Swallowing. Something that requires little thought to carry out such a simple action. We do it everyday, without we would die from starvation. That is before such things as nasogastric feeding were introduced. Imagine sitting down at a table, littered with steaming hot dishes of mashed potato, plates of juicy sliced gammon, great big mounds of Yorkshire puddings and your grandmas famous thick onion gravy. Imagine not being able to eat that food. Not being able to taste different flavours. Instead imagine being fed milk for the rest of your life through a tube, bypassing your tounge, resulting in you never being able to taste that famous onion gravy. Never experience food gliding down your throat.
Going out to eat your seen as the mother who doesn’t buy their child food, whilst she’s sat tucking herself into a MacDonald’s. When the waiter comes over in a restaurant and asks you what you would like, he hovers awkwardly after your order and then says “And what would you like?”, to your child who cannot communicate to tell you she cannot eat. Every time you eat out, the children’s menu you are given gets put down straightaway to one side. You dread the waiter coming. You dread having to explain that your child cannot eat. Then comes the guilt. The ridiculas guilt of eating in front of your child. Constantly looking around the room to see if anyone has noticed that you’ve ordered for yourself whilst your child sits without. You sit there thinking that every pair of eyes are on you. The evil mother who probably is being watched that very moment by social services.
Birthdays mean a cake she cannot have a slice of. Parties in which everyone sits around a table eating, whilst your child lingers at the side lines waiting for everyone to finish their meal. Trick or Treating means your torn between letting your child experience “normal” activities and the fact that in doing so alienates you even more from normality. The loneliness of cooking for yourself at the end of the day. Buns you’ve spent ages together baking and decorating that she can never taste.
Instead every month you get a months supply of twenty boxes of milk packed with all the nutrients your child needs. Boxes of feeding bags, syringes and feeding tubes. When I think of all the negatives I think of the positives ….. you are alive. When your pregnant, you get bombarded with what method is best to feed your new born. Bottle or Breast? After the torment we’ve been through watching our child slowly starve, her ribs sticking out, I can assure everyone being FED is best. When I was little I always wanted to grow the tallest sunflower, a beautiful flower thriving higher than all the rest. My daughter is that sunflower. Given the correct ingredient’s she’s flourishing. Her watering can? A Gastrostomy tube.
My little china doll so fragile, so pale from the sunlight not warming her cheeks, her lips cracked like the bottom of a dried up, water starved lake. Her beautiful blue piercing eyes looking over the tube that was plastered over her cheek bone. We had somehow managed to lose all the wires that snaked themselves around our daughter like a python ready to squeeze its prey. All that was left was one thin tube that had been thrust down her nose, hitting the back of her throat, down into her stomach to give her the food she desperately needed. When we got onto Ward 52, the neurology ward at Leeds General, we started to learn that our daughters stomach and throat had secrets of their own. Secrets overshadowed by the other organs in her body that competed with each other to cause us the most heartbreak. A competition that didn’t have an overall winner, for every single organ that has successfully caused us agony, equally has caused us to grieve for the loss of a healthy child.
Life on Ward 52 was to put it bluntly.. monotonous. Tedious, mind dumbing and on some days it drained every inch of positivity and strength out of my body. A virus that would fester inside, withering, creeping into my mind and making me loose hope. Every day you’d wake up after another sleepless night, eyes bloodshot from the excessive crying silently into your pillow. Every day was one of those black and white, silent movies played on a projector. You’d walk around numb from the pain in your heart, you’d wait for family to visit to give you that much-needed energy boost. Then once family left you’d retract into your shell, thinking of nothing but escape. A prisoner on death row, day after day waiting for the day to come when you’d be set free from the vapid, mind-numbing days of doing the same thing day in and day out. I remembered thinking of the birds of prey sat on their stands at a zoo I had been to, their thin legs, encased in a metal chain that stopped them from taking flight. Stop them from escaping. The endless blue ocean above, wispy clouds looking like organza drifting gracefully on the ocean current. The natural urge to spread out my wings and take flight into the pools above that beckoned me. The allure of the sky captivated me, the longing to feel the wind underneath my wings, the air rushing past me was like a drug that I needed. I was that bird chained to the ground. I craved release. I desperately wanted to take my child out of here and start living. Inside those four walls we didn’t live. We simply existed.
For weeks we lived in a tiny cell at the end of the ward next to the nurses station. For weeks we waited to find out how we would fix all of our daughters problems so we could take her home. For weeks she displayed that tube on her face with pride. I look at her face now, tube free, skin glowing, her red rose bud lips showing no sign of dehydration. I stroke the place her tube resided, my finger tips brushing gently her wet lips, her skin warm to the touch. I remember how rough her lips had been, I retrace the cracked lines and the feel of the plaster securing her life line in place. Without that tube again our daughter would not be here. There have been many times our daughter would have died if it hadn’t been for the amazing things done by the work of a surgeons hands, for the machines, tubes, syringes, medication …. all of which have kept our fighter alive. Words cannot possible describe how forever thankful we are as a family for every time our daughter has come back from an operation perfectly fine, for the nurses who work tirelessly around the clock, the community team we have in place, the carers that help me in school holidays, our daughters amazing school and the overwhelming support from the village we are so proud to say we live in. Human kindness and the talent that we have in us whether it is performing a gruelling 6 hour brain surgery to riding a bike miles and miles to raise money for a poorly little girl … is astounding. We as humans, can do anything we want, be whoever we want. Having my daughter opened my eyes to the most incredible people I am honoured to know.
Living in a hospital for months, resulted in making our daughters bed space feel like home. I brought in her cot bedding, hardly used to replace the thin piece of cloth that came with her new bed. Toys, teddies, play mats, bouncy chairs and even a cot mobile. My daughter had her nursery in a hospital. Set out neatly on her bed table, endless pairs of shoes, mountains of beautiful clothing that had been hung untouched in her wardrobe. Beautiful baby cardigans my grandmother had hand-knitted with love. There wasn’t much I could do in those early days except make sure my baby have the best bed space that simulated her brain whilst looking beautiful in her outfits that id always lay out for her each night. The best dressed baby in the hospital she was known as and the beautiful girl with all the hair too!
Getting Evie off the ventilator, getting rid of all the wires and becoming pain drug free was the best news we’d had in so long, so it was only fitting we were dealt with more bad luck. The day I watched my daughter all those weeks ago in Pinderfield’s, projectile vomiting after her first nasal tube feed came back to haunt us. Suddenly at every feed, my daughter would vomit all the milk pumped into her. Foaming at the mouth, choking on mouthfuls of milk, her chest rapidly heaving up and down like someone was using her tiny chest as a trampoline. The terrifying sound of her gagging but what was the most chilling sound was the silence that came after. The breath holding. Seconds slowly passed by, watching my baby, mouth open wide not breathing. Choking, until finally milk would cascade out, leaving her spluttering and me yelling for the nurses. The volume of feed was lowered, still came the gut churning vomiting nightmares. The time lengthened for the milk to be pumped inside her, still came the flood. Medication to settle her stomach was given, feeds were thickened to try keep it down, anti reflux drugs of every single kind administered ….. still came the downpour and the eerie silence. I dreaded every feed, knowing what was guaranteed to cause pain to my child. Eyes watching for the first sign, ready to throw her over my shoulder, panic button poised at my side. In came the scales, the numbers decreasing, the flesh on my daughters bones eating away at itself. Starvation.
The sound of heels on the corridor outside could only mean one thing …. the next surgeon to slice our baby open. In came Emma Sidebotham a lady who carried out stomach surgery to children who had extreme reflux. She pulled up a chair in our little cell and introduced herself to us, explaining she was extremely concerned our daughter would starve to death if she didn’t have surgery to tie her stomach to stop the vomiting. Next came another biology lesson, we were told a Nissen Fundoplication was our Littlefoot’s only chance of gaining weight. This surgery was to stop Gastroesophageal Reflux Disease which cannot be treated with medication. In a Fundoplication the Gastric Fundus- the upper part of the stomach – is wrapped around the lower end of the Esophagus and stitched into place. This surgery would mean nothing could come up from her stomach, she’d never be able to vomit. She’d gain weight, thrive and live. It was a no brainer, she needed that surgery otherwise her body would eat away at the little flesh she had on her tiny bones and she’d starve to death.
It didn’t end there, Emma wanted to also put in a Gastrostomy, which meant a surgical opening through the abdomen into the stomach. After which a feeding device is then inserted into the hole, allowing our daughter to be fed directly into her stomach bypassing her mouth and throat. Nurses and myself had tried again with a bottle on numerous occasions but Littlefoot would simply lay there in my arms lifeless unable to latch on or swallow. This meant no tube on her beautiful face, no having to pin her down, screaming, flailing her arms at the nurses every time they had to insert the tube down her throat. No more eerie silences. A simple button, in which a tube could be inserted and disconnected. No tubes hanging out of her constantly. A step closer to that alluring word … home.
This next surgery would take roughly three hours to complete. Assuring us this had a very low risk rate and would mean a better quality of life. In the mean time, whilst we waited for the operation day, an NJ tube would be put into our daughter, which similar to the tube on her face, would be passed down her nose, through her throat and this time extend a little further into the small intestine. Feeds would end up in the Jejunum, bypassing the stomach, hopefully resulting in no chronic vomiting and no aspiration. This tube had to be placed under X-ray by a qualified doctor to make sure the tube entered the Jejunum.
Concerns were then raised about our daughters throat and the noise radiating from it. Imagine someone who has smoked their whole life, 40 cigarettes a day, the harsh rasping, gravelly, hoarse sound of someones lungs filled up with tar. That’s the sound that emitted from our daughters throat. Constant like a machine crackling in the background. This noise we found was called a Stridor which in medical terms is an abnormal high-pitched breath sound made due to a narrowing or obstruction of the upper airways. Emma wanted us to see an ENT (Ear, Nose and Throat specialist) straight away to examine our daughters throat in-depth.
The first time they inserted the J Tube will give me nightmares which will last a lifetime. Arms extended rapidly, erratically thrown around, fighting the arms pinning her small body down. Head thrashing like a possessed soul, struggling to be set free. Penetrating, petrified, piercing screams, echoing around the room. Frantic cries, high-pitched that latched onto my heart making every inch of me ache with sadness. Tears that fell like lashing rain, pounding against the window panes. Whilst I struggled pinning her down to that table with a nurse, my own eyes leaked with anger. Hurry up and put the tube into her I kept repeating over and over in my head. Then came the choking, the silence, me trying to tell my child it will all be over soon. How many times ive stood watching my daughter fight nurses off her, how many times have I sung lullabies to her whilst crying my heart out holding her whilst she fought anesthetics, tubes and needles. Every time she has to be put to sleep, it falls on me to sit with her singing softly, the last voice she hears before she drifts off, the last scent she smells and the last person she sees who is the cause of her pain. Of how terrified she is. An award I wish I hadn’t received that I cannot give back like some unwanted Christmas present. A rope being passed down a cavern to rescue someone, the J tube was successfully put into place.
Mistakes. They happen to anyone. We are not robots. All the amazing things the NHS has done for our family, with it has come mistakes after mistakes. Glass vials left in our daughters intensive care cot, confidential patients notes of every single child on the ward left in our daughters bed, soiled nappies that would soak the bed every night, wire rods left in nasal tubes, cutting into our Littlefoot’s flesh, pinning her nostril back painfully. The worst mistake was the morphine overdose they gave her after her stomach surgery. Taken into a room to be informed an inquiry into a nurse, who had administered too much of a controlled drug into our daughter, was to be carried out. Over stretched, exhausted staff, little resources … they cause mistakes. Doctors who have carried out a 48hour shift results in glass bottles left in the blankets of an intensive care bed. No nappy changes through the night due to the three nurses left to care for twenty patients on a ward. You lose trust in the people who are supposed to be caring for your child. You start to lose patience, you start getting fed up of a nurse saying ill go get you her medication, an hour later your still hassling them. You loose it when your daughters nostril is so pulled back after hours of waiting to go down to the X-ray room, to insert the tube yet again into her Jejunum, slicing into your child’s nose, blood seeping out that you pull out that tube. Trying to settle a baby screaming in an X-Ray waiting room, yanking the thing out in front of pairs of eyes burning into you. You complain about the lack of care. You feel yourself becoming one of THOSE parents. The pushy ones that seem to hassle everyone. Instead of being understanding your daughter has been overdosed you demand action. You fight for every single appointment. Every single medication or piece of equipment. You put in complaints when they need to be made, you speak up when you feel like no one is listening. You are the voice of someone who cannot speak for herself. You are not a pushy parent, you are a parent whose life revolves around the world that is your daughter.
The day we had to go to the other side of the hospital with our girl was one of those stupid best days of my life. I could put on her pretty shoes, put on her coat she’d never worn … I could take her out of this room. When the nurse said we were allowed to take her ourselves without a porter and nurse I could have jumped for joy. Out of our room, past the nurses station and out into the corridor. Carrying her in her car seat, id so often saw those new mothers do outside the labour ward. I walked with her, carrier over my arm with pride. Pretending I was free. To others we looked like a family going to an outpatient appointment, our secret was we’d broke out of prison. We’d escaped our cell, escaped living in hospital for months on end, if only for an hour. Away from my stand I flew with my little bird. The chains incarcerating me… broken. No one can see behind a persons smile, they cannot see that persons misery. Cannot see their life’s struggles etched on their face. No one saw that day we were permanent residents of Hotel LGI. Never presume. As you sit inside a waiting area, sit across from a stranger, neither of you knows what the other is battling. That day taught me never to surmise my own opinions on face value. Never to speculate someones perfect life. Behind a smile, sometimes the strongest of us hides hell locked inside our minds.
The meeting with the ENT consultant confirmed what we already knew. A loud Stridor. Again came the pinning our daughter down whilst the consultant placed a lollipop stick at the back of her tounge. Again came the gagging, the choking. Abandoned was the observation, instead a plan of action, for the ENT team and Gastro Surgical team to pair up whilst Evie was put to sleep. The surgery would take place and a camera would be put down her throat under sedation to see how badly damaged our daughters windpipe was. At this point I prepared myself for the worst news possible like every other organ we’d encountered. Out came the consent forms. In came the anaesthetist to tell us how they’d closely monitor her blood pressure, the method they’d use to send her into a deep sleep and how long they expected her to be in theatre. In came the porters,out we walked of our room, her little cot bed pushed by the porters, past the eyes that burned into us. The pity. The looks of concern. Past the waiting room we walked, saying goodbye to Evie’s father. In I escorted her to the room before the theatre… my version of hell.
Slowly the drug was pumped into her catheter the nurses had stabbed into her body earlier. Taking yet more blood along with it. If the human body didn’t heal, our daughter would look like a human pin cushion. A voodoo doll, pins sticking out from the hundred of needles of blood taken, catheters inserted, arterial lines, stitched up wounds running down her stomach, over her heart and snaking over her head. Bruises from endless blood samples, swelling from surgery, black eyes, sealed shut from cutting into her skull. Tortured, inside and out. Battle scars displayed. Scars that have kept her alive. Unmarked flesh waiting for future surgery and distress. The definition of a fighter. I sang “You are my sunshine”, eyes rolling back into their sockets, eyelids drooping, her hand lifeless in my own. Out I walked out of that room, looking back at her body laid on her cot bed. Onto the conveyor belt she went …. onto the operating slab.
Every second seems like minutes. Minutes seem like hours, Hours last an eternity when your waiting for your child to come out of theatre. Pacing back and forth, a yoyo on a string. Rubbing yours hands together until they are sore from the excessive rubbing. Clock watching till your eyesight becomes distorted. Walking around a hospital, deaf to the traffic that flows inside. Sat in an exam, watching the hands of the clock slowly creep round. The physical pain inside your chest as it becomes tighter like people are pulling you limb from limb. Slaughtering your body. Your mind starts to play tricks on you, goading you, making you think something has gone dreadfully wrong. Running late means she’s passed away. The devil inside your head playing the puppet strings, controlling your body making you feel like you’re experiencing a heroin trip. Love isn’t always happiness and cuddles. It’s an oppressing crushing of your heart, trampled, ripped apart at the seams, dissected, picked away at, like vultures tearing the flesh away. Love isn’t always rainbows and flowers it’s a bomb ready to annihilate you at any moment.
The hours slithered by at a snail pace until the doors opened and in came our daughter. A bandage hiding the freshly stitched embroidery down the middle of her stomach. Beautiful butterfly stitches, hand lovingly sewn, fixing her. Sleepy from the anesthetic, her eyes found mine, asking me if everything would be ok now. I picked her up carefully, whispering into her ear … “Well its a long way yet. Past the great rock that looks like a long neck, past the mountains that burn, still a long way …… but we’ll get there”
To Be Continued …….