Sunday, March 3, 2013

Day 15: Edmonton


Friday and Saturday March 1 & 2

The past two days have been a whirlwind of joy and excitement. Our new room has been very empowering. Ellie has a daily volume of food that she needs to eat yet we are not on the rigid feeding schedule of the NICU anymore. We are able to pick her up and walk around the room as much as we want with little concern of tubes, wires, and other patients. Walks around the hospital are now done without our entourage of nurses. The greatest change however has been in Ellie's personality.

Before all of this craziness when asked to describe Eliana's personality we would typically use words like laid back, content, quiet, mellow, disinterested in things, but interested in watching people. Like we have mentioned in previous posts, Ellie was typically quite stingy with her smiles and we had never heard her giggle. Since our move out of the NICU though we have been showered with smiles and giggles. We have both spent literally hours just playing with her on her back and revelling in joy with each smile and laugh she produces.

For months we have been hearing about our friends kids reaching age appropriate milestones that Ellie never seemed to reach and now we believe that this might be possible for us too!

Our biggest obstacle now to cross is her weight gain. Ellie is finally back to her intial weight from over two weeks ago however, since moving to bottle feeding only her weight gain has not been consistent. What her doctors want to see is that she is strong enough to eat the amount of calories she requires to grow and ultimately catch up to a more age appropriate weight. Everyone appreciates that Ellie is always going to be on the smaller side due to her genetics (sorry honey) but we just do not want to exasperate this by her having to work to hard to eat.

Back to celebrating the good stuff. Saturday we were able to take Ellie out of the hospital on a six hour day pass... our first adventure out of the hospital with no medical help! On Friday when we learned about the prospect of this "day pass" we were very excited and a little nervous. For the past fifteen days we have been surrounded by doctors and nurses, all of whom have been trained to identify the slightest change in her condition, but with the "day pass" this responsibility would be solely ours again. Our other source of nervousness was due to the fact that we had absolutely no supplies or equipment such as a car seat, crib, bouncy chair, or even anything warm for her to wear outside. Thanks to the generosity of the people around us this concern was quickly alleviated.  My uncle Jock and auntie Elaine arrived with a new car seat that a family from their church was able to lend us and our wonderful nurses were able to hunt down a few warm sleepers and blankets for us to use.

We did not do anything earth shattering on our first excursion, just the fact that we were out of the hospital was exciting enough for us. With Jock and Elaine we meet our cousin Jon and all went for an extended lunch. The banality of our time together was so incredibly comforting that for a short time we were able to forget about the past few weeks and begin to see what the future might be like.

Back at the hospital the three of us were rather worn out from the evening of fun, however it was not over yet. Earlier in the day we had arranged with our close friends Greg, Cheri, and Mackenzie to FaceTime now that we had access to wifi in our room. This was yet another comforting and encouraging time for us.

The last two days have been wonderful.

12 comments:

  1. The Leclair house celebrates each milestone with you. We are sooo excited to read of your recent "field trip" out of the hospital. Be assured of our constant prayers for all of you. You are never far from our thoughts and we look forward to your return soon.
    Lots of love,
    Andy, LaVonne, Jayden & Jenna

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  2. God is good. We're so excited to hear about your last 2 days. We rejoice with you. I love hearing about Ellie's laughs and giggles. We continue to lift you up in prayer.

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  3. This is such fabulous news! Continuing to pray with you all :)

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  4. Cathy Schroeder told me about your family a few days ago. We were in Edmonton with our 11 day old son 21 months ago once we were shocked to find out he was also born with an undetected heart issue. We can SO relate to the feeding issue. It can be frustrating, so we will pray for great wisdom and instinct for you as parents to know when she needs food, and that she would grow. Our prayers are with you. Your posts take me back as if we were there yesterday, in fact, I think Donna was also our son's nurse for awhile in the NICU! She was lovely. Continue to celebrate each and every step, knowing that God knows your little treasure and cares deeply for her.

    Jen Siran - Winnipeg

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  5. Rejoicing with you and can't wait to hear Ellie's giggles and see her smiles! Hopefully we can see you soon. Will keep on praying.

    Love Jo xoxo

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  6. Glad to hear that you all finally had a good day. We follow the blog daily and think about you and pray for you a lot. Mostly I am praying for what I call normalcy and it looks like you are heading there!

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  7. Ellie is such a beautiful baby girl and I just love all of those happy pictures of her you guys are posting! What a miracle she is and a testimony of God's grace and power not only in her healing but also in sustaining you guys during days and moments you probably never thought you could endure... praise our Lord Jesus for His Love and Faithfulness!

    Rejoicing with you guys in all the big and little milestones Ellie is achieving!

    Love Kelly

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  8. So HAPPY to hear all the great news Daniel love you all and keeping your family and my niece in my prayers .
    Rebecca Bailey

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  9. Praise God for this wonderful news. Continued prayers for you all. Smiles and Giggles.. :) The best news yet!

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  10. One day at a time hey you guys. Your little girl is a fighter and sometimes her parents will help her with that. You guys are doing exactly what needs to be done to help your baby girl,,,know that! This latest post is great and I'm so glad like someone else said here normalcy is coming. Be well you guys I'm always thinking of you as are many of us here at the U of W...Sandy T

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  11. Why no updates??

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  12. I heard they are home already. No idea why they would not update that.

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