Day 298

As Ellie approaches 300 days, it seems apt to reflect on what an amazing miracle it is that she is in our lives. The current routine of having someone with Ellie 7 days a week (and 7 nights) is really taking its toll, and it can be easy to forget how much we longed and prayed for the opportunity to get to know this amazing girl.

Here is a list of things about Ellie we were never meant to find out about.

  • We were never meant to know how stubborn Ellie is – when she wants something she will find a way of letting you know and kick/scream/hold her breath until she gets it. We are looking forward to seeing this translate to strength and persistence later in life.
  • We were never meant to find out the Ellie is a real people watcher. She loves watching anyone who comes into her room whether it be a cleaner, nurse or doctor and she watches their every move with a deadly keen gaze
  • We were never meant to enjoy how physical Ellie is. She loves to touch and be touched. It is rare for a nurse to check her heart without it turning into a hand holding session as she grabs their finger and holds on for dear life. With the exception of when she is super grumpy, she never fails to smile and giggle when she gets kisses on the cheek.
  • We were never meant to see how amazing she is at communicating – she has great and creative ways of getting your attention and letting you know what she wants. Currently her favourites are pulling out her nose prongs (I am unhappy about something), throwing her head backwards (I want to do something different now) and holding her breathe (you better stop what you are doing right now!)
  • We were never meant to know how brave she is – no matter how nasty a procedure or  situation she has been through, she has always just willing to pick up from where she is and keep moving forward. I know I would have given up 10 times over if I had gone through some of her challenges, but she soldiers on forward not worrying about the next hurdle.

We thank God for the opportunity to meet this girl and we are so grateful that we are on track to experience a whole lifetime with her.

Thanks again to everyone who is so faithfully supporting us through this marathon. Today, Ellie’s paediatrician said she would be home for her birthday. While this was more a hopeful plan than a medical diagnosis, it is still encouraging to see her progressing forward!



‘Dad, can’t you see I am too busy for photos’


‘Ellie, you have to come home and try this. Big brothers are heaps of fun!’


6 thoughts on “Day 298

  1. Great post, lets all hope and pray that she can be home for her first birthday, you all deserve this as we all know this has been a very long year for you all, well done to all xoxo


  2. Matt
    You are both amazing parents that have had to face massive challenges, your life live turned in many circles, but with all the support and love that is there for you from both families, church,doctors, nurses and people who don’t even no you personally the reward is not that far off now (Ellie coming home) so hang in there and hopefully the party is getting closer and life back to normal as can be with four children.


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  3. Love this post! It goes to show that ‘giving up’ is a learned thing that becomes a choice. You and Deb never gave up and that has translated over to your beautiful children and in particular, Ellie. God bless her and you all xxx


  4. Months back I commented that Ellie is driving her own agenda. In terms of all those wonderful things you “were never meant to find out about” – she firmly intended for you to learn them all and a whole bunch more to come… Enjoy! x

    Liked by 1 person

  5. Ellie is fighting a courageous battle, and so far has manage to conquer every challenge set upon her. I try to think back over the past 300 days, and can’t recall any problems relating to her heart. Through all the adversity a strong heart must surely have carried her this far. I can’t think of a gift more precious than a strong beautiful heart. xx

    Liked by 1 person

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