A New Low

Arriving at Arlo’s bedside the next day I felt numb. It’s hard to say why, I just did. The strain of the past few days hadn’t helped. As I gazed at my little fighter I felt something shift. He didn’t have the same air of determination he had previously had . He looked tired and drawn, he seemed to be struggling to maintain his oxygen levels, his sats machine constantly shouting; thirsty for more. His little body drinking oxygen like there was no tomorrow. His vent settings were constantly creeping up and he was requiring boost, after boost, after boost of 100% oxygen. I thought we’d hit rock bottom, but just as the dust settled there and I waited for those clinks of the rollercoaster chain pulling us up notch by notch, we dropped again. Crash.

I didn’t even need to ask on the doctors rounds, I knew the answer- there’s no way we would be going to Alder Hey anytime soon. If they wouldn’t transport Arlo the other day, they certainly weren’t going to transport him now.

Creak... surely we couldn’t get any lower...

If Arlo wasn’t stable enough and appeared to be getting worse by the minute there was no way I could leave him to go home and surprise Alfie for his birthday. Crrrrrreeeeeeakkkkk....

I was going to miss Alfie’s birthday. Last year he spent his birthday at Typhoon Lagoon and we ate at The Rainforest Cafe in Florida in the middle of a fantastic family holiday to Disney World with 12 members of the family. This year he would be spending it without his mum and his new brother who was hanging precariously by a thread on NICU.

Squeak. Creak. Squeal. Splinter. Boom.

SILENCE

CRASH!

The tears pooling in my eyes were the rising dust. We seemed to be on a different track now altogether, we'd dropped completely; the floor giving way underneath us. The things we were striving for just days ago, were now so far out of a reach they seemed unattainable.

As the dust settled as I was snapped back to reality by the bleeping of the sats machine. I blinked the tears from my eyes- not wanting to remove my hand from Arlo’s. Every moment was precious.

Another boost to 100%.

Unquenchable thirst.

He had a different nurse today, one he hadn’t had before. I was wary of new nurses, especially when I was feeling so vulnerable. I can’t remember her name now, but she was truly lovely and truly attentive to every one of Arlo’s needs. She cautiously hovered over him, wings spread , ready to change direction at any moment in reaction to the screams of the machines. She listened to every one of my concerns, having not had Arlo before in his 6 weeks of life, she knew I knew him better than anyone and she trusted my judgement. She made me feel truly valued as a mother, something that wasn’t an easy task in the NICU with an extremely sick baby.

She stood watching him and his monitors for a few moments and as his oxygen levels started to dip again she asked if I wanted to hold him. She said sometimes if babies aren’t feeling too well a cuddle from mummy is the best thing. This caught me completely off guard. I wouldn’t have said Arlo was anywhere near stable enough for a cuddle, but I also didn’t want to think of the other reason why she might be encouraging cuddles. I closed myself of and focused on the fact he would soon be in my arms.

The process of transferring him to me began. Moving the ventilator tubes to the outside of the incubator and delicately gathering all his tubes together, ensuring all the while that there wasn’t too much strain being put on the cannulas. It was a 2 nurse job, minimum.

For a brief, breath-holding moment they had to disconnect his vent in order to get him into my arms, before swiftly reconnecting it again. Arlo briefly protested at the disturbance, alarms dinging, before he moulded into my arms. The only place in the world he should be. It’s the most wonderful feeling in the world holding your new baby. And as a new mother I should be able to hold my tiny bundle anytime I liked, but it was an operation and a dangerous one at that. His precious lines needed to be protected. That’s why I hadn’t been able to hold him much and even though it was a bitter pill to swallow and I had to fight the overwhelming instinct as a mother, but I understood.

Ding. Ding. Ding. The alarm punched into the silence (or as silent as it could be in an nicu room!) my gaze was fixed on Arlo, he looked fine and settled to me, but with the amount of sedation he was receiving we would never know. I lifted my eyes and looked at the monitor expecting Arlo’s oxygen levels to be in the low 80’s, I knew if this was the case our cuddles would come to an abrupt end. To my absolute amazement, when I looked up at the machine Arlo’s oxygen levels were 100% and flashing, coupled with the singing machine, this meant he was over-saturating! The nurse came over and had to turn his vent settings down a notch. She smiled and said, “Sometimes a mummy’s cuddle is the best medicine.”

And just like the last time I held him- it truly was.

Holding him this time I felt different. The first time I held him I was told I was going to lose him. Everything seemed to be pointing that way the first time, and although no one had said as much this time I could feel the concern building. We didn’t know why his oxygen levels kept dropping; we didn’t know why he was agitated and had to be sedated; we didn’t know why he still didn’t have a drop of a white blood cell, but I did know that at that moment he was happiest in my arms.

I couldn’t help but stare at him, this tiny amazing bundle. Every day of his life was such a fight for him, all those machines doing the job of a mother; doing MY job. I watched his little chest rise and fall, knowing that the ventilator was breathing on his behalf. He was so fragile. I don’t think I took my eyes off him the whole time he was in my arms.

Eventually, I noticed he was starting to feel a little cold, so we decided it was time for him to return to his goldfish bowl. The return journey was just as fraught, but he settled quickly, dinging away at 100% after our cuddles. While he was happy, I slid away to grab some lunch and go and express.

It was a relief to me that the expressing room was empty today, I didn’t really feel like talking. I wanted to be in and out and back to Arlo’s side.

I remained there for the rest of the day, battling with myself. I knew he needed to rest and not be messed with, but I needed to touch him, I needed him to know I was there.

Earlier that morning, I had discovered he only had a few nappies left, so I knew at some point I was going to have to go into town and get some more.

It got to 5pm and I was just about to leave. When I touched Arlo I noticed that he was feeling cold, or in particular the left side of his body felt cold. I mentioned this to his nurse, she agreed, but wasn’t sure why this would be happening. She contacted the doctor who asked for a little blood pressure cuff to be put on both sides of his body so they could could see how his little heart was pumping.

I had been putting nappy shopping off all day, but I had to go. I walked quickly to the bus stop, I wanted to get there and back as fast as possible. The busy stop at The Women’s always made me laugh, it was the typical cliché; you could wait ages for a bus then three would come along at once. Except the three buses would usually come first, while I would be waiting to cross the busy road!

Today though, I seemed to time it right. As I walked across the road the traffic seemed to part like the Red Sea, the bus rolled towards me like the first returning wave.

I got off at the top of the street and headed straight for Boots. I swiftly picked up some size 0 nappies, the smallest available for the teeniest of bottoms! I picked up a couple of other bits and joined the queue. There were a couple of little comfort squares with little animals on in that convenient spot right next to the till! Of course I had to buy one for Arlo and one for his little friend Lily. As I was leaving the shop my phone rang, it was my mum and Alfie. I left the shop through the other exit as I didn’t want to go into the lifts and lose signal. (Manx superstition says you go out the way you came in!)

I chatted to them as I hung around the bottom of the steps. We talked about Alfie’s day at school and what he’d been up to. I noticed a voicemail come through. I told them I better head off and check it, but that I would speak to Alfie later on.

No one had my English number, I did wonder who it was that had left me a message. The message clicked in. I recognised the voice straight away. It was the lovely nurse from the hospital that Arlo had had near the start of our journey. She was the one I mentioned that kept apologising to Arlo every time she had to move him or pester him. Why was she ringing me?

This couldn’t be good.

It wasn’t good.

I listened to the words she was saying, but in the background I could hear all the alarms, chimes and dings. They all sounded like a bad one-man-band. Shrieking and colliding with the each other, each individual instrument hollering for attention. This was the background noise to the phone all, but it spoke as loud as the nurses words.

“Hi Sarah, it’s one of the nurses from the women’s hospital. Can you please call us back. Thank you.”

As much as she tried to hide it, the urgency in her voice gave her away.

This was bad. Very bad.

Wish shaking hands I simultaneously phoned the hospital number and hailed a taxi, dragging bags that clashed into my legs as I walked/stumbled/fell into the taxi and managed to communicate that I needed to get to the women’s hospital.

The same nurse answered. The background noise had died down slightly. I hope that was a good sign.

Arlo had had to be resuscitated. His oxygen levels and heart rate had dropped so low and he hadn’t recovered them. They’d had to give him cpr. He was still being closely monitored but they had got him back.

Got him back.

He’d died.

He’d died while I wasn’t there. The had to bring him back.

I feel I should have asked her lots of questions, but I didn’t have any, I just needed to get to my boys side. I hung up and somehow managed to call Day. I explained briefly what had happened and that I would call him when I knew more. I fumbled with my purse and retrieved a £5/10 note, the cost wouldn’t be more than £3, but now wasn’t the time for shuffling around with coins. I knew there was enough money heating up in the sweating palm of my hand to pay, so I could get out as fast as I could.

The taxi journey seemed to last forever! The streets passed by as if in slow motion; streetlight blur and bricks. It pulled up in the drop off area, he turned to me, as he did I thrust the note at him and swiftly thanked him. I don’t know if he was going to tell me the price, tell me not to pay, or give me change, nor did I care. It was wasting precious seconds. The door slammed shut before he opened his mouth.

I sprinted down the corridor, too hot and flustered in my coat, but not in a position to do anything about it. Even though I was in a hurry, the usual rules applied. I still had to wait to be buzzed in and I had to lock my stuff away in the lockers. There was no precision. I think I even used a foot to shoehorn the bags and my coat into a locker.

Walking into that room felt strange. An air of unease mixed with relief.

I washed my hands and sterilised them. The nurses were waiting to talk to me, I just knew it, I wanted to talk to them too. I could tell that they didn’t want to delay me from getting to Arlo, so words could wait.

I hesitated. I didn’t open the door to his goldfish bowl immediately. I took a moment to observe him. He was different. His eyes no longer shone, they no longer glistened, they appeared dull and lifeless.

Our gorgeous boy was still in there, somewhere, but he was hiding deep below. He looked exhausted from the battle. His fight almost non-existent.

As I looked closer I noticed the bruises. His tiny chest was smattered with bruises. I was about to ask what they were from when I realised the enormity of the situation. Arlo had been given chest compressions. Someone had jumped up and down on his tiny chest to bring him back to us. In their sheer determination they had bruised him.

It was then I broke. I’d seen him be ‘bagged’ before, but they was just oxygen being forced into his lungs.

The nurse explained that they’d had to work on him a good few minutes to get him back. I put my hand through to touch him. I needed to feel that skin to skin connection. I needed him to know I was there. I needed him to know I was sorry for leaving him. I needed him to know what I wasn’t going anywhere.

You’d have thought I’d have questions, but I didn’t. Things had been going downhill slowly. I felt like I was understanding that now. That tiny smidgin of hope had dissipated. We needed nothing short of a miracle right now. And as much as I didn’t want to admit it to myself, I knew.

“Is there anything we can do?”

“I don’t want to leave him, can I stay on the ward tonight please?” I snivelled through my sobs.

“Of course. It’s the least we can do. Do you want to see if you can get your partner here?”

This was new.

Squeak. Creak. Squeal. Splinter. Boom.

SILENCE

CRASH

This was a new low...