For you, Ayla.

 

October 1^st – Welcome to the World

Around 01:30 Catherine, my girlfriend got out of the bed to use the toilet, this wasn’t unusual given she was six months pregnant. We were used to having our sleep disturbed and we developed this subconscious routine to settle. Catherine would return to the room, turn the lamplight off and get into bed. We’d then turn to each other, kiss, hug and drop off to sleep with her head on my chest.

It got to 05:17 – I know this because I checked my phone – and by this point Catherine had returned to the room for a fourth time. She looked worried. Something was up.

We’d bought a Doppler a few weeks before for moments just like this as we’d experienced a Threatened Miscarriage which is apparently common but we were caught unaware at the time. A sign of things to come.

So I used the Doppler and after thirty seconds or so there was a heartbeat, we were both obviously relieved as Catherine had said having thought about it, she hadn’t felt the baby move all day. Back to sleep we went. Routine an all.

05:40 arrived and Catherine returned from the toilet again. The main light was on and Catherine said “We’ve got to go to the hospital right now, I’m bleeding” I think by this point we’d had 2 hours sleep but any notion of tiredness disappeared, Catherine was panicking. I kept a level head for us and didn’t project that inside I was feeling exactly the same as her. We needed that.

Catherine called the main desk at Good Hope Hospital, described what happened and we were referred to Heartlands Hospital.

We got dressed and left straight away.  Ashamedly, I don’t drive so Catherine drove us there.

We barely muttered a word to each other in the car. I can still remember going down this country lane in utter darkness save for a car in the far distance acting as a beacon. The full beam was bouncing off the trees to the side.

The heavens had opened as we joined the motorway and it was awful. It seemed like every lorry driver in the UK had decided they’d be on the road at that time coupled with a few dangerous drivers too.

At one point it was as if the car was driving through the ocean due to the amount of rain and we’d see glimpses of lorries either side of us changing lanes as though we weren’t even there.

On the way there, Catherine was asking me to time her contractions. When she asked me to do that, I was baffled “contractions?” I was thinking there’s absolutely no way they’re contractions. The ignorance in me was of the belief that all of this was either Round Ligament Pain or Braxton Hicks.

We came off the motorway and Google Maps took us to the wrong part of the hospital. Catherine was in severe pain, I had to put a new postcode in. The car was stopped in the middle of the street as I tried to figure out where we were. We both started crying. Then we started laughing. I think we were laughing about how insanely ludicrous it all was. We must have been delirious.

We arrived at 06:50.  

Just before that I had to organise my father as he had a hernia operation at Good Hope Hospital at 09:00. I was meant to be accompanying him for support and to ensure he got there and back safely.

Ayla had other plans.

My dad isn’t the best with technology – most 62 year olds aren’t – and I had to wake him up via phone calls and order him an uber to ensure he arrived an hour early for his appointment.

If you know my dad, you know he’s a character. A crazy, kind, sweet-hearted, chatty individual who just likes a good time. He’s had a very hard life but he has always refused to allow it to break him. He just gets on with things and finds something to joke about.

He had to get this uber as he’d be late for the appointment and they’d likely make him wait longer.

At 06:57 I had the message appear confirming he’d hobbled into the uber so that was a minor inconvenience resolved. The day before all of this, the thought of having to organise my dad at 06:30 for a hospital appointment was petrifying me. Funny how life never stops giving you perspective isn’t it?

Me and Catherine walked into the Princess of Wales Maternity Unit and were advised to head left by security. We’d explained the scenario but I don’t think the gentleman grasped just how serious the situation was. We ventured towards the end of the corridor, passed a large pillar in the middle of the corridor and took a sharp left but the double doors were locked. Our frustration reached boiling point after five seconds, I went back up to security to query what was going on and as I was talking with him, at the end of the corridor a group of nurses starting their shift let Catherine into the unit and after Catherine advised them of the scenario, I was asked to wait outside whilst a doctor spoke to Catherine which I understood was procedure, as much as my instinct was to be by Catherine’s side I adhered to their request as it was the correct thing to do.

I waited outside for an hour and six minutes. I had one bar of signal which would disappear more than it would be present. I’d called 3 times, I sent a txt, a whatsapp, an Instagram message telling Catherine I loved her and to think positive, I was also asking Catherine how she was and what the nurses were saying but there was no reply. After waiting over an hour without an update I decided I’d been respectful long enough and asked the receptionist for an update or to allow me onto the ward. I was beginning to project panic and my calm exterior started to crack. I was told I’d be allowed on soon. At that very moment, Catherine messaged me saying she thinks they’re keeping her in. The baby’s ok but there’s a high risk she’ll go into labour within 24 hours. She passed out once she got in the room and had vomited. The nursing team had advised her she probably has an infection and they’ve done an exam on her. I asked if I could come in but she said the team had advised I couldn’t go in yet.

I hadn’t slept, hadn’t eaten since the afternoon before and was worried. Only one thing for it, Coffee. I went to the nearby café and got a coffee and a water. I messaged my best mate Ant just letting him know. I felt like I couldn’t call anyone because I just felt completely lost. He reassured me and we both agreed it was likely to be spotting.

Then my dad messaged me saying “after the operation, someone has to be at the unit with a method of transport otherwise they’ll keep me in overnight. Bollocks . Can you make it? I’ll owe you one. I should be out by 13:30” At this point, he just thought he was being a hassle, I was always going to be there for him. The original plan was to head over there early in the morning, get him up and get the train to the hospital, wait a few hours and then get an uber home. Things had obviously changed at this point. Dad, if you’re reading this, you don’t owe me anything and you never will.

I sent him messages back asking what time he’d been told the operation was (the hospital had said just to get there for 8AM) how long it will last etc. but he couldn’t say. He just said he was just going to walk out of the unit and not go through with the operation – an operation he’d been on the waiting list for four years – at this point I had to tell him what was going on, I didn’t want to worry him but now I had to tell him as he needed to go through with this operation. He messaged saying he was being sedated and wished us luck.

I headed back to the unit. I asked the receptionist for an update and as she was about to respond, Catherine was wheeled through the double doors by a nurse.

A completely knackered Catherine looked up, smiled and muttered “hello” the nurse did the explaining, she was being wheeled up to the unit via lift as she was definitely being kept in.

We went upstairs. More shite was to follow.

As we went onto the ward, they asked for our details and then asked if I’d completed my lateral flow test for today (I’m double jabbed. I understand they were doing their jobs and adhering to protocol) and I was stumped. They didn’t have any lateral flow tests. At a hospital. They advised I could get one from a pharmacy – the nearest one available was 2.1 miles away – but as Catherine was being kept in, we decided I’d head back to Tamworth and rush together a makeshift Hospital Bag.

Catherine has the best sense of humour, she said “yeah I’m going to need some clothes because…(pointing up and down herself, the clothes were covered in vomit) you know?” We still laugh about this. She somehow took all of this in her stride and managed to make a joke of it. 

I got back in. Put my phone on charge straight away in the hallway. Before I went upstairs, I noticed an horrific odour. I opened the living room door and found that our Shitzu, Ralph had decided that today of all the days available he’d vomit and poo all over the sofa and most of the floor. The poor guy was just sat in the middle of the room, and trotted to me meekly for a hug. 30 minutes had passed, the living room was clean, the bag was packed and Ralph had been hugged.

I’d messaged Catherine to update her about the bag and then again to say I was just leaving the house.

It was 11:35AM. I got to the unit, showed my negative lateral flow test result and went into the room Catherine was in. She was writhing in agony and was telling me something wasn’t right. She’d asked for pain relief an hour ago but it was yet to arrive. I went to the desk and asked for an update. Everyone was calm and assured me they’ll be round shortly. I went back into the room and advised Catherine we had to wait and they should be here soon. I asked Catherine why she hadn’t responded to my messages and she said “shush please” I gave it a couple minutes and aske her how she felt, she said “shush” there was no please. At that point I realised I was annoying her and being a bit of an eejit. Catherine is in-tune with her body. She knows when something is up. Even the slightest thing, she’ll know. At 12:20 she told me something was wrong. I went to the desk and alerted the team, saying “trust me, she knows her body” they probably hear that every day. The nurse said she’d ask the doctor to visit us and he’d be on his way shortly. I went back to the room to advise Catherine. I’d never seen Catherine in this way before and she told me the baby is coming now. I heard this strange squelch sound and looked down at Catherine’s area. There was a lot of blood. I raced back to the desk, I wasn’t being polite any more. I told them to get into the room because the baby is coming now.

This was like something out of ER or Casualty. The collective face of the nursing team dropped and every one of them all raced to the room with me. The head nurse confirmed she was going into labour and insisted the team alert the neonatal unit to prepare for a delivery.

Delivery? Now it was my face that had dropped.

On the outside, I was a picture of health playing an extremely good poker face. I unhooked the wires and plugs connected to the bed and we started to rush out of the room. As we were rushing down the units corridor, I noticed someone that could only be described as an unknowing Roadman bopsing up and smiling. The closer we got, the louder the screams were and the blood was more noticeable. It was his turn for his face to drop in disbelief and confusion.

As we raced passed him, the catering team were coming through the secure doors, they didn’t understand their situation, bless them and were trying to get through at the same time as we were coming through. They soon realised though and we were in the lift.

Catherine. Me. Two nurses. And Ayla.

Ayla had partially exited. The nurses called the time of 12:25. As they called the time the lift doors opened, one nurse shuffled by me to run to the secure doors and open them and the other remained at the foot of the bed to give me direction.

I’m unsure if you’ve ever had to run with a hospital bed down a narrow hospital corridor before but it’s relatively tough, as you can imagine.

We arrived in the room. 8 staff are recorded as present but it felt like 80 and I know initially there were at least 12 but they left.

Everything was all set up and ready to go.  We had to move Catherine from one bed to another. We were covered in blood and discharge from the waters breaking. Before we could move her, Ayla had to be fully delivered. I held Catherine’s hand, Ayla was in her Amniotic Sac. They opened the sac and we heard this almighty roar. Ayla was putting the world on notice. We thought there’d be more noise but then there was silence.

I feared the worst. I thought my baby was going to die. Right there in front of me. I didn’t find any information about a baby being born 16 weeks early and surviving. We’d been blissfully unaware of this side of things and we only had One Born Every Minute to go off for reference and unfortunately the only episode we’d watched regarding premature birth, the baby didn’t survive. Then I thought Catherine was going to die. I couldn’t get my head round why this was happening. I thought about adopting Catherine’s two other children. They’re good kids. All sorts of wild thoughts were wreaking havoc in my mind. What was I going to do? I stood there convinced my baby was going to die. I was resigned to it. I thought these things in about three seconds but I was stuck in that moment for what felt like a decade. Time had stopped for me to spend time with my fears.

This was all in my mind obviously, on the outside I was calm and I held Catherine’s hand and put my arm around her as they moved Ayla on to an operating table and then I helped lift Catherine onto her new bed.

The nursing team and doctors huddled around the operating table and Ayla. I caught the odd glimpse of her body but couldn’t make out much. My job was to do my best to allay Catherine’s fears. I just kept saying it’ll all be ok, holding her and kissing her on her forehead as much and as often as I could. I listened to every word the nurses and doctors were saying to each other, the task was made harder given they were all wearing face masks.

 

For three minutes and forty-five seconds, there was no heartbeat. There was no oxygen. No sign of life. There are no words to give justice to my feelings during that time.

Then, a faint heartbeat was found. Heart rate was at 65% and blood saturation was at 58%. A fighting chance.

At the start of the pregnancy, we decided we’d wait to find out the sex of the baby at the birth. We had a shortlist of names to choose form and we’d decided when the baby was here.

When we heard there was a heartbeat, we asked for the sex, the nurse looked surprised and happy to tell us as it’s rare for people to wait these days. As soon as we were told we had a baby girl, I said “Baby Ayla?!” and I looked at Catherine, we smiled and knew that the name was chosen.

That moment of happiness was followed by uncertainty. Thirty seconds passed. Ayla hadn’t changed colour. The team had to insert an ETT into her throat and suction the lungs. This is called Laryngoscope. At this point, the heartbeat disappeared. The team worked so hard over the next two minutes. During those two minutes, the fear crept in again, I just focused on Catherine and held her tighter and closer, kissing her head. After two minutes and ten seconds a heartbeat was found and Ayla was alive. They’d allowed Ayla to be placed on Catherine’s chest for a moment as we looked down at this beautiful little creation. From there the team moved Ayla to an incubator on a unit on the ward and we were left with the midwife Jean who did a great job with us.

Stupidly or perhaps blindly, I thought that after the birth we’d bring Ayla home.

A doctor came back into the room and told us, that Ayla was ok but for now, we would go day by day, then week by week then month by month until she is well. Everything would be touch and go. 

Jean remained with us and advised us of what will happen over the next few days. As that was happening I called my dad but there was no answer. I knew I wasn’t going to be able to get my dad.

I contacted my mates Will – who was unfortunately away – and James to see if they could collect him. He knows what my dad is like and understood the predicament I was in without me telling him explicitly what had happened. James had just finished work and drove to the hospital my dad was in and waited an hour for him. A selfless, loving, loyal person is our James and I’ll always have his back.

I called my best mate Ant and gave him the good news. He was shocked and happy. Rightfully so. I received supportive messages from my close circle of friends (the joy of group chats meant I didn’t have to be on the phone and I could just be there in the moment for Catherine) but I still couldn’t get a hold of my dad. James had to leave as he needed to see his dad.

Me and Catherine went back to the room. We were so confused about Ayla. We couldn’t comprehend what had happened.

I made Catherine a cup of tea and poured her a cup of water. We hugged for about ten minutes and  in contrast to my emotions earlier on, it felt for a lifetime and I’d have been happy to stay in that moment.

We lay down and I held her. The staff came round to check on Catherine and offer food for the day.

I was advised I wasn’t allowed to stay the night but Catherine had to be kept in. We were gutted.

At 4pm, I finally got through to my dad and gave him the good news. He was deliriously happy and although I know a lot of that is to do with the good news I think a good portion of it was due to the sedatives he’d been given. At one point, he shouted “I’m a fucking grandad!” making the man in the opposite bed drop his phone on the floor out of shock. If you know my dad, you’ll know this is classic him. He’d woke up from the operation and I agreed to get him from the Good Hope Hospital (oh the irony) at 7ish.

Me and Catherine had a couple of hours together to talk at/with each other. We tried hard to rationalise everything but we just didn’t know what to do. The obvious emotion was happiness because our baby survived but there was still so much to talk about.

We didn’t get the ‘classic exit’ after your baby being born. There was no baby in the car seat and walking out holding hands with each other as we had pictured. I left the hospital and I felt numb. I was alone, Catherine was alone, our tiny baby girl was alone.

I had to hold it together and so I put a face on and went to get my dad. He wasn’t allowed to leave the hospital after his operation until someone picked him up.

When I got there, he was – as expected – very happy and not really capable of stringing sentences together because of all the sedatives. He was brilliant though. I remember feeling so frustrated, not at my dad but frustrated about the situation but I couldn’t help but laugh at the situation. It was better to laugh than get angry or cry.

I managed to get him home, safe and sound. Being the working class Brummie with an Irish background, I did the only thing I knew to, I met Ant and his wife Gemma and had a Guinness and food. Gemma was amazing as she managed to whip up a post-birth pack for Catherine consisting of all the vital things needed. I had no clue. You may think that was ignorant but I was expecting another couple of months before having to buy the items, forgive me.

The next day, I got to hospital and saw Catherine first. She’d told me she went down to see her a couple of times. It was all really strange. Catherine had a good conversation with her advising her she’s a little fighter and to keep going because she has everything to live for and nothing was impossible.

We were given a tour of the Neonatal Unit and were advised of the rules on the unit. A weekly COVID test was required and obviously we weren’t allowed on the unit if we had symptoms and hadn’t done any tests. Because Ayla was born so premature she was more susceptible to illness and still is. The staff did everything by the book. It was so noisy and there were so many people going in and out of this ward. I felt overwhelmed. The beeps of the machines, I still hear them. I was fixated with numbers dropping and rising.

From what we had explained to us, there was so much to do before anything good could happen.

In order for Ayla to go home, she had to come off a CPAP machine, a Ventilation system and off of all Oxygen support, then moved to another unit at Heartlands and then to Good Hope hospital for the final stage which was proving she can be breastfed and breath independent of any machine.

As parents, we had to show we knew what to do if things went wrong when at home if she came home needing support.

Ayla weighed 700g when born. Her skin was bright red – like a Pepperami – except for bruises which she had all over her body and it was difficult to see. When I first saw her in the incubator on October 2^nd, she had all sorts of wires coming in and out of her body. She was wrapped in a towel shaped like a U and the lower half of her body was covered by bubble wrap. We weren’t allowed to hold her but we were able to open the side doors of the incubator to touch her. I remember her skin felt like some sort of warm watery rubber. Her hand was smaller my index fingernail. She was just a tiny bit longer than my hand. I was talking to her and telling her she’s gorgeous and she’s a warrior….then my brave, loving little girl reached out to grab my index finger. It’s one of the best moments of my life. Whilst this was happening a consultant was advising Catherine that she had to start expressing immediately. The power of Catherine to go through that immediately is immeasurable. As a man, I find it impossible to relate but it was amazing. I don’t know how Catherine did it and then despite being under immense pressure for the following week managed to produce more than the required daily amount for Ayla. The unit suggested we request to take a drug that we’d need to sign a waiver for in case Catherine has a heart attack or further complications. We felt uneasy about this – I don’t begrudge anyone for taking the drug and signing the waiver, each to their own – and Catherine said she trusted her body to do this. The fact she managed to do it and then some only shows how much of a badass she is. She even donated her milk as she was producing so much.

We were advised it was best to go home and rest. Again, we felt numb and in a vain attempt, I tried to normalise things by suggesting we go to Nandos. We went but we both just said “What the fuck are we doing here?” Everything was hard to comprehend. We laugh now but I still remember us sitting there eating chicken, looking and being vacant. 

For the following week, we just did what we could to get through. Catherine would spend up to 14 hours a day on the unit. I could see this was too much but I had no right to decide how long we spend on the unit but we ended up driving ourselves into the dirt. We were worn down over the next few weeks. The stress, fear and erratic sleeping were proving too much and we had to agree on some sort of sustainable pattern where we could manage things better.

A week after she was born, we were allowed to hold her. This is called Kangaroo Care. The benefits of this were for mutual bonding due to chemicals being released – Oxytocin – in the brain between us. We were so happy that we could do this and Ayla took to us really well. She even left imprints on our chests when she came out.

A few days later we were informed she’d got an infection. She’d dropped down to 670g and she was ill. She managed to get up to 690g but we were still anxious. More than ever. Then there was an issue with the left side of her back as her blood would only saturate with oxygen when she lay on the right. We needed her to stay in the 89%-100% zone for oxygen in order for her to improve.

She managed to recover quite quickly but she wasn’t out of the woods yet. She’d caught E-Coli Sepsis from the plastic microbes on the feeding tubes. It was frustrating because she needed the tubes to live but they were potentially a detriment to her surviving. The doctors then discovered Ayla had a hole in her heart and they were unsure about her eyesight. She may be born blind or have issues with her eyes. Then she had to have a blood transfusion as she was anaemic. As a parent, there comes a point where you think you’re cursed. You’ve made this happen and somehow somewhere along the line, this is your fault. I felt like this was on me and I felt helpless. The fate of my daughter was left in the hands of the doctors and nurses. That’s what I thought anyway. Ayla had other ideas. They’d given her a course of Steroids to aid her pulling through. We were extremely reluctant for them to administer the treatment due to the risks associated. Previously when Ayla needed a transfusion, I was presented with a consent form, I asked “will she survive without this?”  The feedback wasn’t hopeful. I signed the form. For the next few months I wish I hadn’t as at any point, anything could be done to Ayla as the form had been signed for all occasions. As great as the staff were, I wish I had more input of consent. I felt rubbish because we didn’t want the lumbar puncture to happen and we didn’t want Ayla to receive a heel prick test almost every other day. If you’re a parent, you’ll understand it’s not nice to hear or see your baby cry at a heel prick test. We experienced this regularly. It kept happening. It was for the greater good but we felt her pain every single time. As it turns out, it didn’t really matter if I’d signed it or not as Ayla is their patient and they have a duty of care to carry on with procedures regardless.

Me and Catherine spent our first anniversary on the neonatal unit with Ayla. It was unique and when it comes down to it, I wouldn’t have wanted to be anywhere else in the world. We were told Ayla had beaten her infection. Incredible! The next minute, there was a fire on the unit and the alarms were going off. I’d worked a 14 hour shift and the only thing that got me through was thinking I’ll have a conversation with Ayla on the night. I’d got a sentence out before the alarms went off. I couldn’t believe what was happening.  Naturally, we didn’t want to leave and it took a lot of convincing but we trusted the staff, they were great and the fire brigade arrived quickly to put the fire out. We went back in and I managed to finish my chat. Over the next few days we were feeling better about things Ayla was improving. My close mate, Riquel had a baby boy in the same hospital and I was so happy for him, he helped keep me sane in the early stages. The good feeling lasted a week or so as at the end of October, Ayla had to have her 28 day brain scan. There was a bleed on the brain and simply put this was shit news and we worried. What a shit way to end such a messed up month.

 

 

November

We entered November fearing the worst. Standard by this point. We just had to keep going and we had to keep believing. Ayla had Chronic Lung disease, Osteopenia (metabolic bone disease) a bleed on the brain and a hole in the heart. It was too much. What can you even think or feel at that point? Emotionally as parents, it was too much for us. We struggled and it was the toughest time of my life. We didn’t have a moment to spare or feel sorry for us though. We weren’t the one who had the illnesses, it was Ayla. It was on her, we just had to be there and show up  every day for her.

The seconds, the minutes, the hours, the days, the weeks the months all melted into one big ongoing thing.

By this point, I’d read a few bits on the internet about people that had survived being born this early, Tyson Fury being one of them but information was scarce. There was a board on the unit with success stories and that was encouraging.

We received a call from the NHS Covid Admin Team advising us Ayla had tested positive. I’ll never forget the absurdity of it. The caller asked us if they could speak with her, asked us to advise her to remain isolated. We kind of just laughed and said well she’s about 30 days old is in an incubator on a critical care unit so I don’t think she’ll be going anywhere just yet. We then called the Ward to enquire what the hell was happening but we were told it was a false positive and there was nothing to worry about. I felt like screaming and shouting at anyone on the phone but that doesn’t really help.

A couple of days later Catherine received a call from the Ward and there wasn’t any confusion this time, Ayla had taken a turn for the worst and the unit believed she’d caught another infection. I was at work and Catherine was getting ready to visit when we were told the markers were extremely high, they’d done a lumbar puncture and administered medicine but there wasn’t any progress. It was looking like Ayla was being overwhelmed by her many illnesses and the E-Coli was one illness too many.

We were no longer allowed to do Kangaroo Care (skin to skin contact) as she was too ill. This went on for around a fortnight. We were then told that there would be nothing more the staff could do if she didn’t recover. Have you ever felt like your heart was ripped out of you through your stomach? That bass drop numbing of your heart which feels as big as a football followed by the shredding, tearing pain of it being ripped out of you? Utter despair. It was heart-breaking.

I hadn’t cried at this point. On the night we were told, I had a bath. Catherine was in the bedroom so I put music on my phone relatively loud. I let out a cry for the first time in a very long time. I was heartbroken. I’m convinced I washed myself with tears that night. I caught myself sobbing and stopped immediately. Everything felt wrong and I was exhausted. I just needed to get to bed at this point. I was a wreck. Looking back now, I know it was wrong not to let out a cry up until this point. I think I deal with Toxic Masculinity on a daily basis – you probably wouldn’t even notice and that’s the point isn’t it? - but I’m getting better. Men, trust me, if you feel like crying, just have a fucking cry. You will feel better for it. I promise you.

The following morning, my generator/back-up system/backbone kicked in. I’ve inherited my mothers stubbornness/iron-clad will and it really came through for me at this time. I couldn’t mope any more. As a coping mechanism and to cheer Catherine and myself up, I would do impressions of Ayla’s voice – she has a high pitched Irish accent in my head – saying things with various expletives thrown in talking about her dismay at her situation and the staff, infections and even us at times. Me and Catherine became stronger and in turn our energy around Ayla was more influential as we were happier and just got into the mindset of “what will be, will be, we need to be strong for her as she’s being strong for us. We’re unbeatable and everything will be fine”. Despite the odds against her, Ayla started to turn it around. Within the space of a fortnight, the hole in the heart began to heal, her eyesight was getting better, the bleed on the brain was gone and she had beaten her infection.

Then a piece on The Athletic appeared. Professional footballer Ben Mee and his wife had written about their experience having a premature baby and during COVID. Their daughter, Olive was also born at around the same gestation period and survived. It was amazing to read this and it was the lift I needed.

We were told that if we wanted Ayla home for Christmas then we’d need to complete the rest of our training (tube training, Oxygen training, First Aid training and showing how to administer medicines etc) and Ayla would come home with breathing support but this was only if Ayla’s vitals had improved. We decided almost immediately that we would complete the training but ideally, we wanted her home as healthy as possible and without breathing support. Ayla was still having difficulty breathing but after the course of antibiotics for the second bout of E-coli had worn off, the consultant on the ward basically agreed with us that we should drop the oxygen requirement and test her lungs. Ayla wasn’t scheduled to be home until January 18^th and she’d been making slight progresses but nothing significant. We had full belief in our little girls strength and spirit, after all she is from good stock but obviously we were in a constant state of worry.

The consultant agreed to try lowering the breathing support. In terms of having her home and healthy without additional equipment, it was now or never.

After the first day, her stats remained the same. That was actually a good sign. Then the following day, the stats went from a starting point of 8.1 LPM to 7.1 and then to 6.0  with barely any alarms ringing within the first week and that was just incredible. Ayla was going from strength to strength and it was just incredible to see. The staff had done such an amazing job at this point but now it was on Ayla to power through. She remained steady for a few more days but then went 4.0 and then 3.0 on November 29^th. It was an incredible way to end the longest month of my life. 

 

 

December

At this point we were still situated on the Critical Care Unit and in the same space as when we arrived. We’d seen about twenty babies arrive and then be sent home. As happy as we were for these people I will freely admit to being envious of them. Whenever a baby was able to go home, the parents would ring this special bell three times as they were clapped off the ward by all the staff. I’d smile for them but inside I just wished that was us. I told myself “that will be us one day” it helped get me through.

We had done our training and completed it all so we were prepared for all eventualities. We had to remain patient and optimistic.

December 2^nd arrived. Our little girl had progressed so well that she was taken off of breathing machine and just had the tubes inserted in her nose. I remember we arrived at 6am on that Sunday morning, happy with what she’d done so far but we were completely blown away by her coming off the support and not only that, we’d finally been moved from critical care and now she was in a different room. The last room needed before Ayla is transferred to Good Hope. She’d done so well.

In this room, there was no constant machine beeping, it wasn’t suffocating. There were less staff and less families. There was even lullaby music! We didn’t have to dismantle the roof of an incubator or open the side doors any more. If we wanted to hold Ayla all we had to do was lift her out of her little bed. This was the happiest we’d felt for quite some time. After a couple of days, we decided to test the waters with breastfeeding. Ayla took the nipple straightaway. At that point in my life, it was the most wholesome and natural thing I’ve seen happen in front of me. 

On December 5^th we’d finally got the call, at some point in the evening, Ayla was being moved to Good Hope Hospital.

When we arrived on this bright new unit, Ayla was all tucked up in a bed and looking comfortable. It felt like she’d turned the corner now and we were really happy. With every day that passed, her oxygen requirement dropped and we were having more cuddles with her. She was latching onto Catherine’s breast easier and it was just a matter of time.

Around a week or so later, we’d noticed that the prongs weren’t even in her nose when we were arriving in the mornings. She was taking to the breast easily, her vitals were great and we were confident Ayla was ready to come home, maybe even before Christmas.

On 19/12 as luck would have it, somehow, someway I caught COVID. I’d been double jabbed and was waiting for the booster. Catherine had been boosted. I was devastated. It meant I couldn’t see Ayla, my first born child, my daughter, my little baby girl on Christmas day. I couldn’t see family or friends at Christmas. We informed the Hospital and obviously I was unable to go in. Catherine was able to for the next day or so as they were awaiting guidelines from the unit. The same unit that failed to advise us about Ayla having and then not having COVID. Eventually it was decided that Catherine had to self-isolate along with me though she’d been boosted and had tested negative. This meant Ayla didn’t have a parent with her at Christmas. Her first Christmas would be spent with strangers. This really hurt and our Christmas was spent trying to put a brave face on things but it was practically impossible. The staff on the unit were nice and would send us pictures of Ayla looking cute and comfortable. We had checked the national guidelines and it was seven days isolation but for reasons unknown the people controlling the unit advised we had to adhere to the units guidelines and they couldn’t say why. Obviously, we were on a ward with premature children, we got it but we couldn’t understand why national guidelines weren’t the norm considering other vulnerable people in society were bound by the guidelines outside of the unit. Their request was ten days isolation. We did our best to soldier on over Christmas and just get through it. COVID did actually hit me quite badly and I spent three days in bed.

Around this time I was on Instagram. I’m a big Birmingham City fan and came across Troy Deeney’s Story, it read “Anyone that’s just had a baby, please pop a message with your address, we have a few baby hampers that we can get sent out tomorrow in time for Christmas” with a link to the profile of his girlfriend, Alisha Hosannah. I messaged Alisha and explained what we were going through and she said she’d get a pack out. It meant so much to us when it came through with a personal message. They are wonderful people and gave us something in the spirit of Christmas. I could talk about my love for Blues and Deeney all day long but football aside, respect aside, it was a lovely thoughtful gesture from Alisha and we won’t forget that. We put the calls in with the ward first thing in the morning, early afternoon and then around 9pm at night. Alongside the photos they’d send us, that was how we had to care and interact with our baby over the festive period.

Christmas day came, we felt numb. None of the usual things mattered. Christmas day went. I sent my messages early doors and turned my phone off. We just wanted to get to the 29^th and see our baby girl.

After what seemed like a lifetime, we’d made it onto the ward. True to form, Ayla was making considerable progress. I’ll always feel she missed our connection and thought she needed to quickly get better to get back to us. I know that’s not how it works and you might think it’s stupid but it’s what I feel. Her oxygen support requirement was 0. She didn’t need help breathing any more. Her BPM was 143 and her blood saturation score was 100. Ayla had been busy whilst we were away!

Catherine was first to her to give her a hug. I felt so happy we had our baby back. She would do this little cute noise when stretching and our hearts would melt. The day after, we gave Ayla her first bath, this was another box-ticking exercise we did but I was up for it. It was hilarious and beautiful and most of all, Ayla enjoyed it. 

 

January

New years day arrived. We went for a nice walk around Sutton Park at 10am before heading over to the unit. We had such a nice day. Writing this is mental because it feels like a decade ago that this happened. We’d spend most of the day there feeding, changing, bathing and hugging her. I’d heard a whisper between nurses saying Ayla should be ‘ready’ as we left.

The day after, we arrived and we were told that the staff believed Ayla was ready to be on her way. We were delighted. We had to wear masks due to COVID but you could definitely tell we had beaming smiles at this news. We had to do standard COVID tests on the unit every week which we did and that was a part of the process but we were told we’d had to spend two consecutive nights on the unit looking after Ayla to prepare us for bringing her home. This was a requirement but I felt like this was a gameshow now and this was the final challenge.  So we went home and gathered everything we’d need for a two night stay on the ward. It was tough. We slept next to a machine that beeped every three seconds and Ayla would wake every two hours for a feed. Catherine being the warrior she is handled it superbly. I just propped her up as much as I could. It was exhausting.

We just had to plough through which we did. We completed 48 hours on the unit and we were told we’d be able to take Ayla home! We’d packed our things away. Got everything ready and we were just waiting to speak with the ward consultant.

I received a message from the COVID Unit advising my test was negative. Catherine received a message from the COVID Unit advising she’d tested positive. We were really confused. It was impossible given Catherine had all the jabs and boosters and I’d had COVID a few days previous and we’d been testing nearly every day to confirm we didn’t have it. We’d told one of the nurses on the ward and she was just as shocked as us. Obviously she couldn’t go against the unit result and had to advise us that we then needed to be quarantined in the room and we were unsure if we’d be able to go home. We felt like this was another obstacle. How many more? An hour of agony and frustration passed. The nurse came in and said we could go home but we’d need to grab everything and leave, limiting what we touched. I realised we wouldn’t be able to be clapped off the ward or ring the special bell three times. To you that might sound ridiculous but it would’ve been so nice to have that and at various points it’s what got me through. It had been 97 days across 3 units and 2 hospitals. I felt like we had been robbed of this moment. When we were sitting in the room gathering our things, we both said it didn’t feel right. The unit had been wrong before about a false positive and we were certain this wasn’t true. We’d just had ten days of isolation and getting Ayla home…we weren’t going to sit indoors for ten more days. We decided to book a COVID test on that day. We both did it. 2 days later we had it confirmed...false positive. We weren't surprised.

As I walked down the corridor carrying all our bags and Catherine walking ahead of me with Ayla in the car seat, I dropped everything and I rang the bell anyway. We’d earned it. We got into the car park, I put all of our things in the boot as Catherine sorted the car seat out. We got into the car and it felt like the cloud of negativity outside of the car didn’t exist any more. We were finally heading home with our baby girl and she’d fought all the way for us. I still feel the feeling. A mixture of confusion, relief, happiness, sadness, pride and the strongest of all, love. Nothing mattered any more. Ayla was coming home!

 

 

 

 

Now

I still remember when we brought her home, we just didn’t know what to do initially. After so long, we had to adjust to normality. It’s kind of funny that.

Here are some statistics I’ve found on Google and websites for NHS, Tommy’s and Bliss which show just how lucky we are to have Ayla, a baby without any disability and alive.

Ayla was born in her amniotic sac – This happens in 3% of pregnancies.

Ayla was born at 24 weeks – 50% survival rate

Extreme Premature Birth – 5% chance of happening

Chance of Disability – 80%

Total number of babies admitted to a neonatal unit before 25 weeks gestation – 1.2%

Ayla also battled two serious infections had several blood and plasma transfusions, was born with a hole in her heart and had to have her ROPE corrected. The fact we have a happy and healthy baby aged 1 is nothing short of a miracle. It shows just how strong she is.

It also shows how magnificent the majority of the staff are. Though there were a few times I was frustrated with them, they were doing what was best by our baby and they knew what they were doing. They’re fantastic hard-working people and really are the unsung heroes of society. In some parts, it reads like I have a gripe with the NHS or staff but I don’t. My issue is with the government and the funding that isn’t available for them. If we hadn’t had the fantastic, dedicated staff looking after Ayla, I dread to think what could have happened.  The information on the pamphlets and websites of Tommy’s and Bliss are exactly what you need in trying times. They are also fantastic at what they do.

We do a weight check every fortnight and are required to see her consultant every couple of months. Because of the premature birth, Ayla is required for more regular than normal check ups with consultants, speech and language therapists and doctors but Ayla hits all percentiles of a baby born at her corrected age and there are no concerning signs.

I’ve been blessed to be surrounded by an incredible support network and my boss, Dominic has been unbelievably supportive of me and my family. A good few people have been supportive and I’ve had people from years ago to get in touch or wish Ayla well which is amazing and thoughtful. In trying times, it’s nice when people reach out.

Ayla is my first child and when I talk about what we had to do, people don’t really understand. I don’t expect them to and so it must be so difficult for people to truly relate unless they’ve actually been through it like we have. Having a baby on a neonatal unit is the toughest thing I’ve ever gone through and for most people it’ll be their biggest challenge too. For the parents that are experiencing this, please take the above for what it is. It’s an experience that someone like you has gone through and it gets better. The staff on the units know what they’re doing and are under considerable pressure, every question you have, even the ones you think are stupid are worth asking and if you need to talk to someone about how you feel then do so.

Catherine is my rock. On the wards we would see couples bicker with each other, sometimes shout at each other and even nurses. They’d belittle each other in the break room in front of us. Everyone handles things differently and there is no judgment. For who I am, I needed it to go the way it did. Catherine was amazing and we were on the same page all the way through. I kept her sane at various points but she kept going. Catherine expressed milk every two to four hours over 97 days.

You can’t pick things in life but if I could pick a woman to be my soulmate and to be the mother of my child, it would be Catherine. Thank you for everything you do for and with us.

Ayla, your name is derived from our Irish origins and means to be noble. It also means the halo of night around the moon and you are the light guides the way.

This is only a snapshot of your first year, a microcosm of what you’ll achieve in life but the fact you are here, happy and healthy is nothing short of a miracle. We love you and we are happy to have you home.