CW: This interview contains experiences with NICU 

Tell us a bit about yourself?

I am a daughter, sister, wife, and mother of four.  I’m a full time carer, advocate and voice for our eldest son. I work with families raising children with disabilities and have almost completed my studies to be a birth and postpartum doula. I am a lover of coffee, trying new recipes and championing others to own their choices and follow their dreams. I am all about spending quality time with our family, but am also a big fan of a cheeky mums night out. 

What were you doing before babies/children?

Before kids, I was working in retail, living in a share house, dreaming about travel, weekends away and the social events locked into my busy schedule…

How did you come to be a mum?

My partner (now husband) and I had only been together for 6 months when we found out I was 3 months pregnant.  After deciding we were going to stick together and become a family, we set about building our life together. We were young, in love and blissfully unaware of the life the universe had in store for us..

In 2014, at 28 weeks, abnormalities in our beautiful boys brain were discovered. This prompted a bunch of tests and scans showing that he was growth restricted and other organs were potentially affected, but ultimately that his brain hadn’t grown or developed properly. At 31 weeks he was diagnosed with neuronal migration disorder and we were offered termination. “Not compatible with life” is the phrase that was used.  At 37.5 weeks, nature did its thing - I went into labour and our gorgeous boy, Christopher Phillip was born. Alive. Tiny. Compromised. But alive.

Congenital Cytomegalovirus or CMV was confirmed two days later.  Over the following days we learnt that during pregnancy the virus had crossed the placenta and affected his liver, kidneys, spleen, heart, lungs, bone marrow, eyes, ears and, most severely, his brain. We spent every waking hour at the NICU, by his crib, showering him with our love, and the love of our extended family.  Miraculously, we were sent home just three weeks later with the cytotoxic medication, a list of referrals, a pile of paperwork, a teeny-tiny baby and no idea what we were doing.  Doctors were unable to give us an accurate prognosis.  “Take him home and love him while you can” they said.  So we did.  And we haven’t stopped.

In 2016, we made the big decision to give him a sibling.  And what a perfect breath of fresh air was our little Charlotte.  The most incredible little girl who looked upon her older brother with such adoration - she still does today. Watching them together is pure magic, and clearly bewitched us because we went on to grow our family by two more incredible little people. First Matilda in 2018 and finally Maxwell in 2021. All three of them share the most beautiful and unique bond with Christopher and we could not be prouder of the way they love upon, and care for one another.

Becoming a mum allowed me to unlock my true self. While Christopher has allowed me to see the world in more vivid colour, with deeper gratitude and fiercer love, our other babies, Charlotte, Matilda and Maxwell, remind me to ‘just breathe’, to truly enjoy life and soak up the sweet, sweet moments that are over all too soon. 

What has your feeding journey been like?

Just like each of my four children, each of their feeding journeys are unique and perfectly tailored to their individual needs and personalities. 

I was never able to breastfeed Christopher.  Despite my best efforts - my milk never came in. He was so weak and small, latching was difficult, the nasal cannulas and NG tubes got in the way, it was awkward and stressful and uncoordinated and just freaking horrible. The narrative I was playing on a loop in my head was that he needed my breastmilk to be ok. I was torturing myself, pumping around the clock to try and get a few drops of the liquid gold for my boy.  When he was three weeks old, a family friend said to me “if the worst thing that comes of this is that he is bottle fed, is that really so bad?”.  That question changed my life. I felt like the weight pinning me down at the chest was lifted and I could breathe. My love for him was not measured in how much milk my boobs could supply.  So I shifted my focus. I stoped pumping and allowed my self to blossom in his love. 

There were discussions about the possibility of NG tube / PEG feeding while we were still in the NICU, just days into his journey through life. But in true Christopher style, we didn’t need to revisit these conversations until he was three.  Until then he was bottle fed, and had even started some thick purees, but his swallow was compromised and it was getting harder and harder for him to put on weight. The CP causing him to expel more energy than he was able to consume. Not long after he had an NG tube put in, he started refusing oral feeds.  9 months later, in 2018, he had surgery to get a PEG and has been successfully tube fed ever since. He receives all hydration, nutrition and medication through the tube, and while it comes with its own set of challenges and concerns, it allows us to safely ensure he gets all he needs to thrive. 

When we had Charlotte, I assumed it would be difficult again, that my milk wouldn’t come in and we would end up bottle feeding but I wanted to give it a go. To my surprise, she latched straight away and my milk had come in before we left the hospital. She was a dream. I took my lead from her and she thrived. We introduced solids around 5 months and she loved it all. With the exception of tomatoes, she will eat (or at least try) anything we put in front of her. She began weaning herself around 9-10 months (when I fell pregnant with Matilda) and a week after her first birthday, she was done. A little sooner than my heart was ready for but that’s my Charlotte.

Matilda was a boobie fiend. She favoured it over all else, but was a snacker - not wanting to miss out on anything happening around her, or sit still, but not wanting to stray too far. The year she was born was our hardest year with Christopher. It was traumatic and exhausting and emotionally taxing on all of us. I truly believe that she was favouring me over all else, because she was seeking comfort. She was picking up on our stress and worry and concern for her brother and needed a sure fire way to feel safe and connected. But she was starting to refuse all other foods and was sucking the life out of me. I was wasting away and everything I consumed went to her. At 10 months I made the heartbreaking decision to wean her so that I could focus on my own health and well being. She was reluctant at first but once she discovered the joy of a bottle and the delight of a bowl of fruit or pasta, there was no turning back! We were both thriving and started to relax. 

And finally, Max, is two and a half and still going strong. He loves his food, kicking the footy with dad, playing ‘catch’ with his brother or dancing around the house with his sisters, but he AODRES his mummy. And I love being his safe space. While he is no longer needing / asking for a boob during the day, it is still his favourite way to go to sleep. It can sometimes take its toll, especially when things go haywire with Christopher’s health, but ultimately it is what works best for us. 

Feeding each of my babies, however I have fed them, has been a honour. I am beyond blessed that they are here with me, thriving and filling my days with love and light. 

What has sleep been like in your house?

Sleep is a precious commodity in our house. Christopher has never slept through. He still doesn’t. He requires medication around midnight and is often awake by 3-4am. Seizures, pain, discomfort or just seeking company - his needs vary. Some nights he is happy in his own company, others he needs help to settle. 

Charlotte has always been our best sleeper. She occasionally comes in to us overnight but for the most part is in her own bed all night. 

Matilda still ends up in our bed more nights than not. She is never properly awake when she comes in, just seeking connection and safety before dropping back off to sleep again. 

Max still wakes 1-2times a night. He needs a cuddle and often a boobie before settling again. 

We are very good at musical beds and often giggle about how much time we spend in the kids beds / how much space little people can take up in a king size bed! But ultimately we do what we can to ensure we all get as much sleep as possible. It is so important for our overall health and well being. 

The hardest bits…

• Watching them grow up in front of you - I wish I could pause time multiple times a day and just keep them in this precious space forever.

• The sleep deprivation. 

• Watching them in pain - especially if I can’t fix it. 

• Balancing everyone’s needs / the overstimulation

The best bits…

• Watching them grow up in front of you - I am so excited to see who / what they grow up to be, to share the awe with which they see the world and allowing them to teach me.

• Being their safe place / ultimate source of comfort

• Watching them all together - the love and connection they share melts my heart.

• The gratitude and wonder for the world they teach me daily.

How do you make time for yourself?

I have worked hard to give myself permission to look after and make time for myself.  I go to the gym early in the morning or after school drop off most week days. I try to make time for ‘a night off’ once a term. I carve out a ‘me-time moment’ each day - this could be a long bath or a quick cup of tea in the sun before I pick everyone up from school.

What’s next for you and your family?

We are moving out of our permanent survival mode and slowly climbing up into a space where we are all thriving.  I hope that we are able to stabilise here and allow our children to grow and truly enjoy the magic of this crazy thing called life.  

If you could talk to your pre baby/kid self, what advice would you give?

• You are stronger than you think and braver than you feel.  

• There is power in knowing that you are your baby’s world and the intuitive knowledge that comes with being their mum is invaluable.