Friday, March 1, 2013

Day 13: Edmonton

Wednesday, February 27

The hospital is a tale of two emotions, elation that a loved one has made a recovery or devastation that they have not. The various scenes are played out in the labyrinth of corridors that connect the different wards. The tears flow simultaneously and in complete oblivion of one another.  Yesterday we too were oblivious to the drama around us as we walked our little girl, our tears were of
elation. Today, our tears were of devastation.

The morning was busy. We took Ellie to the ophthalmologist to see if there might be a connection between her eyes and her heart condition. Everything looked normal, a little under developed, but the ophthalmologist felt that it was easily explained by how sick she has been. He also looked at her brain MRI, which again looked completely normal. All of this was good news.

When we returned to the NICU we were greeted by the "Heart Failure  Specialist". This was the doctor that all the other doctors had been talking about. He was the one that ultimately would say whether or not we should stay in Edmonton or go home to Winnipeg. He was also the one who would assess Ellie for a possible heart transplant.

Transplant.   Hearing that word today was like a sucker punch in the gut. A million questions filled my head... Why? Isn't she doing better? Sure we knew this might be a possible outcome but why haven't we had this conversation before now? How much longer do we have to stay here? Is there ever going to be an end to this madness? Unfortunately no one had definitive answers for me.

Did you know that transplants aren't done entirely the same way as you see them on tv?  There isn't one magical master list with every possible patient ranked in order. It is a series of tests and stages that a patient goes through. First they are tested to determine their suitability, that is, will their body handle the introduced organ or not.  If they are found to be a probable candidate they are then assessed as to the urgency of the transplant.  There is no official list, just varying levels of procedures and steps.  The cardiac team in Winnipeg is not equipped to do this type of procedure on an infant so they want the team here to start the work up before we can go home. We were assured numerous times that this was just a precaution.  Still, what a shock to the system.
Our meeting with the  "Heart Failure  Specialist" lasted over an hour. It was a sobering and very frank discussion about Ellie and her future. Being fairly analytical people, what we really wanted was some sort of certainty that we could hold on to. What we had to settle for was the statistical breakdown of probabilities from a doctor with decades of experience. What he told us was, infants with diagnosed cardio-myopathy have a 50% chance of needing a transplant within the first twenty four months of their lives. After this age the rate of transplant begins to fall. They have a 20% chance of making a full recovery. Which leaves a 30% chance of recovery with some sort of heart aid, either drugs or mechanical. The numbers don't look too bad until you start considering the number of heart transplants actually preformed on infants and the likelihood of finding a match for her. With the numbers and probabilities factoring in our heads, all the joy of our walk yesterday felt like a distant memory.

At the end of our talk he left us with this, Ellie looks to be a good candidate for a transplant in the future.  Right now however, she is not in need of one. We will have to be vigilant in monitoring her and have regular checkups to assess the health of her heart. Her remarkable turnaround from just a few weeks ago has everyone optimistic that Ellie could fall in the 50% category that does not require a transplant, but what we've learned from our experience thus far is that nothing is certain in the cardiac world.


  1. Just to let you know still here, still reading, still with you as best as can be. your photos say so much about her pluck and your stamina. Keep strong. Love you all MJ

  2. Mountain tops and valleys and one great God through it all. Prayers will never stop for sweet Ellie and for you both. Take those special moments of little walks, smiles and hugs and cherish them. Please don't feel robbed of any joys that come your way. That way, when the valleys come, you'll be strong and Ellie will be the courageous little girl she is and we will all trust for another mountaintop. Love you guys to bits. Jo xoxo

  3. Wow a shock to read this today.
    Upholding you in prayer still and always.
    God will sustain and He will show His power.

  4. Sometimes we may never know the reasons for our personal struggles. It is harder still when those struggles belong to those we have brought into this world. We must take solace in the fact that God has a plan for each of us that is infinitely bigger than we are on our own.
    May your struggles, and your strengths, be a part of the 'bigger'.
    Bunches of prayers and love for your sweet little girl. God has chosen her to be a light in this world, and even in her infancy, she has touched so many through you both.

  5. I've been following your story since your 3rd post and immediately contacted Jay as soon as I heard to see if I can help in anyw ay. I'm saddened that I haven't yet had a chance to meet Ellie and think about the three of you daily. I watch for daily updates on her continued progress. Thinking of you.
    -Robyn Chapman

  6. Adebunmi ElemejeMarch 1, 2013 at 3:41 PM

    God has given you Ellie, surely, no sickness will take her away from you, Jesus performs several miracle in the bible, Ellie's issue is just a minor case in his sight. Trust in HIM! Ellie is your joy and she will live long in good Heath in Jesus name. Your faith is outstanding and his working for Ellie for the past 13days, the bible says, with faith you can move the mountain, The Lord will heal Ellie and there will not be any cause of transplant, rejoice in the Lord and continue praising his name. We are thinking and praying for you, sure your joy over Ellie will be permanent in Jesus name.

  7. Dan and Mel,
    I'm looking forward to the day when we see Ellie running around the church doing kid stuff and getting into all kinds of trouble! Believers here and everywhere are standing in the gap for you both and Ellie. Press on and trust the Lord!

  8. Won't stop praying for you 3.

    Leah Fraser

  9. sLove and prayers So glad to see youALL smiling Hugs for Eli ana Kirk's Mom Jill