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

Sunday 23 March: Ironman Melbourne

Today as I write here in Australia, it is AFL Grand Final day – a huge day for Melbourne. For us, personally, it is 6 months to the day since our beautiful baby girl, Lily, passed away. Yesterday, I took the day off and had a fantastic day at the Reach Foundation Ladies Lunch – a special pre-Grand Final lunch to celebrate women. It was fantastic to support a great charity that helps young people get the most out of life. It was a huge amount of fun and an inspiration for our own fund raising activities.

In my last post I spoke about the day my waters unexpectedly broke. As Pete left the hospital that night, to prepare for Ironman Melbourne (3.8km swim, 180km bike ride, 42.2km run) the next day, I was left to try and make sense of the most draining, and emotional day of our lives. Lily and I were stable and receiving the best care possible – every few hours I was given antibiotics to prevent infection, as Lily was no longer protected by the amniotic fluid. I continued taking antibiotics every few hours through the night.

My Mum was booked on a flight to Melbourne, arriving on Monday (24th) morning. They live in Wanganui in the North Island of New Zealand, but when my waters broke they were in the South Island on their way to the Maadi Cup (NZ Secondary School Rowing Championships) – the biggest rowing regatta in the Southern Hemisphere (My Dad is a Head Coach of a Nga Tawa Diocesan School and Wanganui High School).

Of course travelling internally in your own country, you don’t take your passport. So when Pete made the incredibly difficult call to them to let them know my waters had broken, they were unable to hop straight on a plane. My Mum was in Ashburton (an hour below Christchurch) and my Dad was in Twizel (around 3.5 hours below Christchurch). Fortunately with the help of some amazing friends, Mum was booked on a flight from Christchurch to Melbourne on Monday morning. Another family friend was able to break into Mum and Dads house, get her passport and ride on his motorbike from Wanganui to Christchurch and hand deliver it to her. Dad had to make an extremely difficult decision – travel back to Christchurch and get on a flight, or continue with his job and be there for his students, in the most important week of the rowing season. He knew Mum would be with me, so stayed with his athletes, in what must have been one of the hardest decisions he has had to make.

Pete stayed the night at Pat’s, where he was well fed and managed to get a few hours sleep. The race started shortly after 7am in Frankston so Pete was awake at about 4:30am. We spoke and I let him know Lily and I were OK, and I could tell he was more motivated, emotionally charged and ready to race than ever before. During the race whenever he had a low point or was in pain, he thought of Lily, and she helped him through the low points. During the bike leg, our friends visited me in hospital and we were all able to track Pete’s, and their husbands progress during the race. They brought incredibly thoughtful gifts for my hospital stay: books, gossip magazines, food, dry shampoo, and even some sparkling purple slippers (thank you Jess). During the run Pete had constant feedback from those friends who had been to see me and were now back on the course telling him about how I was doing, and they in turn relayed his progress back to me.

It had been very difficult for Pete to keep his emotions in check during the day, and as he ran down the finish chute, he was finally able to let them out, crossing the line in tears in 9hrs 37mins, a 21 minute personal best.

Pete crossing the finish line

Pete crossing the finish line
Photo: Steve Lingard, Slingard Studios.

Pete just after the finish of Ironman Melbourne

Pete just after the finish of Ironman Melbourne
Photo: Steve Lingard, Slingard Studios.

Once he had recovered, eaten and showered, he drove to the hospital that evening with his finisher’s medal, holding it aloft and clenching his fist in triumph as I watched him walk into the hospital from the window. I was smiling from ear to ear, and after what had been the single worst day of our lives, Sunday was one of the best – an incredibly positive experience for both of us, and one we will never forget. I’m so glad we decided Pete should race. Whilst the battle Lily and I were having was inspiration for him, the way he never gave up, raced in incredibly difficult circumstances and managed to set a huge personal best was, and continues to be incredibly inspirational to me.

Pete left his finishers medal with me that night, not only so I could show all the midwives, but as symbol of what you can achieve when you never give up.

Much love,
Kristie

Saturday 22nd March

When I started writing this blog, I knew that this post was going to be the hardest to write: recalling the day my waters unexpectedly broke. Subconsciously I think I’ve been dreading it, knowing that I would have to detail the toughest day Pete and I have ever experienced. However, in order to fully share our story it is important that I revisit it, document it, and by doing so draw a line underneath it.

Picking up where I left off from my Readymade Mother’s Group post we had passed the 20 week milestone and knew we were expecting a baby girl. Pete was edging closer to racing in his last Ironman event, Ironman Melbourne on 23 March, 2014, and once that was done it was time to get the nursery ready.

Kristie and Pete at the finish line of Ironman Melbourne a year earlier in 2013

Kristie and Pete at the finish line of Ironman Melbourne a year earlier in 2013

We woke up on Saturday 22 March, full of nervous energy the day before Pete’s big race. I was ready to help Pete get his things together before we drove to the start line in Frankston to check all his race gear in. Little did we know our lives were about to take a completely different direction.

Shortly after waking up, at about 8am, I felt a sharp pain on the left side of my stomach – something wasn’t right. I went to the bathroom and lost a lot of fluid. I was 23 weeks and 2 days pregnant.

Pete was in the kitchen making me tea and toast while he got his nutrition ready for the race. Deep down I knew my waters had broken but was in denial about what was happening. This wasn’t how we were supposed to start our weekend…

I was registered at The Women’s at Sandringham hospital, so phoned them immediately and they called me in straight away. Once there the midwife examined me and informed us that it was highly likely my waters had broken, although I would need an ultrasound for final confirmation.

Our friend Andrew had come to the hospital and stayed with us, while we met the obstetrician, who confirmed the worst. Yes my waters had broken and it was more than likely I would go into labour in the next 48 hours. Physically I felt fine, nothing out of the ordinary except my waters breaking and my baby bump had shrunk.

Emotionally, I was scared, and could not believe this was happening to us. It felt like a bad dream. There were no warning signs, my scans were great and to that point I’d had a normal pregnancy. It brings tears to my eyes thinking back to that moment, such overwhelming fear and sadness, whilst trying our very best to stay positive. Having Andrew there was a blessing. In that moment of raw emotion when we were struggling to absorb everything we were being told, he was able to hear everything first hand and whilst he was emotionally invested, he was able to take it in more rationally, and tell our friends what was happening.

We had an ultrasound to see how Lily was doing. It was such a contrast to our 12 and 20 week scans – this time the tears of joy from those scans were replaced by tears of sadness. She was still OK, but there was no fluid around her.

After the scans and meetings with midwives, obstetricians and pediatricians throughout the day, we were informed that, given Lily was less than 24 weeks gestation, should she be born her chances of survival were very slim, even if we chose to resuscitate her. Should she survive there was a high possibility she would have one or more severe disabilities. The longer she could stay in the womb, the greater her chances would be of living a long and healthy life. We were faced with a choice no parents should have to make: do nothing and let our daughter pass away naturally, or proceed down a course of steroid injections and antibiotics to help her lungs develop and keep her in the womb as long as possible. Was I going to go into labour within 48 hours? Could I potentially go on bed rest and keep Lily inside for a while longer?

We believe there are two fundamental parental instincts: to always support and believe in your children; and to protect them from harm. We were informed that Lily was happy and pain free in the womb. Being positive and resilient people we chose to give Lily every possible chance of survival, so decided to proceed down the course of steroid injections, and hope that she stay put as long as possible.

Should she be born in the next 48 hours, we chose not put her through the invasive ordeal of trying to resuscitate her and instead let her pass away naturally. However, should we get to 24 weeks, we would re-evaluate, knowing that she would be that bit stronger, and the odds, although still heavily against her, would shift slightly in her favour. Each subsequent week she could spend inside the womb, the greater her chances of survival. Why had this happened to us? I shook with fear. How had such a healthy couple ended up in this situation? Had we done something wrong? Had we missed any warning signs? No. Nothing.

During the quiet periods between scans and meetings with doctors, Pete and I discussed his participation in the Ironman. We decided to keep the option of doing it open and during one of the quiet periods, he was able, with the help of Pat, to finish getting his race gear together and drop it all off at the start line in Frankston.

Once Pete was back at the hospital and we had established that Lily and I were both stable, we decided that he would race. His training and preparation for Ironman Melbourne had been a fantastic journey for both of us and one we wanted to see through to the end. Should anything happen to me or Lily during the race, our friends who were spectating and in close contact with me would instruct Pete to abandon the race, and he would immediately come to the hospital.

Saturday 22nd March was an incredibly draining day, and one that we wouldn’t wish anyone to go through, but thanks to our amazing friends, Pete was preparing to race Ironman, Lily was comfortable and I was going to do everything I could to keep her inside me as long as possible.

Much love,
Kristie

Father’s Day

It’s hard to believe it has been seven weeks since my last blog post…

I’m not really sure the saying ‘time flies when you’re having fun’ really applies in our situation, but I feel like we’ve come a long way, both physically with the fund and personally as we continue to cope with our loss.

Before I recommence sharing our story, I’d like to give you an update on what Pete and I have been up to the last seven weeks and how we’re currently feeling.

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Emotions

As mentioned last week, Thursday 17 July was Lily’s due date. Weeks ago we decided to take this day off work and celebrate her life and the precious time we spent with her. It was an emotional but very special day which I’ll talk more about in a later blog post.

Those who have seen me recently know how exhausted I am. I am completely drained and my emotions feel like they’re balancing on a knife edge – the slightest thing can put me in tears. I’ve had to protect myself by keeping my guard up, and some days needed to keep to myself, but have found this near impossible with work and our normal social outings.

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Readymade Mother’s Group

As I left you in my last blog post, it was early January; we had passed 12 weeks and were extremely excited about the impending arrival of our first child.

In February I turned 30 and to celebrate Pete organised a night out with friends in the city: eating good food, laughing the night away and for the first time in my, and a number of pregnant friends adult lives, sticking strictly to ‘mocktails’ and waking up the next day feeling fresh! Excitement was growing as our bellies got bigger and I looked forward to the day where we could celebrate and watch our children grow up together as well as support each other through our ‘Readymade Mother’s Group’ (I was 1 of 12 in our extended friendship group, and 1 of 17 women at work who were pregnant).

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The 12 week scan

We’re a pretty healthy couple. We take good care of ourselves and each other and surround ourselves with positive people who share a similar outlook on life.

I’m a 30 year old New Zealander, having moved to Australia in 2006. Pete is 37 years old and emigrated from the UK in 2005. We fell in love with this country and each other and have happily settled here in Melbourne. We met through triathlon in 2007 and were married in February 2012.

Pete and Kristie on their wedding day

Pete and Kristie on their wedding day.
Photo: Candy Capco

We’ve participated in different sports for a large majority of our lives and on any given day you’ll either find us on our bikes, in a pool or running around Melbourne. We’re very proud of what we’ve achieved through sport and believe it has taught us valuable life lessons that have helped mould us into the people we are today.
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Milestones

Today, as I write, is Friday 27 June, 2014…

  • It is three months since I first held my beautiful daughter.
  • It is three months since I had to say goodbye to her.
  • It is another milestone – 3 months without my baby girl. I should still be pregnant with her.
  • It is annual Remembering Day (Red Nose Day) dedicated to all the beautiful and precious children that are no longer with us.
  • I should be finishing my first week of maternity leave but I’m still at work.

But I’m OK.

There have been no tears today (this time 1 and 2 months ago I found myself so upset at the time of day she passed away).  I haven’t struggled today.  I’ve had a good day.  I’ve smiled and celebrated my goddaughter, Libby, turning 3 today.  It only occurred to me last night that it has been 3 months.  I’ve stopped counting the weeks.

It’s a sign that I’m ready to start sharing our story…
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