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Littlefoot's Journey

"Some things you see with your eyes, others you see with your heart"

Journey to The Great Valley Part Three

 

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A beautiful creature sent to this earth to show me love id never known before. A gift from god to show me what life is all about. Love. Here my gift was laid in a tiny cot covered in tubes, holes and a thin red line etched into her, evidence that she wasn’t whole. She was broken. Sent to me to fix her. Glued together. She lay in a cot, like a fragile porcelain doll. Not to be touched. Display only,  was her notice. I longed to pick that delicate dainty doll up but the instruments keeping her alive whispered to me to not touch. A child longing to play with a loved toy, a starved dog taunted with food, a mother kept from every bond sharing moment with a newborn. No feeding bottles. No nestling her into me. No showing her off to the world. She was my most precious collectible, my fine china, sat in its display cabinet. To look at but not touch. Fragile.

The tubes kept her alive. A machine provided air in and out of her lungs. The tube covering her mouth was stuck on tight with what can only be described as a Hannibal lector mouth guard. Her lips were cracked. Her mouth as dry as the desert and her hair clung to her head unwashed and untouched. She lay like a stone statue, frozen in time. A little sleeping beauty who wouldn’t respond to her true loves first kiss. The morphine kept her pain free but brought sedation. Brought endless days of me seeing her motionless. Never ending days sat in a chair next to her bed, countless bad news and prayers.

She wouldn’t come off the ventilator. The nurses tried to lower the amount of air pumped into her but she couldn’t cope. Every day we had a plan, a plan that never worked out. Everyday I found the strength leaving me and every night I found myself collapsing onto my bed defeated. Morning would come and id walk across the road to the intensive care unit praying id see her awake and breathing on her own. No such thing came. We were given a room in a house over the road from Clarendon Wing at Leeds General infirmary. The Sick Children’s Trust believe families of seriously ill children should be able to stay together, minutes away from their child’s bed during treatment. It was thanks to them we were able to stay so close to our daughter during her darkest days. Eckersley House was our home from home. Just opposite the entrance to the hospital, it had rooms for parents going through the same nightmares. Every day id rush over the road, past the people going in to visit loved ones, expectant mothers, newborn’s carried out in their little car seats with their parents carrying balloons and presents. Every night id walk back over the road away from my daughter on intensive care. I use to hate walking past those expectant mothers, with their nighties on, slippers on, bump poking out, a cig perched in between the womans fingers. Oh how I despised them. Id curse them when id see them a few days later, armed with their healthy child and the huge smiles plastered all over their faces. I hated them for their happiness. Their total lack of awareness of all the illness in the air. The children confined to days, months living in that hospital.

I had never ate a raw egg throughout pregnancy, nevermind smoking 20 a day. I never did a thing wrong. Yet here these women were awarded with a healthy child. Looking back now, I know it could have happened to anyone. Just one of those unlucky few. But was I unlucky? I will never be able to answer that question. I am so happy, grateful and so very thankful I have my daughter but at the same time I always long for her to be healthy. I am told that will never go away, mourning the loss of a healthy child. Like the death of a loved one, that feeling will never ever go. In time however I am told it becomes easier. It certainly didn’t feel bearable as it is now back then.

We stayed like that paused on the television screen for weeks. No change. The repeated trips to and from the hospital morning and night. The canteen food. The chair sitting. Watching other families come and go. Seeing families break down at bad news. The beeping of the machines. The prison that confined us to the nightmare that never stopped. People on social media went about their own lives, the people in Leeds walking to and from work, the drunks staggering across the street, the laughter of children from outside the walls. Life was going on for everyone out of this hell. Family came and went. Consultants swapped over. This is how it went on and on. When one day we were told our littlefoot was coping with the decreased amount of air from the ventilator. Slowly after weeks the amount of air being artificially given to her came to a halt and our daughter could breath on her own. Out came the tube. Off came the horrible Hannibal mask and then came the cuddles.

The first day I held her after weeks of her sitting in that display cabinet was one of the best days of my life. They sat me in the chair next to her bed, very carefully a nurse handed her to me. Without the mass of tubes I could see her beautiful face. It was like being handed my baby for the first time all over again. I held her in my arms, too scared to move in case I tugged on the wires snaking around her. This tiny, battle scared, piece of treasure needed keeping safe. Away from the cruel life that had already tortured her. The love I felt, I couldn’t put into words. My whole world, cradled into my arms, ready to shatter at any moment.

From then on things became a little better. Her morphine gradually decreased, meaning I got to see into those eyes. Having not seen her awake in so long, those eyes hypnotised me with their beauty. Huge pools, that reflected the pain she had endured. I got to cuddle and hold her as much as I wanted. The smell of her skin, the feel of her hands in mine, watching her little chest going up and down on its own. This was my first opportunity to bond with my daughter in what felt like forever. We were taken to a Neurology Ward in LGI to their High dependency unit until Littlefoot was totally off all pain drugs. The neurology ward was to be our home for months. Every child on this ward had something not quite right with their brain. I met other parents who had been there months upon months. I met children confined to their bed, having seizures every few minutes. I saw so many children with different neuro conditions. Some could talk, walk… some lay motionless in bed, in their own beautiful quiet world.

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Until now I had never really seen anyone brain-damaged. You see on television all the time stories of cancer patients, alzheimers… Never had I watched my daughter’s life on-screen. I wasn’t used to seeing so much pain and hurt. Id never seen parents crying round a hospital bed, children screaming out in pain, nurses trying their hardest to deal with so many patients and so little resources. When you have a baby, you never get told that instead of this fantastic new life you imagined, you could get ushered through a back door. Pushed so far away from everything you prepared yourself for and into a nightmare. A nightmare you couldn’t wake from no matter how hard you wished, how hard the tears fall and how much you shut yourself away from reality. One day a boy roughly in his teenage years got wheeled onto the ward, strapped into a wheelchair. I watched as the boy made loud screeching sounds that echoed around the anti bacterial smelling corridors. I watched as his head lent to one side, not moving. His limp, lifeless body slumped into a chair that encased him. Imprisoning him. His eyes rolled back into his head, the noise so loud coming from his lips that didn’t quiver. They didn’t move. Like a stone statue. Frozen in time. I didn’t know if I should look, would his family feel I was judging? Giving them pity? I glanced away quickly, not sure of how to act. Later a nurse came in and started chatting to the boy’s mother and I overheard laughter coming from the nurse. I looked over, curious to know what caused the sound of laughter, you so rarely heard in this place. The boys mum told me her son had a thing for the ladies, nurses in fact. I learnt the boy could communicate to people using his eyes. His mum asked her son if he thought I was beautiful and it was then that I went over and saw closely the boys beautiful smile. A smile that could take your breath away. There the statue sat, for everyone to admire. For now I could see the love that emitted from him. It lingered in the air, clutching at you, clawing you to him. His smile, I will never forget. His eyes blinked twice and his mother laughed as she told me I wasn’t his type. I wasn’t a nurse. I began to wonder what my daughter would be like in the future. Would she be able to talk? Could I get her to communicate by some other means like this boy had learnt?

Evie was sent for an in-depth scan of her brain called an angiogram, whilst we found our feet on this new ward. The consultants explained they wanted to look further into our daughters brain to try to find answers as to why she was brain-damaged. She was to be put to sleep so they could perform the scan which would roughly take just under an hour. A special dye would be inserted into her, that would show up her brain vessels so they could get a better picture of what they were dealing with. Yet again I signed the papers for the anesthetic. I walked down to the MRI department and said goodbye to her whilst they inserted the anesthetic into her catheter.

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Then came the waiting game. It was like waiting for a long drawn out football match. The results took what seemed like forever. A few days later the neurologists came to tell us things we never dreamed of. My daughter has something no one has ever seen. Scans have been sent to Great Ormond Street, shared with neurologists everywhere and her scans have baffled them all. You see a brain is like a plug, wired up correctly to make your body function. If not wired correctly the brain doesn’t work and it can affect the whole body. In your brain you have millions of vessels that carry oxygen to different parts that help you see, talk, remember, move …. like a plant needs water and sunlight to grow, a brain uses its roots to absorb oxygen so it can develop. Littlefoots roots werent absorbing the oxygen it so badly needed. The plug wasn’t wired correctly resulting in..strokes.

The vessels in my daughter brain hadn’t been made correctly when she was inside me. I hadn’t made her whole. Her vessels were weak, flimsy, missing, dying. Every single day from this news ive always blamed myself. No one can tell me why this happened. Why her brain wasn’t made correctly inside of me and because of this I blame myself, my body. I think back to seeing newborns on television, them screaming, crying, wriggling their little arms and legs. I think back to the time my daughter was born and remember her just laying there motionless. She hardly ever moved, the only movement she would do is arch her back , which we later found out could have been seizures. She hardly ever cried. Hardly ever moved. After the heart news, I had thought it was just down to the hole in her heart taking up all her energy. How wrong I was.

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Looking at old photographs you can tell roughly the age, the old crinkled black and white photos, yellowing at the corners. Looking at my daughters brain scan they could tell roughly the age of the damage. These strokes had happened before she was even born and after birth. How? How could a baby have a stroke inside someone? I was being told things I didn’t even think was possible. Why hadn’t I realised? Why hadn’t the midwife or any of the medical profession picked up on this? The truth is even with all the fantastic care we have had from the NHS we have also had errors. How no one picked up that our daughter was severely brain-damaged when she was born, I shall never know, why the midwives never picked up on scans that her brain wasn’t formed correctly will remain unanswered. Could the strokes after birth been prevented if they had known of her brain? So many questions, so little answers.

The neurologists showed us a picture that resembled a puff of white smoke that was our LittleFoots brain vessels. Wisps of smoke, blowing out into tiny, thin lines that dispersed across the image, scattered about here and there. Those wisps of smoke carried vital resources around the brain. Then they showed us a different image, one that was so structured, railway tracks ran all over the little country, letting trains filled with carriages filled with supplies to the different cities. That was the healthy version. Ours looked like tiny dirt tracks scattered about villages, some not even providing access. The difference was shocking. We were told that our daughters little dirt tracks had started to fall into disrepair. Her vessels were dying. The reason why she was brain-damaged. For some reason the vessels were slowing deteriorating and blocking entrances to parts of the brain which was causing them to die. It was then we were told that this condition was life threatening and if the vessels kept on dying then it would also be life limiting.

I though i had overcome the worst news possible when i found out that our daughter may never run in her first sports day race or sing in the school choir. To be told our daughters brain was starved of oxygen, her brain vessels dying and that if it carried on it could mean a shortened life span hit me hard, knocking the breath out of me. I was supposed to watch my daughter grow. I was supposed to learn her all about life, wait for her coming home from school, throwing her backpack down, telling me all about a boy she had started to like in her class, bringing a boyfriend home for the first time, dropping her off at the cinema with friends, watching her graduate. See her find her own path in this world, watch her become anything she wished to be. Watch her walk down the aisle. Have children. Giving me grandchildren that i would cherish dearly. Then as i lay taking my final breath id know she’d be safe. Id know that my life had meaning. Had a purpose. For it was to watch her grow and unknowingly give me every reason to live.

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Now i lay in bed dreaming of my daughter’s death. I wake up sometimes in the night crying, feeling the wet tears upon my cheeks, the nightmares feel so real that i wake screaming. The nightmares seem to creep slowly like smoke from a fire downstairs, withering under doors, snaking their way into my head. The ash. So hot. So close. Making it hard to breathe. The smell of smoke clings to me, refusing to go away and then i wake. The image of my daughter laying in a coffin. A tiny box , a tomb under ground detaining her body. So far away from me. A body i cannot touch, hold, kiss. Instead words on a tombstone declaring to everyone that Evie-Lilly lays here. Flowers baring the words Daughter, sat upon a grave, their beauty overshadowed by the sadness. Instead of my daughter watching me grow old, my future was to bury her. Knowing that one day i could walk into her bedroom to wake her up and find her laying there as stiff as a board and as cold as ice.

The consultants talked about an operation to her brain they could do when she was older that could prolong her life. Give us more time with her. More time to cuddle her and show her how much we love her every second of the day until that looming darkness draws nearer. For now she was much to young to under go such big surgery and wouldn’t survive the procedure. All that could be done, was to get her feeding, get her stable, send us to Pinderfields and from there set up our new life. Community nursing team for children with life limiting conditions, set us up with physiotherapy programmes, occupational health, visual impairment nurses, throat specialists, regular heart scans, brain scans to judge how quickly it was deteriorating, specialised teachers trained in global developmental delay…. millions of different professionals. Then came the suggestion of ringing Martin House children’s Hospice for respite care and support.

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How had i gone from giving birth to talking about children’s Hospices? A hospice. I imagined a cold, hospital looking building, with its smell of disinfectant mixed with decay. The sounds of children in agony. A morgue. The coldness. The silence. I didn’t want any of that life. I didnt want this future that had been thrust upon us. I wanted to go home. I wanted to show her off to the world. I wanted to take her out in a pram and let the sunlight warm her pale, grey skin. I wanted her to get out of this place, take in fresh air, walk and keep on walking away from this life and into the life i had planned for us. I looked at her in her little hospital cot that i had decorated with teddies, blankets, a cot mobile and toys from home. Toys she couldn’t play with. Teddies she couldnt see. Get well soon cards and balloons from friends and family littered her bed space and i thought GET WELL SOON?! She will never get well! I hated the cards. I hated the balloons that bobbed on the breeze. I hated the sound of laughter outside the walls. I hated everyone with a healthy child. I hated them for their happiness. The jealousy consumed every inch of me. I cursed and i seethed when i saw people complain of having the flu or their child acting up. How i hated the world and everyone in it. How can people complain about such pathetic little things? How could people moan about their rubbish life? I couldnt stand looking at other children. I couldnt watch them talk to their parents, run, laugh …. live.

I thought about home. The cot her dad had built, the mountain of clothes in her wardrobe that hung untouched. The toys that would never be played with, the door swing she’d not be able to sit upright in, the pram gathering dust. The pages of books that my daughter wouldn’t be able to see, the films i had ready for us to snuggle up together to watch … useless. The bottles and formula that would never be used. Id never feed her like other mums. Id never wake to find her sitting up in her cot. Never watch her crawl, reaching for her toys. All that mountain of stuff laid unused at home. A waste of money. A waste of my time. Just Stuff.

I didn’t want to face any of the constant reminders my child wasnt healthy. I suddenly didnt want all the things i had longed for. Get rid of it all. The first few days of knowing about my daughters brain disease were the toughest of my entire life. Even now i go through moments, every few months in which the jealousy overwhelms me. I could be sitting in a cafe, watching children eat. Walking round a park and seeing children running about, swinging, climbing. I walk past, pushing a wheelchair with my daughter who cannot sit on a swing let alone climb. I carry on, the sounds of children’s laughter becoming more muffled. I carry on alone, pushing my daughter who cannot talk to me or communicate at all. Silent. Holding back tears. Alone. Children’s parties are the worst. I remember the very first party we got invited to, how scared i was going, seeing the children in the play area playing. My daughter sat on my knee unable to take part, left out. Trying my hardest to find something in the play area to get involved with. Nothing. Back to the seat. Back to trying to blot out everything that was going on around me. Then came the tea party time. Then came no space at the table for my daughter. No chair we could sit on to feel included. No eating of the food. Sat in a corner on a spare seat. Left out. Back to the car. Back home. Walking up them stairs to the bathroom to silently cry so no one could hear. No one could hear me loose my strength. Then id come downstairs, put on that big happy smile, “Well we tried, we couldn’t of done more. Least we’ve been”. That brave, confident, strong mother who tries so hard to get my daughter included. The mother who keeps her head held high when people stare at my daughter screaming. The mother who holds her tounge when people treat us differently. The mother that waits till she’s away from people to let her tears fall, the mother sat on the bathroom floor cradling her knees, sobbing for eternity.

You carry on. You have to. Every knock back, bad news, i portray myself as some amazing mother who has it all sussed out. Daughter has a heart operation. Its ok now we have fixed her heart. Daughter has severe brain damage. Its ok we’ll constantly work at her to give her the best life possible. Daughter has countless needles filled with blood and fluid taken from her and numerous times she is left on a theatre bed. It’s ok they need the blood to try find out if this is genetic. It’s ok they need to do this operation otherwise my daughter will die. A mother who has had to restrain her daughter, her arms flailing around, whilst doctors try insert catheters. A mother who trys to hold back tears every single time she has to hold her daughter down whilst she fights, the doctors covering her struggling face with an anesthetic mask. Hearing her cry become hoarse. Her screams becoming muffled, all the while singing to her lullabies to try to settle her. Seeing her eyes look at you like you have caused her so much pain. Mummy why are you letting them prod and poke me? Mummy why are you letting them slice me open. Sssssh its ok Littlefoot,  Mummy is here. Is that supposed to comfort her?

For i am the mother that let people hurt my daughter. I am the one who has to see and do the most horrible of things for the well-being of my child. I have to leave her on an operation table and walk away. I have to watch the consultants put cameras down her nose, tubes down the back of her throat, watch her choking unable to breath. For i am the mother who always tries her hardest to get my daughter to experience things healthy children can, i am the mother who then goes home and cries her heart out alone after not being able to get involved. The women who hides her tears so no one knows just how upset i am. The women who burys it deep down so she can be strong. I supposed i am strong. I suppose i am an amazing mother to a poorly girl who relays on me for everything. I’m so strong that i didn’t give up when many others would.

We had learnt then that our life would never be what we wanted it to be. Her life wouldnt be like other children’s. We slowly started accepting her fate. We would wait until she was older to perform the operation to prolong her life. We would try get her feeding. But why was that so hard to do?

 

To be continued ……

 

 

Journey to the Great Valley Part Two

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When I was younger I once witnessed someone having a seizure. I remember her body collapse to the floor like a controlled demolition. The thump of her weight hitting the cold, hard floor. Then came the shaking, the earthquake tremors hitting the top of the Richter scale. Her whole body flailing around. When I first saw my daughter have her first seizure my heart broke. She had just come back from theatre, following her PDA ( Patent Ductus Arteriosus, the name of the operation to close off the open duct to her heart). We stood around her bed, celebrating the fantastic news that she was now a healthy little girl. Then the shaking started. Her body, with all its wires snaking over her, convulsing rapidly. All at once nurses gathered round making sure wires didn’t become dislodged. Her tiny body bounced upon her bed like micro wave popcorn firing. Her limp, lifeless, drugged up body repeatedly hitting the sides of the bed. I couldn’t move, my eyes didn’t blink. I couldn’t cry. I was transfixed. My body had gone numb. Eventually the nurses gave my Littlefoot medication to stop the seizure as it had gone on for too long. All I remember was thinking, it should have stopped by now.

When the seizure had stopped, her body lay still. Hauntingly still. I couldn’t cuddle her. I couldn’t hold her close to me. All I wanted to do was hold her. I couldn’t do anything. All through my daughter’s life,  I have had to sit back like a spectator, watching on. Mothers are supposed to protect their child. I felt like everything was out of my hands. The doctor came and told us the seizure could have been as a result of her going through a big surgical procedure. I wasn’t fooled. The look on his face told me this man wasn’t sure. That night I was awoken by a phone call from the intensive care department asking us to come to our daughter’s bed. My heart was in my mouth. Something must have gone wrong. I flew round that corridor and was greeted by the doctor telling me my daughter had experienced yet more bad seizures. His plan of action was to send her down for an MRI scan of her brain to make sure everything was fine.

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She was taken down to the MRI department in her cot, her machines carefully taken with. When she came back to the Intensive Care unit, all I could do was wait for the results. Was it simply due to the operation? Not once did I think it was the news that we got. A consultant came onto the ward. We knew all the different consultants by now, we’d been there a while, this man I knew wasn’t a regular to the ward. We were escorted into a side room. As soon as I entered and caught a glimpse of the table in the middle, with its box of Kleenex I knew this was yet another room of doom. With its serene moving waterfall canvas, its cosy sofas and scattered cushions. We sat down with this new face to be told he was a neurology consultant, he’d had a look at our daughters MRI scans and wanted to chat with us about them. When he started to tell us, the room around me disappeared. The only thing I saw was this mans face telling me things i’d never heard of. My baby had suffered significant damage to her brain, the result of numerous strokes. How could this be? I was always under of the naive impression that strokes happened to the older generation. I knew that a stroke could leave a person numb, take away their speech and movement. I listened as this man explained that strokes can happen to anyone, even babies like my own. My daughter had numerous strokes, effecting her Occipital and Parietal lobes. I thought back to High School and Miss Senior explaining the human body, I couldn’t remember. Why couldn’t my own brain function?  My mind had gone blank. I was then told that the brain is split up into different areas, of which do different jobs. Parts of the brain help you see, move, problem solve, speak, remember. My daughters brain had died in the Occipital Lobe which helped you to see. Her vision would be greatly damaged, with the possibility of blindness. My daughter blind? She wouldn’t be able to see me? To see her mummy’s face? She’d never be able to read lines for her nativity play. Never see her home, her family… life. How would I tell her about the trees? The beautiful colourful flowers? So many questions filled my head. Not only would her sight be affected but it had also had a serious impact on her movement. When you move, its the result of your brain sending signals to the parts of your body to do so. I learnt the left hand side of the brain controls everything on your right and vice versa. My daughters brain had huge parts that covered one side of the brain that had died. We were told that her movement could range from walking with a limp, to being confined to a wheelchair for the rest of her life.

How was my daughter supposed to go to Ballet? How would she twirl on her beautiful Little feet? How would I see her running carefully, holding her egg upon her spoon? Id never see her walk. Instead of a pram i’d push a wheelchair. No one can understand the pain. When you have a child you think of all the amazing things that comes with that. The learning to ride a bike, the sight of your child running down the stairs to their presents at Christmas …. I could sit all day and write about all the things I will never get. When my daughter was born a part of her died and with it went a healthy child. The day was the start of my life mourning the loss of all the things I looked forward to. This man in front of me couldn’t tell me why this had happened, the only thing he could tell me was that they could tell the age of the damage, that this had first started happening a long time ago. It was suspected that the first of the strokes had maybe happened either whilst I was pregnant or at birth due to the traumatic labour. Then other strokes had happened after birth, maybe even after the intense seizures.

I’ll never be able to portray how I felt that day. I could only see this man. Only hear his voice but his voice was some distant sound playing behind, all the questions that I kept asking inside my own head. When you dive under water, you can faintly hear noise above the water but you can also hear the water around your ears. That’s how it felt. That and the fact my heart was breaking with each word he spoke. To him he had no connection with us. He didn’t have the love I felt for my daughter. To him we were just another family he’d need to tell bad news to. Yet another case. Another scan. To me it was my whole world crashing. The consultant wanted to have another in-depth scan done of her brain vessels called a MRA ( Magnetic Resonance Angiography). The scan would be conducted at LGI, where a team of neurologists would carefully look at my daughters brain and try to find out the cause. My daughter would spend a few more days at Leicester, giving her body a bit more time to heal and be safely transported in the Embrace ambulance under close observation to the Children’s Intensive Care unit at Leeds. We were then told we could see the MRI scans of my daughter so we could see for ourselves the damage.

I walked back onto that ward in silence. I had not shed a single tear. I walked like a zombie to the computer screen they had set up next to my daughter bed, alongside the heart surgeon who had operated on our Littlefoot, yet more consultants and the neurologist. On the screen lay a picture of my baby’s brain. Every one around that bed had their eyes upon me. The neurologist pointed at various parts of the picture highlighting the broken parts. The broken parts however would never mend. They would never be a cut on your knee that vanishes in time. They forever lay on that picture, in her brain, dead. I looked at her brain, with its huge patches obscuring the perfect picture and then it hit me. I couldn’t breath. It felt like someone had their hands tightly around my neck, pressing down. How I didn’t collapse onto that floor ill never know. The tears ran down my face. I had been in shock. The truth hadn’t fully hit until I saw that picture. I needed to see it to believe my beautiful baby laid there was severely brain-damaged. I wanted so desperately for someone to say it was a nightmare. No such thing came. As soon as i started crying the heart surgeon pulled the curtain around our bay so the other parents couldn’t see my world falling apart. I remember the surgeon offered me a sweet instead of a tissue as he didn’t have one on him. May seem stupid to some but that was the only small kind gesture, that kept me from standing there crying for an eternity.

You could have two children, both with the exact same brain damage, one could end up walking with a limp, the other confined to a wheelchair. One child may be able to talk, play the other not able to do anything. Here was my only little hope, the tiny hole letting light in. If you put in the work you got results. If you gave up, you’d have that second child. I was determined to not have that. I needed to step up to the mark, push my daughter, constantly work with her to get the best life possible. You get no where pretending. At times believe me ive felt like giving up, the countless bad news, the constant repetition to get nothing out of it, seeing other children doing things mine never will, being so god damn jealous to death of seeing parents celebrate their child crawling, walking, dancing…. the list is endless. The pain never goes away. One minute you’re celebrating a success, the next something has happened and your having to pick yourself up, trying hard not to breakdown.

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Try walking down a street. Walking past mothers holding their child’s hand whilst they walk alongside each other. Try sitting having your nails done, to seeing a child your daughter’s age having hers done with her mother. Sitting at home after a day of being kicked, hit and screamed at, to see happy smiley children on social media, getting an award for some after school activity your child will never take part in. Other’s achievements are greatly envied. Then the awful guilt. Knowing it’s not other peoples fault they have a healthy child and you don’t. All my life I shall wish i had what others have and each time feel guilt for hating them for having a healthy child. It’s what comes with having a daughter with complex problems. You sit and ask yourself what you did wrong. Did I not do something during pregnancy? Was it my body that had made my daughter like this? Why have I been given half a child, when I see everyday children being given up by parents, people on the television who have baby after baby put into care, child abuse, drug addicts with children …. Why us? Then i tell myself it was just one of those things. It wasnt God choosing special parents for special children. Its life. Its cruel. It’s not fair.

When I think of all the negatives, I also look at the positives. Yes I will never see my daughter walk down the aisle to marry, ill never have a grandchild but i get those beautiful smiles. I get to experience really appreciating every single moment, every tiny achievement. Every fight brings more strength I  never thought id have. Holding a rattle for 20-30 seconds is nothing to anyone else. To me, its the riding a bike to other parents.  Her hand reaching out for my face is the parent watching their child score the winning goal at a football match. Every tiny step is a huge milestone, each tiny step leads to great things.

Littlefoot: Mother, what’s a long neck?

Littlefoot’s Mother: Well, that’s what we are, dear.

Littlefoot: Oh. Well, why can’t I play with that three-horn? We were having fun.

LittleFoot’s Mother: Well, we all keep to our own kinds. The three-horns, the spike-tails, the swimmers, the flyers… we never do anything together.

Littlefoot: Why?

Littlefoot’s Mother: Well – because we’re different. It’s always been that way.

Littlefoot: Well, why?

Littlefoot’s Mother [chuckles] Oh, don’t worry so much. When we reach the Great Valley, there’ll be many, many long necks for you to play with.

Littlefoot: [sighs] I wish we were there now.

Littlefoot’s Mother: Well, it’s a long way yet. Past the Great Rock that looks like a long neck and pass the mountains that burn… still a long way, but we’ll get there

 

The days after that were a blur. The nurses started to get ready for our planned departure. Littlefoot was still fast asleep, drugged up on morphine. Connected to all the wires. The ventilator doing all the work. I tried to come to turns with the prospect of a severely brain-damaged daughter. Family came down to visit. Everyone cried, whether they did it in front of me, not being able to hold it back or those that waited till I was out of sight so i wouldn’t see. Embrace came and very slowly and carefully transferred her back into the little chick house. This time covered in more wires and a scar that travelled down her beautiful peach skin. On we went, back to Leeds, to our next home there, intensive care. Little did we know we wouldnt be going home anytime soon. My daugter wouldn’t breath on her own, she needed surgery to her stomach and then there was her throat. What was much worse however was another secret my Littlefoot held ….  For at Leeds we learnt much more about our daughters brain than we did in Leicester. We learnt it was life threatening, life limiting and had baffled everyone, even neurologists at Great Ormond Street.

 

To be continued …..

 

 

 

 

 

Journey to the Great Valley Part One

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I’ll always see the image of my daughter foaming at the mouth, every time I think back to those early days in Pinderfields.  Her face bright red, struggling to breath due to the milk cascading out of her little mouth. Her beautiful eyes looking at me, pleading with me to stop the pain. I had told the nurse again and again she wouldn’t tolerate the amount of milk they were pumping into her via a NG tube. For those that do not know what this is, it is a Nasogastric tube that gets inserted down the nose, past the throat and into the stomach. This was the only thing keeping her from starving to death. We had gone past the point of trying to get her to feed orally, they had finally seen for themselves what I had been trying to tell them for days. Two nurses had come into our little make shift home, informing me that they would be inserting a plastic tube into her to help her gain weight. I sat there, a 23 year old first time mum, listening to the nurses arguing about how much volume of milk to give my daughter. At home she was only used to taking an ounce of milk every four hour and the majority of that would dribble down her chin. There was no way she would tolerate the 4ml they were intending to pump into her tiny stomach. I waited for them to argue it out, thinking of how unprofessional the scene was in front of me.

The first time I watched them pin my daughter down onto a hospital bed was the first time they inserted the NG Tube. I stood back whilst a nurse restrained my tiny, terrified baby, hearing the screams escape from her little lungs, fill the air. Another nurse shoved a tube down her nose, once it hit the back of the throat, the choking started. The gasping for air. The screams ceased and I found myself fighting back the urge to push the nurses away and keep her out of all the pain they were inflicting on her. Wet tears poured down my cheeks, my fist screwing the bottom of my baggy top up, wishing for it to hurry up. Didn’t they know it was hurting her? Once it had finished, I scooped up my little dinosaur and cradled her into me, telling her she was alright and that the nasty nurses wouldn’t touch her anymore. Left alone in the room, cuddling my child, the continuous dim sound of dripping from the pump, the muffled footsteps in the corridor of nurses going back and forth carrying out their duties, I thought about all the times id seen my friends feed their children, how my mother had fed my brothers and sister. This wasn’t how it was meant to be. I longed to be home, I longed for family members and friends visiting our newborn. I longed for dressing her up in the mountains of clothes I had hung up in her wardrobe, colour co ordinated hangers to distinguish the different age sizes. I wanted to put her down in her little moses basket. I didn’t want this lonely foreign room with its pull out bed inside a wardrobe for me to sleep on. I didn’t want to watch my daughters arms and legs flailing wildly as nurses pinned her down. Ten minutes into my daughters feed, the nightmare started.

I quickly reached for the emergency button and in came nurses racing to find out the cause for the loud noise, echoing like a air raid siren warning of danger down the corridor. I had my daughter tilted forward upon my knee, the milk cascading down. The choking. The panic. Pleading with them to stop her choking, to stop the projectile vomit. Blaming them for pumping too much milk into her. That was the first time after her birth I was terrified id loose her. Looking back, that episode was nothing compared to the endless list of terrible, unimaginable torments we’ve had to endure. Once my daughter started breathing again, the nurses agreed with me that the only way to get her fed, was to start of at a small amount and slowly increase the volume.

The next day we were told a space had come up at the Children’s Heart Unit at Leeds General Infirmary and that an ambulance had been booked to safely transfer us over. I packed up her little suitcase and followed the ambulance crew. We waved goodbye to Pinderfields, hoping that the experience would be better at this new hospital. On the way, the ambulance broke down on the motorway. Yes ladies and gentleman, it broke down. We pulled into the hard shoulder waiting for someone else to come pick us up. I remember that day it had snowed. A thin blanket of snow covered the ground, it was so cold. We finally made it to the hospital after a rescue ambulance stopped by and then we were welcomed into our new home.

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My Littlefoot with her toilet roll paper Cushelle toy, her Great Aunty Maureen gave her from one of her many competition winner prizes before she sadly passed away.

The Children’s Heart Unit at LGI, was a little ward full of little side rooms, a play room, a nurses station, a couple of open bay wards and the high dependency unit. We were shown onto the high dependency unit, as they had no other beds available and we waited for the consultant to see us. Looking around the ward, children of all ages laid in beds and cots. A little baby girl a little older than my daughter lay in the bed next to us. Her mum was also young, she had been here since birth. Her mum had brought her rocking chair in and other toys. I looked at her little baby, with wires all over her thin body, machines circled around her bed and took one look at my Littlefoot and burst out crying. Where was I? Why had I never seen such poorly children before? Why had I never noticed the children that don’t make it home after birth? The children that spend their life in a hospital bed. Programmes on tv don’t tell you of this other world, the midwifes don’t tell you this could be a possibility. No one sees what goes on behind closed doors. The children screaming out in pain, the sound of machines constantly beeping and alarming. The continuous routine of the nurses and doctors, the stats, the checks, the walk rounds. You knew a family was getting bad news if they were taken into one of the side rooms. No one knew what to say to each other but we all felt each others pain.

Now you might have realised the joking and humour hasn’t been displayed in this post. What I am telling you had no room for laughter. I did not laugh. I did not joke. I watched. I waited. Oh how I waited. We had been told after a heart scan by the consultant that Littlefoot’s heart was working way more than it should be doing due to the fact she had  suspected coarctation of the aorta, which is a narrowing of the vessel that carries blood to the heart and she also had a open duct that should have been closed when she took her first breath at birth but somehow it hadn’t closed. Her breathlessness, her tiredness, the fact she was so lifeless, not feeding was all down to this open duct and narrowing of her vessel. Her blood pressure was through the roof and she would need operating on to sort the narrowing and to close the open duct otherwise my daughter would die. Death? I had never even thought of the word. Suddenly the seriousness of the situation hit me like a tidal wave. If I hadn’t of persisted with the midwives that something wasn’t right, would my baby still be alive? the answer… no. She would of died at home from starvation and heart problems. The consultant assured me they could operate and it was a straight forward procedure that would take roughly 4-5 hours and be done as soon as possible before things deteriorated. I looked at this woman, who held all the answers. I instantly liked Elsworth Brown from the very first meeting. She was a caring lady who explained in depth exactly what was happening and didn’t use medical words I didn’t understand. I had faith in her from the beginning. At this point they had moved us off of the high dependency unit and into a little side room near the nurses station. Our little room had a fish tank outside, that was the only thing that felt.. normal. I used to sit and watch the fish swim along, singing to my daughter about fish. I brought in blankets from home, toys, teddies, clothes. The ward found us a old checkered pram so I could walk up and down the ward with her to get her to sleep. That ward was our prison. We were not allowed to take her off it. Imprisoned in the endless pain and torment. Longing for the day when she could have her operation and the prospect of home. Days turned into weeks so quickly in that place. Family visited when they could. I felt so alone. When we finally got the news of a scheduled operation date, I was over joyed.

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On the LGI Heart Unit before she deteriorated.

Life however doesn’t go as planned and we started to see camera crews on the ward. On the news, there were reports of the government suspending operations at Leeds Children’s Heart Unit due to investigations into deaths. Elsworth took us into the room of doom and told us the sentence I was dreading,  “Unfortunately your daughters operation isn’t going to go ahead. We have been suspended from doing any surgery”. Reeling from the impact of the words, I asked what was going to happen. “We will hopefully be back up and running soon, we will monitor your daughter closely and perform the surgery once we a reopened”. The nurses were devastated. I saw nurses crying on the ward. No one could believe that the unit had been accused of such things. The nurses were all so worried about the well being of each child. Some children were waiting for a heart transplant. Each day television news crews interviewed people, the news broadcasted, the endless waiting for the go ahead from the power that be to reopen. No such order came. Whilst we waited, my baby deteriorated, her heart was failing. Out of the side room we came and back next to the lady with the baby who had lived on the high dependency unit. New wires were inserted into our daughter, new machines, more checks and observations, more one to one with nurses. No privacy. Not from the nurses, television crews or other pairs of eyes. Our torment was splashed all over the television, reporters talked about the anxious wait of parents, the children who desperately needed surgery. The political theories behind the closure the suspected wrong doings and lies of people wanting to close the ward. The suspected reason was the proposed joining of two hospitals with ONE heart unit for Children. I didn’t care for politics and theories. All I wanted was for my child to live. Doing so in that environment wouldn’t of happened. So when we got the news we were one of the lucky  few families being transferred to another hospital for heart surgery we were relieved.

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On the ventilator depending on machines.

Embrace are a specialist transport service for critically ill children, providing round the clock service to send children safely to another hospital for treatment. The day our Embrace team walked through the swing doors with the little incubator cot, all wired up to monitors and ventilators, was the day we went to Leicester. The move was so thoroughly planned and a team of experts assured me she would be transferred with every care. I would ride in the special ambulance alongside and my daughter would carefully by picked up connected to her wires and laid in a incubator. The wires then would be quickly swapped over onto their own machines and they would monitor her closely in transport. It was all so quick. We had waited weeks for progress and now it was all coming at once. The risk of something happening in between hospitals was there but we was assured they had equipment to deal with situations if they arose. I followed the team pushing my daughter in her little heated incubator through the hospital, people in corridors looking at me with those eyes. Eyes that were full of pity, concern, empathy. Seeing the tiny baby covered in wires being taken away somewhere unknown to them. Seeing me, in my baggy clothes that desperately needed washing, my hair hadn’t been cleaned in days and the bags under my eyes were proof of sleeplessness nights, worry and neglect. We boarded our little chariot and set off to our third home.

When we got there people rushed about setting my daughter’s machines up by her new bed, moving her carefully from the incubator. Every time I looked at that incubator all I saw was the little chicks newly hatched from their eggs, back when I was a child in school. Waiting ages for the eggs to hatch, seeing the broken shells, the tiny new creations wobbling around on scrawny legs. Searching for their mum. There was my little chick in her incubator so weak and scrawny. So lifeless and dependant on these nurses to keep her alive. I longed for her to be back in her egg. Back inside me. Safe from all this suffering. Wishes get you nowhere. Praying is for the religious. How could I believe in a god when all around me was suffering? Innocent children. Who haven’t lived their life? Fighting to do that? Ill never believe in a God, we’ve been through hell and not once was God there for us. We got through it all on our own strength and courage. I don’t believe in things happening for a reason either. People say all the time to me…. your daughter was given to you for a reason. No. No she wasn’t, she was born into this world broken due to something not happening. She was supposed to be whole, healthy and then one day something unknown happened which made her very poorly. I then had to step up to the mark and be strong for her. There are children who are gave up for adoption by parents who cannot cope with their child’s illness, the theory of being “Chose” is laughable. I stepped up. I did the only thing I could. I felt love I had never known for my child and I refused for her to be taken or for me to give up. I did what every good parent would. Not give up. No matter the struggles. I promised her the best life I could give her and that promise I will keep until the end.

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Leicester Intensive Childrens Care

Our new home was alien. Intensive care. A room full of machines id never seen before, keeping children alive. The noise of these machines was loud and consistent but to the nurses working on this unit the noises were not the loud sirens we hear at Pinderfields but the reassurance that the children were alive. The beeps and alarms were a regular occurrence, the space between each patient huge in case of an emergency, one nurse to every patient sat at the bottom of each bed at a desk. Regularly checking SATS and other chores. Whilst at Leicester, the nurses made a fantastic diary of my daughters stay there. We got to know one of the young nurses very well, she’d let me help wash my daughter carefully, change her nappy, wet her dry mouth with lollipop sticks. To some they seem like usual cares, try changing a nappy when arterial lines snake down your child’s legs. Try get a nappy around the millions of wires that were so fragile, try put on a sleepsuit, brave shoving a lollipop stick into her mouth to wet her tounge/throat. For the days following her surgery she lay in her bed unclothed, the risk too great in getting her dressed. I couldn’t hold her for weeks. I wasn’t allowed to move her in case her temp went down and in case the wires pulled. Her beautiful face was obscured by hideous tape that covered her mouth to her ventilator helping her breath. Weeks went by and she slept constantly due to the amount of morphine pumping into her lifeless body. I didn’t get to see those blue eyes for an eternity. All I could do was stroke her smooth skin, kiss her, talk to her about all the things we would do when we got out.

I lived in a little room just round the corner of the entrance to Intensive Care, which had been funded by McDonalds of all places! Ronald McDonald House Charities had funded rooms for parents to be close to their critically ill child. I thank them from the bottom of my heart for doing so, without would of meant sleeping in an upright chair on the ward. Being so far away from home, we managed to get some money from the Heart Foundation to help with costs for our stay. Throughout our experience in hospitals there has always been some charity that has helped us and the work they do for families like ourselves are indescribable. I cannot thank them enough.

 

It was the morning after my daughters heart surgery, things weren’t quite what they seemed to be. The operation to close the open duct was a huge success and the suspected narrowing of her aorta didn’t turn out to be! The surgeon only had to close the duct. The reason why they suspected the narrowing was the symptoms of my daughter. The rapid breathing, tiredness, non of the consultants expected to find the duct to be one of the biggest they had every seen. The duct was so huge that it was draining the life out of her and without it she would of passed away. The operation lasted just over 4 hours, the longest 4 hours of my life. The watching of the clock, the fidgeting, the worry that something bad had happened. Thankfully it was all a success and she’d recover and live a healthy happy life or so we all thought. My daughters heart wasn’t the only thing broken, wasn’t the only thing revealing itself to us. For now we started to see what else was wrong … I never imagined her brain was broken.

The Hatching

I’ve always wanted a little girl. From playing with dolls as a child, I always imagined taking my daughter to her first ballet class. Watching her on stage at her first nativity play, listening to her lines, beaming with pride. Going for our nails painting together, girly shopping trips, sports days and all things pink. So when I got told on my 20week scan that I was having a baby girl, I couldn’t wait for what life had in store for us. Little did I know my life would be full of hospital appointments, scans, operations, bad news and everything I longed for in a child cruelly, snatched from me.400457_399502150109579_1634991215_n.jpg

 

The first picture of my gorgeous Littlefoot waving Hi Five!

 

28th February 2013, the day that changed my life, the date my Littlefoot was born. After a regular midwife appointment on the 27th, I was admitted into Pinderfield’s Hospital to be induced, due to risk of infection caused by my front waters breaking. After waiting all day, I finally was admitted onto the labour ward. For 4 hour and 11mins I cursed and writhed in agony. Those that have no pain relief, should receive medals. How any sane woman can endure that pain must have super powers. I was begging after a few hour of gas and air for much stronger pain relief. In the end an Epidural was the only thing that made the contractions bearable. Towards the end of my labour I remember saying I needed the toilet, so out of it,  I had totally forgot I hadn’t the use of my pale and hairy legs! The midwife pushed me back down onto the bed, asking me if it was a number one or two. Here I was telling some woman id only known for four hours, that I really needed a poo. “Just poo onto the bed love”, was the response I got. POO on the BED??! I refused to loose what I had left of my dignity, wishing the poo to stay put. 30seconds later I was shouting that I was about to shit on the bed. Yes, the ounce of dignity was lost and there I was pushing out a poo when the midwife told me the bowel movement was in fact my daughters head. A very hairy head. I couldn’t believe it! It couldn’t be, It felt like a poo…. but a hairy poo? I took the midwifes word and tried hard to push this newly found hairy head out. Here it was, in a short time id be hearing those shrill cries and get to hold my baby. I grew rather excited at the thought of all this pain gone and in its place a crinkley little human being that I had made. At school I was never good at making things. My first cooking class was a disaster, woodwork wasn’t my forte and sewing? Well lets just say I’d never created anything of worth in my life. Here I was giving birth to something I had successfully made without putting that much effort in. I pushed and pushed but her shoulders would not come out. Now id like to think that there could be some positivity in that, being I must have had a rather small vagina. After pushing for what seemed like an eternity, I was wishing I had a huge vagina so she could come straight out! “PRESS THE EMERGANCY BUTTON!!!”, filled the air, the door opened and in came a tide of midwifes and doctors all swarming to my open legs. Oh how I had wished I had shaved that night. Hundreds of pairs of eyes staring at my private parts, each looking very worried and panicked. After having my legs pinned onto my chest, hands grabbing my poor babies head and a lot of shouting for me to push as hard as I could, out popped hairy crinkled human being at 9.35am. 941758_506728146053645_1775584130_n

My little Dinosaur Hatched from her egg.

I waited for the crying but no such sound came. I looked over to the doctors all gathered around a table,  resuscitating my daughter with a bag and mask. Please breath. Please. The muffled sound of a little cry filled the air and I sobbed in happiness. The doctor came over and explained that my daughter had experienced Shoulder Dystocia and needed to be checked over but she was alive and well. I needed to have a few stitches from slightly ripping (vile) and id be able to get cuddles shortly. Thank GOD I didn’t feel them sewing my poor vagina back together, I laid back waiting patiently to see my daughter, trying not to look at the man with his head between my legs, sewing me back together. The nurse showed me the placenta, holding it up beaming from ear to ear. Eurgh, why she seemed so happy to be showing me, what can only be described as a bloody, fleshy handbag was beyond me. I wanted to see my baby, I didn’t care for idle chit chat. Finally the doctor brought her over, all wrapped up like a little cocoon, Looking closer I spotted a BLUE knitted hat, had they got it wrong? Would I need to quickly find a name and take the room full of pink back? Before they could tell me they couldn’t find any pink hats, I knew straight away by looking at those incredibly long eye lashes that she was a girl. Those lashes would be the envy of all women who everyday struggle putting on fake ones. Those lashes would make every boy fall at his knees and break a million hearts. The eyelashes opened and revealed the most beautiful skies of blue I had ever seen. Jet black hair and those bright blue eyes. Oh I had known she’d be beautiful, as is every baby, but she was perfection. She looked like a beautiful baby gorilla and I the hairy, droopy, fat mother gorilla. How I had made this human being I didn’t know, all I knew was that from that moment I would make sure she had the best life I could give her. For hours I sat watching her sleeping in her crib, watching her chest rise and fall like waves. Her breath so soft and delicate, her skin somehow smelled delicious, eau de womb smelt surprisingly luring.  I hadn’t slept for over 24hour, i had no makeup on and my hair resembled a birds nest. I didn’t care, all i wanted was to watch my sleeping dinosaur. I was like a drug addict, her the heroin pulling me in. Craving being close to her. Fearing anyone interrupting our silent bond. Here was my daughter, the start of many memories to come. The ballet dancing, the nativity plays and sports days. 295686_482141011845692_273523218_n.jpg

Coming home outfit.

She wouldn’t feed. I tried the bottle over and over, each time milk would pour out the sides of her mouth. I confided in the nurse about my worries to be told it was perfectly normal for a baby to not latch on. The nurse got her to take some and the next day we were on our way home to start a new chapter. Little did I know that the signs had been screaming out already, that something wasn’t right. She was so lifeless, she slept constantly, she hardly ever cried or moved. She wouldn’t feed. She wasn’t your typical newborn. Every midwife appointment resulted in yet another static weight, yet more reassurance that this could happen. I wasn’t fooled. A few days after her birth I just couldn’t accept that things were “normal”, I took her to hospital to find out what hidden fault we’d not spotted. After waiting what seemed like forever, a doctor examined her and told us she had a slight heart murmur nothing to worry about! Nothing to worry about? How could this not have been picked up?  Looking back at my daughters hospital discharge letter seeing the sentences .. “baby appeared normal”, “No Feeding problems”. Lies. We were sent home with the expectation of a letter within a few days to let us know the date of a heart scan to look further into it. Why they couldn’t of referred us straight away is yet another mystery of my daughters care at the start of her life. She wouldn’t take the milk. She became breathless, panting for air, milk gushing out the corners of her mouth. She slept all day long. Thankfully we went to see an old childhood friends mother, who is a midwife, she took one look at my daughter and rang the hospital demanding for her to be seen and closely examined. She had lost so much weight and I was so relieved someone was listening to my worries. We took her into hospital, this time we were seen straight away and a in depth examination took place. However you didn’t need to strain your ears for that heart murmur. It was so loud and strong. The doctor was taken aback at being told the previous doctor had told us it was nothing to worry about and shocked to discover we had been sent home.

I remember feeling the intense anger I felt learning it should of been picked up earlier. Nothing however prepared me for the other hidden secrets my daughter had, that slowly started presenting themselves, that would change her life and mine forever.

 

 

 

 

 

 

 

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