One year on…

Today, 17th November, is World Prematurity Day, a day dedicated to raising awareness of preterm birth, and a perfect opportunity to update everyone on the Lilyroo Fund.

14 months ago we unveiled the portable Cardiac Ultrasound Machine we purchased for the Women’s NICU (the NISC has been rebranded to the NICU), and less than 11 months ago we posted our most recent Facebook update. Time has certainly flown by…

Phoebe

Our second daughter, Phoebe, is now almost 17 months old and has grown into a funny, cheeky, and very tall toddler! She is incredibly sweet natured, smiles and laughs a lot and loves books and Peppa Pig. Despite being a joy to parent, being parents is the hardest, but most rewarding, job Kristie and I have ever had.

A recent photo of Phoebe when she decided she wanted to sit in her pram in the lounge.

A recent photo of Phoebe when she decided she wanted to sit in her pram in the lounge.

It didn’t take long after Phoebe’s arrival for us to outgrow our two bedroom flat so we moved into a house, just over a year ago. It took a number of months to settle in, but we now feel at home and the extra space has been perfect for Phoebe to first crawl and now take her first steps.

Kristie returned to full time work in January when Phoebe was 7 months old. With our parents in the UK and New Zealand, Phoebe is in day care 4 days a week, with Kristie working from home on Fridays. We’re extremely grateful to Kristie’s employer, St Michael’s Grammar School, for providing flexible working arrangements for Kristie and other working parents. At times, as it does for all parents, life has felt like a balancing act as we’ve tried to keep ‘our heads above the water’.

Phoebe last weekend at Abbotsford Convent

Phoebe last weekend at Abbotsford Convent.

Another ride?

As the dust settled on the inaugural Lilyroo Ride and the reality of being parents to Phoebe set in, the possibility of a second ride became less likely.

In December, having weighed up everything, Kristie and I made the decision not to attempt a second ride. While we believe we had a strong platform to run another successful fundraising event, neither of us could envisage a second ride living up to the positive, cathartic experience of the first. Thank you to everyone who expressed interest in a second Lilyroo Ride, and to our committee, riders, volunteers and partners who gave so much time and effort to make the inaugural Lilyroo Ride the life changing experience it was.

Holding on too tight

Deciding not to do another Lilyroo Ride was a huge weight off my shoulders. Despite this something was not right. I was getting lots of headaches and had this constant feeling of a big knot of all my thoughts at the very front of my brain. Kristie said I had a constant frown on my face.

I’d also been struggling with death for a while, particularly when I saw it on TV. This all came to a head over Christmas when watching The Green Mile. Despite not being squeamish, I had an intense physical reaction and was almost overpowered by anxiety during one, particularly gruesome scene. It became apparent to Kristie and I that I was showing the very early signs of depression and in the New Year, with Kristie’s support, I sought professional help.

Looking back, I’d never really gave myself chance to properly grieve Lily, prioritising Kristie and our families grieving above my own, then putting all my energy into the Lilyroo Ride. It was now time to focus on me. So, over the course of 10 appointments with a psychologist, I was able to unpack and address my feelings towards Lily. I learnt to loosen and relax my emotional grip on her, and no longer hold her so close to me for fear of losing my connection to her. I’m pleased to say my relationship with Lily is now much healthier. Days or even weeks can pass by without me thinking about her. Now, when I do picture her, she is no longer a baby in my arms, but instead a sweet little girl with pigtails standing a short distance away, looking back at me, waving and smiling.

For families of premature and sick newborns who have spent a long time in hospital, it’s often the Dads who struggle when the baby finally comes home. Perhaps it’s an ingrained male response to hold everything in during the emotional rollercoaster of having a baby in intensive care. Then when the baby is home, all that built up emotion is finally released. A/Prof Carl Kuschel started a Dad’s Group a few years ago for those who have children in the Women’s NICU. You may have seen news articles about Radford White’s Books for Beards fundraiser. The Dad’s Group is a really important initiative and one that I can relate to.

The Lilyroo Fund

So where are we at with the fund?

Well, to date the Lilyroo Fund has raised $210,413.07 and we’ve spent $99,000 on new equipment. Our last equipment purchase was the portable Cardiac Ultrasound Machine and that has been used thousands of times over the last 14+ months to benefit premature and sick newborns in the NICU. Lily, through her legacy, is helping so many babies and as parents we could not be prouder of her.

That currently leaves over $111,413.07 leftover which, through strategic investment by the Women’s Foundation board, is used to grow the Foundation’s financial resources. It’s heartening to know that the leftover money is not just sitting there, but is an asset constantly working for the Women’s.

While we are keen to spend the money as soon as possible, our priority is to align with the strategic direction of the NICU and Women’s as a whole. There are a number of exciting new equipment and research projects on the horizon for the NICU and, when the time is right, we look forward to funding one of these. We will keep you updated on this.

In late August, St Michael’s Grammar School Staff Association ran a terrific quiz night and raffle raising over $2,3000 for the Lilyroo Fund. The night was lots of fun, with our table finishing a close second. A huge thank you to the whole of St Michael’s for your continued support and to all the local businesses who kindly donated raffle prizes.

Kristie helping set up the St Michael's Grammar School Trivia Night

Kristie helping set up the St Michael’s Grammar School Trivia Night

The future

As you can tell the first half of 2016 was a struggle. Kristie and I are now in a position to increase our support for the Women’s NICU as best we can. While we may not have the capacity to run a Lilyroo Ride for the foreseeable future we have already met with Carl and Jan Chisholm, the new CEO of the Women’s Foundation, to plan the future of the Lilyroo Fund.

We’re excited about the future and look forward to sharing the Lilyroo Fund’s journey with you…watch this space! 🙂

Thank you for your continued support,
Pete

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