We were told to pack a bag with the intention that Leo would have maintained a steady weight gain and we would be moving out of SCN and back into the ward – where our journey should have begun – together. All we could do was hope. Hope that this would be it for us, our ‘beeline to home’. I had tried to call before leaving home that morning, to ask what the plans were, but the nurse who answered the phone hadn’t been with Leo and indicated there may have been some complications regarding another baby, or babies. I understood, of-course, but still I hated not knowing.
Upon arrival, it was evident that there had been stress within the four walls of SCN; again, I sat in Leo’s cubical in silence while the hustle and bustle continued around me. Sometimes you just knew when to be quiet.
Eventually I was greeted by a huge smile as the same nurse from yesterday entered Leo’s cubicle with good news! We weren’t out of the woods yet, but Leo had gained weight, therefore ‘mummy’s being readmitted!’ she said.
I thought; two more days, just two more days, I just had to get through two more days! But there were strings attached, and I would be following the SCN guidelines and structure. Holding Leo to the three hourly feeds, learning the entirety of the metabolic cocktail and how to administer each vitamin, each dosage, whether to add breast milk or crush two together. Along with taking over full documentation of temperature, feeds (left/right breast feed), nappies (wet/dry/soiled) and my favourite, the early morning weigh-in (before 6am!) It was a lot to take in and the metabolic cocktail was really stressing me out, but firstly I needed to settle into our new home for the next 48 hours.
We were moved into a large room onto the paediatric ward, this was due to the Maternity ward being at capacity. This meant I was off to the left of the SCN and through what was now an opened door, but would lock behind me if closed – great! It was a large open room with the bed to one side and bathroom to the other, but after setting up Leo’s toys that had followed us back from Melbourne I was feeling more at ease.
I was still stressing about all the medications, but the nurses were starting to walk me through some of the schedule and what mixed with breast milk, oil or water and which were crushed, grounded or left to dissolve. The nurses had been working alongside the team at the Women’s to restructure the schedule from individual doses spread evenly over a 24 hour period to something more family friendly. What this eventuated into was a schedule across an 18-hour layout, from 3am to 9pm. But I was also reassured that the nurses would be there to walk me through everything and we would take it step by step – today I would just be observing.
While waiting for Dave and Charlie to arrive, it was the first time Leo and I had actually been entirely alone and I cherished every minute! I thought to myself, this is how things were meant to be, just you and me – we can do this!!!
I felt like I could finally breathe, there was no hassle and bustle, no alarms, actual scheduled food arriving and an air-vent right above my bed keeping me cool – I was a happy lady! Leo was feeding entirely from the breast, meaning I didn’t need to pump and I was honestly just enjoying our freedom. I had the time to get acquainted with the schedule and all the different vitamins, but also organise things that we would need for home – a pill crusher – a pill cutter – a mortar and pestle. These were all products new to me and I actually felt very young and inexperienced when a ‘mortar and pestle’ needed to be explained to me and my reply was ‘oh for like witches’ potions and things’. Although I was picturing the right utensil, they’re more commonly known for mixing herbs and spices while cooking and I was about to become very acquainted!
The main components to the metabolic cocktail revolved around two vitamins, vitamin B1 (thiamine) and vitamin B2 (riboflavin), to be taken roughly every eight hours or TID (spreading the doses across your normal waking hours). All other components of the cocktail were to be taken once daily within these hours, ideally lining up before Leo’s three hourly feeds. Then I would need to change him, take his temperature and get him back to sleep.
We had also become very equipped with Vanish Oxi Action stain remover, both spray and powder due to the amount of yellow stained clothes coming home. The poor little bugger was having some kind of mixture before each feed and he was understandably not happy about it! Midmorning he would continue the cocktail by taking Pyridoxine and Vitamin D, before following up with vitamin B1 (thiamine) and vitamin B2 (riboflavin) around lunchtime. Then only every second day, taking CoQ10 – which had to be extracted by needle from the inside of the capsule. This was then followed by Biotin before concluding for the night one last time with vitamin B1 (thiamine) and vitamin B2 (riboflavin) again. It really was a lot!
Following some family time, it was an early dinner and time for some much-needed sleep! Because who knew how the night would pan out, it had been four and a half years since I had mothered a newborn after all. It was the strangest feeling having our rainbow baby asleep in the bassinette next to me, it was almost like a sense of peace had come over the both of us and we just ‘were’ in that moment – the way it had always meant to be. I was loving the cuddles and was finally starting to feel that ‘we get to take him home’ pride – the very same I had felt after delivery with Charlie. I actually hadn’t realised until now that amongst all the drama we had skipped that step, but now I was owning it and could finally see the light at the end of the tunnel.
To this point, I had been working with the same nurse regarding Leo’s care and vitamins. She walked me through each one, mainly preparing them herself but encouraging me to administer them and I was slowly starting to get my head around it all. I had been keeping up with documenting Leo’s temperature, feeding and nappy changes and so far, the night was going smoothly.
What I wasn’t prepared for was the shift swap over. Because the next thing I knew I had a different nurse approaching my door around 3am, asking me questions about Leo’s observations from the past few hours. Waking us both. It just felt a bit intrusive to be waking a sleeping mother and baby for observations that had already been recorded. But we all have a job to do and as we were all awake and it had been three hours since Leo’s last feed, I suggested we do the early morning weigh-in as it was my understanding it could be done anytime after 12am. This nurse stated the weigh-in should be done closer to the 6am feed. Ok . . . It was also time for Leo’s first dose of vitamin B1 (thiamine) and vitamin B2 (riboflavin), which she didn’t have with her and would need to organise.
While waiting, Leo became quite sooky and I decided that satisfying his hunger and keeping him calm was more important than ensuring he took the entirety of the mixture (the nurses had instructed he would be more inclined to take them on an empty stomach due to being hungry). Eventually we had the vitamins ready to go between the breast swap over, so it had all worked out in the end anyway – Leo, a happy, satisfied, sleeping baby again.
Until 6am when the same nurse opened my door again, again waking us both. From the doorway, she asked ‘are you coming to weigh the baby?’
Oh, I’m bringing the baby to you to weigh?! I thought. I was becoming annoyed. Alas off we went, pressing the buzzer on our way through into SCN to a portable baby scale for the early morning weigh-in.
All was well as Leo had put on 40grams since the morning before and I felt assured he was getting what he needed entirely from the breast and was satisfied. We had successfully made it through the night!
>>>>
Around 9am, the door opened again and I thought ‘for fucks sake!’ but thankfully I opened my eyes to a familiar face. It was Midwife Robyn from Numurkah. Instant relief! Honestly, I had been ready to pack my bags! The difference in her manner was, she observed that I was half asleep and backed out the door – was I dreaming? What was she doing here?
I’m not sure how much time had passed before she re-entered the room, almost skipping towards me to pull me in for a cuddle. ‘Congratulations!’ she said, before motioning toward Leo, ‘And you precious little boy, hello,’ she concluded.
Still feeling confused, I asked what she was doing here? She explained she had taken on the shift with nursery and would be looking after me for the day – again, relief! But also, humble. Robyn had been through our entire journey, we had cried together, we had spoken honestly and we had made sure this precious little boy arrived safely. She had been our strength when things felt too much and she would be the first to remind me, ‘you’re doing a wonderful job.’
Leo’s arrival couldn’t have been predicted but we knew the ending was near and were so thankful that things had finally started to, in Robyn’s words, ‘feel like things were more right now, when for so long it felt wrong.’
Although we hadn’t had the roughest night, I was keen to have a shower before Dave and Charlie returned. This now felt possible while leaving Leo in the most capable of hands – I couldn’t believe my luck!
She would stop back in at the end of her shift to wish us the best and remind me one last time ‘you’re doing a wonderful job.’
Although we now had the bigger room and as exciting as it was to be visiting his baby brother, Charlie quickly became bored by all the sitting around. Therefore, with a planned visit from my sisters that afternoon and current prospect, the boys headed for home.
The following shift change mirrored the previous day with the return of the same nurse who had been helping me with Leo’s vitamins.
Angela was great at explaining each individual part to the metabolic cocktail and I was keen to start preparing and administering on my own before heading home. Both the vitamin B1 (thiamine) and vitamin B2 (riboflavin) were to be cut in half, powdered down and mixed with breastmilk. Pyridoxine was mixing four 25m tablets to make up a 100m dosage, again mixed with breastmilk and the Vitamin D was simply put to Leo’s lips, administering two drops. Now the Biotin dosage was a little more complicated due to a change in brands after returning to Shepparton. Leo was to have a 10m dosage, however we only had access to 3m tablets, therefore we were to powder down four tablets, add 3mls of water and ONLY administer 2.5mls! Thankfully, Leo was happily feeding along between dosages. But after all the love and cuddles from his aunties that day, Leo was starting to become unsettled. This was then matched by my own insecurities when Angela informed us we would be bunking with another mum that night.
I completely understood a mum needing to be close to their baby and who was I to say no? But it defiantly rattled me and I wondered why my room? Really? It was just something else I would have to get through! And with Leo’s current mood, I was worried we would be in for a long night! I just didn’t need to feel even more like a fish swimming, or sinking! in a glass bowl with everyone watching.
Angela suggested another bath for Leo before we headed home as it would be one less thing we needed to worry about once FINALLY home! It would also hopefully improve the little grumpy bums mood!
>>>>
Turned out my intuition was spot-on and our night definitely did not go as smoothly as the night before. It was also ‘Murphy’s law’ that as soon as I got the little man to sleep, our guest showed up. She wasn’t loud and I never actually saw her, but as she fell soundly asleep, I was actually jealous and I wanted to protect her peacefulness. So, when Leo woke, I panicked and it became a long night of cuddles and transferring back and forth from the bassinette. Not to mention the numerous vomit explosions, bed changes and re-dressing of outfits we went through. It was just your typical night with a newborn – another sleeping mother beside us and a nurse who checked in every so often. This nurse seemed gentler with her approach than the nurse from the night before, so I just needed to breathe and continue counting down the hours until we could go home.
We were asleep when our guest left the room during the early hours of the morning, which was closely followed by another awake cycle between the three hourly feed schedule. Lots and lots of cuddles before the door opened again for the early morning weigh-in, followed by the same bluntness from the night before – rude. I guess we’d all had a rough night. But what came next, honestly left me speechless and was the absolute last straw – we were out of here!
After making our way into SCN for our very last weigh-in, that same question that had haunted me for the past three weeks was asked again. ‘Is this your first baby?’ again I stated, ‘no, he’s my third,’ before the response that followed was, ‘because I saw you asleep with your baby and that’s not a good idea,’ the nurse concluded.
I felt my whole world shatter and I felt a lump form in my throat as I tried to hold back the tears. I had been so sleep-deprived and now I felt I was being judged as a bad mother. I was pissed! Not only did this nurse not know about Louis, she knew nothing about me and I was angry. I had been pushed completely out of my comfort zone and I had said nothing and I still stood there and took the comment and said nothing! What was worse, she did the weigh-in and just walked off! I was left to re-dress Leo, before I stood awkwardly at the doors waiting for someone to unlock them. Leo began to fuss and I picked him up, but I was still standing there. I felt the lowest of the lows as I had to call out to another nurse that was sitting at the desk to open the doors. She jumped up and made her way across to me, apologising profusely before encouraging me to settle Leo back into his bassinette. ‘Safety first,’ she said. Again, I said nothing! I just walked back to my room, before bursting into tears. I wanted to walk out right then and there and I was feeling completely overwhelmed. It was really hard for me to explain, but what I was feeling was so similar to my stay after delivering Louis and knowing this world just wasn’t his place – he was destined for more. But Leo was meant to be home, with all of us, as a family and not here, not anymore. We had paid our dues and I couldn’t do it anymore.
I made note that the issues I had experienced during our stay should and could have easily been avoided. Once again, the system had let me down and I was going to make sure I did something about it! It had been a simple request to help me feel supported and safe, following the trauma of losing a child. A simple way to show respect for the baby we delivered in the very same hospital, respect for Louis, by simply knowing he existed – was that too much to ask?
My bag was packed, but by absolute torcher, it would be 3pm before discharge. Again, I just sat there and kept complying, saying ‘it’s ok, I understand.’
But I didn’t understand! We had been given the all clear and we were ready to go! What was taking so long?! By 2pm I called Dave and told him to make his way in because if the papers weren’t ready by then I was walking out! Miraculously though, the papers were ready and finally we were on our way – this was it – we were taking our baby home! Home, home, home!!!!!! We stopped by the memorial wall one last time, Charlie placing one hand upon Louis’ name while the other holding onto the pram. ‘We bring him home,’ he said, ‘let’s go home buddy,’ I replied.
