I Knew

The ready meal scolded my mouth and throat as I simultaneously swallowed bites and spoke to Day and Alfie on the phone, while chucking things into my bag for my stay at the hospital. Somehow I held it together to speak to Alfie, but when I spoke to Day I added sobbing to the list of multitasking activities. I know in situations like this people don’t eat, they don’t take care of themselves. The fact of the matter was, I had to. Being a type one diabetic, I needed to look after myself. If I didn’t there’s a high chance I could end up in hospital myself- too poorly to be there for Arlo and right now that was NOT an option. No one was there to look after me, medical condition wise, it was down to me. Even when times were dire I had to look after myself too.

It was now 7.30pm. Day was not going to get here tonight. Alfie was getting settled into bed. We spoke long and hard about what to do. We had to think rationally. There was were no flights at this time, and he wouldn’t make the last boat after dropping Alfie off. He wasn’t going to get to us until the morning.

I desperately needed Day with me, but deep down I knew there was a high chance Arlo would pass away before his dad arrived. I couldn’t even stop and think about my feelings. What would be would be, there was absolutely nothing I could do to change it, so what was the point in wasting my strength sobbing.

Arlo had been so poorly for all of his little life that this could have happened at anytime. I just had to deal with what came at me, and be there for Arlo, just as Day had to be there for Alfie right now. Those had been the unspoken words between us once again. We knew all along that it was a strong possibly I would be alone, if the time came, but verbalising it would have felt like we were planning for it to happen and for our own sanity we had to believe it wasn’t going to. Throughout this journey we had to believe that he was going to get better and return to hospital in the Isle of Man before returning home to us.

But now these conversations were happening for real. Day was always positive and telling me it would be ok and not to worry, usually his words pacified me, but not today. He was still trying to tell me not to worry, yet he wasn’t here seeing it play out in real-time. Arlo had stabilised after he had been resuscitated, maybe he thought things were going to be ok, or maybe he just wanted to keep me believing that until he arrived. So many things we seemed to be hiding from each other to keep each other strong, just like Arlo’s first night on earth, the words were unspoken.

I made it back to the hospital in record time. This time I didn’t need to stop at the lockers, my stay this time was to be longer. The neonatal unit had two bedrooms in the ward, where parents could stay with their babies before they were going home, now I knew they could be used for other reasons too. How naive I had been before. A few steps before I got to the room I met Lorraine, Lily’s mum. She knew what had happened. If she wasn’t sure, the look on my face said it all. And the look on hers told me she’d lived this. She had lost her precious George the day Arlo was born. It’s safe to say at this moment, I wasn’t certain Arlo was going to leave us, I just knew I needed to be close to him in case he took another turn for the worse.

The words spoken between us were brief, the whole exchange was brief, sometimes a look can communicate all you need. To reinforce our exchange, Lorraine said the only thing I needed to hear, “I’m here if you need me, please call me. Anytime. I can be here in minutes.” She understood my urgency to get back to Arlo. She’d been there. She’d lived it. She knew.

I found so much comfort in knowing that someone would be there for me in a heartbeat. I may not have had Day, but I knew I wasn’t alone and right now that mattered.

At the front desk, I waited for the nurse to get me the key and show me to my room for the night. The anxiety in the atmosphere had upped a notch, I don’t know if it was radiating from me or from the staff of the neonatal ward. I’m pretty sure it was both. They’d just had handover and it was clear that some of the staff had been briefed that there was an extremely sick baby on the ward. They were on high alert. They needed to be on high alert. At any moment that alarm could sound and they would have to spring into action to save a life. The threat of the alarm going off was always real, but right now it seemed imminent.

Rounding the corner to the room the nurse asked me if Day was coming over. I explained that it just wasn’t practical tonight. The water between us was the issue, if he was in the UK it would be different, he could just jump in the car and drive to us. The only way to us was by boat or plane. I was OK with it. I had to be. For tonight, those big rolling waves of the Irish Sea were churning up lots of troubles and many buried emotions, making them a reality.

I rattled down the corridor tonight, it was so much quieter than normal. I was one of the only parents on the unit at this time, most of the others had gone home, normally I would have gone home too (or to my temporary one at least). But not tonight. Tonight I was staying as close as I could to Arlo’s side.

The only parents that crossed my path were some ‘newbies.’ They stood out a mile; dressing-gowns, slippers, hospital tags, mother’s in sexy standard issue hospital stockings, faces awash with uncertainty, pure love, a dash of relief and excitement. If you’d have asked me at any other point if I’d consider going back to the beginning I’d have told you never in a million years, but right now, compared to the reality I was facing, I’d be there in a heartbeat. Just like the moon their hope was waxing, where as mine was waning.

‘Numb’ is used quite a lot, but I never really understood it. Now I did. There were so many emotions swirling round in my head that I couldn’t compute them, my brain’s defence mechanism was to shut them all down leaving me unable to feel anything. To deal with each situation as it arose. If I was to overthink each one I would simply combust.

As soon as I got to Arlo’s side I broke. Seeing him so poorly shattered my heart into millions of pieces. His colour had changed, his eyes bugged, he lay there machine breathing for him, and even that looked a dire effort. I had thought he always looked poorly, but compared to how he looked now he looked the picture of health. Right now he looked desperately, desperately ill.

Some of the nursing staff buzzed round me again. Asking if they could do anything to bring Day over. They’d been researching and as I already knew, there was no way of getting him here. They said their next port of call was contacting the RAF to helicopter to bring him over. At that point I had to intervene. It wasn’t practical. I know they were trying to help and I thanked them gratefully, but I politely reassured them that I we had spoken and we were aware of the possibilities and that Day would be here in the morning. Cautiously they backed away, unsure whether to believe that I was OK or not. I think they expected me to fall apart because Day couldn’t get here. so I felt they weren’t sure I was aware of the seriousness of the situation. They needn’t have worried, I was. I’d already fallen apart and now with Day’s support, I knew I had to be strong for Arlo and for us all.

Once again, this showed me the true compassion of the incredible nurses that do this job. It’s not all about sick babies, it’s about their families and covering every eventuality.

I perched next to him for hours, just holding his hand, cupping his head, letting him know I was there for him. It sounds so stupid, but I spoke to him lots in my head, hoping that if I willed them hard enough that my thoughts would travel through my veins, from my fingertips and into Arlo to pass on my messages. Tonight I couldn’t bring myself to tell him to keep fighting, it felt cruel, it felt like I was telling a marathon finisher to scrape themselves off the floor and run another. Equally, I couldn’t even contemplate the thought of telling him to stop.

Our precious boy, so brave.

At some time during the night I was shepherded to bed by the nurses. I don’t know what time it was. But I know I didn’t express my milk before I got into bed, I was exhausted through to my bones, but I didn’t expect to sleep.

Like a stone launched into a pond I plummeted into sleep. It wasn’t fitful, I didn’t toss and turn, I dropped to the depths of an ocean of pure exhaustion.

My 3AM expressing alarm dragged me out of a dark, dreamless sleep. I didn’t use this alarm for expressing initially, within moments I was back to see how Arlo was.

He had been stable since his earlier episode. His oxygen levels and heart rate satisfactory.

I had learnt earlier in this journey, however; look at the whole baby.

He still looked gravely ill and I couldn’t overlook that, but just under the surface I let a few bubbles of hope ripple to the surface. Maybe it was just a glitch, maybe he’d come back from this.

Again, I don’t know how long I stayed, but again I was shepherded back to bed by the concerned nurses, reassured that they would wake me if anything changed.

I expressed and tumbled back into bed, sinking into the mattress as I sunk once again into that heavy, black sleep.

For the second time an alarm woke me.

I knew it wasn’t my alarm.

I knew that alarm. I’d heard it before.

I knew herds of staff would be swarming down the corridor towards the source.

I knew.

It was Arlo.

I knew it was Arlo.

I was already on my way to the bedroom door when a knock confirmed my fears.

“It’s Arlo.”

I flew down the corridor and into his room. I could barely open the door due to the amount of staff surrounding Arlo’s tiny incubator. Every alarm screamed and hollered. I fought my way through and stared in disbelief. Everyone was on pins. Focused. I couldn’t actually see him, as if their force-field was protecting me.

A nurse stood next to me throughout. I was dumbstruck. My hands covered my mouth and nose as I stood there in complete shock. Shocked into helplessness.

The nurse gently lead me forward to be next to Arlo. I thought that’s where I needed to be.

I thought it would make me feel like I was helping in some way; I thought I had the strength to reach out and hold his hand, I didn’t. I couldn’t. It was too much. This was my tipping point. I couldn’t be there. Seeing what they were doing to his tiny body made me want to scream at them to stop, I didn’t want them to hurt him. But simultaneously I never wanted them to stop. I wanted them to carry on and get him back. I knew I had to step away and let them do their job.

There were so many doctors and nurses surrounding him, if anything it made me feed even more helpless, he needed their expertise more than he needed me at that moment.

I desperately wanted to run away, but I had to be there for him.

I could just about see his face from where I stood, he didn’t look like he had anything left to give.

The nurse was next to me again this time she stood next to me and held me firmly round my shoulders. I couldn’t cry, I couldn’t do anything, all I could do was stand and watch.

Frozen.

Numb.

The nurse spoke softly to me offering constant reassurance that they were doing everything they could. This was apparent from watching them. Every single doctor and nurse was willing with every fibre that he would pull through.

Just as I willed my feelings through to Arlo by touching him, I hoped he would feel how much everyone wanted him to come back.

Suddenly his heart rate began to pick up.

He was back.

Every single person in the room let out a breath they didn’t know they were holding as the whole room relaxed a little.

After an immeasurable amount of time, Arlo was back.

It was then I let the tears flow. They brought my boy back to life for a second time. As the staff slowly ebbed away, it made space for my to see my boy. It made space for the enormity of what had just happened to hit me. I just hung my head and placed my finger in his tiny hand. Just like the night before, I didn’t have the strength to tell him to keep fighting, I don’t think he had the strength to fight. He looked so worn and exhausted after his ordeal. It seemed unfair for me to will that of him. I just knew he needed me to be there.

His nurse today was Molly. He felt safe in her care; I felt safe with Arlo in her care.

I had to go and phone Day. He needed to be here.

I kept my vigil next to Arlo’s bedside, the doctors came and went but I barely remember speaking to them, I barely remember raising my eyes to meet them. I was exhausted, I hope they didn’t want me to fight, it was unfair of them to ask that of me. I just sat next to Arlo telling him how much we loved him and committing every part of him to memory.

His wide eyes, his button nose, his tiny tummy and little legs. His scar from his bone marrow aspirate, his sore hands and feet covered in their clear dressings, but we’re healing amazingly. The damaged skin, where the swelling had become too much, had scabbed over and under it his little hands were perfect. Pink. Fresh. New.

The staff were still doing everything they could to keep him alive and find out what was happening. Their determination was overwhelming. It made me feel so comforted and that there was a glimmer of hope still there that something could still be done.

As well as Molly, Arlo had a student nurse, Amy who was shadowing Molly for that shift. Still holding Arlo’s hand, I watched them fussing over him. Amy was fantastic and I had watched her grow over the weeks she’d been on the unit, but that day in Molly’s eyes, whatever Amy did didn’t seem to be good enough. It truly made me smile. In reality, I knew it was nothing to do with Amy, I knew it was Molly, unhappy with the situation that was unfolding, worrying, fussing to make sure everything was being done perfectly for Arlo.

Dr Bala come and scanned Arlo’s heart. The scan showed a thickening of his heart. This could have been because of the medication for his bone marrow or because of an infection. The trouble was Arlo always had high infection indicators, so it was almost impossible to tell if that’s what was causing these episodes.

The morning dragged on as I counted the seconds till Day arrived. I needed him more than ever. Arlo did too.

I’ve never been so glad to see him, I threw my arms around him. The hug was intense, but brief. I needed to bring him to Arlo. He seemed anxious to get to Arlo’s side, yet anxious to see him, worried about what was happening. I hadn’t really appreciated that it would be overwhelming for Day to walk into this situation. I had been living it. I knew.

After spending some time with Arlo, Day returned to the room. I felt he needed some time, so I left him, plus I didn’t want to leave Arlo. I returned to his side again.

The urge to scoop him up was overwhelming. I just wanted to take him away, from all this, away from the unspoken reality we were facing. I just wanted to squeeze him and tell him how loved he was. He looked so worn and tired of fighting. But still I didn’t know how things were going to play out. I was so torn. Looking at him you could tell he had nothing left to give, I felt he was telling us he’d had enough, yet if the doctors were scanning his heart, then surely they were looking at ways to make him better?

I was lost in my thoughts when yet another alarm shocked me into reality. Glancing up at Arlo’s screen, I froze. I felt goosebumps prickle at the back of my neck. His heart rate and oxygen levels began to plummet. Down and down. Lower and lower. His heart rate had been around 160bpm, it was in the 40s, matching his oxygen levels. I stood up and before I knew it I was in the middle of the room and the now familiar alarm was sounding, the one that summons everyone. Someone asked me if they wanted me to get Day. I think I nodded.

It was happening again. Surely they couldn’t bring him back again. I was swept to the other corner of the room, next to Lily and I was in Day’s arms. This time I sobbed uncontrollably while they worked on Arlo. I don’t know what it was, was it that I had seen everything unfold? Was I fearing this was the end? Was Arlo going to slip away from us? Or had I let myself crumble because I now had someone to hold me up?

All of the above factored.

I could hear the goings on, but I had my back to them, my eyes peering over Days shoulder out of the window. The trees softly swayed in the wind and the leaves gently fluttered to the ground, completely unaware of the horrors of Nursery 7.

It was so tense. Suspended between life and death.

I turned my head to see what was happening, but Day kept pulling me close, I don’t know whether this was to protect me or because he needed me there. We didn’t speak. No one said a word. What could we say?

The numbers began to rise. The communal exhale of air filled Nursery 7 once again. Before we had chance to rejoice we were gently swept away by Prof this office.

He came straight out with it, “I’m so sorry. It’s no longer a case of ‘if,’ it’s a case of ‘when.’ We can wait till the next time his oxygen levels and heart rate drop and let him go then, or we can withdraw treatment.”

For the first time Day began to cry. The enormity hitting him. I too cried, but not all out sobs, to be honest I think I was still crying from earlier, a steady stream. He was confirming what I already knew.

Somehow I found the strength to speak.

We didn’t discuss, there wasn’t time, but I knew it wasn’t fair for Arlo to carry on, for him to being forced to live when he was trying to slip away. I told him that I wanted Arlo to pass away peacefully in our arms. He had spent his whole little life surrounded by machines. We were not going to have a machine tell us he had gone. We wanted it to be private. Just us away from the beeps and screams of machines, away from the only home he’d ever known, away from the battleground where he’d fought for so long.

The doctors and nurses sprung into action as we crossed the corridor to our room.

We phoned our parents to let them know.

Then I changed my top.

I changed my top!

My baby was coming to us to die and I changed my top!

How ridiculous! But I couldn’t just sit there. I needed to be busy. My thought process (if I was still even capable) was that I needed skin to skin with Arlo. I needed more. I needed more than the finger to palm contact. I needed more. I needed to feel like I’d held my baby properly, something so many take for granted.

Day and I sat down together on the sofa in the room. Side by side. In complete silence. There was nothing to say. There were no words, just shock.

All too soon, but not soon enough Arlo arrived. He was brought to us in one of the cots they use on the maternity ward, the clear plastic ones. The stop-gap cots. Mummy’s tummy-hospital cot-home.

But Arlo wasn’t coming home. That was the only sure fact I had right now.

He had a little oxygen tank underneath his cot and a diffuser drip attached. Prof explained that the drip was pain relief so he would be comfortable. He wouldn’t feel a thing. Molly and Amy were there too as they handed us Arlo, I automatically put my arms out to receive him, and so did Day. He lay comfortably in our arms. Our first cuddle as parents and child.

The most natural cuddle we’d had. The last cuddle we were going to have.

We held him with his vent in place, cuddling him while he was still alive. It was so quiet. The only sounds were the faint whirr of the oxygen machine and our stifled sobs. All too soon Prof asked us if we would like him to remove the vent. This tore me in two. I wanted more time, but I knew it was prolonging Arlo’s suffering. I felt cheated, I wanted this cuddle to last forever, I never wanted to let go, but he had fought every second of his short life and now he deserved to be at peace.

The vent, his lifeline, was removed.

For the first time we were able to see his beautiful face without the obstruction of the vent. He truly was gorgeous. The gorgeous boy we had made. Our prince, our warrior, our fighter.

He had held on so valiantly for a cuddle with his daddy and so I wouldn’t be alone. Gently, silently, peacefully, like a feather on the soft breeze he left us.

There was no defining moment when we knew he’d left us. He just slipped away peacefully in our arms. The only place he should ever have been.

The battle was over.

No screaming machines.

No alarms sounding.

No more fighting.

Just love.

Safe from harm, cuddled in our arms.

Safe enough to fall asleep, one last time.