Things were starting to stand still and we were starting to feel the silence again. It sounded silly but I needed to make our room at Ronald McDonald House, home. So, I set to work, placing out all the goodies I had brought back with us, the teddies, books, a ‘Santa baby’ suit that we had been gifted (just in case!) and Louis’ candle and butterfly figurine. It was all I could do to have some control over what we were currently living through. There had been no news on a bed for Leo at the Royal Children’s Hospital and as his observations had normalised there was therefore no progress to report. The Women’s was a busy little place, but things had not gone unnoticed, and for some reason, out of all the room doors on the fourth floor, our room had a picture of a blue butterfly! It had been playing on our minds, was it there for us? For Louis? Or had another baby passed since our arrival – we were scared to ask! But alas, one of the nurses asked about our trip home, about our family, did Leo have any siblings – yes, an older brother Charlie, who was four and half and another brother, Louis who was stillborn last year. The usual apologies followed, before I found the courage to ask about the butterfly on the door and my heart broke – it wasn’t for us. Another family had lost their baby and right before Christmas – I burst into tears. Obviously, they couldn’t go into detail but we knew the butterfly had appeared sometime after my arrival in Melbourne and there were a number of babies that had moved on during that time – all except for our friend in the corner. Life could just be so so horrible and I needed a minute, when I was met with kindness from a stranger out in the corridor. I didn’t know if the lady was on staff at the hospital or a family member, but she asked if there was anything she could do and told me ‘it’s important to remember it’s ok to cry.’ I wished there was a way of getting in contact with the family, to let them know they were not alone, but it just wouldn’t be ethical. Still, I knew this baby would forever be a part of our story and I would never stop wondering.
By Saturday, the days were starting to blur and with still no news, I started to become frustrated. We were so thankful that Leo was doing so well, because we knew what the alternative was and that was a completely unbearable thought – but we were stuck here, waiting, away from Charlie. I loved the Leo snuggles, but there was so much sitting around and so much out of our control, I just wasn’t coping. My skin was sore and I was almost always hot and wet from my overflow of milk supply. I began to know every inch of the hospital fourth floor corridor, almost like I was ‘seeing blind’, defiantly in survival mode! On top of everything, the Uber rides were getting weird. Unfortunately, I’m not sure of the regulations required to be an Uber driver, but after a series of questionable drivers, we decided to head home again the following morning. Our driver that night proceeded to take a phone-call and continue with their conversation (in foreign language), while they bounced their leg that hard at every red-light the entire car rocked. I began to strongly believe these drivers needed to undergo mental assessments prior to signing a contract. My only hope was they were at least cleared by a ‘Working With Children Check’, for obvious reasons!
The following morning saw us say goodbye again to our rainbow baby. However, leaving strict instructions with the nurses to contact us with any changes or news about movement to RCH! But, with no word given as we left, it didn’t seem likely – we just needed to hold out some hope of getting our littlest man home.
In a hope to cut down on travel time this trip, my parents agreed to meet us in Numurkah, bringing Charlie to us and of-course our Doti-Day too! It would be a quick trip again, but less busy this time and it was so good to just be home. It was still hot so I never ventured far from the air-conditioning, but the boys got busy out in the yard with a few jobs – you know father/son bonding. Followed by a quick dip in the pool before bed, which was defiantly not to wear our first born out at all!!!!!!
Later that evening, my phone rang. It was the Women’s. No news from the RCH, Leo was however, moving rooms. This wasn’t a bad thing, it meant his care was being downgraded from NICU to SCN, unfortunately though, for us, it just confirmed further that he wasn’t on his way to the RCH as we had so desperately anticipated. The nurses also reassured us that our little man was absolutely fine and had been well behaved in our absence.
It was honestly one of the hardest things, leaving him, while knowing he didn’t know any different – it just hurt and the only reference Charlie had to his baby Leo was photos and ‘Mummy pumping’ milk from her breasts.
We just had to keep going, keep saying goodbye, until we didn’t have to anymore, because that day would come. But for now, all we had was, soon . . .
Monday came and we were back in the car again – meeting my parents in Shepparton – saying goodbye – again. Again, the pain, the tears, the screams from our first baby. I had never walked away from our little Louis and it was killing me to walk away from his brothers. Mum pulled me into a tight hug – her being in the exact same position after the birth of my middle sister in 1986, my older sister, the one breaking her heart. She understood. She told me it would be ok and one day we would share stories about the time Leo was born and Charlie spent Christmas with his cousins – the same way we do now about the time my sister was born. My parents were well equipped with Charlie’s behaviour now, they knew they just needed to get moving and he would be ok. We would all be ok!
We were all feeling heavy, we knew that by now, Leo’s transfer to the RCH wouldn’t be going ahead today and most likely neither his EEG Monday as planned. It was just starting to feel like we were never going to get home. So off we went, back to Melbourne, again.
>>>>
Once back at the hospital, we were surprised to see our little man had graduated from the ‘LeobabyTN500’ cot and was soundly asleep in a standard open crib bassinet. He was still connected to the monitors but he looked so peaceful, so much bigger and there was so much more space without all the overhead equipment. The staff were lovely and the entirety of the room seemed less stressful, so while getting to know one of the nurses and the question was asked about feeding, I took my chance! ‘I want to start breast feeding,’ I stated. The nurse looked pleased at my disclosure and offered to help set us up immediately to start trying. I had been nervous that due to the nose tube, Leo would struggle to feed off the breast and having to actually work for it, but he did latch! It was sloppy and my boob was doing most of the work, squirting the overflow straight into his mouth, but it seemed to be working. It was a win and a small sense of reassurance that he was once again, defying the odds and on the right track.
We took the win and opted to head back to our accommodation for an early night, but not before heading across to the 7-Eleven to grab some snacks. It had become a tradition of ours and a cheaper option than ordering take-out for breakfast, lunch and dinner. We had actually been across at later hours of the night, but for some reason, it was busy tonight and as I circled back to Dave, it seemed he had company. An estranged man who was missing many teeth and quoting very closely into Dave’s face ‘you’re a lovely person and god bless you,’ the man said. He continued to rant on, stating the same sentence in several different ways before I intervened, ‘sorry, we’ve got to go, thank you.’
We didn’t speak until we had exited the store and we could see the man had found a new target. We knew the situation had the potential to escalate, especially as the same man was now having a lone fight with a traffic cone – we kept our distance!
When we were clear and strangely feeling safe within the inside of our Uber, my blood began to boil – I was over it and I was angry. Thankfully due to our previous experience, Dave sensed my anxiety and reached out for my hand. There was just so much going on yet nothing was happening all at the same time! I ate my dinner upstairs, alone that night and contemplated spending New Year’s Eve in Melbourne. I feared the silence, but tonight I welcomed it and it was actually one of the first times I took in my surroundings and observed some of the other families sharing in our situation.
Many young couples with children, absent parents or siblings in care, most having a late dinner, same as us. One family with a baby on the way and some in it for the long haul, like us, with no end in sight. I’m not proud to admit that I became to resent the other children around me – jealousy at its best – I just missed my boys and wished so much for us to finally be all together. Also, as a mother of a child expressing heightened behavioural issues and an educator who has seen it all, I was annoyed by the fact that we had rationally made the decision to have Charlie stay away. While knowing it wouldn’t be fair to him, yet others had chosen differently or didn’t have the option to do so, leaving us listening to other families collapse in communication. We understood, but it was a lot to witness others parenting styles and some of the language being fired across the room, usually followed by a scream-cry tantrum. Again, not my child, not my monkey, not my circus. Time for bed.
Tuesday morning, we took things slow and due to some late-night online shopping, we were rocking our own wheels that day. I had found a vintage Winnie the Pooh print frame on Facebook and had organised a drive to pick it up that afternoon. I’m not going to lie, I still hadn’t recovered from our Uber trauma, so, any excuse to drive really! But there was also something else we were set to do on our ventures and that was to visit Grandpa McLeod’s previous town-house, located on Park Drive. It was a trip down memory lane for everyone, with Dave reminiscing about time spent there while growing up and Denise sharing stories about spying the roof-top from the RCH. The place was literally within walking distance from both hospitals and housed five stories, including a basement, wrought iron fencing and balcony – it was historically beautiful. But unfortunately, no longer owned within the family. Luckily, we had made the time, because unbeknown to us, it would seem our little man was being scheduled for transfer to the RCH and soon!
'Our Little Louis' 