Day 368 – Signing off for now

Writing our last regular post is somewhat bitter sweet. It was a similar feeling when we left the hospital. We are were elated to be bringing Ellie home, but were sad to leave so many good friends and supporters. The people who read this blog have also been a great support to us. Your prayers, encouragement and cheering has been a real source of motivation that has kept us going throughout the last 12 months. Thank you.

Ellie has been doing really well and has handled the transition without any major dramas. Her two big medical challenges now are to consume enough food orally to not need an NG tube, and to breath without any oxygen support (She is booked in for a sleep study in July to trial this).

Tonight, Ellie came to the 6pm Church service with us. Bringing her to Mass had always been a moment that I had marked in my mind as the end of the hospital journey. Most of the highlights from the journey that I will take with me are from the resilience and miracles that Ellie continually showed us:

  • Making it to 26 weeks alive and kicking despite early predictions and complications in the pregnancy
  • Correcting the small hole in her heart by herself after the drug trial had to be stopped due to her first bout of sepsis.
  • Fighting off a triple sepsis infection that an adult would not survive (the night we were told she wouldn’t make it through).
  • Not having an oral aversion despite her very late bottle and food intake (quite rare)
  • Avoiding her tracheostomy by improving her breathing the day after we agreed to the surgery (our decision was made after multiple teams assessed Ellie). This was a very real prospect because they said she would not progress to low flow and would be on high oxygen support long term.

Thank you to everyone who has shared this journey with us, we will always tell Ellie and Hannah about the Village that rallied around and helped us raise them. – Matt

Ellie coming home is busy, but feels so normal. No fanfare or big happens, just a normal family together who have easily accepted that this is the way it was always meant to be. And wow it’s been a long time coming! I finished work in November 2015 due to pregnancy complications, coming off a miscarriage in August 2015 (Grace would have been due less than a month before the girls were born).

Que sera, sera

Whatever will be, will be

The future’s not ours to see

Que sera, sera

What will be, will be

Que Sera, Sera

I’m not sure I have a highlight as much as I know things will never be as they were (and not because we now have to extra kids). The six of us have been on a journey that has never been traveled before and will never be traveled again. It is unique and it is ours. We did not get through it alone.

What I hope to remember from the last, what feels like years, is the people, the community, the support. I want to remember the nurse who bath and fed Hannah while I was sleep deprived and terrified my baby was going to die. I want to remember my sisters coming to be by my side with less than a days notice because I messaged them and said I was scared to go to a meeting on my own. I want to remember the nurse who looked at me as I walked into the NICU, told me to leave Hannah and walk back out so I could have 20 minutes to myself. I want to remember the nurse who took Hannah when she woke at 530 so I could get an extra 30mins sleep after a bad night. I want to remember the nurses who told me to go and shower and take a quick walk while they bath both my girls. I want to remember the probably 100s of people who supplied 5 meals a week for us for 3 months straight, I want to remember the people who continued to provide meals for us over the last 9 months, I want to remember that my cousins came and helped us maintain our yard, I want to remember the people who gave us various gifts often when we needed them, I want to remember our families who endlessly took care of our boys and stayed with our girls when we couldn’t, I want to remember every little and huge thing our parents have done for us, I want to remember that 204 donations were made and that my sister was asked to talk about how to inspire people to donate, I want to remember that Roy has and is going to run 2 half marathons in honour of our girls ( feel free to donate 😊), I want to remember all the friends I have made – with other patients and there families there is a bond that other people simply don’t understand, I want to remember the nurses I chatted to for hours on end, I want to remember the doctors who looked after, saved and cared for Ellie, I want to remember all the cards, emails and messages we received encouraging us to keep going, I want to remember how hard and scary and stressful it was, as well as how joyful, exciting and exhausting, I want to remember expressing 7 times a day and first hugs with my daughters, I want to remember not knowing if my baby was going to live or die and relaxing lunches at the pub laughing about NG tubes coming off.

What I needed was provided

I want to remember all of this and more because it has changed me, it has changed our family, it has changed our perspectives, it has made me angrier when people don’t do everything in their power to make sure their kid doesn’t end up in hospital, it has made me more sympathetic when you hear someone’s kid is sick, is has changed my perspective on what sick really is. It has made me more aware that although things made life easier they are just things, ultimately if your family is healthy and safe with food, any clothes and shelter nothing else matters. It has changed me.

Everyday for at least 7 months I have read the below quote, sometimes aggressively in Ellie’s favour, sometimes adding expletives to give it more attitude, sometimes in hope. I like tomthing of the fate character as being a bit of an over bearing bully and the warrior being controlled and strong standing up to this force and whispering, nothing more was needed. Ellie was known for doing the unexpected, people came prepared for Ellie to call the shots and change their plans. Ellie is my warrior and Hannah is her greatest advocate and motivator. Hannah is often over shadowed, however do not forget she fits into the under 28 weeks, under 1.5kg category. Babies in this category require additional hearing and vision tests, qualify for physio, speech therapy and OT – babies in this category do not normally look and act like Hannah. No way was being born small and early going to hold her back!

One last, and possibly insignificant thing to many, thing is I don’t want to forget the quotes that pulled me through and the songs that lifted me up.


Fate whispered to the warrior.jpg
Where it all began…. crazy that this was only 7 weeks and 2 days before they were born.







8 thoughts on “Day 368 – Signing off for now

  1. Thank you for always being so open and allowing us to follow your journeys. You have inspired us all and thank you for sharing it with us xo


  2. Thank you for sharing your journey throughout the last twelve months I only hope I can meet these little girls, and going forward you are going to have so much fun along with the fighting over toys etc. I know because being involved with twin granddaughters from birth is truely amazing. Also Deb and Matt if you ever need an extra hand and no one is available please let Anne know as I would love help.
    Judy 👏🏻👏🏻🍼🍼💐Get Outlook for iOS


    Liked by 1 person

  3. Dear Hannah and Ellie
    You’re all grown up now and I am picturing you reading the blog, this riveting story of the first year of your lives. You may have noticed that probably the most common adjective people have used in commenting on your parents is “amazing”. As you read Mum and Dad’s sign-off posts, I’m sure you’ll realise just how apt that word is. About now would be a good time to give them a great big hug x
    PS Give them one from me too!

    Liked by 2 people

  4. What a journey you have all been on and I know with the arrival of Ellie to her home “we’ve only just begun”. Enjoy your family of six, I know I will have to stand behind many, but know I am here to babysit/boys sit, if you are ever stuck, I know I will be second in line behind Laura.

    Matt and Deb, your last post has been a wonderful read and although I am going to miss the read each night, might I say you have been an inspiration to all who have followed your journey.

    Hannah and Ellie, well done girls, keep on keeping on and might I say your mum and dad’s faith has bought you to your safe place at home with your family. Nate and Levi enjoy your sisters .

    Love to all Julie Bentley💜💜

    Liked by 1 person

  5. I too, like my sister shall miss your daily updates. Don’t ever forget how much your journey has generated such positive energy to people you have never met. I shall always reflect on this past year, as one of many lessons. We all experience times of self doubt, hopelessness and sometimes the will to face each day simply abandons us. Hannah and Ellie have shown me you can overcome almost anything. You have to have strength, courage, hope, faith and the love of God.
    God bless you all xxx

    Liked by 1 person

  6. Thank you for writing this blog, I have loved reading about what has been happening with your beautiful family and I can’t wait to hear all your updates, see your photos as the girls grow. Lots of love to all of you xx

    Liked by 2 people

  7. I am so thrilled for you all!! I’ve tuned in daily to the blog and offered up my prayers and thoughts regularly. I’ll miss your daily updates but hopefully one day I’ll be lucky enough to meet these two incredible strong girls who are both destined to have big, bold, bright futures.
    Much love to you all,


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