inspires me. Hope's FIGHT inspires me! I was just updating some people in our church this morning who were asking about Hope. Our God IS greater!

  10. Bless you, Amy. What an encourging message you have sent out today. Have a wonderful Thanksgiving. We will definitely be praying for dear little Hope.