Life jacket

There was no trend in the families needing the expertise of the neonatal unit. Families from all walks of life found themselves pressing the security buzzer on the neonatal unit door. They stood there, just like us, impatiently waiting, imagining the worst because the nurses have taken 10 seconds longer to answer the buzzer, or worse still it has rung off. In those few extra seconds your heart rate rises by 100bpm. The only thing you can think is that they are having to work on your baby because something is terribly wrong. In that moment that’s all you’ve got. In reality it could be that they’re administering medication, a nurse may be on their break and all other sterile hands are busy, but as that parent, riding he neonatal rollercoaster, you aren’t thinking clear enough to rationalise that. You think the worst as you well know full well that things can change in a heartbeat.

Whoever those parents were, eagerly pacing the corridor, I just hoped that they were all as lucky as me and had the incredible support network I had behind me. From Day and Alfie, both sets of our parents, brothers, sisters, aunties, uncles, nieces, cousins, to our wider network of incredible friends. We were so blessed that we had each and every incredible person behind us, offering unreserved support, well-wishes and humour to cheer us up. Humour may sound a funny (ha!) thing to want and need, but without it, without seeing those stupid pictures/selfies that lit up my phone on a daily basis, I truly don’t know what I’d have done. All this from friends and family I may not see every single day, but I knew they were there. Always. And our relationships wouldn’t be the same if we were completely serious all the time, I needed to at least have my fingertips grasping at the edge of reality, because everything else was so out of the ordinary.

I truly was out of my depth.

Family and friends were my life jacket.

They were the same for Day and Alfie. They kept us afloat. Without them we would truly have drowned.

The weekdays seemed long, but when I look back now they seemed to go in a flash. Something I had never done was live alone. I didn’t go to university, I moved, age 23, from my parents house to the house Day and I bought together to make our family home. I was always a bit of a scaredy-cat to be honest. Mum and dad’s house is in a very rural area. I was terrified of the dark. The pitch black cloak that blanketed the fields, sheltering the movements unknown shadows as far as the eye could see in any direction. I used to scare myself silly, I loved the ghost stories while with friends, but alone in my room (even with my parents in the house) they terrified me. I moved from there to a terraced house in a small estate, consisting of 2 horseshoes of houses. Close enough to school and work, but out of the hustle and bustle of the town. When I say ‘town’ it’s nothing like the towns and cities of England! A traffic jam for us is more than 5 cars at the traffic lights! A very different way of life, a different commute. Crime was a rarity, and other than my imagination, there wasn’t much to be scared of. Compared to most, the Isle of Man was a safe place to live. Where as driving from the flat to the city centre we past a car that was on fire!

So you can imagine how terrified I was when I was staying in a flat, alone, where I was advised to ask security if they would escort me to and from the hospital if I was coming and going late at night.

I was eternally grateful to have visitors. They made me leave the hospital and take a break. Without them I would never have left. Those who live close by the hospital were able to go home and have some sense of normality. For me this was my everything. As much as I wanted to be by Arlo’s side, there was nothing I could do while I was there. It was incredibly upsetting and frustrating. It was emotionally draining and all consuming because as much as I couldn’t do anything for Arlo, I couldn’t bear to be away from him.

I had Alfie and Day, my parents and Days parents come and see me and Arlo. I had friends call on their way to or from events or trips away. Almost every single one of them cried when they saw Arlo. I don’t know if it was his size, the wires and tubes or that they were terrified of the future. Probably all 3. Every single person who saw him couldn’t believe how tiny he was. But a tiny baby he was putting up one hell of a fight.

Someone who visited me frequently was my amazing cousin Gill. Gill would travel up by train to visit me during the week. She would stay in Liverpool and work from the company’s Liverpool office. She would come to the hospital after she had finished work to come and see Arlo and then we would most likely go out for a quick meal before I got the bus/taxi back to the hospital. Those couple of hours away from the hospital, sitting across the table from a friendly face and talking about everything and nothing were invaluable. In the early days when I had moved across to the flat I was just week out from having a c-section, I found it difficult to get my shopping back to the flat to cook myself tea. Normally after a c-section you are at home with your new baby, hopefully with the support of a partner, family and friends. Gill asked me to text her a shopping list through so she could bring it up for me. I didn’t need much, cooking for one after rolling in at 8pm I didn’t require many inspiring ingredients. My mind wasn’t on culinary creativity at this particular time in my life. (I have sporadic spells of being creative!)

It was omelettes, beans on toast and fresh pasta and sauce for me! I’d written ‘cheese’ on my list, no specification, any cheese would do. When I opened the bag I was so pleased to see ‘Isle of Man creameries- vintage cheddar’ a little taste of home.

I was given a heart-shaped ornament from a friend, which I feel is applicable here, it said, ‘Friendship isn’t a big thing, it’s a million little things.’ And that was truly the case here. All these little things people were doing meant SO much to us all.

Gill had planned to come up and see us for 2 nights. She was coming up Monday afternoon and returning Wednesday morning, working Tuesday at the Liverpool office. I was in constant contact with her as it was still in the plan that Arlo would be travelling to Alder Hey for his surgical line. The only trouble was, Arlo hadn’t really recovered from his eventful weekend. Each day we were desperately hoping he would muster the strength for the journey to and surgery. Instead of his oxygen requirements dropping like they hoped as he recovered, they seemed to be creeping up. He was still his cheeky self and was still battling on. I was desperate to make plans and know what was happening. And at the moment I didn't know anything. I don’t like it when that’s the case. I’m always late EVERYTHING (I have even requested when the time comes that I am, in fact, late for my own funeral!) but I like to know what the plan is, so I can't turn up 20 minutes late. It seemed like we were back to day by day, I hoped we didn’t regress to hour by hour.

I was anxiously waiting for Arlo’s operation, but also because I was trying to plan a surprise for Alfie. It was his birthday in just a few days and I wanted to surprise him. Day and I were trying to cobble together a switcheroo. Day would come to Liverpool to spend some time with Arlo and I was going to go home for an overnight to see Alfie. My plan was that I would just turn up to pick him from school and spend the night at home, in my own bed after takin Alfie out for tea. I would drop him back to school the next day and return to Liverpool as day returned home. We would be like ships in the night, or more like planes passing each other amongst the clouds.

It was an unusually mild autumn morning was, the air was heavy and sticky as I made my way to the hospital. It was ‘muggy’ as my nanna would say! Making the final approach towards the infamous bronze statue of a lady and her baby, I noticed dark green lorry’s that hadn’t previously been there. They were parked right outside my old room. I realised these were for the ‘One Born Every Minute’ cameras and crew. Suddenly it dawned on me just how long we’d been there. At the beginning of my hospital stay, I had been asked if I wanted to take part in the show! To be honest I wasn’t sure it was for us, especially when we were so uncertain of the future. When I was asked it seemed like so long away, a long way away, but still not the end of my pregnancy. The realisation hit me that I should still be 32 (almost 33) weeks pregnant, but instead Arlo was almost 6 weeks old.

I trudged through the corridors, waiting to see what our incredible fighter would do and see how he was feeling today. There wasn’t much difference in his condition from yesterday, although those vent setting had ever so slightly been turned up. Arlo was also requiring a few ‘boosts’ of higher oxygen levels as he seemed to be having a few dips. The doctors said they simply couldn’t transport him because if he decided to dip his levels like that and didn’t recover quickly enough they had nowhere to go. If they were in hospital and that happened Arlo could be ‘bagged’ so the staff would manually breathe for him, squeezing air into his lungs, to restore his oxygen levels. This however, was a serious situation and required the emergency buzzer to be pressed and all available staff would come running. This simply could not be done in a moving ambulance. After getting the news we definitely wouldn’t be travelling to Alder Hey, I messaged Gill. She would come up and see me and Arlo and would stay for 2 nights.

I truly hoped this was just Arlo still in recovery from the weekend and that a few more days would make all the difference.

Gill had been working and then had travelled up by train, so instead of her coming to the hospital I met her at her hotel and we walked down to find somewhere to eat. We chose a Chinese restaurant for a change. On this occasion I chose a glass of wine to drink. I didn’t always as I was still expressing milk for Arlo 6-8 times a day. A recent check in the freezer had now revealed that my milk had overflowed and filled 2 full industrial freezer drawers. And with Arlo only having 2mls every 2 hours (which was currently on hold as he had bile in his ng tube) I decided that a ‘pump and dump’ so that Arlo didn’t get any of the alcohol from my milk, was the way forward tonight. At this time I was double-pumping 160-200ml every 3-4 hours day and night. The only reason I was carrying on was to maintain my supply so I could breastfeed Arlo when it came to that time.

We had a lovely meal and a walk there and back. Arriving back at Gill’s hotel I phoned the hospital quickly just to check how he was. I phoned the hospital number Ava pressed the button for nursery 7. Arlo was okay, but it wasn’t great news, his vent had had to be turned up even more, but this time it was quite a jump this time, just to keep his oxygen levels from dropping. I must admit, I was starting to get worried. We seemed to be starting down a slippery slope. I said my goodbyes to Gill and made back to the hospital in a taxi. I needed to be back by Arlo’s side.

Upon arrival he seemed settled. He just needed a little more help, but I couldn’t help but worry. Things had been going the other direction for so long. We’d been climbing that rollercoaster one click at a time, there was the stability- click,the diagnosis- click, the steroids-click, talk of changing to CPAP - click. It seemed however we had reached the top and now we were heading in a downward direction. I crossed everything, as I held Arlo’s tiny hand, that after this downward section we would be catapulted back up high again. I sat next to him with his tiny fingers in mine, willing with every ounce of strength on my body, hoping that my energy would transfer to him and make him strong in his recovery. I don’t know how long I sat there, I don’t know what time I left, but I know it was late. I kissed my fingers and placed them on his little cheek and whispered, “keep fighting.”

I knew when I left that I should contact security to escort me home, but I just needed to get back. Instead of being afraid and meek, I stood tall. All the way back I kept thinking, ‘Go on, try it.’ I’m sure I looked like a bulldog chewing a wasp! The fight I putting up for our son and family at that time was second to none. If someone dared to try and harm me or take my bag, I’m sure they would have lived to regret it. (I’m sure they wouldn’t and in hindsight I was pretty stupid!!)

I must admit, I never usually phoned the hospital during the night when I got up to express to check on Arlo. I had phoned them the first couple of weeks and I found that if his oxygen levels had momentarily gone up 5% for half an hour I would worry about it the rest of the night and not sleep and be too exhausted to function the next day. I felt secure in the fact that they would call me if they needed me and if there was anything to worry about. Tonight though, I felt I needed to ring. I needed to know how he was. He was settled and resting, his oxygen requirements had gone back down slightly.

The next day Gill arrived late afternoon and she, with me, went to see Arlo, or ‘Jimmy’ as he was now known because of a typo when messaging me. Once again, I watched Arlo’s visitor, I saw the emotion on her face when she looked at him. It truly brought it back to me seeing how people reacted when seeing Arlo. I don’t know if was just used to it, this was my norm, my everyday. Of course I still had my moments of being completely overwhelmed by it all, looking at the tubes and wires that were doing the job I should be doing, but for now at least, they were part and parcel of Arlo.

Arlo hadn’t had the best day. He was very unsettled and starting to become agitated. He was wrestling with his vent tube. Pushing it away with both his hands and shaking his head and pulling it away as if trying to pull it out. Eventually, after the doctor coming to see him it was decided they would increase Arlo’s sedation, which in turn would further increase his oxygen requirements. It wasn’t a good day. It was horrible to see him more sedated again, I didn’t like to see him so flat and without his fighting spirit. I hadn’t left the hospital all day. I’d grabbed a sandwich and sat in the parents room to eat it to minimise the time I was away from Arlo. I knew we wouldn’t be going anywhere for tea tonight.

Gill left the hospital in a taxi and went to go pick us up a pizza so I didn’t have to leave Arlo. For the second time that day I sat in the parents room for my meal. I was so grateful that Gill was there for some company. Feeling alone hadn’t really got to me since the early days, but now things weren’t going so well again I was scared.

I didn’t know what the future held, things certainly seemed to be on a downward spiral. I felt uneasy, like I didn’t want to leave Arlo alone for too long. And with just 36 hours till I should be leaving to surprise Alfie, I knew that too hung in the balance, but was seeming more and more unlikely.

For the second time in a week I was being forced to choose between my two children. It would have been easy to break down and lose my mind at the unfairness of it all, but I knew I had such a strong support network behind me.

Without those friends and family, I truly would have sunk. Even if they just took the edge off the extremity of the situation when you’re living with all those thoughts and worries inside your own head.

And for the second time in 2 nights I kissed my fingers and placed them on Arlo’s cheek, the closest thing I would get to a real kiss at the moment. I whispered to him to keep fighting and I willed all my strength to go into his body so he could repair his tiny body.

This time Gill walked me back to the flat before getting a taxi back to her hotel. I thanked her for coming. I knew she wished she could have done more, but the support and company was perfect.

This time walking home, the company made all the difference, I didn’t know if I had the energy to fight any potential thugs. I felt I was channelling all my energy into Arlo, and today I was running on empty. I collapsed into bed, and sunk into sleep like a stone sinking into the bottom of a lake.

I was hoping this sinking feeling would be the last and tomorrow we would turn the corner on this neonatal rollercoaster and be on the upward slope...

I hoped. I still had a slither of hope.

◦