Wenlock's Edge

Still in hospital.

2012-02-28T08:57:00.004-08:00

A fortnight post-op my oldest friend came to visit. She came up from Oxford. She came before any of my family came. My Mother was ill, and couldn't come. I don't know why nobody else came. our older two children were being passed between relatives, Andy brought them into visit, and they seemed absolutely fine, much to my surprise.

Andy was still travelling back & forth everyday. This had all happened at a crucial time at his work-place. They were in the process of moving the whole foundry from one town to another. It was a small family firm, and Andy had been with them since university. They were very supportive, but his role was crucial to the move and sometimes he could only visit for a few hours a day.

We were getting better at recognising the signs that Emma needed suctioning, and better at changing the trach. There was a trached baby in the next room whose parents weren't finding it so easy. Mom couldn't do the tube change, and the Dad would shout, and then she would cry. It was horrible to listen to. Once the Dad had gone home, the nurses would stay and comfort and talk to her, they were incredible.

Every now and again a nurse would say "This room was M's room, he left the week before Emma came." They all talked fondly of M. He had had a trach, he was three years old, he had come to the ward when he was born, and had not left until the trach was removed when he was three. The nurses had photos of him, and of how the room had been turned into his bedroom and playroom. This wasn't going to happen to Emma we were going to escape!

A telephone call came for me, it was someone from the Community Paediatric Nursing Team. Just saying hello, to say they were the team who would be organising equipment and support for us once we were ready to come home "in a couple of months." I replied that things were going really well, and I thought we would be ready for home sooner than that. When I got off the phone, I found the portable pay phone and called Andy and told him about the call. He had a similar call at home that night, and he gave the same reply. He asked what they were waiting on, to order the equipment needed. They needed a list from the hospital, the next day he asked Sister T to help compile a list. He then faxed the list to the Community Team. The escape plan was started.

A few days later I took Emma out of the hospital and into the city, with a nurse at my side. It was terrifying. I couldn't hear her breathing, I had to keep looking at her face. I remember I had to suction her in Boots the Chemist. My legs were like jelly. The following day I took her down to the hospital shop by myself. We were stretching our wings. The Nurses started talking again about visits home. I explained with a two year old at home, I wasn't willing to cause him more upset by coming and going. When we went home it would be for good. I don't remember who suggested it, but it was decided that when we were ready Emma & I would move into the parents accommodation room for a weekend, and then if all went well, we could go home. In the meanwhile we were moved into our own room on the ward. Andy & I took over all of Emma's trach care, the nurses were there if we needed them, but the door was shut and they knocked before they came in.

Several separate memories that I don't remember where they fit chronologically are very bright. Meeting the Hospital Chaplain in Intensive Care, late at night, he was so kind, and his words, just a chat really, gave me so much comfort. When we were later back on the ward, he seemed to remember us, and gave me directions to the Chapel where I escaped to for a few minutes whilst Andy was with Emma one day.

Another memory was talking with Mr P about the results of the scans. The hemangioma was present in Emma's skull, in the bones too, creating a honeycomb effect in her bones. It went down into her chest, but it wasn't known how far down, she would need another scan to determine that. It was hard to put that information and the baby lying in my arms together. I cornered a Snr Registrar late on the Sunday afternoon, and grilled him about whether this meant there was a possibility that Emma could be brain damaged. He said not, but her eye sight and her vocal cords maybe damaged.

That's enough for now, next time I will write about going home.

Hospital Life Goes On

2012-02-14T02:51:00.003-08:00

Things fell into a routine of sorts. When Andy could he would come in as early as possible, bringing me breakfast which I would eat in the room at the end of the ward. If not when the nurses changed Emma's bedding I would run down to the hospital shop and buy a sandwich, and eat it in the lift on the way back.

The day after we started suctioning I was told I had to go to a meeting with the hospital social worker. I found a nurse to sit with Emma and I went, I hadn't wanted to go, I didn't understand why I had to go. The Social Worker gave me claim forms for disability living allowance and carers allowance. I still didn't understand. Why had she given them to me? She seemed uneasy, she explained that Emma was now classed as disabled. My baby was disabled. No, that didn't seem right.

She then asked if I needed to make arrangements for our older two children to be put into foster care. Was this for real? Had I slipped into a nightmare whilst in the lift? There was no way any of my children were going to be fostered. She explained that a child with a trach would place a huge strain on my family and I should seriously consider it, Emma was going to be in hospital for many months. I asked if there was anything else she wanted to talk to me about, when she said no, but we needed to discuss the fostering more, I politely said that I didn't need to talk about it and left.

I ran back to the lift and to the ward. The nurse wasn't by Emma's bed, one of the lovely Italian cleaners was stood next to the cot cooing and smiling at Emma. She was breaking her heart, bright red, silently crying, soaked in tears. I picked her up and she calmed down. The cleaner explained that the nurse had to go, the nurse came in and explained that one of the heart surgeons had come in and she had to be with the parents to support and take in info about their baby's operation. I understood, but I was upset. After that I left Emma with Andy or Sister T whilst I ate or showered but that was it, I waited for her to sleep so I could go to the bathroom, and then I ran.

The next big thing was learning to change the trach tube. I didn't even realise that it had to be changed. There is a process. You have to set up everything before hand, then swaddle Emma, cut the tapes that held the tubes in place and remove the tube, someone else places a lubricated tube into her neck. Whilst the tube is out before the new one is inserted she can't breath. Sometimes the hole, the stoma, puckers and closes and you have to force the new tube in, or use a smaller tube. Then she gags and coughs, your hands pour with sweat and she is pouring with secretions. Then you have to tie the new tube in place with the most complicated knots! It is like learning to be a Scout! The first time this was done we watched, then we held and took out the old tube. Then we put the new tube in. I remember the nurse laughing at my shaking hands. They were all such good teachers. I felt sick each and everytime, but I was determined to learn how to care for Emma, she was my baby, she didn't belong to the hospital.

Towards the end of the week, whilst walking back from the bathroom, I bumped into a mother. She introduced herself, she was German, she asked if I was the mother of the baby girl with the trach. She whispered quickly that her son was in the next room. I understood her urgency, she wanted to get back to him. She quickly said that I was not to listen to the staff about needing to have lots of short visits home before we could be discharged. We had already been told about these, a few hours away, an afternoon, a day, a night, a weekend, and only then if we felt confident, and the hospital felt we were ready would Emma be discharged. The Mother told me that I needed to stand my ground, she had been there with her son for almost 5months, and she realised now, that there was just no need. She told me to master the trach care and run! She smiled, squeezed my arm and left. I saw her leave with her son the following day. I was so grateful for her words.

One afternoon I left Emma with Sister T to get a quick shower. There was a shower room on the ward. When I came out, I saw Sister T standing at the nurses station with Emma. I noticed the tapes of her trach had been cut and Sister T was holding the trach in place. Another nurse was holding a dressing pack to the back of her neck. Sister T explained that she had noticed that the skin on the back of Emma's neck was breaking down. She showed me, the skin looked like pink tissue paper. How was it staying together? I knew by now if it started to bleed, it would bleed a lot. This started another bit of trach care, we had to place padding around the back of Emma's neck underneath the tapes that held the trach in place. Tying the tapes became impossible, so we swapped to some much easier velcro tapes for a while.

Andy & I were taught trach-CPR, basic trach care, how to recognise an emergency situation, how to give her meds. It seemed to be going well. Mr P was very pleased with the reports the nurses were giving him on Emma's and our progress.

There was just one thing still bugging us. Emma was still silent, our chatty babbling baby was still silent. Andy was getting ready to go home one late afternoon, the sun was shining and the windows were open. The atmosphere on the ward was relaxed, someone had turned the radio up. Sister T and a Jnr Doctor popped in, and asked if everything was alright. I said we were all fine, and remember casually mentioning that I understood Emma's throat must still be sore, but surely she should be making some noise of some sort by now. Sister T looked at the Dr and then back at me, "Has nobody explained, did nobody tell you? Sweetie, she's not going to speak, not while she has the trach." I asked about afterwards, and was told time would tell, hopefully the hemangioma wouldn't damage her vocal cords, but it was early days. At that time we thought Emma was expected to have the trach for a year. This upset me more than anything. Sister T went and fetched tissues, and left me and Andy alone with Emma. I sobbed. I felt this was the last straw. Emma had a hole in her neck, a benign tumour growing unchecked, her face was becoming more lopsided everyday, and now we were being told she may never be able to speak.

Andy had to go. He had to collect Lizzy & David from my brother's family. I remember walking the ward to the door, and him looking back at me through the shut security door with his eyes filled with tears. The cruel thing was that as Sister T had explained, playing on the radio was Ronan Keating' "You Say it best when you say nothing at all."

2012-02-13T06:20:00.002-08:00

Emma woke up and smiled at me, it was a weak smile, but it was there. The night nurse settled her down on a pillow on my lap and she had a full feed. A Dr came whilst she was still feeding, and checked her over and said she could go back to the ward that morning. He was very pleased that she was feeding, and had had the appropriate nappies. Nurse M came back on duty, and gave me a hug and said it was good to see me smiling. Andy arrived sometime around then, and told me that everyone from home sent their love.

Emma's cot from the ward was brought down to transport her back to the ward. It was a small cot for small babies. When Nurse M saw it she got cross with the porter, she said something funny about a big grown-up Princess needed a big-girls cot, and she sent him off with a flea in his ear to get a bigger cot! When he returned Emma was transferred to the cot, Nurse M gave us both a hug, and wished us well, and we went back up to the top floor. Sister T was there to settle Emma in. She mentioned suctioning again, and said that she would soon have me & Andy doing it. I must have looked horrified, and she said it would be ok, and not to panic. She also mentioned that they had some literature about trachs and she would fish it out for me.

The little girl in the room had been joined by her Mother, a small beautiful American lady. She smiled, but her husband still looked asthough he was in deep shock.

The time passed slowly, Emma slept. Every now and again her breathing would get noisier, and her oxygen levels would drop, heart-rate would go up, and then the alarms would go off. A nurse would appear and suction Emma. She would put disposable gloves on, open a catheter packet and attach the nozzle of a tube which was attached to the wall. She would turn the machine to the right setting, number 6, and remove the catheter from the cover, and then slide the catheter just under three inches into the trach tube, put her finger over a hole on the nozzle to make a vacuum, just like a hoover. This would suck the secretions out of Emma's throat. Emma's body was making natural secretions,and extra ones to try to expel the artificial tube that had been inserted into her neck. The Emma would visibly relax, and drop off back to sleep.

Her neck looked so sore. There were seven stitches around the tube, thick black stitches eating into her tiny neck. After lunch Sister T came in to suction, and said "Your turn Mum." I felt sick, but I did it. Afterwards Sister T got Emma out of the cot for me to feed her, and I felt asthough she was still mine. Sister T was amazed to see her feed, and a junior nurse passing through the room smiled at me and said "Well I never!" The next time Emma needed suctioning Andy did it. We were closely supervised, and slowly our confidence built.

As evening came, Andy had to go home and I settled down for the night. The Night Sister came in and asked where Emma was going to sleep tonight. I said I thought she would be better in the cot. I was worried about hurting her, and squashing her. The Sister pulled up a chair, and explained to me that Emma needed me now, she needed things to be normal, she needed to be reassured. She needed to sleep in my arms, like she always had. She said if I wanted to she would get a nurse to sit at the bottom of my bed and watch that I didn't hurt Emma. I said I would try. The monitor wires and oxygen were trailed across the room, and Emma was placed in the camp bed with me. When she needed suctioning, a nurse would take her out of my arms and take her to the cot to suction her, and then bring her back to me. At sometime Sister was there, and she told me I would have to suction her the following night, that the sooner I got used to it the better. I think it was every half an hour.

The night passed in a blur. I was woken by the smell of toast, and Sister brought me a slice, to congratulate me on getting through the first night! As I came back from the bathroom I heard a familiar noise, another suction machine coming from another room. I asked the Nurse who was sat with Emma if there were other babies here with trachs, there were two on the ward, in the rooms either side of our room.

The Star herself, age 10 weeks

2012-01-30T00:08:00.000-08:00

This is Emma at 10 weeks of age, the left side of her face is a little swollen and her left eye is a little closed.

11-12 weeks - Part Three

2012-01-27T02:27:00.000-08:00

At 7am Mr P came into the ward to see how Emma was, and to say he was about to go to the pre-op meeting. Sister T had brought me a dummy/pacifier for Emma, and that distracted her from crying for a feed. It felt very mean. Andy had arrived and spent a lot of time walking the length of the ward to where there was a large fish tank that Emma enjoyed watching.

8am came and went, it was gone 10am when the phone call came to say that the team were ready for her in theatre. A porter came with a trolley, we put the monitors and oxygen cylinder on to it and Andy carried Emma to the lift, and through the maze of corridors. We went through the double doors into the theatre area, to be greeted by the consultant anaesthetist, all gowned up and smiling, Emma grinned back at him. He showed us into a very small ante-room which was full of people. I recognised Mr P. He apologised for keeping us waiting, but there had been a lot to discuss. They asked if Andy or I would like to hold Emma whilst she went to sleep. I asked to, and was sat in a chair. I can't remember if she was put under by gas or through the cannula in her hand, I think it was the cannula. She didn't get upset, I remember a young nurse distracting her with a doll, and then she was gone. I was asked to lay her down on the trolley which had a sheet rolled up into a tube, this was placed under the back of her neck. We were told to kiss her, and then the ward nurse took us back to Emma's empty bedspace. Then the tears started to flow, for the first time since we had left home. It was totally involuntary. The nurse had tissues. By the time we had got to the ward I had stopped. There was no need for any of those Moms & dads to see me like that.

We were told the operation would take an hour and a half. We were given a beeper by the ward sister and told to go and get a coffee, or pop to the shops. I laughed. This was not a time to go shopping! We had been given a parents room, on the same floor as the ward. We hadn't used it, but we decided to go and get a drink and a sandwich and go to that room. We did what was to become an operation-day-tradition. We bought a handful of those dreadful celebrity magazines. This is the only time we have ever bought them. They were/are so ridiculous we did actually laugh. Looking out of the window I could see the children in the ward on the floor below, children with cystic fibrosis, receiving their physio. The time dragged. After 2hours we went back to the ward and asked for news. No news was good we were told. We were told the same thing after three hours. When we went back after four hours and the nurse seemed surprised that we were still waiting. She suggested going for a tour of intensive care, so we wouldn't be so overwhelmed when we saw Emma. She phoned the unit, and took us straight down.

We got buzzed through two sets of double doors, cleaning our hands in between. It was a huge room, whispers, humming of electricity, beeping of monitors. We followed a nurse around a right-hand corner, she was saying something about this would be like the bed bay that Emma would be in. The bay had curtains drawn between the bed next to it, but not where we were standing. The bed was surrounded by Drs and nurses, including the consultant anaesthetist. In the middle of the bed was Emma, naked but for a nappy. The nurse who was with us froze for just a short while, taking in what we were seeing and then whisked us away. Emma's face and chest was covered in an orange paint, there were cannula in both hands, monitors on her feet, an oxygen tube going into her neck. There was blood, what seemed everywhere. She was fitting, her body arching and shaking. Her eyes were wide open, she was terrified, but there was no noise, she wasn't crying. The anaesthetist was saying something about her waking up too quickly, and needing to put her back under, quickly.

The nurse apologised, and ushered us into the visitors room on the one side of the first double doors. She asked us to stay there, and she would go and find out what was going on. Within a few minutes the anaesthetist came in with the nurse. He explained that Mr P would be down in a while to explain more, but that the operation had been far more complex than originally thought, that was why it had taken longer than originally thought. Emma was stable now, she had woken up too quickly, and he had sedated her again, and it would be a few hours before she came to. He asked if we were ready to see her. We said yes please. Andy held my hand as we walked in. A short German nurse introduced herself as M, she was Emma's nurse for the rest of the day. She explained what meds the cannula were delivering by pumps, and what the monitors were measuring. Emma had been quickly cleaned up, but there was still blood and orange streaks. She was very pale and when I touched her hands she was cold, but her oxygen levels were good. M found an armchair for me, and sat me by Emma's head. Andy pulled up a chair, and held my hand. It was hard to take it in. Emma's breathing made a strange noise, and M explained that she needed suctioning. I nodded. I had no idea what that meant. My turned on a switch on the wall, took the oxygen off Emma and put a plastic tube into Emma's neck in a quick movement, and removed it. The strange noise stopped.

After a while, I have no idea how long it was. M said that Emma would be getting hungry. Did I think I would be able to express some milk for her? It would have to be sterilised, and fed through the nasal gastric tube she had had fitted, but it was something I could do for her. M got me some bottles, she took 2 polaroid photos of Emma for me and I walked back upto the ward. Andy stayed with Emma with instructions to call the ward if there was any change. The nurses on the ward were sweet, and told me not to worry if I couldn't produce any milk, I was under such stress that my milk may dry up. I didn't think this would be a problem. 20 mins later I emerged with two, eight oz bottles full of milk. The nurses laughed. I took the milk back to M who processed it for Emma.

Then a phone call came through to the unit for me. I didn't have a clue who it would be. It was my breastfeeding counsellor, she had found a mother in Yorkshire who had breastfed a baby who had had a trach! Within an hour, another phone call came from another breastfeeding counsellor, she had found a breastfeeding mother in Cornwall of a baby who had had a trach. Andy had called people from home the previous night. So it was possible, Andy & I were so happy. When Emma started to wake up, M went and got my milk, and when Emma started to root, she showed me how to feed Emma through the tube. Mr P flew through the room quickly, he couldn't stop, but he reassured us that the worst was over, and that Emma's airway was secure. When they had operated it was hardly there, it was on the point of collapsing. The hemangiona had displaced her windpipe so much that the trach stoma was way off centre, the usual site for trach stoma, and was almost under her right ear. He would talk to us more on Monday, he told us to try and get some sleep.

Although, she looked so ill, she recognised us and calmed to our voices. I can't remember when Andy went home, M went off shift, and the night nurse came on. The lights were dimmed, and the room became even quieter. Emma wanted a cuddle, the Drs had said to leave her on the bed and not to feed her until the morning. The nurse was the mother of an 8mth old little boy, I don't know how much that swayed her,but in the small hours of the morning she agreed to put a pillow on my lap and let me hold Emma. Instantly Emma started to root, the nurse smiled and nodded, and I fed her. Emma took a full-tummy feed and then it looked like she passed out! She had more colour, and looked more relaxed, and the nurse was able to turn the oxygen down. I knew in intensive care the nurses did not leave the end of the bed without getting another nurse to stand in their place. So when she suggested I get a few hours sleep I felt Emma was in good hands, I had the beeper too. I slept for 4 delicious hours and was back by her bed at 6am. Emma was still asleep!

11-12 weeks - Part Two

2012-01-26T14:01:00.000-08:00

Emma & I slept well curled up together in a camp bed. There was a nurse with the baby boy. Emma was wired up to oxygen & heart rate monitor, the wires were about 15ft long and trailed around the room to the machines. Andy arrived at 10am with breakfast, he stayed with her whilst I ate. Then the consultant did his rounds, and we met Mr P. He was a calm, quiet, tall man, who listened intently to us and the nurses. He made Emma smile, he seemed really taken with her. He ordered a CT scan for that afternoon which meant nil by mouth for a few hours. That was tricky with her being breastfed on demand, but we managed it. When we got back down to the dungeon we found out that she didn't need to have a general anaesthetic, at which Sister T from the ward insisted that "The poor mite have her milk!" I was put into a quiet corner and fed Emma. She fell sound asleep with a full tummy and I was able to lay her down into the scanning machine without waking her. I was allowed to stand at her head, whilst the scan was done, she slept through the whole thing.

We went back up onto the ward, and Sister T came to see us. She asked when I had last eaten a proper meal, when had I last stretched my legs? It had been a few days, so with Andy there, I was ordered off the ward given directions to the canteen and went in search of food. I found the canteen, it was a bright modern space. I picked up a tray from a pile at the start of the counter, and then dropped it to the floor. I knew instantly that was something was wrong. I ran to the lift, along the long corridor on the top floor, and through security and into the ward. The was a crowd of people around Emma's bed. Mr P walked into the room behind me, and Sister T who was at Emma's bedside said firmly to him "I'll be having none of this on my ward! We nearly had a tracheostomy performed on the ward. I'm having none of it! Easter holidays or not, I'm not having this little mite wait over the holidays." From then her levels were erratic, and she needed additional oxygen when she fell asleep.

Emma stabilised, and Andy was able to explain that she had started to cry, and her heart rate had rocketed and her oxygen levels had plummeted and she had turned blue. Sister T cleared the room, and Emma was handed over to me, Sister T made sure I was sat comfortably and suggested that Emma might like some milk as she had had a bit of a shock. I sat and fed her, and shook. Andy stood with his arms around my shoulders. I decided that I would not be leaving her again, not even for food.

Prof M came to meet Emma that afternoon, she explained that she would be looking after the hemangioma management. That she was from the oncology department, even though Emma didn't have cancer, hemangiomas are a type of benign tumour. She was so kind, and explained she had treated lots of children like Emma, and there was a wide range of treatment available. We had to try to stop it from growing. The CT scan had shown that the hemangioma was compromising her airway. The swelling on her face was a hemangioma, it was around her left eye causing what appeared to be a squint. The red lines that were around her head and neck and ears were all hemangiomas. Emma was started on a very high dose of steroids. This should stop the hemangioma growing, but it would affect her immune system, and in the long term could be detrimental to her health. Prof P explain that there was no choice. Left alone, the hemangioma would kill Emma very quickly. The further extent of the hemangioma would be revealed by an MRI scan the following morning.

That was a general anaesthetic. It went well, and she slept for most of the day, not wanting to wake-up. It was Good Friday. The baby boy had been moved, he had had his operation and was recovering in intensive care. The ward was very busy. There had been something in the news about the Bristol hospital paediatric cardiac unit being closed. I remembered bits & pieces as I sat there watching Emma asleep, for hours. An unusual number of babies had died, and the unit had been closed whilst there was an investigation. That was why the ward was heaving. Babies kept arriving, before their mothers. A little girl was brought into the room we were in. Her father came with her, a tall older man. He didn't speak, or make eye contact, he was in total shock.

Sister T came and explained that Emma was booked into theatre on Saturday morning. Mr P was in London but would be coming back especially to do the operation. Later that evening the Consultant Anaesthetist came and talked through the procedure. He spent a lot of time with me, talking through what would happen, he even explained which anaesthetic he was going to use, and why he chose that particular one! He explained that there would be a meeting in the morning prior to the surgery, they would all sit and plan what was going to happen, and what they would do if things went wrong. That Emma would go into intensive care to recover post-op and would be brought back to that ward in a day or two.

That evening Emma rolled over for the first time! A mile-stone, reached in a little metal hospital cot. I don't remember which of these people said it, but someone said that Emma may not be able to breastfeed after the trach was in place. They hadn't looked after a baby with a trach who had breastfed. I sent Andy home on a mission to find out if it was possible. I couldn't sleep, I lay Emma in the little cot and sat on the camp bed watching the numbers on the monitor, she looked smaller than ever with the little oxygen mask over her face. She had her last feed at midnight, she was due to go to theatre at 8am.

11-12 weeks - Part One

2012-01-26T07:55:00.000-08:00

I remember a nurse coming down to the Shropdoc Clinic to take us to the Children's Ward. The Shropdoc Dr squeezed my arm as he said goodbye, and wished us well. I could have hugged him for listening, and taking Emma's condition seriously.

The Nurse lead us down a corridor, she walked very quickly, she told me that the Children's ward was very nice, and that the staff would probably let me stay overnight with Emma. I replied that I would like to see them make me leave! She looked a little shocked, and I decided it best not to say anything else to her, Andy spoke to her. At home Emma slept in the crook of my arm, she had never slept in a cot, the thought of it horrified me. We were taken straight into a room with just one bedspace, it was next to the nurses station. The walls were made of glass, I felt like I was in a goldfish bowl.

The offended nurse left and another came in and strapped a monitor to Emma's foot, the monitor started to beep. "Definatly a croupy one" she said, I explained that the Shropdoc Dr didn't think so. The nurse said that she needed oxygen, and started to set up a large tent inside the cot in the room. Another nurse came in and hearing the noise Emma was making said outloud " A croupy one" and the first nurse agreed, and the second opened all of the windows. I tried again to explain that it wasn't croup, and they explained that there were procedures that they had to follow. I was getting agitated at the thought of having to put Emma into the tent in the cot. Emma was starting to get upset, picking up on my rising stress levels. The alarms started to sound on the monitor. The nurses set up an oxygen mask to a pipe on the wall, a Dr came in, and started to read the notes and to fire questions at us. I ignored them all and set about comforting Emma, knowing that she needed to feed. She latched on quickly, and the alarms went off, her heart rate went down and her oxygen levels soared back. The Dr smiled, the nurses put the rigged up mask next to me "just incase" and left the room. The Dr sat down, and introduced himself, and then said "Can I suggest you just keep doing what you are doing, it's working."

He explained that she needed to be x-rayed straight away. Emma was calmer now, and with Andy carrying the monitor the Dr led us through the dark corridors to the x-ray dept. He asked who Emma's paediatrician was, he looked sad when I explained that he was, she had an appointment with him the following month. He explained that she probably needed a tracheostomy, and that she may need to be air-lifted to the Children's Hospital. The x-rays went smoothly, and we were soon back on the ward. The Dr sat and chatted some more, again Emma got upset, and the alarms went off, nurses came running, but again when she fed, the alarms went off. The Dr asked me if I would be ok to just sit and hold her, and feed her, just to feed her, we needed to keep her oxygen levels up. He then went to phone the Children's Hospital about transferring her. The Dr had indicated something to a nurse, and she brought me a large jug of water and a glass. I noticed the tent had been taken away.

The Dr came back he looked worried. There were no beds available at the Children's Hospital in the nearest city. We would have to wait. So for three days we waited, and on Drs orders I did not move from that room, except for quick runs to the bathroom. The cot was replaced with a bed so that I could lie down with Emma. The Dr arranged for all of my meals to be brought to me in the room, and the nurses kept topping up my water jug, and refilling a fruit bowl that had appeared at some stage for me to eat. Everytime a nurse or a Dr went past they smiled and told me what a great job I was doing. The alarms didn't go off again during that time.

Then the call came through to say there was a bed on the specific ward that Emma needed to go to. The ambulance men arrived on the ward with a trolley, a full-sized trolley! We put Emma's bags on to it, the Dr explained to them that Emma needed to be in my arms, in the ambulance as much as possible, that she stayed calmer there, and I should feed her as much as she wanted to. One of the nurses from the ward came with us. I remember that we got lost in the city,and the nurse gave directions from the shopping centre to the hospital! We arrived there safely, and got in a lift which took us to the top floor. We walked to the ward, through security, and in. The nurse who had come with us let out a low whistle. It was an awe inspiring place.

It was so quiet, silent. I was shown into a very large room, there were two cots in there. A baby, a new very small baby was in one cot with monitors blinking and beeping, he was asleep. The nurse who had come with us came and said goodbye, and said she would see us again when we were transferred back. Andy arrived soon afterwards. He had followed the ambulance. A nurse came and booked Emma in. She explained we had arrived during the Easter week, and due to that nothing much was likely to happen until next week. Emma would have a scan that afternoon to confirm that the mass was a hemangioma, and bloods would be taken. A magic man who over the next month often took Emma's blood or put in or replaced cannula, came and introduced himself. He was so good at his job, finding a vein first time in the smallest hands and arms.

Then the mother of the sleeping baby arrived, in a wheelchair with paramedics, transferred directly from the hospital where she had given birth a few hours earlier. She was so visibly relieved to be back with her baby who was here because of a heart condition. I had realised that this ward was a cardiac ward, I was confused and asked the nurse why Emma was there, she explained that they had the highest staff to patient ratio. She asked me about Emma's feed, and when I mentioned breastfeeding she said they would make a bed up for me next to the cot, and that Emma could sleep in there with me.

Later we were taken into the dungeons of the hospital for an ultrasound scan. Emma got agitated, when the scanner was put on to her back. The monitors started to beep, and the nurse who had come from the ward told the radiographer that I needed to feed her. Emma settled quickly and the radiographer asked if I would be comfortable with Emma being scanned whilst I fed her. I had no idea that hospital staff could be so flexible and understanding. The scan was done without a fuss. It was a hemangioma, not a lymphatic malformation. Hemangiomas go in time, LMs don't, they just grow and grow, sometimes bits can be surgically removed, but overtime they grow back. The radiographer was saying this all outloud to her assistant. When she said, not LM, Andy punched the air, and I squealed "Yes!" in delight. The radiographer and her assistant smiled and laughed. The radiographer said "You know what I'm talking about, educated parents!"

Andy grabbed me a sandwich from the hospital shop for my supper, and left me & Emma for our first night at Children's. He had to travel back to put our older two children to bed, they had been cared for by our extended family, but every night he went back so they could sleep in their own beds. He said he would be back to bring me breakfast. I wasn't allowed to eat on the ward, but there was a parents room at the end of the corridor where I could eat quickly and then get back to Emma. I felt very alone, but that at last we were in the right place to get help for Emma.

Six - Eleven weeks

2012-01-26T06:55:00.000-08:00

This was a period of not knowing, uncertainty. Of scaring myself silly, researching on the internet, our slow-dial up internet. You turned the computer on and had time to make a cuppa before anything happened. Hemangiomas could be serious. They could be the outward sign of more serious conditions, that could kill. The Dr had said it was cosmetic. Hemangiomas are strawberry birthmarks, they are usually scarlet, but the source of Emma's was internal, that was why hers was flesh coloured. There was nothing to worry about, the Dr had said so. She continued to develop, she smiled and gurgled, and gained wait, and was delightful.

Then she got a cold. All of my babies are breastfed, the other two never caught colds. This was an odd sort of cold, she sounded snuffly, but there was no runny nose. I took her back to the surgery and saw a different Dr, her chest was clear, no meds required. The following week I took her back, and saw another Dr, the same result. The third week, I saw another Dr. She sometimes was making a whistling sound when she breathed. I asked the Dr if it was possible that the hemangioma on her back could possibly be squashing her windpipe and making the whistling sound. He dismissed my suggestion instantly, babies windpipes were very flexible, that could not happen. I wasn't so sure. I had read about rare cases where patients with hemangiomas required tracheostomies. I remembered seeing this done on a TV medical drama with a Bic pen. I dismissed it. This had nothing to do with Emma.

I walked out of the office straight into the baby clinic and waited to see Emma's Health Visitor. She took me into a side room and I brought her up to date. I told her that there was something wrong. I didn't know what, but there was something wrong with Emma. She listened,and then she asked if I had had the appt from the hospital, I hadn't. So she got on the phone and called the hospital and got an appt for the following month, a month earlier than they were planning to see her. The HV gave me a hug, she said that I was Emma's advocate, and she was mine, if there was anything she could do to help, I was just to ask.

That weekend we visited my father's house, he mentioned she looked a little swollen on one side of her face. I hadn't noticed it. How hadn't I noticed it? I called Shropdoc, who got a Dr to call back after 3hrs wait. She diagnosed swollen lymph glands over the telephone and said if I was still concerned in the morning to take her to my GP. I did, he diagnosed swollen lymph glands, she had a cold he said, it happens.

The following Saturday evening we took Emma along to an Evening Wedding Reception, in Staffordshire. The 'cold' had been worse the past few nights and she had responded to a steam filled bathroom. When got back at about 9pm, I prepared the bathroom, but the whistling had changed. I didn't like it. Emma looked scared. Andy suggested taking her into the steamed room. I said I wanted to call Shropdoc. This time the Dr called straight back.

We had only been talking for a short while when he said, "Is that the baby I can hear breathing?" I was holding her against my shoulder away from the telephone. I replied yes, and then he said something I will never forget. "I don't mean to scare you, but can you get the baby here quicker than an ambulance?"

I wasn't scared. I felt relief. I had been saying for weeks that something was wrong with this baby, and nobody was taking me serious. I said I could be there in 5mins. The Dr told me to drive carefully, and that he would be waiting for me at the door.

I relayed to Andy, what he had said, he agreed to stay with the children until he could get someone to come and sit with them and he would follow on. I don't know how I got to the hospital. I remember talking to Emma, telling her where we were going, and that everything was going to be ok. The Dr was true to his word, and was at the hospital door with a nurse. He was smiling. I was carrying Emma face-to-face. He walked us through to the waiting room, I remembering him saying that she sounded very croupy. He showed me to a chair, I sat and turned Emma around. His smile dropped, and he said "what's that?" pointing to the swollen side of her face. I said that the GP had said swollen glands, but she had a hemangioma on her back, and I thought the swelling on her face was one too. He asked me to come straight through,I stood up again, and he asked for my permission for a trainee Dr to be in the room "as he was unlikely to ever see anything like this again inhis whole career." I agreed.

I quickly stripped Emma off. I had started dressing her in clothes that were quick to take off, I had had to strip her so often for Drs already. The Shropdoc Dr was so warm, and friendly, and talked to me as an intelligent adult. I asked if he thought it was the hemangioma causing the whistle, and he said he thought so. He quickly explained to the trainee about hemangiomas. Then he said to me that in his opinion Emma needed a tracheostomy and quickly. I had fleeting images of a ballpoint pen being whipped out and inserted into her neck. The Dr remarked on how well I was taking the news, how calm I was. I explained how relieved I was that someone was going to do something, and that I had known something was wrong. He busied himself phoning up the children's ward to get admitted. Andy walked in, he was hot and sweaty, and so serious looking. I smiled at him, and said "She does need a tracheostomy." He smiled back and gave me a hug, and he said "Thankyou" to the Dr. I think the Dr thought we were crazy, or didn't really understand, but we did, we were just so relieved that someone was going to do something to help our baby.

Six weeks

2012-01-18T05:26:00.000-08:00

For five weeks everything was fine. We adjusted to being a family of five. Emma had developed a lazy eye or a squint, but nobody seemed very concerned.I went back to work as a childminder after a week of maternity leave, I felt great. The only cloud on the horizon was the prospect of losing the children I was caring for as their parents were all facing redundancy.

Then on the evening before her 6 week doctor's development check, Emma pulled her head forward as I dried her following her bath. I felt a soft lump inbetween her shoulders. It was like an extra thick pad of flesh. Andy took a photograph of it for me. There were still the red marks around her neck from where the cord had been wrapped around, but the midwives and health visitors did not seem concerned by the length of time it was taking for them to fade.

The following morning, I took Emma for her check-up. The Dr commented on how alert she was. Whenever he paused in his speech, she started to babble. He commented that she was already a chatterbox! I mentioned the lump on her back as I stripped her off for the physical check. The Dr explained that it was a hemangioma, a birthmark, and that for a girl, your back was a good place to get one. He explained that it would shrink over time and go, but he was more concerned about her lazy eye, or squint. The Dr wanted to get it checked out, and referred her to the paediatrician at the local hospital. He expected the appt would come through quickly, but would be in a month or two.

A Birthday Poem

2012-01-13T11:28:00.000-08:00

This is a favourite poem of mine at the moment, it seems quite apt as it is my birthday tomorrow. Happy Birthday Me!

Keep Saying This - Wendy Cope

Keep saying this and don't forget:
Although you think you're very old,
The party isn't over yet.

You lie awake at night beset
By dread of being dead and cold.
Keep saying this and don't forget:

It doesn't help at all to fret
About what can't be controlled.
The party isn't over yet.

Although your nature wasn't set
In a serene or fearless mould,
Keep saying this and don't forget:

In ten years time you may regret
Surrendering to gloom. Be bold.
The party isn't over yet.

No point in living if you let
Your terror of the end take hold.
Keep saying this and don't forget
The party isn't over yet.

Where to start ?

2012-01-10T23:41:00.000-08:00

When you start to write a blog, where do you start from? The beginning, today, or for dramatic effect a traumatic event that changed your life forever. I think I will go for the latter.

In March 1999 I gave birth to a beautiful baby girl, an incredible natural birth at the local cottage hospital. It had been an uneventful third pregnancy, and her 6yr old sister and almost 2yr old brother were very excited about her coming. In my group of friends there were four of us all pregnant, I remember sitting at a gathering, and thinking we were all thirty or over. One friend was in a refuge, another expecting baby number six, the other already had a child with serious health issues. I reasoned in my mind, that the probability of one of us having a child with a disability was quite high. From somewhere, I think from my heart a prayer went up, "Let it be me. I would cope. If it has to be one of us let it be me." I know it sounds fanciful, but that is what happened, and at the time I wasn't even sure that I believed in God. I shook the thought out of my head, reassured myself that we would all be fine, and carried on enjoying their company.

Her birth was incredibly quick, four hours from start to finish, we didn't get any further than the examination room in the hospital. Most of it is a blur now, but a few moments are clear. The midwife and my husband encouraging me to move as I was sat down, and apparently babies can't be born if you are sat on your bottom! I politely told them I would move when I was ready. When I was ready, it really was time, and the midwife opened the door and screamed to the student "If you want to see this baby born, you had better run!" In between contractions I remember calling on the spirit of my Grandmother to give me strength, her body lies in the cemetery next to the hospital. She was born with the cord wrapped round and round her, around her head, her neck, shoulders torso and legs. She was covered in bright red marks as if she had been whipped. The midwife handed her to me, and I asked when was the pain going to start, the midwife laughed and said "Your baby is here now, there isn't going to be any more pain." I started to cry, with relief. Yes, there had been sensations, and pressure, but I hadn't experienced pain as I had in my previous births. The student hugged me and told me that I made it look easy. That's because it was easy.

The baby was alert, wide-awake, looking into my soul and I knew she was the person I had been waiting for. When I had given birth to our son two years before, I remember when I was handed him for the first time I was startled by him. My first thought was "Who are you?" I bonded with him, and fell deeply in love with him very quickly. He just wasn't who I was expecting. Only a fortnight after his birth I was able to put it into words to my husband, and explained that I felt our son had sneaked in, and that there was still somebody out there waiting to be our child. I wanted to try for that baby straight away, but a dear friend who is a nurse, convinced him, that I needed a year to recover from the pregnancy and birth. So I waited a year, and then fell pregnant.

One of our GPs came in a few hours later and checked Emma over. It took a while to decide on her name. 'Bump' had been called Alice, but she didn't look like an Alice, we both said it at the same time. The name Emma came from no where. The girl who bullied me at secondary school was called Emma. This felt like an opportunity to neutralise the name, to get rid of that negativity. Emma means universal, everything. The GP asked the midwife what the red marks were, she was told about the cord, and seemed happy enough, and we were allowed home.

My Mother was waiting with the older children. When we were settled in and everyone had hugged and kissed. She told me she was so relieved to see that Emma was well, she had had awful dreams that Emma had been born disabled, dreadfully deformed. She tried hard to hold back the tears of relief as she held her. Mom had been convinced that Emma was going to be disabled. That just seemed so ridiculous, and a million miles away from the perfect baby girl in her arms.

Intro

2012-01-02T06:52:00.000-08:00

I am scooped out from an unsliced loaf, from Cherry Blossom parade gloss, and library books.

I am from shiny lino and shaded back door steps.

I am from the foxgloves, lupins and bluebells.

I am from bullies, cowards and heroines.

From Bess and Bob, from Muriel and Jim,

I am from the Sunday School, the public baths, the Playgroup committee and the market.

From nurturing, and protecting and escaping.

I am from Methodists and Spritualists

I'm from Wellington, and Shrewsbury, and Horsehay.

From lamb stew, and warm scones, and sugar butties.

From my teenaged mother and the births of my own children.

I am from an exploding boiler room, sawdust-floored pubs, and school halls with ropes and ladders.

I am from determind wills and passionate callings to righteousness.

I am from the bless'ed humble poor.

I am from foundry men and cleaners, foundry men and cleaners, soldiers,clergy and poets.

I am from Shropshire. I am not leaving.