Cubface and Mama Grace

A 25weeker with a 10% chance – 10 years on

A post from the 9th June 2017, Cub’s 10th Birthday.

My Dearest Cubface,

I know how lucky I am to be writing this. I didn’t think you were alive when you were born, they wouldn’t tell me, you shouldn’t have been.

The room was silent. Full of people, yet silent. You were 14 weeks premature, I was 23 and blissfully naive as can be, in shock, in pain. This was when I first felt true desperation. I watched them force a tube down your tiny throat and your leg flinched, you must be alive. This was when I first felt true relief. I had no idea how bad things would get. The Polaroid camera wasn’t working in intensive care that night, I didn’t have a picture of you, I couldn’t see you for hours. When I was finally wheeled to your bedside I was happy, I shouldn’t have been, looking back at pictures it’s a sickening sight, but I was. You were my baby and you were alive and I was still blissfully unaware of the rollercoaster I’d just strapped myself into. This was the first time I studied you, your tiny, ravaged body and your sealed eyes, your beautiful face. You had tubes and wires, you tried to cry, I can’t imagine the pain you endured.

Within 24 hours you’d hit your first major hurdle, an Everest sized hurdle – your brain was bleeding. Babies as small as you shouldn’t be in this harsh, cruel world, you weren’t ready yet and your body was failing. The doctors, the miracle workers, gave you a 10% chance of survival. This was the first time I was told to prepare myself. I’m not going to lie, I didn’t have blind faith you’d survive, I believed in you but given the facts it seemed insurmountable, so I prayed. This was the first time I planned your funeral. I don’t know how much time passed but you, being you, stubborn and unwavering, weighing just 800g, climbed Everest. You lived. This was the first time I researched premature baby complications. On a list of ten, you ended up battling nine.

The next few months spent in hospital you became infamous. Infection after infection, numerous bowel surgeries, laser eye surgery to stop you going blind, horrific tests, necessary torture, damaged, scarred lungs, brain scans, x-rays, needles.. you overcame it all, with a lot of help from a team of miracle enablers, you proved yourself to be a true miracle. This was the first time I believed in miracles.

You came home, we became free, we lived some of our happiest days in our little house. It wasn’t without its blips, life was hard. You were on oxygen and would stop breathing often, I could scale 14 stairs in 2.5 seconds to revive you. You had terrible reflux and were continuously fed, your organs had all been born too early. We stayed in hospital quite a lot, your lungs will never be perfect. You had a lot of appointments, early intervention was crucial to help you live the best life possible. Numerous surgeries, hearing aid fittings, cruel eye tests, brain scans..you had such a tough time but amongst the medical drudgery, we found our moments of pure joy. This was when I first felt true happiness.

You learned to sit. You went to nursery. You met some milestones, at your own speed, on your own curve. You were still tube fed, had never spoken, your development wasn’t normal, your muscle tone worried the doctors, they were confused as to why you were floppy instead of tight, your brain scans didn’t match up, you were always a bit of an enigma. People told me you’d ‘catch up’, I’d smile and nod, but I knew you were different, I knew you wouldn’t be the same as everyone else. I didn’t mind, I loved you, I wanted you the way you were. This was when I felt acceptance, when I knew our lives would be different.

When you were 4 you had an operation. It was supposed to be quick and easy, to stop you vomiting, your reflux was very severe and you hadn’t grown out of it like they suggested you might. You were very thin, feeding was miserable, you were old enough now, it was the right time. The operation went wrong. Your surgeon, your lifesaver since birth, had to open you up because you were full of scar tissue from all your other surgeries, he nicked a nerve and your digestive system shut down. I asked if you’d die, they said you might. This was the first time I fell to pieces. It was, without a doubt, the worst day of my life. I became hysterical, nobody could calm me down. I stayed that way until a more familiar doctor arrived the next day and told me you’d be ok, but it’d take time and intervention. You were in there a month. They put you through such torture that month, you were older now, you fought and cried and begged for my help. This was the first time I questioned myself. Should I have put you through that?

Months later I realised yes, I should. Once recovered you could no longer vomit. Bad for tummy bugs but great for weight gain. You went from strength to strength, you didn’t have to sit so long for feeds and became more mobile, you eventually learned to stand and take steps! You weren’t losing calories so had extra energy to learn, you became a genius, learned to write your name, to count, to sign and socialise. You were content. This was when I realised that sometimes you have to suffer to survive.

I’m sorry for everything you’ve been through, the pain, the desperation, the fights, the torture, the tests, the tears, the fear. I’m sorry that when you sometimes begged me to make them stop, I didn’t. I had to let them keep you here. They kept you here. Look at the time you’re having, you are a star in a dark sky. You have made me who I am. I am stronger than I ever though humanly possible because of you. The last decade of our lives has seen earth shattering lows, seemingly irrevocable situations that I didn’t think we’d make it back from. But the highs, oh the highs, you walked out of your bedroom this morning. You walked! To get into your wheelchair, to go to school and sign to your friends that it’s your TENTH birthday. To have a class party thrown in your honour, to sit at a table, breathing on your own, smiling at your everyone, using your eyes to look at presents, using your hands to clap and your ears to listen to people sing to you. Using every bit of the impaired senses you have. Enjoying every moment with an uninhibited joy we can only dream of. You rarely moan, the world is so confusing to you yet you just want to line up cars, listen to music, watch lift videos on YouTube, learn new skills and walk. You want to shop and go to the park and laugh. You’ll never worry about the state of the world or money or heartbreak, your innocence is enviable and precious. This is the not the first time I’ve felt so proud I want to burst. I want the world to appreciate you like I do! You make it a better place. I know it might not be forever but right now, in this moment, you’re here, we made it and I’ll be eternally grateful that I’m your Mummy, I’m the one who got to ride this rollercoaster with you. You’ve got the love x 🎈🎈🎈🎈🎈🎈🎈🎈🎈🎈

Part One

I’ll never forget the once nonchalant midwife’s voice quiver as she declared my twenty-five week gestation baby was “coming now and there’s nothing we can do to stop it”. Two minutes earlier she’d assumed I was exaggerating. I pushed her away defiantly and sat up yelling “NO! NO, NO, NO!” Thinking the conviction of my refusal to believe what she’d just told me would make it untrue. Panic and hysteria set in and I was offered drugs for ‘pain’, in hindsight, I think they wanted to calm me down, for they knew what was to come.  The hell of prematurity begins before they’re born. Thirty-one hours before for me. Doctors gave me steroid injections to expedite the maturation of my baby’s lungs, baby would most certainly be born dead without them. Medical people came and went from my delivery room with looks on their faces ranging from pity to concern. Some actioned medicine, others observed the monitors, silently, sadly, and left without speaking. My memories from that agonising day fade in and out like waves, filling my brain like a storm’s crescendo before disappearing again, probably to the deepest corners of my mind where they lie dormant until next triggered. I suppose this is a defence mechanism, a product of trauma.

It hurt. I remember that much. I was in a Pethadine-induced haze for the duration of my labour, yet still remember my lower back feeling like it was ripping apart. My body was completely unprepared, this wasn’t supposed to happen yet. Medication given to slow things down and my body’s determination to speed things up wrangled against one another inside me as if they were waging war, it was excruciating. In the middle of all this was a baby; a tiny, unripe, fragile baby who was being violently forced from the safe place in which she was trying to grow, the possibility of fetal distress loomed throughout.

I remember neonatal consultants coming to speak to me. There was one in particular, whose name I can’t remember, he had kind brown eyes and can’t have been much older than I am now. He came to tell me ‘The Plan’, that baby, if alive, would be intubated and taken immediately to Neonatal Intensive Care. If alive? If? “Will my baby survive” I asked, words slurring on Planet Pethadine. The way he looked at me will hurt my heart forever. He looked as if he might cry, dropped his shoulders, and pursed his lips as the corners of his mouth dropped. He tilted his head to one side and paused, as if he’d felt the pain of my heart and the desperation of my plea. In a soft, resigned voice he told me he didn’t know. And that was it. No follow up, no reassurance, a man who had made it his life’s work to study and prepare for this moment, didn’t know. Up until then, I hadn’t contemplated that my baby may die. I should have, considering the circumstances but I was young, this was my first pregnancy. This was my first experience of anyone’s pregnancy, I had no idea. I didn’t cry or panic or worry, I went back to coping with the war waging in my body.  The vocal quiver midwife finished her shift and new staff arrived. I imagine it was a complicated handover, full of anguish about what was to come for the next shift. I didn’t get any their names but I often wonder if they think about my twenty-five weeker and me.

As the hours passed, activity in my delivery room increased. I remember speaking to my Nan on the telephone and telling her I was alright. looking back, I wasn’t alright at all but the Pethadine made it so. I can’t remember if I cried. I do remember feeling utterly isolated and alone in that hospital bed, isolated apart from the unripe, fragile baby everyone was waiting for. The Father of my twenty-five weeker was abusive. I had been systematically isolated from local friends and family, there was nobody close to call. Instead of support, I had him to my left, ‘warning’ me that if I didn’t get a female consultant to deliver my baby, he’d “never be able to look at me the same again”, I’d be “disgusting” and I’d “pay”. In my young, naive, brainwashed and exhausted state, I complied, as I always did, the risk of repercussions of not complying with him were too great. I asked the Midwife if a female consultant could deliver my baby. Even as I was saying the words aloud, I felt ridiculous. My baby could DIE, I wouldn’t have objected to aliens landing their UFO in the car park and delivering if it meant my baby had a chance of survival. The Midwife looked perplexed, I don’t think she knew what to say. She probably wondered why I was worrying about something seemingly irrelevant during piercingly painful contractions and such a bleak potential outcome of my labour, or perhaps she thought it was the drugs talking. Either way, she was kind, “It’ll be whoever is on shift, sweetheart” was her correct and fair response. My heart sank. Not only did I have the obvious fear, I now had the anxiety of what would happen after birth, how bad my ‘punishment’ would be. I wasn’t upset when he said he had to go collect his car from a city an hours drive away.

My pain grew steadily worse as the hours passed, another shift change, a new set of people learning about me, my failing pregnancy and the probably broken baby my body was expelling. I’d been in the delivery room for 21 hours, I had barely slept. In moments where I could think straight, I tried to get my bearings. The hospital ward was bustling with heavily pregnant Mothers and newborn babies. The ripe, ready, squishy kind. I could hear a woman screaming next door, I hope her baby was born healthy and crying. I could hear chatter and laughter and doors opening and closing. The only thing separating me from the real world was a door. It felt more like a universe.  I felt like I was in my own world. The world where everyone had a solemn expression, as if no-one dared show happiness or sadness beyond my door, for fear of giving me misplaced hope or misplaced dread. No-man’s land. No-full term baby land.

And then my waters broke.

The room had been quiet, one solitary midwife, him and me. And my unborn, unripe, fragile baby. My body had decided it was now, now it was time to force my baby into the harsh, unforgiving, cold, dark world. To my left I had him, pestering me to ask them to let him cut the cord. It was an emergency situation, nobody cared what I had to say at this point, I’d have to deal with that repercussion later. To my right there were midwives. An incubator was wheeled in by a consultant and a NICU nurse and everyone got ready for a crash. Up to that day, despite everything I had been and was going through, I had never felt as petrified or shocked as I did in the few minutes between my waters going and mytwenty-five weeker being born. They call it the ‘second stage’ and it usually lasts longer than mine did. My body weary and my heart still willing this not to be true, I did as was told and I pushed. I pushed with every last ounce of energy I had left and when everyone’s voices became panicked and urgent, I pushed with every fibre of my being.

It’s a girl. An unripe, fragile baby girl. She’s not moving. I peered down and looked at her. She was red, not blue, that had to be good? She didn’t move. She didn’t breathe. She was too small.  She looked like she had been dropped, like a baby bird who had fallen from her nest. The first words she heard me say were “Is she alive?” Nobody answered so I asked again, more panicked this time as I struggled to hold my head up, “Is she alive?”. The room was silent, everybody was silent. All eyes were on baby bird. The vibe had changed, it was eerie but urgent, calm and professional yet strained and tense. There was no crying, no marvel, no congratulations. My world stopped turning. A midwife scooped her up as you would an injured animal, with the perfect balance of care and urgency, a refined skill, and rushed her carefully, in a gliding motion, to the waiting Doctor. His name was Alistair and he was a man. He forced a tube down my baby bird’s throat and into her lungs to ventilate her. As he did so, her bent left leg flinched, her first feeling in this world was not the cold or a cuddle, it was pain. She was too small for pain. She shouldn’t have been born yet and was already suffering but she was alive, and where there’s life there’s hope. Alistair and the nurse rushed out of my room. My ventilated, fragile baby girl in the incubator with them, and I was alone again, in my world.

 

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For World Prematurity Day 2017

Today was your due date. You should have been born today. You should have been a healthy, squishy newborn with a cute wrinkled face and a lucky head of hair with a scent of heaven. You should have announced your arrival to the world with a strong cry from healthy, working lungs and been handed to me, a bundle of joy, so I could drink you in for our first proper meeting. I should have stared into your beautiful eyes, you full of wonder, me full of pride. A rush of love, a momentous moment, beaming smiles all around as I fell in love with you. I should have counted your tiny toes and admired your strong legs, the legs that had kicked up a storm in my tummy at 2am. I should have marvelled at your perfect, miniature hands, hands that I’d hold as you fed with an instinctive suckle. You should have had an unblemished brain, ready to learn, to develop, to become a doctor or a lawyer or a scientist. We should have had a fanfare, a celebration, a congratulations, “Welcome a precious, new baby girl!” A life full of promise and experience, unconditional love and lots of fun. It should have been the most miraculous day. It should have been.

On your due date you were three months old. You had endured 14 weeks of survival torture. You shouldn’t have been born so early that your beautiful eyes were fused shut. You shouldn’t have been silently taken from the safety of me and ventilated, the agony you must have felt. You shouldn’t have had needles forced into your thread-like veins. You shouldn’t have had an internal bleed that damaged your developing brain, affecting every sense, every movement, every thought you have. You shouldn’t have developed epilepsy. You shouldn’t have felt any pain. I shouldn’t have had to wash my hands until they bled just to be able to touch you. You shouldn’t have spent your first, precious bonding months alone in an incubator, sedated, fighting, struggling. Your lullabies shouldn’t have been the continuous hum of life support machines. You shouldn’t have had to battle so hard to stay alive. You shouldn’t have been fed through tubes. You shouldn’t have had the trauma of scalpels scarring your transparent skin. You shouldn’t have gone blue. I shouldn’t have witnessed crash teams bringing you back from the brink, over and over and over again. We shouldn’t have had to witness the devastation of other Mummies kissing their babies goodbye, babies who were just like you but didn’t make it.

I’ve let the 14th of September slip by quietly every year for a decade. We don’t celebrate. I’ve mourned the baby you should have been, the life you should have had. I’ve grieved for the babies who didn’t make it home. I’ve come to terms with my own trauma, and navigated the utter sorrow of yours. We’ve met many Doctors at the top of their game along the way, nobody can tell me why you came so soon. I now accept their medical questions will never be answered, you see, I think I know why; You were meant to be. You shouldn’t have suffered, but you should have been you, and you wouldn’t be you without what had gone before. Your destiny was a different path. Your journey should never be underestimated. I’m ready to tell your story. I didn’t get to Italy, instead we went to Holland. I’m so lucky I get to admire the Tulips with you 💐 Here’s to Cub, 10 years and 14 weeks old today. She always should have been. 💋🐯

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