As told by his mum Nicky
It was October 2012 we were so excited about our 20-week scan; would we be having a boy or a girl? The scan was booked for Friday morning then we were off for a weekend break together in Taupo. However, things did not go quite how I had planned, you are having a boy she said and then in an instant all the euphoria was taken away. All the right parts were there and he looked good but he was very small so we were to be referred to the specialist. The lovely lady tried to reassure us and told us not to worry, which was much easier said than done. We were left feeling deflated, worried and a little unsettled. Then it began, scans and appointments and each time he’s small but he’s’ growing we will keep an eye on him. But I knew, I knew something was wrong and the nagging feeling would not go away, I couldn’t relax and I couldn’t stop worrying. Google became my nemesis.
Then at 25 weeks the bombshell I felt was coming, came. I had IUGR (intrauterine growth restriction) an insufficient placenta and umbilical cord, which meant he wasn’t growing or getting all the nutrients he needed and he was small, 380 grams small to be precise. Too small to be delivered yet and so all we could do was wait and try to get him to a viable weight (500 grams was what we were told is really the minimum) and hope that he kept on fighting. What was supposed to be a quick lunchtime scan turned into me being signed off work and not knowing if our baby boy was going to survive it was devastating and heart wrenching and utterly terrifying. Every morning for 10 days we went to the hospital for a scan, I would hold my breath until I heard his heartbeat then I could breathe again for another 24 hours before we did it again. It was agonising.
Then the news came that things were getting worse and they needed to deliver him by caesarean section in the next couple of days – but in a situation that was totally out of our control there was some control, there was a plan – a plan that would hopefully give our wee man the best possible chance of survival – two rounds of steroids, a dose of mag sulphate, the best possible things to help him – a quick tour around NICU and we were as ready as we were ever going to be.
Then at 5.04pm on the 29 November 2012, at 26 weeks, 6 days gestation, Ethan Luke made his dramatic entrance into the world, with a yelp. It felt like an eternity as they worked to stabilise him and as I lay there helpless. Then Brad and Ethan were off and it would be 5 hours before I got to see him. When Brad came to see me in recovery to give me an update and show me a photo, he told me our little bundle weighed a whopping great 500 grams – the magic number and I knew then we had a tough little fighter on our hands.
And just like that, we crash-landed into this alien world of NICU. Words like CPAP, apnoea’s and de-sats were to become part of our everyday language. Where was the baby shower, newborn cuddles, photographer booked in for cute photos of a blissful sleeping babe in a wicker basket? Instead here was my wee man looking like a skinned possum, under a blue light, in an incubator, with tubes and needles stuck all over him, I couldn’t even see his face properly, I could only
touch him through the port hole of his new home a stroke of the finger. He was so little and fragile the size of a block of butter. But in the midst of all this he was here, he was alive he was our baby boy and he was already making little milestones. 24 hours later off the ventilator and on to CPAP, 1ml of breast milk then 2, defying the odds and fighting for his life. One-day old already a feisty tough guy making his place in the world.
The days turned into weeks, into months this was our world now our home away from home. I quickly settled into a daily routine, Brad would drop me off in the morning and I would spend my days in this little world (the NICU bubble), he would come in the evening after work and we would do what we could to help, changing the teeniest tiniest nappies you have ever seen, feeding him milk through a syringe and just sitting and talking to him, reading to him.
It was such a roller coaster ride – just when things seemed to be going well something would happen and we would take a few steps back, an infection and our wee man would be incredibly sick again, reactions to vaccinations would send him on a downward spiral for a few days. I lost count of how many blood transfusions he had, along with several lumbar punctures – it was so hard to watch. He bears the scars of these now little white dots on his hands, feet and spine – his battle scars I call them, they are a part of him and his story. Then came the 1st March 2013 such an auspicious date – this was Ethan’s due date – and so to celebrate he got to have double hernia surgery and interview for Seven Sharp. He didn’t cope so well with the surgery and ended up back on the ventilator and keeping everyone on their toes for the next 48 hours.
But as always, he came back fighting and stronger than ever. And we muddled along making more milestones every day, moving to an open cot, wearing clothes for the first time, attempting to breastfeed, all everyday things that were such huge achievements. In the midst of all this we thought as things are not crazy enough let’s move house too. So with that came a move for Ethan too – and a week after we moved to Lower Hutt and after 108 days in Wellington NICU he was transferred to Hutt Hospital Special Care Baby Unit.
I found it tough in the beginning, leaving behind the security of NICU the friends we had made, the nurses who had looked after Ethan since the beginning, I cried and cried and asked to stay but they all said this was the best thing. And after a few days I realised they were right – we settled into life in the SCBU and the more relaxed atmosphere (as babies not as critical in SCBU, as compared to NICU) was such a welcome change. It was less intense than NICU, less beeping, fewer rules, I could bring my coffee in, and my family could visit when they wanted – simple things but things that made a huge difference to our every-day routine. We still had a few challenges to get through on our stay at the Hutt – but after a couple of weeks, they started talking about going home and so we started to plan. If we could get Ethan feeding okay then we could go so that’s what we did I was determined.
And so on the 15th April 2013 – after 137 days in hospital and the day after my birthday – I received the best birthday present ever – finally taking our wee man home. I was so ready to take him home and be a Mum outside the confines of the hospital walls, I was starting to feel stifled and I wanted to just be a regular first time Mum finding my feet and learning the ropes in my own space without all these people around me – I didn’t have time to feel scared – I was excited and nervous and very ready! He came home on oxygen – so things still were a little surreal but I didn’t care – he was home. We had oxygen tanks and cords around the house, I had a little backpack with a small travel oxygen bottle in it so I could get out of the house – in no time at all Brad and I were experts and it was just our normal.
After 2 months of being on oxygen at home and slowing dialling it down he was doing so well that we got the news it might be time to try and take him off. Off we went to spend a night in hospital and that was that – he did awesome – 7am in the morning we got given the all clear to go home – and he’s never looked back, we have not needed it since which was fantastic.
And now here we on the 4th anniversary of his homecoming – it’s incredible to reflect on this journey, since coming home Ethan has had 3 further surgeries for his hypospadias (look it up if you don’t know what it is) and finally he has been given the all clear from his surgeon. We have recently done his before school check which he passed with flying colours – it’s hard to believe he turns five at the end of year and will be off to school. He is still pretty small, but people learn quickly not to be fooled by this, what he lacks in size he certainly makes up for in personality and noise.
I have been looking back through the scrapbooks I made to document his journey and it’s bought the memories back so vividly. There are so many things you do not know until you are there in this world, this group – this amazing special group that you suddenly become part of. Other families with prem babies, sick babies, all with their own unique amazing story. Everyone going through this crazy thing together. I met people whom I would never have met otherwise, heard and saw so many inspiring stories and saw the pain of the sad ones too. I have made life-long friends through this experience and what a privilege it is to see our kids grow and flourish. This journey showed me such an insight to the strength and compassion of people. We were so lucky to have such supportive family and friends, people who cooked for us, dropped baking off in the letterbox, gave hugs when needed and made cups of tea the list goes on. And to those awesome support groups like The Neonatal Trust – who provided assistance and the chance to talk to other families who had been through this and come out the other side, and Bellyful – who provided much needed meals for the freezer, so we had one less thing to worry about. These little acts of kindness and generosity which truly helped when we were having a rough day, or were tried and stressed.
People often say to me ‘gosh you are so strong’ or ‘you are so brave’, ‘I couldn’t be that strong’ and that old saying always jumps to mind – you never know how strong you are until you have to be. You just get on with it as you don’t have a choice, you do what needs to be done and you just have to have faith. People also often ask me – would you change it if you could. This is an interesting one for me – because of course no parent wants to see their child in pain, and yes. I would have loved to experience a full term pregnancy and all the joy that comes with that but on the other hand this is Ethan’s story and I couldn’t actually imagine it any other way, this is such a part of who he is and this will be his story to tell one day.
*** Thanks for sharing your story Nicky***
The arrival of Ethan and the journey of parents Nicky and Brad is the reason The Neonatal Trust and Bellyful exist. Families are thrust into a world of stress and anxiety and having support at this time means so much to them.
Both The Neonatal Trust and Bellyful are proud to be supported by One Percent Collective. A fantastic and fresh new approach to generosity, you can set up small regular payments which you have the choice as to how they are split – 1, 2 or more charities can be supported with your 1% and One Percent Collective take care of all the transfers and admin for you.
Check out the flowchart and visuals at the bottom of this page and/or head to One Percent Collective to learn more.
Interested in how The Neonatal Trust supports families going through the stress and anxiety of a neonatal journey?
Here’s a gallery of support examples.
We get a lot of positive feedback from families in a neonatal unit who read these stories and feel strength, hope and positivity knowing that they are not alone going through these experiences and feeling certain emotions.
If you would like to discuss sharing the story of your neonatal journey, we’d love to hear from you. Please email email@example.com
How the One Percent Collective model works
If you’d like to consider supporting The Neonatal Trust through the great One Percent Collective model, learn more about how it works below.
It’s really as simple as 1, 2, 3 and in the example below we’ve shown a wonderful donor splitting their donation between The Neonatal Trust and Bellyful. The second graphic shows some of the many benefits of the One Percent Collective model.
Want to learn more? Head to www.onepercentcollective.org/