They don’t call neonatal a rollercoaster for nothing. We had climbed high, clogs turning, the chinking of the chains dragging us up and up from the depths notch by notch.I had been down there, with Day leaving, Arlo not making progress and being left alone, I was a mess. Day was so concerned about me being alone that he organised for one of my old friends to come visit. She only lived not so far away and I was so grateful for the company, just someone to come and sit with me for an hour or so, talking nonsense and catching up on gossip was exactly what I needed. And the fact Arlo had decided to turn a corner had made me much happier too.
I was flying high the next day, hoping we were moving forward, one baby-step at a time. The doctors were all amazed on their rounds that morning; they were pleased to be proved wrong by the little fireball in front of them, Arlo Arthur. I was immensely proud that he had shown them all what for! It was even commented upon that he was ‘showing off’ with his oxygen levels and the nitric oxide was being weaned down too. This had to be done ever-so-slowly though, he wasn’t happy if he noticed. They had to decrease it in detriments of 1 at a time, he was doing perfectly well and holding his own with this, however, if you turned it down by 2 notches – he most certainly let his feelings known, by setting off his alarms. You see, that’s how neonatal babies communicate, if they don’t like something they set their alarms off, just so you know not to do it again. This could be opening their incubator door, it’s like someone opening your bedroom door when you’re trying to sleep and injecting you against your will! And for poor Arlo, that happened LOTS! Sometimes the babies in the rooms had competitions; they couldn’t have anyone else having more attention than them! (I’ll come to this competitive streak later, when I talk about Arlo’s little friend, Lily.)
Arlo had a different nurse today, I hadn’t seen her before, but he wasn’t shy of showing her he didn’t want to be messed with. I sat back and watched her caring for Arlo. Her presence just emanated empathy towards these tiny babies she was caring for. Whenever she moved Arlo in a way he didn’t like or did anything he wasn’t happy with, or if she had to disturb him for the 5th time that hour for more medication, she apologised to him. I can hear her scouse twang saying, “Sorry, babe, sorry, sorry.” I was so touched, she was treating him with such dignity and respect it brought tears to my eyes. I knew when she was on and I wasn’t with him, that she was caring for him like a mother would. Like I would.
I was getting used to finding my way around the neonatal unit, the bright corridors the awareness of the ever-moving cogs caring for every baby on the unit. The quiet hustle and bustle in all the nurseries, the warm smiles the parents gave each other, the solidarity. It was our own subtle way of saying we were in this together without fist-bumping and saying, “solidarity sista!”
This was comradery was about to become the reason I got through the next few days.
I returned to Arlo’s room after going back to my room to express, I was yet to use the milking parlour on the neonatal unit. I still had the privacy of my own room. The doctor was stood next to Arlo’s bed. Now, I was always happy to see him being cared for, but there was something about the doctor’s face that told me she wasn’t happy. After I had gone through the ritual of washing, drying and disinfecting my hands, she told me they weren’t happy that Arlo’s infection indicators had risen. Instantly I was panic-stricken, we had been told that if he got an infection he wouldn’t be able to fight it. The doctor reassured me as much as she could, he was being put on wide-range antibiotics and his blood cultures would be sent off, as soon as they had the results of these his antibiotics would be changed and tailored to fight that specific infection. Unable to do anything- I sobbed. And sobbed and sobbed and sobbed. Completely helpless, I looked at this little fighter in front of me. He had come so far, he was making improvements, how could he be getting sicker? Arlo’s nurse came to comfort me, hugging me tight, but she didn’t have any words, and I didn’t have any for her. I felt like I should be asking them to do more, but I realised there was nothing more they could do. And there I was, free-falling down the other-side of the track, unable to do anything, flailing helplessly, screaming silently.
She left me for a while and I sat with Arlo, hand on him, skin to skin, letting him know I was there for him no-matter-what. I saw her talking to the doctor outside the door. Then they disappeared.
Day called and I left Aro’s side to go to the parent’s room to speak to him (or sob incoherent noises to him down the line). I just couldn’t hold it together and I hated feeling like I was feeling sorry for myself. Terrified, alone and fearful of what the future held for Arlo, it was just too much, and I was too emotional to cope with it.
After briefly updating Day on Arlo, I sat and gave myself a few moments to compose myself, only a few, I needed to get back to my boy’s side. As I stood up and moved toward the doors, two faces appeared in the glass, the nurse and doctor. They explained that they had spoken to one of the other mothers on the unit, a long-timer and very experienced at that. She was going to come and find me. I wasn’t sure as I didn’t want to be a burden to anyone else but they were adamant she didn’t mind as she, herself, had been there.
I met this lady at the expressing room sink while I was labelling my milk ready to put it in the freezer. She didn’t say anything; she just put her arms around me while I sobbed on her shoulder. After I soaked her top and the salty tears dried away (for now), she spoke. I remember distinctly her first words to me, “You won’t be the same person you were when you entered the neonatal unit.” Those words echoed in my head, because I was already a different person. I’d never dealt with anything like this before in my life, ever. I’d never felt emotions this strong or had to cope with anything completely on my own. In situations like this previously, Day had never left my side, he’d been a physical support as well as emotional.
Her name was Jo and her little girl was born at 23 weeks, she had been on the neonatal unit over 3 months. She told me about how they had had ‘the talk’ 4 times. They had been told their daughter was unlikely she would survive the night, 4 times. I looked at her and I could tell she had changed since her experience in neonatal began, I didn’t know her before, but I knew it had changed her by the way she spoke. And I knew then how much truth she spoke, this would change me forever too. We talked for a long time, as people moved through to the expressing room and back out again. After this encounter I knew I was changing too, no, I knew I had to change; I had to harden myself and become stronger. That’s who Arlo needed me to be, that’s who I would be. I couldn’t cry at every test result and let it break me down, as scary as it was, I needed to look at Arlo as a whole. As a whole in that moment he was making progress, no matter what some results on a piece of paper said, he was still reducing his nitric and still showing off with his oxygen levels. He was happy and content, and if he wasn’t he let everyone know. I had to put my trust in this incredible little fighter, I had to rely on him to let me know when things weren’t right.
I began to grow I confidence and my relationships with the other parents evolved into friendship, this was especially important for me being alone a lot of the time. I realised a lot of the mothers on the unit were alone too, they had been here so long that partners had to return to work and family visits were few and far between.
Now, in the corridor the solidarity nods become conversations, the waves and smiles become enquiries of how our little ones were doing, we became part of a team. An unsuspecting bunch of people thrust together in the most unlikely of circumstances came to rely on each other during the most difficult time of their lives.
Jo was right, I wouldn’t be that same person ever again.
Some things seemed to blend into one, other things stuck out to me and I didn’t know why. It is all clear now, but at the time it wasn’t. There was a little baby in the bed next to Arlo, we had brief conversations with his parents, they mentioned that Arlo was a name that was on their list as was Rocco. Rocco was the little boy who had been in the bed before Arlo. I had noticed his name on the wall behind the bed, and I smiled because that was a possible name for Arlo right up until the last second (thanks Ella). I found it comforting, familiar, that name was on the wall reminded me of a happier time at the start of the pregnancy when we had spoken about baby names with joy and excitement, before the conversations became too fragile and uncertain. Now I am comforted by the name Rocco for a different reason, I am happy to call his mum one of my friends and a great support to me. Even though our paths never crossed during our stays, they have now, even meeting up briefly last time I was in Liverpool. Tragically, Rocco passed away 2 days before Arlo was born, so his mummy, Lora, knows exactly what we have been through.