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 ….

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.

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?”

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.

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!

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.