Matilda's monthly progress

25 Months

Never mind the pandemic, we’ve had an outbreak of nits! After 10 weeks in isolation, Tilda’s somehow ended up with a lice-riddled scalp. She’s not the only one scratching her head – I’m baffled!

I’ve done these monthly updates since her birth and wonder at which point it gets weird to keep counting age this way? But Tilda’s never done things by the book – arriving over 3 months early, everything was out of kilter from the word go.

At 25 months, she’s too teeny to ride her tricycle and we can’t get shoes small enough for her feet, yet she can scale the stairs in seconds, build towering structures of blocks, and has mastered the TV remote, Twirlywoos on repeat. 

She has a lot to say for herself, but few discernible words. “Aids, aids!” is her most frequent proclamation. The current limbo has thwarted the intervention needed to develop her speech. I truly hope we can make some headway before she grows frustrated at her inability to communicate verbally.

For now, she remains our chilled out ‘Machilda’, forever smiling (despite the nits!) except for a strange phase last week when she refused to be separated from a tin of tuna. Forget her dolls and bears, everywhere that Tilda went, the tuna was sure to go. I’m pleased to report she has now overcome her addiction. Who knows what quirks await us next month …

Matilda's monthly progress

24 Months

Tilda is Two Today!
💖🧡💛💚💙💜💖🧡💛💚💙💜💖🧡💛💚💙💜💖🧡💛💚💙💜💖
And so we mark her birthday in lockdown – ironic, given how she was so curious about the outside world that she arrived 96 days early. Fortunately, she has no inkling that anything’s amiss – she takes everything in her stride. John and I are trying our best to do the same – we’ve experienced so many twists and turns since becoming parents that we feel like contortionists, and not such supple ones these days.
Tilda is a conundrum. Outwardly, she’s the picture of health, but her kidney function is less than 30%. She’s sharp as a dart, but her hearing is distorted due to Auditory Neuropathy. She’s half the size expected for her age, and no doctor is sure why.
But, above all this – she’s the most joyful, affectionate child we could hope for. She was so fragile at birth that we waited 12 days to hold her, but she certainly compensates for this now, smothering us in hugs and kisses. Whether she’s scaling the sofa, clapping along to the virtual Big Fish Little Fish family rave or running amok through the flowerbeds, she always has the brightest eyes, her tongue poking out in typical Tilda fashion.
Today is all about Tilda and living in the moment, just as she does. Here’s to celebrating life, regardless of its restrictions!
Matilda's monthly progress

23 Months

Tilda is 23 months old today and wholly oblivious to the chaos unfolding around her. However long this lockdown lasts, our priority is to keep her safe in her little bubble.

Because of her kidney disease, she’s classed as high-risk – this usually requires frequent monitoring at hospital, but that’s the last place we dare take her right now. All visits to help with her hearing and speech are also understandably on hold.

The world’s pressed pause. In the meantime, Tilda’s mastered the remote control and relishes turning the volume up to 100, just to amplify the panic on the TV news.

She’s grown noticeably taller and even more affectionate – she loves giving hugs and kisses. She also likes to “help” organise the house – oregano in the washing machine, bank cards in the bin and vitamin tablets down the loo? Great motor skills, Tilda! At least we don’t have a cat flap.

 

Matilda's monthly progress

22 Months

“How old is your baby?” a man in the shop asked my mum.

“22 months,” mum replied.

“Ahhh, my granddaughter’s 22 weeks – snap!”

I wanted to tell him that I’m actually a toddler, not a baby with lots of hair, but I haven’t mastered this talking thing yet. I might wear clothes meant for a 6-month-old and stand just 70cm tall, but you should see me move – not only am I an expert at stomping in the snow, but I’ve also taken up running and climbing.

I’ve been cutting my canines and it’s really put me off my food. To be clear, I haven’t been chopping up dogs, I’m talking about my teeth. It’s given me a lot to howl about, but now the tips are through I’m starting to get my appetite back. My favourite foods are strawberries, hummus and the lions in my Noah’s Ark. I’ve almost completely bitten the head off one of them.

My bestest toy is my baby doll – I haven’t tried to bite her once. I picked up the BSL sign for baby the first time it was shown to me – my speech and language therapist says I’m sharp as a dart.

I’ve had some more tests which confirm that while I can hear high noises at normal levels, I can’t hear the lowest noises unless they’re at least 70 decibels – that’s the same volume as a hoover, a hairdryer or an excitable sheep.

To make matters more complicated, my Auditory Neuropathy means everything I hear is distorted, so even when my aids make everything louder, it doesn’t necessarily mean sounds are clear enough for me to master speech.

I’ve never liked wearing the aids – they’re so clunky I just want to throw them across the room, but Mum’s so desperate to know if they actually make a difference that she’s resorted to parcel taping them to my head! I told her she better not share any photographic evidence of this farce ….

BC: Before Children

Mum’s the Word?

I’d be hard-pressed to describe my childhood as anything short of awesome. I was a joyful, assertive if somewhat precocious child who played the violin and dreamed of being an ‘authoress’. Mum was a talented artist who put her career on the back-burner to pour everything into making my life magical. Dad juggled his colossal Head Teacher workload with weekend adventures to the seaside and parks, his energy seemingly infinite. He was an avid photographer, and I have treasured digital copies of all 30,000 pictures he took during my formative years. You might imagine that I look back on them through nostalgia-tinted spectacles, but the truth is that no filter is needed.

So, naturally, I was keen to embrace motherhood as soon as possible, replicate that contentment and raise a family of my own, right?

Wrong.

Throughout my twenties, the thought of becoming a mum was akin to dressing up in my elder sister’s clothes – a bad fit and preposterous. Not that I have an elder sister, nor any siblings for that matter – I am an old child. Growing up, I was frequently alone, but never lonely, relishing uninterrupted hours basking in creativity, building worlds inside my head. As I got older, I fiercely guarded that headspace, as essential to my wellbeing as caffeine.

There was no room in my life for a small human – I was still learning how to become a fully-functioning individual myself. Instead of feeling a wrench of jealousy each time I heard of yet another school friend becoming a mum, I felt sorry for them – their freedom curtailed, burdens of responsibility clinging to their waists.

And so the third decade of my life saw me graduate with an English degree, qualify as a journalist and take my first forays into carving out a career besides Hedonist. I spent my weekends playing violin in numerous bands and fortuitously became a homeowner just as the housing market was on the brink of skyrocketing.

I had a few stabs at long term relationships but for the most part, they were tumultuous. My first love became brainwashed by a bunch of fundamentalist Christians, another battled with psychosis which led him to take his own life and a third had an ‘artistic temperament’ and neglected to tell me that he preferred men. With hindsight, my voracious and often baffling appetite for the unsuitable and unconventional over stability put motherhood on the back-burner – raising a child with any those partners would have been like trying to build foundations in quicksand. I told myself that having children was something I’d do one day, perhaps when I was thirty – the age my own mother was when she gave birth to me.

But thirty came and went and I realised I felt no closer to assuming the identity of my imaginary elder sister. It just seemed too … well, restricting. Unsuited to nine to five monotony, I walked away from the security of traditional employment and began freelancing as a writer. Financially I took a hit, but the sanity I clawed back proved just about enough to sustain me.

I embarked on a Master’s Degree in Creative Writing, transporting myself into my stories, weaving plots and shaping my characters’ destinies. I decided to major in The Novel and the brilliant Professor Jane Rogers mentored me through the process of writing my first polished full-length work. Angel Hair and Baby’s Breath chartered an infertile woman’s journey to become a mother, but the yearning voiced by my protagonist Eva did not mirror my own – it was pure fiction.

When I was thirty-two I met a man who broke the mould. Not only was he witty, enormous fun and wildly eccentric, he was also grounded, emotionally intelligent and incredibly kind. In essence, he was my equilibrium. From our first meeting, I found it impossible to imagine anyone else by my side and by some colossal stroke of luck, he felt the same way. This in itself might sound like a fantastical narrative, but this time it was for real and I considered myself ridiculously fortunate.

We spoke about kids early on, those words ‘one day’ cropping up again. There was so much we wanted to share first and step by step we passed those milestones – setting up home together, getting engaged, planning our woodland wedding. By the time we married, I was thirty-six and still there wasn’t even the faintest sound of my biological clock winding into action.

And then it struck me – what if I wasn’t meant to be a mother? Perhaps I was never destined to grow into my elder sister’s clothes, to don the mum uniform which would swathe my identity? After all, I loved sleep with a ferociously guarded passion, abhorred routine, partied with my friends at a moment’s notice and regularly put the world on pause to absorb myself in twelve-hour writing sessions, sustained only by Marmite on toast. How could I ever be a mum without spreading myself too thinly or cutting out the ingredients that made me feel like me? Maybe I was just too damn selfish to sacrifice enough of myself to make someone else feel whole?

I knew there was no ‘one size fits all’ and I felt no societal or familial pressure to become a mother. My parents weren’t the interfering type, pining for grandchildren, and my husband maintained that he was relaxed either way – while he loved kids, primarily he wanted the two of us to be together, whatever our future held.

The pressure came from within, tied to a perception of what I believed my more mature, grown-up self would want. I was thirty-seven before I finally figured out that I’d never stop growing – outwardly, inwardly, every which way. There was no line in time which I’d cross like a sprinter, fists pumping above her head, triumphantly crying, ‘I’m ready!’

But there was a line, a cut-off point, biologically at least. In January 2017, I realised that in two years’ time, I would be forty. If I didn’t make a choice about motherhood soon, it would be taken away from me. I thought how harmonious my marriage was and how I feared anything which might unsettle it, but then I considered how wonderful it would be to create a life that was half him and half me. I envisaged looking back on my time on earth and weighed up the exhaustion of child-rearing years with the satisfaction of knowing that it had all somehow been worth it. I was certain that my husband would make a brilliant father – a teacher in a primary school and the eldest of five siblings, he was a natural with kids. I felt, instinctively, that if we didn’t at least try for a baby, I would deeply regret it in my later years.

I had no idea how long it would take us to conceive, especially given my age. For some reason, however, I was feeling cautiously optimistic about the prospect of becoming a mum before I turned forty.

If only I knew then what hurdles I would face, I might never have taken that initial leap of faith.

 

Matilda's monthly progress

21 Months

I’m not going to sugar coat it, we’ve had a tough time of late. Tilda turns 21 months old today and remains delighted with life despite the many obstacles her health throws in her path. I’m trying to hold onto the positives, but sometimes it’s challenging.

After remaining stable for the past year, her kidneys have inexplicably worsened. They’re currently functioning at less than 30%, meaning her kidney disease is now classed as ‘severe’, which is one step away from ‘end-stage’. This term isn’t necessarily as damning as it sounds, although it likely involves dialysis, kidney transplants and a motherload of frayed nerves which this mother wouldn’t wish upon anyone.

Our understanding until very recently was that Tilda’s kidney damage was caused by her prematurity, but the findings from her latest ultrasound scan flip this on its head – her nephrologist believes that her kidney dysplasia began in the womb and is the reason she was born early. This is the first time we’ve been offered a reason for my untimely labour and it’s raised a multitude of questions. John and I have been referred for genetic testing which will hopefully provide some answers but this could take months. In the meantime, we’re trying to piece the fragments together.

One thing we’ve learned is that the toxins which accumulate during kidney failure can damage nerves in the inner ear. Tilda’s auditory neuropathy is an ever-present issue but never before had I considered that the two were linked. There’s no doubt she can hear a considerable range of volumes and pitches but neuropathy is a complex and rare form of deafness that causes distortion and can muffle even loud noises. We still don’t know the extent to which this will impede her comprehension and speech – yet again we’re left playing the waiting game.

Tilda has finally tipped the scales at 7kg – the same weight as an average 5-month old, but an encouraging gain considering how much she lost after falling ill between Christmas and New Year. She was unable to eat without vomiting for a week when her throat became enflamed after catching a chest infection. She was admitted to hospital but mercifully we were spared an overnight stay.

January feels as though it’s been plodding on forever but watching Tilda grow more agile on her feet has brightened the bleakest of days. She’s swiftly becoming a confident walker and loves giving us the run-around.

Keeping a toddler entertained day in day out takes its toll, so after being a TV-free house for numerous years, we’ve finally conceded and bought a goggle-box. Tilda thinks it’s the best thing ever and I get to use the bathroom in peace, so it’s win-win. Sometimes even the smallest of victories can make the biggest difference.

Matilda's monthly progress

20 Months

It’s MC Matilda Cotton, here with this Christmas message.

It’s a miracle I’m here at all, for that I count my blessings.

It’s 20 months since I was born at 26 weeks gestation.

My mum has bought a flashing tree to mark the big occasion.
She’s covered it in sparkly things I’m not supposed to touch.
But I persist, I can’t resist, so much to yank and clutch!
I’m a gale force of determination in my size 2 boots.
Tenacity and feistiness are my greatest attributes.
I proved that I could hear when the tests said that I couldn’t.
I’m learning how to talk when the experts said I wouldn’t.
I’m walking, squawking, thumping, jumping, full of joy and cheer.
On Christmas Day, on every day, I’m thrilled that I am here.
So when the road feels long ahead, just think how far I’ve come.
I hope you have a very Merry Christmas everyone!

💝❤️🧡💛💚💙💜❤️🧡💛💚💙💜❤️💝

Matilda's monthly progress

19 Months

Hello, my name is Tilda, although surely you know that already – I’ve been doing these updates for 19 months now!

Last weekend I took my first steps – I toddled across the kitchen all on my own! My parents were so caught up in the moment they forgot to film me. Now they expect me to do it again – no pressure! I’m still quite partial to crawling so I’m not a fully-fledged walker yet, but I’m getting there …

Thanks to a new prescription milk, I’ve gained more weight in the past month than the three previous months put together. I’m still no bigger than an average four-month-old, but it’s no secret that there’s nothing bog-standard about me.

Right now I’m in awe of autumn – the fluttery speckled leaves put such a smile on my face. I love grasping at them from my pushchair and gazing at the colourful carpets they’ve made in the park. I can definitely see why it’s Mummy’s favourite season.

Daddy had a big fancy dress party to celebrate his 40th birthday. He and Mummy really went to town with their costumes – so much so that I didn’t recognise them. My bottom lip did a wobble but then I remembered I’m a kick-ass micro-preemie warrior who fought my way back from the brink more times than I know how to count. 💪🏻 Suddenly wigs and platform boots didn’t seem so scary anymore and I partied wholeheartedly till way past my bedtime.

World Prematurity Day

Matilda’s Story

Looking back, I can’t help but wonder whether it was an omen that I found out I was pregnant on World Prematurity Day. It wasn’t my first pregnancy, but I was yet to be a mum, so those initial months were riddled with worry and I couldn’t allow myself to relax until I got the all-clear at my 20-week anomaly scan. Finally the nausea, dizziness and incessantly dry mouth that had blighted my first trimester subsided. I knew that my life was about to change, but I was ready, or so I thought – I couldn’t wait to meet my little girl. In reality, nothing could have prepared me for meeting her quite so soon.

At 24 weeks I awoke to the pain of contractions, five minutes apart. I phoned my community midwife, who said it was probably Braxton Hicks. Unconvinced, I went to the labour suite where a doctor probed my stomach then muttered something about a urine infection, prescribing antibiotics and sending me on my way. Instinct kicked in and I insisted upon a full examination. The next thing I remember is the words, “you’re not going anywhere – you’re 3cm dilated.” Out of nowhere, a whirlwind of medical professionals swept into the room, and I became a human pin cushion, cannulas piercing countless veins as I received unpronounceable medicines to try and stop my labour, as well as magnesium to protect my baby’s brain and steroids to stimulate her lung development. She was on the cusp of viability – even if she did survive, the chances of cognitive disabilities and conditions such as cerebral palsy were high, so every day I managed to keep her in utero was critical. After 48 sleepless hours on the labour suite, my contractions finally stopped. Allowing myself to feel a trickle of relief, I levered up off the delivery bed … as if on cue, my waters broke.

I spent a further 72 hours hooked up to those drips, monitored around the clock, waiting for what I feared was inevitable. Somehow, she clung on with just 2cm of fluid surrounding her tiny body. I was transferred to the maternity ward, filled with mums who had just given birth to full-term babies and other women going into spontaneous labour in the corridors. I was desperate to go home but because I was dilated, the risk of infection was too high. After a fortnight in limbo, the contractions started again, and this time they couldn’t be stopped. At 1am, I made a frantic phone call to my husband John. With no access to transport other than his feet, he ran three miles through the night to be by my side – when he arrived he was hyperventilating. “You’re in labour, stop worrying about me!” he protested when I insisted he lay down and recuperate. The tube supplying my gas and air became detached, one end suckered to my thigh, the other writhing around the room like a possessed snake, myself mid-contraction, not finding it half as amusing as I do in retrospect. I concentrated solely on powering through the pain, not daring to think of the worst or even the best-case scenario, but when Matilda Evelyn Cotton burst into the world, pink and writhing with both eyes open, she captivated every fibre of my heart. It was 8.42am on 25th April 2018 and she had made it to 26 weeks and 3 days gestation. I ached to hold her, but instead, she was ventilated, wrapped in a plastic bag to keep her warm and whisked away to the Neonatal Intensive Care Unit (NICU), where I didn’t see her again for a further six hours. Somehow I kept my anxieties at bay, the rush of post-birth hormones making me giddy, a glow radiating from every pore, despite my physical exhaustion. I was in a bubble … but bubbles always pop.

NICU was like nothing I have ever experienced – I find it hard to write about it even now. The first time I saw my fragile 1lb 10oz bundle surrounded by a spaghetti junction of tubes and wires, I asked one of the nurses why the monitor above her incubator was beeping. “Oh, that’s a desat,” came his response. Desat, it transpired, is short for desaturation and Matilda’s oxygen levels, which should have been at 100%, had dropped to just 60%. A few adjustments later they rose again, but then the monitor was flashing and dinging once more and Matilda was having a “brady” – bradycardia, meaning her heart was slowing to a dangerous pace. When I eventually tore myself away to try and rest at the doctor’s insistence, I returned to find 17 “apnoeas” – temporary cessations of breathing – recorded on Matilda’s chart. This drove a spike of panic into my chest, at odds with the breezy composure of the staff caring for her. I looked around at the fledgling lives in the nearby incubators, the chorus of monitors, the blanched-faced parents. None of us wanted to be there, but we all knew that the alternative was far worse. Due to Matilda’s prematurity and subsequent chronic lung disease, she faced a minimum three-month stay – John and I realised that in order to keep strong for her we must acclimatise, and make this extreme environment our norm. Keen to be involved in Matilda’s care, we began changing her minuscule nappies through hatches in the side of her incubator. Her underdeveloped respiratory system meant she was unable to cry and she remained too fragile for us to have any physical contact outside the incubator or for her to drink my milk, but I started expressing and storing it for when she was ready. I was discharged from the maternity ward, John and I assigned a private room in the patient hotel two floors above the unit, albeit with a bed scarcely big enough for both of us, its mattress seemingly made of bones.

On day four of Matilda’s life, an early morning phone call wrenched us from fractured slumber – our daughter had deteriorated rapidly, her stomach growing distended for no fathomable reason. This time, no intervention could silence the monitor’s warning sounds. I’ll never forget the consultant telling us that we needed to prepare for the worst. It was the bleakest moment of my life and one which I’m still not ready to dissect … I’m not sure I ever will be, suffice to say that the tormented, bewildered expression in Matilda’s eyes as they pumped her full of adrenaline to keep her heart beating will haunt me forever. In a last-ditch attempt to save her life, a specialist was brought in from another hospital and we faced a decision – consent to high-risk surgery to investigate the cause of the swelling or do nothing, in which case she would die regardless. My hand was shaking so much I could barely sign my name and it continued to tremble for the next hour until the surgeon returned with the answer that had eluded us – a tube supplying nutrient solution into Matilda’s vein had migrated and flooded her system, a problem so rare he’d only seen it once in his entire career. After making an incision in her abdomen, he’d fashioned a drain from the finger of a surgical glove to siphon away the fluid. Gradually, the puffiness which had spread throughout her entire body deflated, but the trauma had placed such strain on her organs that her heart was galloping at 220 bpm, threatening to give out, her kidneys failing. After two days of Matilda failing to urinate – therefore limiting the cocktail of stabilising drugs they could infuse into her system – John and I were ushered into what I came to know as “the room of doom,” a sickly déjà vu washing over us as once again we received the “we’re doing everything we can, but …” speech. John and I became zombies, permanently exhausted, but too terrified to sleep, for fear of the phone calls which came regardless, never revealing more than that we must “come downstairs immediately.” We braced ourselves to say our last goodbye so many times it’s a wonder we have any nerves left that aren’t frayed to shreds.

After five fraught days, Matilda passed 30ml of urine – I’d never felt so elated about wee in my life! Finally, we’d turned a corner, or so I thought until I was changing her nappy and uncovered a sight that made my stomach somersault – her entire bowel had wormed its way out through the surgical drain hole and was withering before my eyes. What happened next is stranger than fiction – Matilda and I blue-lighted across the city during Friday evening rush-hour with Staying Alive by the Bee Gees blasting from the radio – I don’t think I’ll ever be able to listen to that song again. We arrived at a different hospital, known for its surgical expertise and found ourselves thrust into its innards, John and I left with no choice but to place our trust in the hands of strangers who yet again, against the odds, saved her life. Matilda’s resilience astounded me – her name means strength and she embodied this with every ounce of her being. I was in awe of my tiny warrior and frustrated at myself as my own strength waned. Neonatal units are humid at the best of times, premature babies unable to regulate their temperature, but the country was in the grip of a heatwave, and unlike the hospital where Matilda was born, this one offered no respite – no green space, no fresh air, just a maze of windowless rooms, reeking of disinfectant. How was I supposed to stay sane in this hotbed of tension and malaise, incubators packed in like sardines with no space for privacy? How on earth did the staff deliver such an awe-inspiring level of care day and night in such dispiriting conditions? How the hell can our government justify such a grossly underfunded NHS?

When Matilda was eventually transferred back to our original unit, it marked the beginning of a more even keel. The 12th day of her life brought the moment I had yearned for – my first chance to hold her in my arms and feel her heart beating against mine. It was sublime and bittersweet in equal measure and the tears I had suppressed for so long erupted. From thereon I tried to have skin to skin contact with her every day, even if it was only for 10 minutes before her temperature dropped and she had to go back in the incubator. Matilda’s ventilator was extubated and replaced with a CPAP machine, which provided continuous pressure via her nasal passages to keep her airways open. Finally, she was able to ingest my milk, albeit via a nasogastric (NG) tube as she was too small to co-ordinate suckling, breathing and swallowing. John, the nurses and I fed her every two hours while I expressed milk at every spare moment. My head knew long before my heart accepted it that this was unsustainable. It’s impossible to bond with an electric pump – I felt more like a dairy cow than a mum. My milk supply dwindled and I simply wasn’t producing enough to feed Matilda, so we supplemented her diet with formula. Her weight picked up and the doctors began to wean her off CPAP, supplying oxygen via a nasal cannula instead. It was a fine balancing act – push her too hard and she’d crash, push her too little and her lungs would never mature enough for her to breathe on her own. For two long months it felt like we were treading water and would never get out of the high dependency unit. An outbreak of MRSA was the last thing we needed – fortunately it was contained and Matilda wasn’t affected, but this necessitated a move to another bay, next to a couple whose day-old son was in a critical condition. The dad was sobbing, the mum frozen in shock – a torrent of memories came rushing back, Matilda at death’s door. I caught the eye of the mum opposite me who had been on the unit even longer than I had and realised she’d witnessed me in the same state of torment – she later told me that watching Matilda fight for her life had uprooted those memories for her too. As grim as this cycle was, it made me appreciate how much headway Matilda had made – suddenly her progress was snowballing and after managing 48 hours off CPAP she was transferred from an incubator to a cot and made the long-awaited move to the low dependency unit.

It was wonderful that I could now cuddle Matilda whenever I wished and that my friends and family could touch her at last. We ticked off the milestones – first bath, first tube-free feed, first day breathing entirely unaided. She found her voice and even started to grow nipples, which were absent at birth! Cautiously optimistic that we were over the worst, John and I gave up our hospital room and moved back home. He had returned to full-time teaching and getting a decent night’s sleep in the bony bed was impossible. Every morning when he left for work I travelled to the hospital and spent the day caring for Matilda, John coming straight from the classroom to take over in the evenings. How he managed to hold down such a demanding job and remain a bastion of strength for the two of us is beyond me. When Matilda was diagnosed with Retinopathy of Prematurity (ROP) and required immediate surgery to save her sight, I needed him more than ever. A post-operative move back to the frenetic high dependency unit was inevitable, but no one could have anticipated that Matilda would catch pneumonia, stalling her recovery and requiring her to be reventilated. One day of intensive care turned into a week – it felt like we were slipping back to square one. Furthermore, it was too early to gauge the long-term effectiveness of her eye surgery and whether the abnormal blood vessel growth which threatened to detach her retinas would return. The protracted heatwave had outstayed its welcome and I’d reached saturation point. Matilda also decided she’d had enough and self-extubated, yanking out her ventilator tube. At this point, I realised she was as feisty as her mum and we were damned if this was going to beat us.

Another month in low dependency followed as we established feeding – Matilda suffered from severe reflux and would desat every time she ingested milk, the monitors chirping their alarm. It was like groundhog day, stuck in stasis while a conveyor belt of mums and babies came and went, a friend of mine delivering her healthy baby next door on the labour suite, discharged the following day! When I finally wheeled Matilda outside into the courtyard, I was elated. Her monitoring equipment prevented me from taking her far, but it was a moment I had coveted for so long, through every bleak hour that I’d gripped her fragile hand and promised her there was so much more to life. I pined to take her home, but she was still struggling to breathe. A tug of war between myself and the consultant ensued – he was pushing for a discharge date, yet only the week before, a baby seemingly more robust than Matilda had turned blue upon arriving home, the dad performing CPR for five minutes until she spluttered back to life. Matilda failed an overnight oxygen saturation study and finally, I felt my concerns were being taken seriously, a plan made to set up oxygen cylinders in our home, along with smaller, portable canisters so we weren’t housebound. With this in place, I felt far more relaxed about entering the next chapter of Matilda’s journey.

In preparation for leaving NICU, John and I moved into a transitional care room with Matilda. It was crazy to think she’d been in our lives for over three months and this was the first time she’d slept beside us. Not that I slept much – I must have checked that she was still breathing at ten-minute intervals throughout the entire night! She was now 6lb 4oz, and John and I realised we’d gained the equivalent weight of four Matilda’s between us thanks to subsisting on nothing but microwave “ping” food for over 100 days! On 30th July, one day after Matilda’s due date, we walked (well, waddled) through the doors of the neonatal for the millionth time, the difference being that we were now carrying our daughter! It was the moment we’d dreamt of for aeons, which had seemed intangible for so long. That evening, as Matilda lay contentedly beside me in her Moses basket, everything felt wholly right.

I’d been warned about the first few delirious weeks of sleep deprivation, but as luck would have it, Matilda’s homecoming coincided with John breaking up for the summer holidays, meaning we had five weeks together as a family and I had support with night feeds. Matilda, or “Machillda” as we called her, was a chilled out soul – she only cried when hungry, was happy to be held by anyone, didn’t mind being put down and was entirely unfazed by noise. Compared to the psychologically gruelling and emotionally draining atmosphere of the NICU, this was the easy part.

One month after Matilda’s discharge, she received the all-clear (no pun intended) that her ROP was in remission and her surgery was a resounding success. Her eyes, which once stared into space, began tracking our movements and lighting up when we approached, her smiles mirroring ours. Shortly afterward, Matilda passed her oxygen study, meaning she was finally rid of the nasal cannula with its sticky pads that irritated her skin and John and I were free of the cumbrous oxygen cylinders with their leads that were forever getting caught on our furniture and weighed a ton when we were out and about. The simple pleasure of a stroll in the park without a cylinder strapped to my back is one I will never take for granted again.

Everything was going swimmingly, which of course meant that once again the bubble was going to burst. Matilda was booked in for an auditory brainstem response (ABR) test after failing her newborn hearing screening in NICU. Informed that oxygen frequently interfered with the readings, we weren’t overly concerned. “Of course she can hear,” John said. “She responds to our voices.” But when the audiologist played sounds at various volumes and frequencies, the electrodes placed on Matilda’s head recorded zero activity. A diagnosis of Auditory Neuropathy Spectrum Disorder (ANSD) followed – due to her prematurity, her auditory nerve hadn’t developed sufficiently to transmit sound from her cochlea to her brain. When Matilda was classified as profoundly deaf I felt as though I’d been repeatedly run over by a truck. After everything we’d endured, why must we face another battle? I was devastated for her, envisaging a future of isolation and disadvantage. I was also devastated for myself – as a musician, sound elevates me above all other senses, music forming such an integral part of my core being, making me feel truly alive. I thought of all the times I’d played her Matilda by Alt-J, a song John and I love, which inspired her name – I could have sworn her ears had pricked up, that she’d recognised the melody that I’d sung to her in the womb. I recalled the hours I’d spent sat by her incubator, truly believing that my voice was soothing her. Nothing felt real anymore.

Matilda was fitted with hearing aids, but they created more problems than they solved. She clearly preferred them in her mouth to her ears and we couldn’t take our eyes off her for a millisecond for fear that she would choke. We tried custom made hearing aid headbands and even wig tape to keep them in place, but she yanked these off too. She outgrew her ear molds on a weekly basis and because the aids were set to such a high level they would feed back at an excruciating volume whenever the fit wasn’t snug. We were forever at the Evoked Potentials clinic getting new impressions made, a process which involved piping a pungent blue putty into Matilda’s ears and trying to stop her writhing until it set – this certainly proved there was nothing wrong with her vocal cords! Matilda was too young for conclusive testing, but to my mind, the hearing aids made no palpable difference. I began learning sign supported English and meeting weekly with a teacher of the deaf, trying to reassure myself that time would reveal the bigger picture.

In the meantime, we tried to live as normal and active a life as possible. I said yes to every baby group going – massage, yoga, sensory, messy play, sing and sign … witnessing the unadulterated delight Matilda gained from these activities filled my heart with sheer joy. Matilda loved spending time with other babies and I forged new friendships too. To this day we still socialise regularly with families we met on NICU and on the “other side” like myself and the other mums of preemies jokingly refer to life beyond the unit. We paced the same hospital corridors for months on end, we know how each other feel without uttering a word – when you experience something so life-changing, teetering on the brink of life-shattering, it consumes you and the prospect of the outside world can seem like another dimension. Together, we branched out and have formed bonds that I have no doubt will last a lifetime.

The months rolled on and John and I celebrated Matilda’s first Christmas and first birthday. Her neonatal consultant had warned us that she was at high risk of catching bronchiolitis over the winter, which would likely require hospital readmission, but to our immense relief and surprise her immune system stayed strong – she didn’t catch so much as a sniffle. She cut her first teeth and mastered rolling, sitting, weaning, crawling, waving, clapping, standing and cruising. Against all odds, she even appeared to be developing some degree of hearing! She still wouldn’t tolerate the aids, but even without them, she would react to squeaky toys, jump at sudden noises, turn to her name and take her turn babbling in conversation. It was then that I learned about delayed myelination – myelin lubricates the auditory nerve, aiding the transmission of sound from the cochlea to the brain. Could Matilda be one of the tiny fraction of premature babies experiencing delayed myelin maturation, her senses slowly but surely awakening? The audiologists couldn’t be sure. ANSD is a rare, complex and frequently intermittent type of hearing loss, so further ABR testing would likely be inconclusive. It was possible that Matilda’s initial ABR misdiagnosed the severity of her deafness, but she needed to undergo behavioural hearing tests to prove or disprove this theory. Unsurprisingly due to her age, she lacked the concentration span to sit still and engage for long enough to get conclusive readings. I sensed that some of the audiologists perceived my conviction that she had improved as wishful thinking. This was incredibly frustrating, especially when all I could do was play the waiting game.

Besides the conundrum of her ANSD, we’d run the prematurity gauntlet and overcome all the obstacles, right? Wrong. In May 2019 I took Matilda to an ultrasound scan to ensure her kidneys were back to normal after the acute injury she sustained in NICU. As the sonographer’s brow furrowed and she mumbled something about getting a second opinion, I felt an anxious twist in my gut. As the consultant described kidneys shrivelled to half their expected size, anomalous in both shape and brightness, I realised they were far from normal. Before I had time to ask any questions, let alone dress Matilda, we were herded out of the scan room to make an appointment with a nephrologist. Still in just her nappy, Matilda peered at me with unsuspecting, innocent eyes. I don’t think I’ve ever held her so tightly, trying with all my might not to explode with tears as people shoved past me in the bustling hospital corridor.

It’s now six months since Matilda was diagnosed with chronic kidney disease. Without wishing to dwell on the negative, the disjointed care we have received has been almost as challenging as the condition itself. At almost 19 months old, Matilda weighs just 14b 8oz, the same as an average 4-month-old. We’ve been told that her kidney failure is inhibiting her growth hormones, yet another consultant contradicts this, insisting that at 33% her kidney function isn’t poor enough to stunt her development. Depending on who we ask at any given appointment, her size is down to genetics, prematurity or the fact she expends all her energy frenetically moving about, leaving none to grow One consultant assured us that the worst Matilda might face in the future is high blood pressure, while another casually dropped the bombs “dialysis” and “kidney transplant” into conversation, seemingly oblivious that this was fresh information. One thing I know for sure is that diet plays a huge part in keeping the ticking timebomb that is kidney disease at bay, specifically cutting out sodium, potassium, and phosphates. Staple foods such as potatoes, bananas, and tomatoes are off the menu – in fact, 90% of her diet has been overhauled. Matilda has wholeheartedly resisted all changes, mealtimes and messy play swiftly merging into the same activity. Restricting her diet while trying to encourage weight gain has felt exasperatingly counterproductive and it’s only since the recent introduction of a high protein and calorie milk that we feel like we’re turning a corner.

This October brought a long-awaited breakthrough regarding Matilda’s ANSD. After countless inconclusive tests, the audiologists finally recorded some meaningful readings which confirmed what I had suspected for so long – SHE CAN HEAR!!! At higher pitches, she perceives sound at an almost normal level, whereas at lower pitches, the loss currently stands at a moderate level. Encouragingly, she can differentiate between a variety of speech sounds, which is not always a given with ANSD which produces distortion and can muffle even loud noises. I’ll never forget the day an audiologist declared that Matilda wouldn’t develop speech without significant intervention – in response, she stood up, yanked his trouser leg and announced, “hiya!” not once, but twice. This rendered him the speechless one! Now her hearing aids are calibrated to the correct levels, she doesn’t scream blue murder every time she has to wear them. We’re still lucky to achieve 20 minutes’ use per day, but immersing her concentration in her favourite programme Boohbah certainly helps. In addition to “hiya” she now says: “hey”, “yeah”, and “D-day” although the last once might be a coincidence 🤔. She can sign “milk”, “more” and “no” and gets so excited to hear her daddy’s voice on speakerphone when he calls from work during his break. It brings me immeasurable joy to share my passion for music with Matilda – she is more receptive to it than I had ever dared hope, clapping and thumping along to the beat, her mood shifting as I switch genres, her expression morphing with curiosity and delight as I play my violin to her.

There’s no mistaking my little girl with her big personality. Her unquenchable thirst for living shines through, lighting up every room she enters. She has taught me the true meaning of resilience, patience and courage. Matilda holds her own, defined by her enduring spirit far more than the battles she has fought to overcome.

As Mum to a wriggling, rambunctious toddler it’s rare to find time to reflect, but what better time to share our family’s story? Today, of course, is World Prematurity Day, exactly two years since I took that positive pregnancy test. Tomorrow, Matilda and I will return to the neonatal unit where she spent her first 107 days. Mercifully, she doesn’t remember a moment of her NICU journey, but the doctors and nurses who saved her life certainly remember her and I grasp every opportunity I can to update them on her progress, including her latest milestone – yesterday she took her first steps!!

It’s the little things that spark memories of NICU for me – the scent of pears, now forever synonymous with the shower gel I used in the patient hotel. The same three songs on incessant repeat as the radio blared in the milk expressing room. Even now, when my phone rings unexpectedly my heart flies into my mouth, expecting one of the many 4am calls I received urging me to come to Matilda’s bedside immediately … only for me to realise she is safe in my arms, beaming and trying to stick her finger up my nose.

I’m still no closer to finding out why Matilda was born 14 weeks early – she was in good health, as was I. No one ever thinks something so incomprehensible will happen to them until it does. The unvarnished reality of extreme prematurity is tough – it’s not always sugar-coated miracles and happy endings. I think of the parents whose stories ended before they scarcely began, for their babies who never came home, or felt a gentle breeze against their cheek. Matilda is one of the fortunate ones and whatever challenges we face in the ensuing chapters of her life, I’ve no doubt she has the grit and determination to tackle them with her typical fearless aplomb.

 

 

Matilda's monthly progress

18 Months

My name is Matilda and I am 18 months old today – I marked the occasion by signing “milk” for the first time!

I also waved goodbye to the oxygen cylinders I once needed to breathe. I haven’t used them for a while, but they were on standby at home just in case. My respiratory consultant x-rayed my chest last week and said I officially no longer have chronic lung disease! He never wants to see me again – how rude.

My latest hearing test is the most conclusive yet – I hear high noises better than low ones, but at worst I have a moderate hearing loss, not a profound loss after all. Auditory Neuropathy is such a rare type of deafness that it’s tricky to get accurate readings, but this is a massive breakthrough. Now my hearing aids are set to the right levels, I just need to learn to keep them in my ears.

When I was in the neonatal unit I had an eye disease called retinopathy of prematurity (ROP) because my eyes were exposed to light before they were ready. Stevie Wonder was a preemie who had ROP but that was back in the olden days when it couldn’t be cured so he went blind. I was lucky, an operation saved my sight – thank you NHS. The doctors thought I might need glasses, but this week we found out I don’t. Mum is so relieved – I’m such a squirmer I struggle to keep my socks on, let alone my hearing aids. Glasses would have been the final straw!

Because I have chronic kidney disease, I can’t eat a lot of the same foods as my friends. Why is it that the odder something tastes, the better it is for me? Mealtimes and messy play are basically the same activity – the greener the food is the further I throw it. I do love hummus though and have learned to feed myself with a spoon.

I’m still so tiny that people don’t believe I’m one and a half, but when you look how far I’ve come since those touch-and-go-days born 14 weeks before my due date, I truly am nothing short of a small and mighty miracle.

Matilda's monthly progress

17 Months

Hey. Tilda here, once again. Right now I’m obsessed with washing machines, spectacles, maracas and trying to grab random dogs. I’m also a dab hand with phones – my latest accomplishments including taking 23 artistic shots of Dad’s knee and registering Mum’s interest in a smart metre installation, much to her bemusement.

I turn 17 months old today, but many of my size 3-6 month clothes are too big for me. This might be because I was born 14 weeks before my due date or because I have chronic kidney disease, a combination of both or mostly genetics – it depends on which consultant you ask. Still, I now weigh one entire stone, which is a whopping great milestone for me and has been a long time coming.

Although my kidneys aren’t working as well as they could be and my hearing’s not the best, you wouldn’t think it to meet me – I’m the feistiest, most curious, mischievous tot on the block. Nothing stops me from living my life to its fullest.

This month I got my first hair cut and my first molar tooth broke through – boy, that was something to shout about. Guess what? I can now stand on my own, unaided! I was fitted for shoes and measured as size 1.5. Turns out nowhere makes outdoor pairs that small – let’s hope my feet grow a bit before I master this walking thing …

Matilda's monthly progress

16 Months

My name is Matilda and I am 16 months old today. I’m 64.5cm tall, wear size 3-6 month clothing, weigh 13.5lb and have enough energy to power the national grid.

My favourite things include eating tuna, jiggling along to the sound of steel drums, making clicking noises with my tongue, shredding tissues and licking windows.

I’ve had such a fun summer, taking in sights far and wide – what a big, colourful world there is out there for me to discover.

Sometimes when I visit the audiologist I’m a little shy, but this month I found my voice. He was telling Mummy and Daddy how I wouldn’t develop speech without a great deal of help when I grabbed his trouser leg and shouted, “hiya!” not once but twice. After that, he was the speechless one! I also say, “hey”, “dada” and “yeah” – the latter typically when Mummy asks, “Are you going to scream throughout the entire film again, Tilda?”

The Neonatal Unit

You’ve Come a Long Way, Baby

Precisely one year ago, after a gruelling uphill struggle, Tilda was finally well enough to come home from NICU. Today, we revisited the unit to take part in a Q&A session with some parents of newborn preemies. If we were able to bring them even a sliver of hope, then it was a morning well spent.

We also encountered many of the doctors and nurses who saved Tilda’s life – it was an emotional reunion and it felt wonderful to share her progress with them. Mercifully, Tilda won’t remember a moment of her time in hospital but in their words, she was in there for so long she became somewhat of a celebrity!

It’s the little things that spark memories of last summer for me – the scent of pears, now forever synonymous with the shower gel I used in the patient hotel. The same three songs on incessant repeat as the radio blared in the milk expressing room. Even now, when my phone rings unexpectedly my heart flies into my mouth, expecting one of the many 4am calls I received urging me to come to Tilda’s bedside immediately … only for me to realise she is safe in my arms, beaming and trying to stick her finger up my nose.

As a mum to a wriggly rambunctious one-year-old it’s rare to have time to sit and reflect, but doing so today has made me appreciate just how bloody lucky I am.

Matilda's monthly progress

15 Months

It’s so hot that Mum’s brain is frazzled, so I thought I’d hop on her Facebook to give my 15-month update – after all, I’m used to the heat after spending the first 107 days of my life in a neonatal unit.

I’ve learned to clap and I enjoy practising my new skill whenever I can. It’s especially fun when I’m eating – strawberries look so jazzy when they’re splattered up the walls.

The audiologist says it’s encouraging that I’m responding to music. I love to shake my maracas and my tambourine in time to the beat.

I’m a joyful ball of curiosity who relishes being outdoors. I have bucketloads of energy and I’m rarely ready for bed before midnight. It’s just as well that my parents are night owls.

Monday marks a year since my due date – my second first birthday. It’s also the first day of Dad’s summer holiday, meaning five entire weeks with me. We have so many adventures planned, the kind we could have only dreamed about this time last year when I was in hospital. Now, that’s definitely something to clap about.

Matilda's monthly progress

14 Months

Hello, Tilda again. I’ve managed to stop making mischief for long enough to send my fourteen-month update.

It’s all good news – my latest hearing tests showed even more improvement, including normal levels of sound at some frequencies. It appears that my auditory nerve is waking up, due to ‘delayed myelination’. I’m really lucky because this degree of improvement is extremely rare. I definitely won’t need cochlear implants although I might still need my hearing aids. Apparently, I’m supposed to keep them in my ears, but I prefer them in my mouth.

My speech and language therapist says I have great babbling and copying skills – I like to smack my lips when people blow me kisses and I mirror their smiles, showing off my four teeth. The bars on my big new cot are the best teething toy ever. It’s pretty good for sleeping in too – I feel very grown up now I’ve moved into my own bedroom.

I’ll eat almost anything put in front of me unless it’s green. I think that’s why I’m now almost 13lb. It might not sound a lot, but it’s a massive gain for me and a huge relief for my family. When we went to see the neonatal doctor he said not to worry – I’m naturally small and I’m hitting all my other milestones.

Given that I was born over 100 days early, I’ve shocked Mummy and Daddy with just how quickly I’ve become mobile. When their backs were turned I opened the kitchen cupboard, pulled myself up to standing and grabbed the tabasco sauce. After that Daddy put some sticky locks on all the doors to stop me causing chaos with the condiments. The only problem is, now Mummy can’t get in either!

Matilda's monthly progress

13 Months

Hello, it’s Tilda here. Just letting you know how I’m doing now I’m thirteen months old. Guess what? I can crawl!! After weeks of doing bizarre yoga poses, I finally figured I can get around better if I don’t attempt a headstand at the same time. I can also pull myself up to standing, so mummy and daddy often awake to me staring at them, doing my meerkat impression. Now I’m on the move I’m tiring myself out, meaning I actually go to sleep before midnight. It’s time for me to make another move – into my very own room, and a larger bed with high sides to keep me safe.

Talking of keeping me safe, the doctors need to keep a close eye on my kidneys – a scan showed they’re unusually bright, very small and scarred. When I was in the neonatal unit my kidneys started failing after my nutrition line pumped food in the wrong place, but everyone thought I’d recovered from this so it’s been a massive shock. I’m not poorly right now and just because my kidneys look weird it doesn’t mean they’ll cause me problems, but it could be the reason why I’m not growing, despite my good appetite. I’m still 12.5lb, and my five-month-old cousins are bigger than me, even though they weren’t conceived until after I was born! (I have more hair than they do though, so ner!) I’m seeing the consultant next week and I’m hoping he’ll have a plan to help me grow.

This thing called spring is here and I have even more opportunities to be curious and cheeky, out and about. I’ve been to the aquarium, Sherwood forest and lots of sunny parks and birthday parties. Then there’s my Sing and Sign classes which are helping mummy learn British Sign Language, while I laugh at her attempts to sing. That’s right – I CAN HEAR her! Okay, not perfectly (perhaps a blessing given how bad her warbling is) but I’ve finally had some tests, which show my hearing has improved loads since I was classed as profoundly deaf last summer. We still don’t know the full picture, but sometimes with micro-preemies like me it takes longer for our senses to fully wake up, so who knows how well I might be able to hear as the months progress?!

Matilda's monthly progress

12 Months

Our Miracle Matilda is One Today!

💖🧡💛💚💙💜💖🧡💛💚💙💜💖🧡💛💚💙💜💖🧡💛💚💙💜💖

At 8.42am on 25th April 2018, she decided she was coming whether we were ready or not. She wasn’t due for another 14 weeks, but doing things by the book has never been the Cotton family forte.

If I sound glib, it’s because describing the unvarnished reality of extreme prematurity is tough. It’s giving birth without the certainty of sustained life. It’s fearing sleep because the last three consecutive nights have seen you wrenched from slumber before dawn, told by doctors to prepare for the worst. It’s aching to hold and protect your fragile child, but having to wait twelve days, because your touch will do more harm than good. It’s the exasperating logistics of living in a hospital for over 100 humid summer days, during which you have never spent a moment alone with your own flesh and blood.

Motherhood is a world away from what I had envisaged, yet I’d do it all again in a heartbeat. Matilda’s first few months were a steep uphill struggle, but having her home in good health and bonding with her on our own terms makes it wholly worth it.

Nothing fazes our sunny, sweet-natured daughter – she has an unquenchable thirst for life, taking anything and everything in her stride. Without her grit and determination, she wouldn’t be here today, let alone thriving – her consultant finds it remarkable that she hasn’t had a single readmission since leaving hospital nine months ago.

Watching her eyes spark with recognition and her face light up each morning as I lean over her cot fills me with pure joy. John and I are bursting with awe and love for our brave, curious, beautiful Tilda – our little girl with bucket-loads of personality. Here’s to all the milestones conquered and the story yet to unfold …

Matilda's monthly progress

11 Months

Hello, it’s Tilda here and I’m eleven months old today. What an eventful month it’s been, and not just because the roof of my house blew away in the wind! (Nothing to do with my trumps, I promise).

I’m making the most of my one and a quarter teeth, chomping finger food and people’s fingers. I’m also partial to chewing my feet – thanks for the flexibility, baby yoga. I can now sit up all on my own and I have ninja rolling skills. I’ve not quite nailed the crawling thing yet, although I do an excellent squirmy worm impression when I try.

Although I haven’t gained much weight this month (I’m hovering around 12 lb, the same as an average three-month-old) I’ve stretched 2.5 cm and outgrown my Moses basket. I’ve moved to a bigger bed which fits more toys, so I can indulge in my favourite activity – grabbing!

Fortunately, I managed not to grab anything inappropriate during my neonatal buddy Spencer’s christening. The two of us became roomies again when we had a sleepover at his house (it has a roof and everything). He’s introduced me to swimming and soft play too – what a wonderful world there is to discover beyond the incubator.

Last weekend I cemented my reputation as Most Chilled Tot™ when I partied for hours without a single grizzle at Umi’s 40th birthday celebrations. Umi is what I call my mummy. I reckon it suits her better – Mummy sounds too much like dummy and I never got on with dummies.

Matilda's monthly progress

10 Months

Hello, it’s Matilda again and I’m ten months old today! If I’d stayed put in Mummy’s tummy I wouldn’t even be seven months yet, but curiosity got the better of me.

Since my last update, I’ve cut my first tooth and I’ve been tasting lots of different foods. Carrots and sweet potato are my favourites but I’m not sold on fruit, especially the yucky yellow bendy one.

Talking of bendy, I’m loving my baby yoga classes and my sensory group too. I’ve made some wonderful friends there and so has Mummy – the other mummies call me “Machillda” because I’m so chilled out and content.

I certainly have a lot to smile about, especially now spring is almost here. Because I was born with chronic lung disease and spent the first five months of my life needing help to breathe, my consultant warned that I’d probably catch bronchiolitis over the winter and end up back in hospital. I’m really lucky this hasn’t happened as I’m so done with being poorly – 107 days on the neonatal unit was more than enough, thank you.

My legs are as strong as my immune system and it won’t be long before I can stand unaided at this rate, even though I’m still teeny tiny at 11.5 lb. I’m certainly getting plenty of wear out of my size 0-3 month clothes!

After trying loads of different headbands, I’ve finally got a custom-made one that keeps my hearing aids in my ears. It’s still not perfect because I’m always wriggling about, outgrowing the moulds or trying to put them in my mouth, but it’s an improvement.

I like to keep everyone guessing about exactly how much I can hear – I’m still too small to have the official tests, but even without the hearing aids I react to squeaky toys, turn when people say my name and jump out of my skin when something loud goes bang, so either it’s a massive coincidence or maybe I’m not profoundly deaf after all. Time will tell …

Matilda's monthly progress

9 Months

Hello, it’s Matilda here – can you believe I’m nine months old today? My legs are growing strong and I love to bounce – there was only so much Mummy and Daddy’s arms could take so I now have a Jumperoo. When I’m not being a jumping bean I’m gnawing everything in sight – I’ve got some teeth coming through and they make me want to squeal in protest, especially in the evenings. I still find most solids hard to swallow but I’m a recent convert to strawberry yoghurt and I like a rusk in my milk, which probably explains why I’ve finally hit the 5 kg mark (11 lb) and outgrown my newborn clothes. My Aunty Lou had twins at Christmas so I now have two new cousins, Nancy and Henry. Meeting them and seeing how tiny they were made me feel very grown up indeed.

Matilda's monthly progress

8 Months

Today marks our first Christmas as a family of three and exactly eight months since Matilda’s birth. Recent skills mastered include rolling, identifying fake Santas by yanking off their beards and sleeping through the night … occasionally!

The latter feels like a miracle in itself, but the real miracle, of course, is that our micro-preemie is here at all. After spending the first 107 days of her fragile life in hospital, we’re all too aware of how our story could have been over before it scarcely began.

It’s been a rough old road and to finally reach the point where our joyful, sweet-natured and spirited daughter is healthy, is truly the best Christmas gift we could ever wish for.

Festive seasons of late have all blurred into one, but this one has a warm glow about it and something tells me that in years to come, the memories will continue to resonate.

Thank you to all our family and friends who have supported us throughout what has undoubtedly been the most challenging episode of our lives. We wish you a wonderful Christmas and a peaceful New Year xx

Matilda's monthly progress

7 Months

Hello, it’s Matilda here. I decided I’d write my own update this time – after all, I’m now seven months old! I’m loving sensory play, pulling faces at the supermarket checkout and licking my penguin. You can’t stop me babbling and I’m forever saying “eggy igloo”, whatever that means. I’m now 10 lb, so I’ve made the big move from my pram to my pushchair. I keep outgrowing my hearing aids and this week the silly sausages at the lab sent me four moulds for my left ear and none for my right! I can’t wait for them to sort their bodge up because I really could hear something with them in … my audiologist thinks so anyway!

Matilda's monthly progress

6 Months

Matilda is six months old today, twelve weeks corrected. I just tried to dress her in some “up to 1 month” trousers and they fell straight back down again, but you only have to look at this comparison to see how far she’s come. She’s full of beans and smiles and despite her hearing difficulties she’s found her voice and can’t stop babbling. John swears she said “hallelujah” earlier. Although her life started with an uphill struggle, she’s overcome every obstacle in her path and we’re so incredibly proud of her. She brings us such joy and we can’t wait to see where the next six months will take us.

The Baby Shoes Project

The Baby Shoes Project

“FOR SALE – BABY SHOES, NEVER WORN.”

Six words, powerfully evocative and believed to have been written by Ernest Hemingway to win a bet.

The words were the inspiration for The Baby Shoes project  – a collection of flash fiction, compiled and edited by the author Hache L. Jones. Her challenge went out: write a story of no more than 500 words explaining why a pair of unworn baby shoes were up for sale.

I decided to take up her challenge and submitted a piece entitled Ashleigh, inspired by the sad but true story of my brother and sister in law, whose premature daughter survived for just four days before losing her fight for life. It was an indescribably bleak time for the entire family, but somehow, the words flowed with ease and on the first anniversary of her passing, I shared the story with Ashleigh’s parents, who both felt that it was the perfect tribute to her.  

I was delighted when Ashleigh was chosen for inclusion in the anthology, which is now available on Amazon, with all profits going to the Make A Wish Foundation, which helps make wishes come true for seriously ill children. It contains 191 stories in total and is well worth a look. In the meantime, here’s a taster …

ASHLEIGH

She came into the world on a crisp December day, tugged from inside you through incised flesh and torn muscles. Your body had ached to house her until the New Year, to keep her safe and incubated. Yet here she was, twelve weeks early, rushed away to a manger, before you could even hold her.

Tubes became her lifeblood, your precious bundle wrapped in ribbons of wires. You yearned to feed her instead of that drip, longed to swaddle her in her own crib, but all you could do was watch and wait, your helplessness ricocheting around the ward.

When, at last, you scooped her up, her heart beating against your own, it felt as though she’d been with you forever. She was as light as a loaf of bread, her doughy limbs not yet fully risen. Still, her tiny fingernails were perfectly formed and her hands gripped yours with urgency, grasping at life. Awash with love, you prayed that she would hold on, that she would grow – like her premature brother – to be a gale force of resilience and curiosity.

Three days passed before you breathed her name to the world – the name you’d spoken softly as you watched her chest rise and fall, the name you’d murmured during snatched hours of half-sleep. Your joy spread, her name shining bright, shimmering with hope.

But then, fresh news crushed that hope – the night had snatched her from you, claiming your star as its own. A fist pumped inside your ribcage, flooding your veins with disbelief. Every fibre of you coiled with anguish as you relived the shock of her form ripped from yours, over and over again.

Back home, your three-year-old son was giddy with Christmas spirit, unable to comprehend why mummy and daddy were so sad. You wondered how life could continue in her absence, when the echoes of your loss followed you from room to room.

Flowers arrived, each condolence a reminder, a new thorn. Yet simultaneously, those words of comfort chided you, made you realise you were not alone. You thought of the presents at your baby shower, the anticipation of pitter-pattering feet. You pictured the shoes, wrapped delicately in tissue paper, their velvet as soft as your daughter’s cheek. You’d never get to see her first steps, to hear her first words, but she remained with you, her memory chattering and dancing by your side.

Others doubted your judgment, selling those shoes, but as you handed them to your radiant, pregnant buyer, you felt a reclaimed purpose in their soles. You donated the money to the hospital – Ashleigh’s parting gift.

Now, on her first birthday, you light a candle and speak her name once more. You reach out to your husband and son, your bastions of strength. The scars of your loss will never fade, but as you trace the scar across your stomach, you know she is waiting for you – that one day you will hear her call your name.

Matilda's monthly progress

5 Months

By now, I’m used to the quizzical look on people’s faces when I tell them Matilda’s age. She’s five months old today, but at 8 lb 10 oz, she’s still too small for most newborn clothes. Great news – her lungs have now matured enough for her to breathe by herself during the daytime. She loves the freedom of not having to wear the nasal cannula and both John and I love getting out and about without the encumbering oxygen cylinder. With any luck, by the end of this week we’ll get the green light to take her off oxygen at night too.

It’s been confirmed that she is profoundly deaf – I’m feeling far more positive about this than I was when we initially received the diagnosis. Being a mum to a 26-week preemie has taught me that no challenge is insurmountable. We’re receiving help from a sign supported English teacher and tomorrow Matilda is getting moulds taken for her very first hearing aids. I’m utterly exhausted but she’s unequivocally worth it, especially when I see her gorgeous smile!

Matilda's monthly progress

4 Months

At 7 lb 8 oz, Tilda weighs the same as an average newborn, when in fact she is four months young today. As much as her protracted neonatal stay was crucial, I found it psychologically gruelling and emotionally draining. It was twelve long days before John and I held our fragile girl and an additional twelve weeks of tearing ourselves away each night before we finally brought her home. This move wasn’t made without trepidation, especially because she still requires help to breathe via a nasal cannula hooked up to an oxygen cylinder. Despite this, she has settled in better than I’d dared hope, largely due to her daddy being off work for the school summer holidays and providing superhuman levels of support. We’ve filled our days fending off cooing old ladies in the park, dodging projectile vomits, forging new friendships with fellow preemie parents and welcoming old friends and family round for overdue catch-ups. We’ve bonded, burped, cuddled, cooked from scratch (a novelty after months of living on microwave meals), wiped unspeakable things off walls and climbed plenty of others, especially when Tilda developed conjunctivitis and required five visits to A&E in one week.

More challenging still is her diagnosis of Auditory Neuropathy Spectrum Disorder (ANSD), meaning that no sound is passing between her inner ears and her brain. There’s no point in sugar-coating this – as a musician, hearing is the sense that elevates me above any other and the prospect of not being able to share this with my only child devastates me. At present we’re in limbo, but I live in hope that subsequent testing will shed light on the profundity of her hearing loss and indicate the best approach to tackle this rare condition. I look forward to getting some answers in the weeks to come and also to Tilda’s sleep study which will gauge if she is robust enough to come off her oxygen support. If so, this means we can finally venture out without looking like we’re wearing proton packs!

The Neonatal Unit

Graduating NICU!

It’s 107 days since I was admitted to hospital with contractions five minutes apart and 96 days since Matilda was born 14 weeks prematurely. On three occasions we were told to prepare ourselves for the worst, but each time emergency surgery brought her back from the brink.

Today, one day after her due date, John and I finally took our courageous daughter home! It’s the day we’ve dreamed about for what felt has like forever and which seemed intangible for so long, but as I write this, sitting in my armchair with Matilda lying contentedly beside me in her Moses basket, everything about being at home together feels wholly right.

I feel so fortunate to have such a happy, vibrant girl against the odds and to be married to such an amazing man who stayed level-headed and provided love and comfort to Matilda and me through all the ups and downs while somehow managing to hold down a demanding full-time job at the same time.

Thank you also to our friends and family who have provided overwhelming moral support and help with practicalities, the fellow mums on the neonatal unit who preserved my sanity when I was at breaking point and the innumerable NHS staff who went above and beyond to do everything in their power to save Matilda’s life and help her thrive. Farewell NICU and hello to what should have been the first chapter of our journey with Matilda, but which actually feels like the zillionth. Whatever the future holds, the Cotton family is ready to face it together …

Matilda's monthly progress

3 Months

Matilda is three months old today – it’s hard to believe that she still shouldn’t even be here yet, given her due date of 29th July. Bringing a 26-week preemie into the world isn’t an experience I’d ever wish to relive, but despite the rocky road it’s been awe-inspiring to watch her flourish on the neonatal unit. Since my two-month update, Matilda has successfully undergone eye surgery which prevented her from going blind and she’s overcome pneumonia, bouncing back and announcing she was strong again by pulling out her own ventilator tube! She had her first glimpse of the outside world last week when John and I spent an afternoon with her in the sunshine, our first chance to bond one on one – it really sunk in what we’ve been missing. She’s going to need some oxygen cylinders to help her breathe, but as soon as these are installed in our home the Cotton family is finally getting out of NICU, our discharge date set for Monday 30th July!

Matilda's monthly progress

2 Months

Two months ago today, Matilda decided she couldn’t wait to see what life was all about and burst into the world 14 weeks ahead of her due date. Since then, life has revolved around the neonatal unit – this week we moved from high to low dependency where Matilda is in a cot as opposed to an incubator. Her lungs are maturing, she’s more than doubled her birth weight and she’s finally able to coordinate suckling and swallowing milk. She has found her voice and even started to grow nipples, which were completely absent at birth! John and I still haven’t had a moment to take stock and comprehend everything that’s happened, but one thing we do know is how incredibly fortunate we are to have our feisty, vibrant daughter with us today.

Matilda's monthly progress

1 Month

One month ago today, Matilda was born 14 weeks ahead of her due date. It has been the most tumultuous journey of our lives and on three separate occasions, John and I were told to prepare ourselves for the worst. Matilda had other ideas and battled kidney failure, a hernia, an arrhythmic heart, a tube migrating and pumping food in the wrong place and multiple operations. Watching her grow and become more alert, feisty and determined makes me burst with pride and I will never forget the day when she was finally stable enough to come out of the incubator for cuddles. We have a long way to go yet before we can leave neonatal intensive care but given time, hope and the tireless efforts of the outstanding NHS staff, we will get there.

Matilda's monthly progress

Early Bird

Introducing Matilda Evelyn Cotton, who made her grand entrance at 8.42am, 25th April 2018, weighing 1 lb 14 oz at 26 weeks’ gestation. On 14th April, I was rushed into hospital having contractions five mins apart and when my waters broke I feared she would be too premature to make it. Somehow, she managed to stay in utero for another eleven days – albeit the scariest eleven days of my life – and surprised us all by coming out eyes wide open and fully alert. John and I are feeling a mixture of sheer elation, delirium through lack of sleep and befuddlement that any daughter of two chronically late people could be early for anything! Here’s to the beginning of a new adventure.