The Next 80 Days

Monday 30th September 2019

I’m writing this on my outdated WordPress app, sitting on the bed, Lugh is swaddled up beside me like a little burrito. He’s wearing a white beanie on his head, made from a bandage, hiding a cannula beneath. The bedsheets are sterile, cold, and the colour of toothpaste. It’s day 14 on the children’s ward, and we miss home.

Friday 4th October 2019

On August 29th, after 147 days in hospital, we were finally discharged. Words cannot describe that feeling; there were days when my thoughts got the better of me, and I was afraid we would never bring our baby home. Our little boy was five months old when he first felt fresh air on his face; when the light that reflected off his soft skin didn’t come from an indoor light, but was natural and illuminating, fresh from the sun. His lungs breathed in oxygen from the trees that surrounded the buildings, and not from his nasal prongs, or the air con above his little cot. My face was sore from all the smiling and the tears as we carried him downstairs in his car seat – he looked like a doll, petite and perfect. In our hands were his discharge letters – his first five months printed in 8 pages. Within each page a list of his various ailments: ivh grade 1, chronic lung disease/bronchopulmonary dysplasia, pda/asd, metabolic bone disease, NEC, mrsa, sepsis, pneumonia, ROP, lazer eye surgery, hernia surgery… Our little man had everything and appeared phased by nothing. We were coming home on oxygen, and hooked up to a Sats monitor, but that was okay, we didn’t care, we would finally be home, all three of us, as a family.

Those 10 days at home were magical. Exhausting, but magical. We were living life with a newborn, five months late. I kept looking for his chart to log his nappy changes, sat probe change site, length of breastfeeds and blood oxygen levels, before I caught myself on and remembered that I didn’t have to do that anymore. We sat on the sofa, surrounded by empty syringes, as if in a drug den; each syringe containing the reminents of his eight medications. He watched Pointless and The Chase, and daytime quiz shows, and his mesmerised eyes would follow the bright colours and repetitive sounds. I watched him, and counted the silver scars left on his hand from the countless needles that pierced his perfect skin. The Neonatal Unit seemed like a dream now; otherworldly even, when I thought back to it.

Our first readmission happened on day 11 of homelife. Lugh had been pretty grizzly for a couple of days, a temperament we attributed to the toxic combination of reflux, colic, and a developmental leap. He was one angry baby. Unfortunately, when Lugh gets angry and cries and gets very distressed, he completely wrecks himself as his lungs just aren’t strong enough, because he was born 15 weeks early and the lungs are the last organ to develop. He was angry because he was hungry, but was too distressed to feed, and when we noticed he was working a bit too hard to breathe through all of the hunger and the tears we thought a trip to A&E would be best. So after sheltering Lugh from crowded places and the general public, and avoiding anybody with a cough or a sniffle, we drove 50 minutes to bring him to ground zero of germs, and spent 3 and a half hours in A&E, with Lugh still on hunger strike.

Everyone commented on how small he was. “Awk look at the wee baby, how old is he?” 5 months I’d answer, and watch them gawk back, shocked and open mouthed. “Oh he’s so tiny”. Yeah, he was born at 25 weeks, I’d say, awkwardly, hoping they wouldn’t pry too much more. Please don’t touch him with your germy hands, was all I could think. We went for his xray. We sat back in the cubical behind the curtain. We listened to the sick people cough and splutter on the other side of the wall. After almost 4 hours an attendant came to our hospital cubical with a wheelchair to bring us to the children’s ward. I thought this very strange – Lugh can’t walk. Why bring a wheelchair? What a waste of resources. “You sit down there and hold him” the attendant says to me, so I thought happy days, and I sat down, no questions asked. He wheeled us through staring eyes until we reached our room in the children’s ward. The nurses looked concerned and asked us what was wrong while they took his observations, and when I explained that he wasn’t feeding and seemed to be breathing a bit harder the nurse suggested I offer the boob to see what he does. And after 9 hours of hunger strike, Lugh, loveable little Lugh, latched on. And I looked at him, and then to the nurse, and then to his dad, who had his head in his hands, and was shaking it from side to side.

The xray results came back and showed that Lugh’s lungs had filled with fluid again, and he required diuretics to prevent further pulmonary edema. This wasn’t new. Lugh has two main issues resulting from his prematurity: a pda (or, patent ductus arteriosus) and chronic lung disease or, bronchopulmonary dysplasia (CLD/bpd). The former, a hole in the heart, causes excess bloodflow to the lungs, and the latter, caused by his extreme prematurity and lung damage from ventilation, makes it difficult to shift the fluid and gunk. Together they made for a fortnightly to monthly diuretic flush out to help our little boy breathe a bit better.

We stayed in hospital 4 days before being sent home on diuretics, and a letter for a follow up appointment at the Rapid Response Unit to monitor his bloods, making sure the diuretics weren’t causing him to lose too many electrolytes. We enjoyed another 5 days at home – TV, cuddles, walks in the park – and then on Monday, travelled to our appointment to check his wee bloods. I had noticed for a few weeks Lugh hadn’t looked like he was gaining much weight. If anything, he looked like he had lost some. We were discharged exclusively breastfeeding as he wouldn’t take a bottle, so it was difficult to tell how much he was getting, but he always seemed satisfied after a feed, and had wet and dirty nappies, and when I voiced my concerns to my health visitor, who didn’t seem too worried, I just thought maybe he was simply a small baby. Sadly, this wasn’t the case. So when we arrived at our appointment and Lugh was weighed, and he had lost 300g, and was now off the centile charts, we were told we weren’t going home. My heart sank. Not again.

We were brought to a small side room, which barely fitted the cot inside. The air conditioner above the bed was so loud, I had to raise my voice to the nurses to be heard, and it blasted cold, artifical air onto the cot beneath. Lugh’s consultant – a tall, broad man, with an air of calm and collectivity about him – came in and sat down in front of me. I began to think about all of the consultants we had seen, and how they were all tall and had the same authoritative air. I wondered whether that was part of the job description. I began to listen to what he was saying. He said that Lugh was struggling to get the calories he needed because of the hole in his heart which was causing heart failure. He asked me if Lugh sweated while feeding – I said I had noticed recently he had – and he said that would indicate his heart was working very hard. Any calories that he was managing to get were being used up on the energy he was using to feed, and his heart working harder as a result. There were no more calories for his body to grow. He then told me to stop breastfeeding immediately, get him onto a bottle, and to begin tube feeds. My heart broke. We had worked so hard to breastfeed. It wasn’t even the feeding aspect of it – the comfort, feeling, closeness; the intimacy of that bond with your baby, after all we had been through – just to stop – I was devastated. I sat in that room alone for over an hour while my baby rubbed his face on my breast and he began to cry, and there was nothing I could do to comfort him.

I eventually spoke to a dietician and had a big cry – please let me offer him my breast, I asked her, I couldn’t see the harm in a comfort snuggle. She agreed, wholeheartedly, and we began our diet plan. Full nasal gastric (NG) tube feeds, I’ll express milk again full time, and pop him on the boob for comfort. After 2 days he put on 100g. Then another 100g. His weight was going up, and I felt so guilty. I had been starving my baby and hasn’t realised. I thought back to all the times he was fussing about and we attributed it to reflux – was he just hungry and too tired to feed? All those times I thought he was satisfied and quiet after eating – was he just exhausted? I felt awful.

We had been told we’d be going home with a feeding tube, and that was okay, I would rather go home with a tube and know exactly how much he’s feeding, and watch him grow and flourish, gaining baby rolls and chubbier cheeks. However, until I had learnt to tube feed myself, the nurses had to pop in every 3 hours to feed a hungry Lugh. One nurse forgot to feed him and only remembered an hour and a half later. I let it slide. The next day, I had to remind another to feed him – I let that slide too. I didn’t want to create a fuss, I wanted to be polite, and nice, and liked. But that soon changed. It dawned on me that I wasn’t there to make friends, or to be liked. I was there to be an advocate for my son, who had no voice. I had to fight for him. I had to be his voice.

One night, while I was sleeping, the nurse hooked his feed onto a feeding pump. Normally, his milk was poured into a 20ml syringe, and held high above his head by either a nurse or myself, but tonight, she used the pump. I didn’t hear her come in or leave, but I woke to hear Lugh making some strange noises – noises he hadn’t made before. I got out of bed and turned on the light – and my heart leapt in fear. The feeding tube had dislodged, and milk was coming out of his nose. The pump was pumping milk into his nose and he was coughing and spluttering and gasping for air, and his eyes were wide and scared. I threw open the door and ran into the corridor shouting “help, help please”, and two nurses ran in to stop the pump and clean the milk from his nose and face. I picked him up and he was screaming, and I held him tight and rocked him and whispered in his ear he was okay, but I was worried the milk had went into his lungs, and I was afraid. The doctor had a look at him and said that it was very unlikely he had aspirated on anything, but if he did, we would know in a couple of days when an infection would begin. That was for his 5am feed. As they couldn’t repass a feeding tube for upto an hour, the nurse told me to pop him on the boob for now, and she’ll come in at 7am to replace the NG tube for his 8am feed. But when I woke at 8.30am to find the tube still wasn’t placed, I started to feel my anger bubble. When 9.30am came round, and the nurses where still trying to place the tube, but struggling against Lugh screaming out in hunger, and the nurse turned to me and asked if he was due to be fed, I snapped. All the anger and frustration I’d been bottling up came out in a fury of tears and clotted words. “He was due fed an hour ago” I snapped; “actually, he hasn’t had a full feed since 2am, 7 hours ago now, since his 5am feed was pumped up his nose and he couldn’t breathe. The reason we’re here in the first place is because of his feeding, and yous keep missing them, and it’s not good enough, and I’m really, really, angry”. I was crying now, and the 2 nurses stood looking at me – one left in a hurry, and the other, rather defensively, began saying “oh we didn’t know, we only started at 8 -“, “I don’t care”, I said, “this should have all been done”. I felt bad, these women were looking after us, but the level of complacency was outstanding. You can’t just forget to feed a patient, repeatedly. You can’t leave a baby unattended when they’re feeding. The other nurse who ran out had fetched the nurse in charge, and I vented my grievances to her and the ward sister. After that we were treated like royalty – nurses brought in extra pillows for us, blankets, contraband items like cups of tea, fresh buttered toast, not the cold stuff off the food trolley. “You’ve given a lot of people a kick up the ass” one of the nurses said to me. I didn’t feel any better for it.

It was Friday, and we were told we’d be discharged on Monday, and that I would spend the weekend getting trained up to tube feed at home. I’d mentioned to the staff I thought Lugh’s breathing looked a bit laboured, and they said they’d keep an eye on it. That night, at 3am, I woke to the sound of his monitor bleeping, and seen he was gasping again, and working really hard to breathe. I’d called for a doctor, who suspected bronchiolitis, and ordered the works – xray, blood test, blood gas, suction for secretion test, place him back into the incubator, and if needs be, put him back on high flow oxygen. He kept pushing his dummy out with his mouth and then crying when it fell out, so I stood beside the incubator holding in his dummy from 3am until 7am, until I managed to build a wall of teddies to hold in the dummy for me. I must’ve dosed off briefly, because I woke to see two nurses and a doctor by the incubator. I overheard one nurse saying he looked “navy” and his “satruations were low” while another was taking notes and listening intently. “Put him on high flow oxygen and see how he does” the doctor said, “and best put in an IV line too – I can see a good vein in the head”. I was exhausted and deflated. We were supposed to be going home in two days. I knew then it would be at least another week in hospital.

Over the course of the Saturday, Lugh didn’t get much better. The treatment for bronchiolitis is to stop feeds, increase o2, and wait it out. It’s caused by RSV, a virus that’s gives us the common cold, but can be serious for babies and immunocompromised children. So we couldn’t even give him an antibiotic for a helping hand. I felt like we were back to square one. All that effort and time putting the weight on, and we were back to nil by mouth. This made Lugh very angry. He was so hungry that he began getting more distressed, causing his heart rate to elevate. He began holding his breath in annoyance, which required more oxygen. I thought this approach to be very counterproductive – surely a small amount of feed, just enough to make him feel like something was in his tummy, would be okay? After two hours of Lugh screaming out in hunger, the staff conceded, and 20mls of milkies was delivered to his belly. He settled, for an hour or two, and then his crying and disordered breathing would start up again. We took it in turns to hold his dummy in his mouth, and tried to keep him as relaxed as possible, but his condition wasn’t really improving. We hadn’t eaten all day, aside from some sausages and chips the hospital provided, so I’d sent my other half on a mission to fetch us a McDonald’s. He had just left the room when Lugh’s consultant came in to tell us that they couldn’t give our baby the level of care he needed anymore, and that he was being transferred to the regional Pediatric ICU (PICU). “He may need intubated for transfer” his consultant told me, “but there’s a chance if we ventilate him he will struggle to get off it, due to his heart”. I solemnly nodded in perceived understanding, and looked down at Lugh, snuggled and peaceful in my arms.

His daddy returned, and the room was filled with the unmistakable, nutitiously deficient scent of the Golden Arches. I ate with a baby in one hand and a Big Mac in the other – an art that you become strangely proficient in when a babo comes along. Babies seem to have a special knack for requiring all of your attention as soon as you sit down for food. I can’t remember the last time I ate and drank something that was still hot. A team of anesthetists came in while I had a mouthful of burger to let us know they were still deciding whether or not to ventilate Lugh, and that the pediatric retrieval team would be over soon to collect us. All I could think about was the rest of our McDonald’s getting colder and becoming less appetising. I chose not to think about going to ICU and how sick our little boy could potentially get. So I ate my flacid French fries and remained blissfully ignorant.

At 11.30pm, the ambulance finally arrived. Our local hospital had told the regional unit Lugh’s actual age, which was almost six months now – but neglected to mention he was born three months early and currently off centile charts. So when the transport team arrived with a hospital bed instead of a travel incubator, and seen a 3kg baby instead of a thriving six month old, the staff scratched their heads. Thankfully, a collective decision was made to not ventilate our son, and he was strapped into this huge transport bed, his tiny face all scrunched looking up at me, wholly unimpressed. We travelled through the corridors and down the lift while the doctor explained to me if the ambulance stopped, I had to remain still and not panic. I knew they were telling me if anything happened to Lugh and they needed to intervene, to remain calm. I knew I wouldn’t, but I agreed. I sat in the front of the ambulance, the sirens were switched on, and we were off. The highest I seen the needle turn to was 120kmh – I watched the blue flashing lights reflect off the road signs, and the cars moving aside to let us through; I thought of the story of Noah, pushing the sea aside, to lead his people through. My anxiety was rising now as we approached the hospital, and my legs felt wobbly as he was wheeled into PICU. It was 1.30am and I’d been awake 22 hours. I hadn’t expressed milk in almost five of those and my breasts were bursting. But I bit my tongue through the pain of it and went into the Unit to see our baby in his new surroundings. Ah, there it is, I thought, the symphony of bleeps. I had not missed this. The nurse was putting things into him and moving stuff about in absolute silence. “You need to explain everything you are doing so I can understand” I told her. She began to explain, but I couldn’t hear her over the sound of Lugh crying.

I finally got to bed at 4.45am, sleeping in the parents waiting room on a pull out sofa. I awoke 4 hours later to check on him again. He was sleeping, settled, and looking much better. So much so, that the Consultants felt we didn’t really need to be in ICU, and began to organise our transfer back to our local hospital. Fourteen hours we were there – all the panic, fear, all the tears – for treatment that could’ve been continued at our local. They organised for an ambulance to take us back, but with no blue sirens this time. Thirty six hours after everything kicked off, we were back at our local hospital. I had hoped this was our last big hurdle, and that we could go home, but home never came.

We had a Cardiology appointment on Wednesday 2nd October, so the consultant’s didn’t see much point in us going home for 2 days, only to come back again. So we had our appointment, and we were told some things, and now here we are. Day 18 on the children’s ward.

It’s been almost 3 weeks and I want to go home. I’m going to crack. I can feel it in my throat – a hard lump like a boiled sweet. It’s getting bigger and bubbling up inside me and I know today is the day that I break. The nurses can sense it too. They have brought me hot buttered toast and a cup of tea, and took my baby from me while I ate it. It was still warm, and the tea stung the cracks in the corner of my lips, dried and split open from a combination of self neglect and dry air from the air con above my bed. The air conditioner is so loud; it turns on every morning at 6.04am, and pushes out cold, artificial air until 8.15pm that night. The white noise from the vent clouds my thoughts, and when it eventually turns off I smile at the tranquility. The nurses sent me for a shower this morning too, in a private room off the ward, then ushered me out to get lunch – a proper lunch, with salad and green things, not chicken nuggets and tinned spaghetti served off a tin coloured trolley.

I want to lie in my own bed. I want to sit down with a cup of tea at my own leisure, and not have a mug of it sneaked in and brought to me in pity. I miss my own space, my privacy. I want to sit and express milk in the solitude of my own home, beside my baby, and not while two nurses stand over me discussing staff handover, or when a doctor is trying to take blood from my son, and beneath the sounds of his crying hearing the intimate drops of my breastmilk hitting the bottom of the bottle. I know these people are helping us but sometimes I want to tell them to leave us alone. Nurses, auxiliaries, play specialists, doctors, consultants, cleaners, dieticians, speech and language therapists, sisters, pharmacists, so many people – not an hour goes by when at least one person comes in, and all I want – all we need – is our own space. The only people I need are my friends, family – I need that emotional support, but the hospital is so far away from all of those people. They’ve made an exception to the rule for us, since we’ve been here so long, and allowed Lugh’s daddy to stay the weekend and I cannot wait. I’ve been living here in the hospital 18 days now, staying day and night, and I crave that normality of home life. That normality – the ability to sit and eat snacks before bedtime, the three of us together asleep in the same room again, is what is saving my sanity today. Who knows when that home life will become a reality again.