Ronald McDonald House Charities was something I had heard of over the years, either while supporting the Royal Children’s Hospital Good Friday Appeal or watching along with thousands of others while renovation competitions took place. But I had never been invested or taken much notice, until now. Dave had sorted his own accommodation for the week we had been apart, it had been within walking distance from the hospital and a basic four wall set up – costing him close to $600 for four nights! We didn’t know how long we would need to stay in Melbourne and obviously things would start to add up quickly.
The day I was discharged from Shepparton, Dave received a call from the North Fitzroy house at Casa Elda Vaccari offering us a room to stay, free of charge for as long as we needed. It did mean we would need to drive across to the hospital from now on but if we were honest, I wouldn’t have made the walk from Dave’s current accommodation anyway.
After a quick visit home to pack my bags and honestly pick up every animal I set my sights on to squeeze them tightly into a hug, we were on our way.
It was a long drive and I had attempted to pump for the first time using my own hand-powered breast pump (that I had used with Charlie also) and failed miserably! Thankfully, I had also packed an automatic pump, just in case, which would seem to be the case this time around. I could feel my boobs starting to fill, but there was nothing emptying so I was uncomfortable. Even more so when we stopped at Wallen to grab some dinner to go and a man picked up and held onto our order, while trying to order his own. Unfortunately, there had only been young staff on (from what I could see) and now that you have the option to order from the self-serve screens, the man, whom first language had not been English, had approached the counter and been met with this assumption – rather than actually being served. The poor guy just wanted a coffee and yet because the staff had not called our order number out, we were starting to question where our meals were. The guy was sent back and forth between the main counter and the barrister – all the while holding onto our food. Eventually it got sorted, but my anxiety had set in and I was exhausted! We kept the conversations short for the remainder of the drive, Dad laughing at my lacking sense of direction, before asking me to help locate the address. He had looked at the map and roads to take prior, I however had researched photos of the historic building. The Casa Elda Vaccari was situated in a repurposed 1915 substation, which had originally been converted by the Gualtiero Vaccari Foundation as a home for the elderly Italians for over 20 years. It was just a beautiful sight to see and I was excited to explore once settled – for now I was in tears at the sight of my husband who had met us down in the carpark and thrown his arms around me!
I was immediately taken in by the height of the inside of the building and the beautiful, massive toy elephant, giraffe and monkey welcoming everyone into the foyer – whom I would become quite acquainted with by the end of our visit! The place was just huge and filled with so many beautiful bits and pieces, donations, even a piano!
Mum and Dad didn’t stay long, we had places to be and they needed to get home. I could never understand how Dad continued to drive miles on miles when others were in need. He had always been the one to call and for someone who fell asleep at the drop of a hat, he somehow was always able to put in the hours of driving requested of him – I would be forever grateful!
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The Royal Women’s Hospital, Neonatal Intensive Care Unit and Special Care Nursery on the fourth floor, completely blew my mind! I was aware that Leo was in bed 38, but I didn’t realise that meant he was one of 50 or so beds, all of them hosting tiny little babies! The NICU rooms included four beds per room and the SCN rooms containing six to eight beds, all depending on the dependency of the babies within – it was a lot to take in.
Dave led me down the corridor as the rooms lined both sides, all containing night shift staff and incubated babies! The ‘Babyleo TN500’ incubator, the most commonly used. We honestly couldn’t make these coincidences up – our very own baby Leo set up in the namingly aligning, open care transitional crib.
And there he was, our baby Leo – my baby Leo, finally! My eyes had set sight on him again. There was a lot of hustle and bustle happening, nurses entering and exiting the room, calling out to each other from the room adjacent to cover ratios etc, again, it was a lot. But my everything was focused on our boy, and I couldn’t wait for a cuddle! He was still so little, but he had grown, in strength, he was a fighter and we would get through this and get home! Everyone was very attentive, welcoming me and giving us the run down from when Dave had been in last. Each baby had their own cubical and I couldn’t help but notice our little friend to the left that Dave had told me about, there defiantly was a lot more going on over in that back corner.
We were exhausted and every time Leo’s monitor alarmed, I felt panic – I had a lot to learn, while Dave stayed calm and explained what each reading meant. As the clock ticked over 12am and into the early hours of December 22, our rainbow baby was placed back into my arms and a new family photo, minus two, was taken of the three of us. We didn’t know it at the time, but this day would be the start of a new chapter in Leo’s journey, a chapter where we left behind the seizures.
Although Leo was bedded at the Women’s, it had actually been The Royal Children’s Hospital who called the shots regarding his care. Rather than continuing with anti-seizure medications, they instructed Leo start on a metabolic vitamin cocktail, including Coenzyme Q10, vitamin B1 (thiamine), vitamin B2 (riboflavin), vitamin B6 (pyridoxine) and vitamin B12 (cobalamine). At the time, Dave and I didn’t really understand the change but were just relieved the seizures had stopped and therefore didn’t need to continue with the harder drugs. But to me it was just a lot of words, a lot of yellow crushed vitamins mixed with breastmilk and I could only imagine what they tasted like as they hit tiny Leo’s stomach hourly. We sympathised with the little guy as his bedding started to become stained bright yellow from the reoccurring spit-up. We just didn’t really understand medically what was going on with our little man, we were so overwhelmed, but he was also doing so well so we chose to focus on that instead.
Dave wasn’t keen on travelling back and forth between the hospital and our accommodation, also parking was a nightmare and expensive. Therefore, we opted for Ubering – ironically, we probably spent just as much if we were to drive! But with my recovery I just couldn’t walk blocks on blocks daily, so Ubering it would be, for now anyway.
Pumping was an adjustment, one both Dave and I were struggling to get our heads around. My boobs ran at their own timetable, but I was also tired, hungry and hormone raging – literally sweating my arse off every time we entered the hospital!
Therefore, the following day we opted to hang around the hospital for the day and take things easy. Dave needing to get out and about again, me some down time by my little man’s side.
Unbeknown to us, this very day would be the day we would finally get an update, or rather, a planned time-frame for our little man. Again, there was a lot of medical jargon from the Doctors, but the words that hit hard were, ‘I’m not going to turn things around before tomorrow and get Leo home for Christmas.’ There was a big word mixed in there, mitochondrial I believe, again, I just didn’t understand and I was feeling overwhelmed. Due to results from the MRI being inconclusive, arrangements were being made for Leo to have what they called an EEG, which would need to be done at The Royal Children’s Hospital. However, currently there wasn’t a bed available and we were on the waitlist for this coming Sunday – depending on availability. It was just a lot to take in while they spoke of our son and the uncertainty of answers – I just needed a minute!
After excusing myself, I made my way down to the family room for a coffee, but there was a lot going on with parents and children everywhere and it was all just too much. Therefore, I made my way back to the feeding room, pulling the curtain across behind me. I burst into tears, knowing I would have to explain myself and my coffee if someone were to come in, but it took all I had just to let it all out! Soon, my phone was ringing, it was Dave – another Doctor had arrived – I made my way back to the room.
A consultant this time, who went into more detail about the MRI, explaining that it had shown the slightest almost white striped affect somewhere – I wish I remembered her wording, but it was something about, showing up in the parallel parts that run down the side of the brain. I want to say Lateral Ventricle, but I’m just not sure. She went on to discuss further the option of genetic testing, which could either provide answers or again reveal anything.
It was almost like we had nowhere to turn and it was all just a waiting game, but tomorrow was Christmas Eve! And there were several sleeps until Sunday! I was exhausted and needing some time to process so I finally set myself up next to our little man again, reclined my chair and put my planned birthing playlist to good use – I was asleep within minutes.
We were starting to feel the pull between all three boys, Leo was set to stay put for a few days yet and the idea of not spending Christmas with family and Charlie was a horrible thought, but how would we make it work? Upon waking and Dave’s return we discussed heading home Christmas Eve after visiting Leo that morning, picking Charlie up from Benalla on our way, before stopping over for dinner at the cemetery with Louis that night. We would spend Christmas morning together, before stopping over at Dave’s parents on our way back to Benalla for lunch. Where we would need to say goodbye and return back to Melbourne – back to Leo.
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Our alarms were set for 6am the morning of Christmas Eve. We were to pack up our room and check out for the night, giving another family the opportunity to stay if in need. Ronald McDonald House had been amazing regarding our circumstances, and although we were to check out, their staff had booked us back in for the following night and into a larger room on the main floor. We said our good-byes and headed to the hospital in a hope to make it in time for the morning ‘Doctor rounds’. Before Leo’s arrival, I had only read about other people’s experiences of these rounds, and how within some hospitals they requested the families wear noise-cancelling headphones to ensure confidentiality. This would be my first experience and it was hard to hear our little friend over in the corner’s ordeal next to us – he really was having a hard time! We felt for his family and could only hope, he, like Leo, could put the worst behind him and be on the path to healing soon.
There was no new news regarding Leo’s care, so after expressing and grabbing something to eat we somehow said good-bye to our littlest man and were on our way. The relief I felt from traveling in our own car with our own music and temperature control was exactly what I needed – still I didn’t sleep the entire way!
The reunion with Charlie was something we will never forget! Here he was running out the front door of my parent’s house, somehow taller than we remembered and a smile as big as the suns above. I had worried he wouldn’t want to leave with us, but after a short stop over, he jumped in the car without hesitation. But there was another little friend waiting at Mum and Dad’s for us, one whom I hadn’t seen since the very morning my water had broken – my beautiful girl, Doti-Day. She was my number one sidekick and my god had I missed her! We all hopped in the car, ready to spend the night at home together as a family, as best we could.
Once home, there was a surprise waiting that brought tears to my eyes. While away I had felt Dave’s stress about the state we had left the pool, so I had contacted my cousin to see if he could help out – he had however declined.
From what we were seeing before our eyes, this would not seem the case! There we stood looking at a fully functioning pool, filter connected and humming away, and a fresh delivery of water currently being chlorinated. We weren’t sure who and how all of this had come together but we were just so incredibly grateful that a huge weight had been taken off our shoulders. Yes, it wasn’t a priority in the grand scheme of things but it had been in the back of our minds, something we would have to deal with once home – knowing that we would most likely need to start all over again. Now, we could release the worries, knowing it was there to enjoy once home – it was part of our Christmas plan after all. I could hardly put the words together as Charlie excitably ran around shouting, ‘a pool! What? Who done this?’ It was just so unbelievably kind that someone had given their time to help us out, we were later to find out, it was many ‘someones’ and included a few freebies or two – the spirit of Christmas had defiantly shone brightly over our ‘grand old lady’ this year.
Still there was a lot to do, however being as unorganised as we were, a lot couldn’t be done until after Charlie had gone to bed so we spent the evening just enjoying being back in our own space. We had an early dinner at the cemetery under the rotunda with Louis, celebrating the safe arrival of his baby brother and blowing lots of kisses! Before headed back home to pick up the neighbours for our traditional Christmas Eve, Christmas light looking. The girls throwing their arms around me in excitement for the arrival of our little man! Dave took on a chauffeuring role, escorting the children around some of the more in-depth light displays, while I happily sat in as passenger princess.
Once home, we had a bedtime routine to get through with Charlie and then finally we could sprinkle the final touches of Christmas magic around the room, including putting together a very special big boy bike. Somehow, we got everything together and got to bed before midnight.
The morning of December 25th, 2025, Dave and I woke to a very excited little boy running down the hallway. Again, our morning was absolutely unorganised, we opened our presents, packed the car and headed into Graham and Denise’s for breakfast – because you better believe we had no food in the house!
The whole day was very bitter-sweet, we had so much to pack into not enough hours in the day and pumping was starting to take its toll on my body – I was absolutely exhausted! I was pumping two 60ml bottles every three hours, my boobs hurt and I was actually overcome by emotions – crying or even falling asleep while doing so. I had always been honest about not being a loving breast-feeding mother, but I had honestly forgotten the entirety and overwhelming control breast feeding could empower. Regardless, we needed to keep moving, so once again, we were back into the car and tooting the horn as we drove past the cemetery on our way out of Numurkah and making our way back to Benalla.
My family had been celebrating since mid-morning and as it was now after lunch, Mum had put aside some food for us to enjoy once we arrived. It wasn’t the traditional lunch we were used to, but there was nothing traditional about this Christmas – we just needed to keep going! And for me, keep pumping!
Somehow my Mum and sisters had pulled together last-minute presents for our newest and littlest addition – including a whole bag of size 00000 clothes! Along with of-course spoiling Charlie and something special for Louis too.
Things were so different to what last year had been, the grief still so heavy and emptiness we had felt inside, almost felt whole again and here we were celebrating all three of our boys. All the hope and wishing for an earthside baby by Christmas had somehow become almost like a Christmas miracle – the seizures had stopped and Leo was ok. But he was still in Melbourne and eventually we would have to say good-bye and things would get hard again. We didn’t want to leave, but we just couldn’t stay, we needed to get back to our littlest one – even though it would mean breaking the heart of our biggest one.
Something that sits strongly with me from this day, was the memory of Charlie screaming after his baby brother being driven away by hearse on the day we said good-bye. This day, it was the same scream, only it was for us. ‘No stay with me Mummy,’ Charlie screamed as he clung to my body. ‘I want you to stay HERE!’ The tears were coming hard and fast and I had to remind myself to breathe. I explained to Charlie that he needed to be strong and just as we had said good-bye to Louis and blown him a kiss the night before, wishing him a Merry Christmas – right now we needed to do the same. We were all in tears, my Mum, sister and Grandma included! Charlie didn’t understand and he was vocally telling us ‘stay here with me!’ My Dad stepped in, leading Charlie outside to his cousins and Dave and I walked away. It took me until we were already on the freeway before I could take a breath, I had completely broken down. Obviously, we were so grateful for Leo and his safe arrival, but we had lost Louis and Charlie had lived through that with us too – we had already been through so much hurt. We had spent the past eight months telling Charlie ‘we bring this one home,’ but we hadn’t yet, instead we were leaving our first born behind. Everything just hurt and I was feeling an overwhelming amount of ‘mum guilt’ along with fear, physical tiredness, hormones and everything in between!
This wasn’t a new feeling for me, so I tried to counteract my emotions by packing some items from home to decorate our room upon return to Ronald McDonald House. Some of these items included Christmas presents, Louis’ candle and butterfly, books to read to Leo, cards and lots and lots of cute teddies we had been gifted. We didn’t know how long this part of Leo’s journey would continue so it was the little things that we could control, we chose to cherish – but before we made this place home again, there was one more little man waiting for his Mummy and Daddy to wish him his very first Merry Christmas.
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The staff at the Women’s did not disappoint! Here was our little man, sound asleep, with the cutest hand-knitted Santa hat and a printed certificate stating his presence at the hospital this Christmas. There were more presents too, this time from an organisation named NICU Cheer with a card stating ‘Merry Christmas to your sweet NICU baby from our NICU grad Ashton, born at 30 weeks in 2016!’ But the best part were the matching Christmas fabric love hearts to share between Mummy and baby – the very same I had shared with our little Louis – the very same that was now attached to ‘puppy’. It was so beautiful and such a comfort to see that more hospitals were using the same technique to keep mothers and their babies together. Again, it was the little things we chose to cherish.
It was late and we had covered more than seven hours travel time over the past two days, it was hot and I had pumped over 400mls of breast milk since leaving Melbourne the day before – we were exhausted! After a cuddle and many kisses, we headed back to our accommodation once more.
But I slept through and forgot to pump overnight so the following morning was excruciating! Derailing the entire day that followed. It was Boxing Day and I was stuck sitting among many in the emergency room of the Women’s – possible mastitis – defiantly engorgement. I felt hot, but I always felt hot, I felt ackey and disoriented, I was still recovering and there had been a lot of miles and now the elevators were back. The truth was I was run down and my milk supply was excessive! The doctor’s advised cool packs and proscribed antibiotics if symptoms persisted to keep ahead of any progressions.
I set myself up next to the little man, reclined the chair and fell soundly asleep.
'Our Little Louis' 