Saturday, March 2, 2013

Day 14: Edmonton

Thursday, February 28

The long hallway on our way to the NICU seems to run forever. We count the steps as we near the entrance waiting to cross that invisible barrier where our  stomachs start to do cartwheels.  Sometimes it's in anticipation of seeing her smiling face and other times it's anxiousness in not knowing how her night went.  This morning it was more the former.

Last night we talked a lot trying to process our conversation with the "heart failure specialist". We came to the conclusion that we were going to understand the severity of the situation, but we choose to celebrate the victories of healing instead of dwelling on the unknown!  We received a text from our pastor reminding us of how far she's come and how happy she is right now. He's right, it's neat to see how cheerful and joyous she is considering what she's been through. Ellie was always stingy with her smiles and it makes
our hearts happy to hear her giggling and always smiling when she's awake. What a drastic change. What a blessing!

Today was a very exciting day... We moved out of the NICU and onto the Pediatric Cardiac Floor.  We went from a room full of hustle and bustle to an incredibly quiet and relaxing environment.  We ourselves are finding it hard to stay awake without all of the alarms going off and nurses calling out.  Thankfully there is a single bed beside her crib that we can take turns napping on. Here we are able to be quite independent and after our long hospital stay it is graciously accepted.  This should be a perfect transition area for us as we begin to get comfortable with our new life.
As far as medical updates, Ellie is now only being bottle feed. The last of her IVs were taken out upon our arrival in the new unit, she now is only attached to her heart monitor. There is so much more space in our new room to move around, we are very grateful for the freedom. We also have access to many toys and bouncy chairs to help us entertain Ellie. Though I think Ellie was more pleased with the quietness of our new room than the new toys for she spent most of her time between feedings asleep.

As an added bonus today we received a very thoughtful care package from some friends in Winnipeg. Apparently there was some concern over Dan's reading choices for Ellie, so they included a few age appropriate books for her. Now the only problem is the two beautiful books they included have made us both cry multiple times today. Ellie seemed to really appreciate the gesture.

Our new goal is to get a day pass to leave the hospital with Ellie. We are told that if she remains stable for the next few days we might get one this weekend. It is wonderful to have a tangible goal like this to strive for.  Further, we feel that this will be a significant step forward on our ultimate goal of getting home.


  1. good morning, really hope your walk outside comes to be today or tomorrow.we want to send you something but wonder what the better address is. winn or edmonton?

  2. Another exciting milestone. I'm glad to hear about the quieter room you can be in as a family. Thank you for the wonderful pictures. It's SO GOOD to see Ellie smiling and laughing.

  3. Ah! This made me cry!! The look on your face in the picture of them wheeling her bed to your new unit shows joy! So happy things are getting better every day. No IVs!! What a huge step!! Love you all

  4. Love seeing your smiles! :)

  5. YAY!! So happy for you! Big hugs and continued good wishes!

    All the best!
    Karen F.

  6. Beautiful smiles. So many sad tears shed reading your story, what a joy to shed some joyful tears today. As always, in our prayers.

  7. Ellie's transition from tubes to giggles has inspired a lesson on joy I'm teaching to my Sunday school class this week.

  8. I'm trading my sorrow
    I'm trading my shame
    I'm laying it down for the joy of the Lord

    I'm trading my sickness
    I'm trading my pain
    I'm laying it down for the joy of the Lord

    I'm pressed but not crushed persecuted not abandoned
    Struck down but not destroyed
    I'm blessed beyond the curse for his promise will endure
    And his joy's gonna be my strength

    Though the sorrow may last for the night
    His joy comes with the morning

  9. Hi there, Dan and Family,
    This is Jeannine, one of the WEC students. We have all been concerned for your family. I had finally found the time to get together that tiny gift I wanted to share, and I brought it to Janet, and she said you weren't in...later on, she let me know what you had been dealing with for 10 days already, the whole of my reading week, where I felt that the worst that could happen was that I not be prepared when school resumed again. It was a total shock to find that your new baby's heart had stopped and your family had been living life and death troubles. I know what it is like to not be able to take a baby home, one of mine was in the NICU for observation only, and just for 24 hours. I can only imagine the kind of agony you and your wife have faced, it is something a parent never wants to feel, ever! We are pulling for you in our hearts and asking the powers that be for full recovery and wellness.

  10. So pleased to keep checking in for new posts and finding such wonderful news! Bet that room change officially makes it the best upgrade you've ever received! We're praying you just keep getting those upgrades until you get upgraded all the way home!

    Elaine (Lainey) and Dave

  11. So glad you received our parcel. So sorry that it made you cry. The book " You are loved " was suppose to bring you comfort for your nights part from her. Keep reading the Great Gatsby Dan, I am sure she wants to hear the rest of the book. You all are so amazing! I thank you for the wonderful pictures, especially of Ellie holding the board book. I love the pictures of Ellie laughing and looking into your eyes! What a fighting spirit! We will continue to keep you all close to our hearts!