What’s in a name? Leo; A powerful, dignified, and courageous spirit. It would seem a name fitting for our rainbow baby who was determined to bring in Christmas and the New Year earthside with his family. But his journey was just beginning and it would seem our story was due yet another turn – more than just an early arrival and admission into Special Care Nursery (SCN).
Alas, our story continued and just as we were all starting to relax, Leo took a turn for the worst as his oxygen levels started to momentarily drop and he was demonstrating ‘breath-holding spells’. This can also be linked to what they medically refer to as Apnoea of Prematurity (AOP) which happens when the baby’s brain forgets to breathe. These episodes, although common in babies born before 37 weeks, it was what followed that sparked the nurse’s concerns. Leo was also demonstrating seizure like behaviours, before going limp after turning blue. He was able to counteract his behaviour without intervention, however obviously not a ‘normal’ or rather, safe behaviour to be demonstrating.
Unfortunately, other than a general hint to Dave before leaving the hospital that night that, ‘Leo had held his breath and been given caffeine,’ we were none the wiser of the trauma that was unfolding. Both Dave and I had actually laughed the comment off, when in all reality, for Leo, he had been administered ‘Caffeine Citrate’, a stimulant drug to help stimulate respiratory drive. Acting as a methylxanthine, the drug was a combination of caffeine and citric acid!
But I let Dave leave, because I thought we were safe. Yes, Leo was in SCN but we had been prepared for that and I had been moved into room 12 on the ward which was right across the hallway – I was right there.
History was again repeating itself with midwife Maya attending to my every need that post-delivery night, however this time it was to help with my motherly duties – breastfeeding! She also checked in on our little man throughout the night, taking photos and bringing them back – he really was so beautiful! And both Maya and I were none the wiser.
I was having trouble shutting my brain off and still unable to move independently so I set my phone up with a movie. ‘Letters to Juliet’ played as I zoned in and out of sleep, I was sitting upright in the bed as I was more comfortable that way – that was until I looked down at my right hand. It felt weird and I couldn’t tell from the lighting off my phone but it looked swollen and it was sore – something was very wrong! I struggled to find the buzzer but I could hear Maya at the desk so I yelled out – I was so confused! Maya made her way in, along with another nurse. ‘There’s something wrong with my hand,’ the words stubbled out. Maya let out a laugh as she set sights on my indeed very swollen hand. She explained that it wasn’t an uncommon sight and it wasn’t cause for alarm at this stage, but they would need to remove my IV drip. The drip had been administering the remainder of antibiotics I had started earlier that day, which was now literally sitting in my hand! Obviously, something we would laugh about later, but far out! Anyway, Maya reassured me, the damage would not be permanent and my hand would return to normal size, eventually.
Before we knew it, it was early morning again and our little man had already been earthside for over 12 hours. It was not long after 6am and I had a doctor in my room, informing me that Leo’s ‘breath-holding spells’ had continued overnight – counting three in total, and they were talking about a transfer to Melbourne! I was again confused and starting to panic as the Doctor questioned my response, ‘were you aware of this?’ he asked. ‘No!’ I replied as I started to cry. Maya jumped to my defence and stated the maternity team had also not been informed. So then came a heap of medical jargon and reassurance that Leo was ok, but they wanted to be sure and for that to happen, he needed to be in the right place to receive the care he may need. I was honestly in shock and didn’t feel I could make these decisions on my own – I called Dave. I don’t even remember the conversation, but he would have caught the alarms – seizer – turning blue – Melbourne – transfer – he was on his way. Maya still by my side, she knew photos weren’t going to cut it this time and she offered to wheel the bed back into SCN – right beside our baby boy.
Just as our second meeting had been with our second born, Leo’s appearance had too changed. There were leads connected across his body, monitoring his heartrate, breathing and oxygen levels, but also tubing into his nose, something they called ‘high-flow’.
The nurses explained that the tubing or nasal prongs, ‘high-flow’ was a non-invasive respiratory support system delivering heated, humidified oxygen to help him breathe.
My hand was still swollen which was making things difficult while reaching into the crib to comfort our third born – he was so tiny! And my hand looked even more ridiculous next to him. It was also the first time I was able to take in the surroundings of SCN – the first time I was able to take in the fact that the room was completely decorated with Christmas bees! There he was, Harvey – sweet ‘baby b’ Harvey – born silent to twin Eloise. There was also a Winnie the Pooh and Eeyore figurine sitting on the main counter right in front of us – Louis – our little Louis.
To be honest I had felt energy from both boys since being admitted and I loved that room 12 was not only right beside SCN, but too, the memorial wall containing both the boy’s names. I felt as ease – nothing bad would happen to Leo, not with his two personal guardian angels – he would be just fine!
But he wasn’t fine and the nurses explained they had been in contact with Melbourne, both the Royal Children’s Hospital and The Royal Women’s Hospital. They agreed Leo needed a higher level of specialised care and a transfer via Paediatric and Neonatal Emergency Retrieval (PIPER) would be arranged. PIPER was a term I defiantly wasn’t familiar with – I knew of babies who had been transferred to Melbourne before, but the name PIPER didn’t ring a bell and it terrified me! The nurses explained that it was most likely not possible for a transfer for myself to be organised and it would depend on what form of transport as to whether even Dave could travel with our baby boy. This was all just getting too much and it was all a lot of information that wasn’t really a question, but a direction, including; ‘PIPER has called, they will be traveling via plane so no room for passengers and they’ll be here within the hour,’.
Thank God Dave had arrived and I felt myself ease again – even though there clearly weren’t any decisions left to make – the plane was on the runway and headed in our direction, ready to take our baby boy.
And that’s exactly what they did! Yes, they were polite, introduced themselves and handed us a flyer containing a number to call for any updates – but they had a job to do and once all Leo’s observations had been done, they wheeled him away. It was a quick kiss goodbye and he was gone – leaving Dave and I behind, left wondering, ‘What the bloody hell do we do now?’ It was clear I wasn’t going anywhere and wouldn’t be until discharged, so we discussed Dave heading to Melbourne. It was a horrible thought as our family had already been in two separate locations with Charlie being with my family in Benalla, and now our family was moving in three different directions. Charlie had family, I had Dave, but Leo would have no one – at 15 hours old, he would be in a big city and have no one!
For me, there was no choice, Dave needed to go and be with our third born and be his person. This unfortunately meant, I now would be the one on their own and it broke my heart. It was honestly the very last thing we had ever considered happening during this journey, yet here we were, I was recovering from my third c-section and endeavoured to spend the night on my own – again, without my baby – it was time to call in the troops!
My support system consisted of Mum and Dad, my sister Alysha, friends Lizzi and Taylor, Aunty Zelma and cousin Felicity – all of whom visited while I stay stuck on the Maternity ward, alone. There were of-course more friends and family who messaged and called also! That first day was a bit of a blur, everyone was exhausted, I needed sleep, Dave needed to pack and follow Leo to Melbourne – our first real goodbye.
Liz was the first to visit and the day had gotten away from me that quickly I hadn’t even gotten to the part of the story, informing her that Leo had been transferred to Melbourne – naturally I burst into tears when the time came to inform her face-to-face. I really was so thankful to see her face!
It wasn’t long before my parents, sister and of-course Charlie arrived. Alysha kept Charlie entertained while Mum and Dad caught up, not that we had a lot of details to pass on – we were completely in the dark. It had been hours since we had seen our baby boy and other than hearing that he had arrived, we had heard nothing.
I had been in contact with both Robyn and Danielle and both were worried about me staying on my own after the ordeal we had yet again endeavoured. But Dave needed to be with Leo, Charlie was safe and happy at Nannie and Papa’s and my sister’s had their own families – I would be ok – I had to be!
Danielle mentioned in her messages that ‘it was little Leo all along’ and that her and Robyn were with me all the way, ‘this little boy is meant to be here,’ she concluded. I felt completely surrounded by love and support – I would be ok!
Dave had arrived in Melbourne and was headed in to be with our boy and the nurses had been in contact, sending through photos and ensuring me I could call at any time. The photos they sent through were confronting – I knew they were well intended but the gens were obviously strong, because he looked like Louis. His eyes were shut and he was lying in a similar position to that of one of our photos of our forever baby boy – a blessing and trigger – something we would need to grow to love about him. Leo was his own person, but both Charlie and Louis would always be a part of him – their cells passed through him (microchimerism).
Somehow, I found myself able to sleep, uncomfortable but able. My body clock was all out, most likely due to my milk starting to come in and the medications, but it meant I was awake when Dave messaged through to say he was on his way back to his accommodation. This would become a part of our routine while separated. He was in his element, walking around the city late at night after visiting our baby boy – he had his job to do and he was excited to share the updates.
It wasn’t long before I became tired again and we said our goodnights.
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A very ‘fond’ and reminiscent memory of my recovery stay with Louis was the overnight voice-over announcements! Fast-forward to the precent, it’s 4am and a ‘code red’ is called. All automatic doors are open, beeping and the staff are yelling across the ward to each other in confusion. Needless to say, I was defiantly awake! I slowly got up out of bed and made my way down to the kitchen for a walk. The Christmas tree still beautifully lit, but there was more, the whole front room was lit up in flashing red and blue lights! There were four bloody fire trucks lined up out the front of the building!!! I knew code red meant ‘fire’ but I assumed it was a false alarm, meaning no fire trucks – apparently not! I made myself a coffee and set up in front of the window, watching the chaos unfolding – was there really a fire? We weren’t being evacuated so I assumed I was ok to just sit in my thoughts for a bit? And the thought appeared, the nurses at RWH had said I could call any time – so that’s exactly what I did! The nurse who answered the phone sounded lovely and she informed me that the Doctor was available and she would pass the phone over. Again, lovely and welcoming manor. Following some general questions, she informed me that they had observed one of Leo’s seizure like behaviours and would be in contact with RCH – who would advise of any medications moving forward. She didn’t have any answers, but she gave me hope she would find them – we said our goodbye’s.
Before I knew it, it was morning and I opened my eyes to yet another day in Shepparton – Dave and Leo in Melbourne – Charlie in Benalla – none of us anywhere near home.
Taylor and Liz were on my visitor list for the day, giving my parents a break from the travelling back and forth. I was calm and spent the day resting, recovering, relaxing. Taylor arrived before lunch, bringing flowers – she had been my rock for so long now and I’d be lost without her!
Dave had called and been back and forth to the hospital. Leo having an MRI and a seizure during the scanning process, it however had not registered on the monitors? Sparking more questions than answers – but what did that mean? Doctors also performed a lumber puncture (spinal tap), a medical procedure where a needle is inserted into the lower back to collect cerebrospinal fluid (CSF) for testing.
Dave tried his best to paint a picture of the RWH and the location Leo was in and at first, I actually thought Leo was only one of four babies in a NICU setting – very much not the case! He mentioned another baby within the room, who ‘had a lot more going on’ and a huge monitoring system set up. ‘He gets a lot of attention from the nurses,’ Dave said, stating that within the room, this baby would be allocated his own nurse and the other three babies may sometimes share the one single nurse, depending on staffing.
Lunch came and went and I got another sleep in during the afternoon before Liz returned. It was hard for me to remember I too was recovering from the delivery. I guess my focus was 100 per cent on our baby – I would recover – I’d been here twice before now, but I needed to give myself a break and be open to all we had been through. I continued to feel at ease within the safeguard of Louis, but I was also starting to understand Leo’s story was playing out exactly how it was supposed to, and we needed to let things run their course. Dave and I had always planned for a 2025 baby, the perfect tribute and follow on from our loss and grievance the year before. To be honest we had been a little disappointed when our first few attempts hadn’t been successful, almost feeling like we had missed our chance to finally bring our baby home? It was hard to explain, however the best way to describe it was, it felt like our Christmas wish hadn’t come true. A wish that we had doubled by wrapping and receiving not one, but two blankets under the tree to symbolise our hope of a baby for the year ahead. So, when we weren’t pregnant by April it just stung a bit, kind of like, when is it our turn for happiness again?
The nurses had expressed concern for my iron levels, due to the amount of blood I had lost during the delivery and words of a transfusion were thrown around. If this were to happen, I would need to stay put until Monday – which I was happy with to be honest!
Before I knew it, dinner had arrived and I had settled in for the night. Dave and I were starting to let more of the wider group know that Leo had arrived and that although he had been transferred to Melbourne, everyone was ok. Things were starting to feel safe again. Yes, we were separated, but we all had our people – our support systems. I peacefully drifted off to sleep, before being awoken to a familiar face peering in at me through the darkness. I had no idea what time it was, but I knew exactly who was checking in – it was Danielle. She was so gentle with her words before approaching for a cuddle – she was my person – she was our little Louis’ person and I felt warmth through her. I really did feel so surrounded by love, so much so, that I became emotional and unable to get back to sleep. I had been keeping up with my breast pumping, still colostrum yellow and I was emotional from all the hormones – time for coffee and a wonder down the hallway – a distraction! This had become a bit of a routine for me and each time I could feel myself getting stronger, slowly, but surely.
Upon one of my trips back to my room, Danielle stopped me from the main desk and asked what my plans were for discharge. I disclosed my comfort in staying as I currently didn’t actually have anywhere to be discharged to – no one was at home – Dave was in Melbourne and I wasn’t keen on heading across to Benalla. Danielle understood and noted my concerns, also questioned the happenings of the transfusion that had yet to be confirmed. Again, I peacefully returned to the land of sleepy nod.
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The following morning, the ‘3-day blues’ hit hard and after being informed my discharge was being questioned, I spiralled! The circumstances had changed due to my iron transfusion being cancelled, meaning I was on day three post-delivery and technically, physically fit for discharge. Things had jumped from staying on the ward until Monday, to being discharged TODAY! And after being informed by one of the midwifes, I started to overhear conversations being had at the nurse’s station – bringing me to tears. I wasn’t ready to be discharged. I was still waiting and hoping for my baby’s return, we didn’t have a plan in place AND it would be a huge inconvenience to get me to Melbourne TODAY! I honestly just felt blindsided. On paper, yes, I was day three and therefore due for discharge, but for whoever was calling the shots, they either didn’t care or weren’t aware of our past trauma. However, when I suggested the nurses call the Associate Director of Midwifery, my suggestion was denied due to it being the weekend. This was just insane and I was absolutely beside myself! How could this be happening again? I flat-out refused to go and called myself – in tears – requesting they do something! The call had gone through to voicemail and I tried as best I could to stay calm, but the tears kept coming as I tried to explain the situation. The nurses weren’t aware I had the number and that I had almost been promised the world if I were to deliver in Shepparton again. I didn’t like having to call and I did feel horrible for calling on a weekend, but I also needed support – which was honestly what I was seeking – someone to understand! I shouldn’t have needed to call and when Sandra had offered her number during our consultation earlier in the year, I hoped it wouldn’t be necessary. But here we were, being let down again. Still seeking that support, I called Dave – he was furious! He completely understood why I was upset and couldn’t believe these decisions were being made for me, without my consent. I was also aware the ward was not full, so I didn’t understand why they were pushing so hard? While on the phone to Dave, Sandra had tried returning my call, but I’d lost my nerve and just couldn’t answer the call.
She called again, again I didn’t answer – still on the phone to Dave, before I heard the phone ring from the nurse’s desk. It would seem someone was in trouble and due to Sandra not being able to get through to me, I’m guessing that was her voice I had just heard coming from the other end of the phone.
All while this was happening, Graham and Denise were heading in to pick up my milk supply and transport it down to Leo in Melbourne – they arrived to see me in such a state that they too, were not happy! To make matters worse they had been grumped at from ‘someone’ at the desk who stated ‘you’re out of visiting hours,’ followed by ‘oh I don’t know anything about that, you’ll have to ask the midwife.’ Denise became the comfort I needed and Graham became the voice I had lost, stating the facts and asking the hard-hitting questions. ‘Why was Maddy not able to be transferred onto the ward at the Women’s?’ ‘Was Leo returning?’ ‘What’s going on with the iron transfusion?’ Before stating, ‘our main priority is Maddy and getting this milk down to Melbourne,’ he concluded. I had actually never heard Graham put his words so sternly before and I was so thankful both him and Denise were there!
One of the midwives followed Graham back into the room in an attempt to smooth things over – it was all a lot to take in at once, but she did have the answers. Caitlyn, who we also had with Louis, had been at my bedside earlier that morning. She stroked the hair away from my face in a motherly nature before telling me to go back to sleep. Now, she reassured me she had arranged another night’s stay, but also explained that if I were to be transferred to Melbourne, they discharge their c-section deliveries on day two. She continued to explain due to my recovery and it being day three post-surgery, usually mothers wanted to go home. But there was nothing ‘usual’ about our situation. Yes, I had hidden behind the security of having the iron transfusion and therefore when that option was taken away, the real insecurities came out – but I had also never hidden those feelings. The whole reason behind returning to the same hospital we had endeavoured our loss was to find understanding for our grievance. It was just a circumstance that shouldn’t have come into play and it really did upset me – I wanted to stay, but now I unfortunately no longer felt welcome. I honestly felt that we had won the battle, but they would win the war and once I was discharged nothing would change. That was until I finally got the nerve to return Sandra’s phone call, and she made me feel validated again, all by one statement, ‘Maddy you’re facing leaving the hospital, again, without your baby,’ she said.
She disclosed that although she had been across my delivery, she was currently on annual leave and therefore panicked by hearing the news. She had intended to be back for our planned due date, so knew our baby had come early when receiving my call. I was so relieved she understood and although things had been sorted, she ensured me that these circumstances needed to be taken into account moving forward. I was disappointed that again, I had been made an example of, but I was also starting to realise that was our lives now – that was the whole meaning – how we would survive. It wasn’t fair, but that would be Louis’ legacy – change.
But for now, I was exhausted and heading back to bed!
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Before conking out, I had messaged my sister, Alysha, and asked her to come into the hospital. I had explained that there had been some drama with my discharge but everything had been sorted, I just needed some support.
Awake, I rang Mum and gave her the rundown – she too, offended by the lack of empathy. Thoughtfully, before all the drama, she and Dad had already planned on bringing Charlie across that afternoon for a visit – and the little man did not disappoint!
Charlie rocked up in his Christmas outfit, even with bells on! Wearing a Christmas bracelet that Jaycee had made him and grinning from ear to ear, dancing his way through the door. Leish took Charlie down to the Christmas tree while Mum, Dad and I discussed our plan for discharge – tomorrow! They had Dad’s family Christmas lunch planned at Ebony’s place so I felt bad for asking, but I needed someone to drive me down to Melbourne and Dad was notorious for his road knowledge! It would be an inconvenience and a huge day for everyone, but I was reassured they would make it work and I was feeling more at ease about my stay coming to an end. I would miss Charlie, but I was already missing Charlie and at least by making my way down to Melbourne, it would eliminate one part of our three-way separation.
I could still feel Louis all around me, especially through Charlie as he led my parents to his forever baby brother’s plaque on the memorial wall. It would be hard to leave but it was time to go and I needed to remember, Louis was with me everywhere, always.
That night went the same as the ones before, interrupted sleep, expressing milk, heat, loneliness and slow walks down to the lounge. Late night chats and a photo of Dave having a cuddle with our little man – it was beautiful and brought tears to my eyes.
It felt like I was finally, peacefully back to sleep and I was abruptly awoken by loud thunder, followed by hail smashing down onto the roof – the whole ward was awake! We were all looking out our windows, watching the golf-ball size hail stones bounce across the roof of emergency and below into the carpark. The noise was insane! Dani’s commentary making me laugh as I opened my door – she was chatting to one of the other mum’s, joking about one of the Doctor’s checking his car for hail damage. ‘Oh yeah because he’s checking his mercedes and here I am worried about my kluger!’ she laughed.
It was early and I wouldn’t be discharged until later that afternoon – with no plans, I headed back to bed – again!
Before I was discharged, there were two more people in my support system who were yet to visit – two people who understood my pain more than most – my aunty Zelma and cousin Felicity. They had both been keeping in-touch since the birth, but had been confused by all the details and thought I had been transferred to Melbourne with Leo, so wanted to catch me before discharge.
It was such a gloomy day outside and my visitors actually arrived with their umbrellas! It was nice to have the company and I’m sure I shared too many details about the birth but we were all able to see the funny side of things. Especially when I told them about the confusion of thinking Clinton was Brandon in the delivery room and that making absolutely no sense at all! We discussed the hard stuff too, Louis, Emily and the memorial wall just outside my door. I was thankful for the company while I received photos of Charlie living his best life at the family Christmas lunch – looking very grown up too!
It was an odd feeling to be leaving the ward, it had been my safe place for the past five days and although I was ready with my bags packed, I didn’t know I could make it out the door again – without my baby. While packing my things, I grabbed ‘puppy’ so not to leave him behind, but I couldn’t put him down – I guess I wouldn’t be leaving the hospital empty handed after all. ‘Puppy’ had become my comfort, my link to Louis. He was a replica of the comfort toy that had gone with Louis, and Mum had stitched his fabric heart into the blanket part. Louis and I both had hearts, swopping them right at the end – mine going with him and his forever with me. ‘Puppy’ had become my something to hold and he fit perfectly in the palm of my hand, he there as I stopped by the memorial wall one last time, he there to wipe the tears from my eyes as I turned my back and walk away.
'Our Little Louis' 