Attenborough or Gandalf

It’s 2am and I’ve just been woken up by the nurse as there’s not enough staff so I’ve got to sit up with Alf for the rest of the night. He’s just having a nebuliser and is wriggling around the bed. He’s pulled out his NG tube which I don’t blame him for – nasty things which I hate more than the trachy tube. The nurse in charge is panicking but I know that there’s more of a chance now that he will prove them wrong and eat and drink tomorrow as there’s not a horrible tube down his pipe making it uncomfortable to swallow. They are attaching a drip shortly to keep him highdrated over night.

It’s now 36 hours since We found Alf in recovery covered in tubes from his tracheal resection. The surgery went well and we are just dealing with a new tracheostomy stoma which will stay in place for the next few months until the surgical team can tell if it’s worked and a decannulation is on the cards. His tube has blocked off a couple of times while Tom was with him and I came onto the ward from looking after Rohan to a very shaken up and no colour in the face husband. Lots of suctioning, saline down the tube and Nebs luckily sorted it out. There’s just a lot of clots and gunk getting stuck down there post surgery.

The stay this time round is taking us back to when Alf had his major Cranio surgery back in 2014. On top of his extreme prematurity he was randomly born with cranio synostosis. This wasn’t picked up on until he was around a year old. We started to notice his unusual head shape but were told various things in our local hospital I.e – nothing to worry about, will sort itself out. It was his trachea surgeon in Bristol that took a photo during an appointment and sent it to his mate who is a cranio surgeon to ask him to take a look. A few months after that day we found ourselves after several appointments (and the genetics team involved) waiting to go down to theatre at GOSH with Alfie to have major skull surgery to reshape and remodel his head. Both to allow room for his brain to grow and give him a more ‘normal’ head shape. In the appointments leading up to surgery we had been given 2 different options – one where they put in metal springs which would have to be taken out later on and one where they reshape more of the skull but without the springs. As a team we decided on the latter.

We were to have the surgery with the man who invented and pioneered the surgery himself – the professor or prof for short. Think David Attenborough of the cranio world and that is your man. He was meant to be retired but there were too many patients needing the surgery and not enough of his trainees to go round. On the day of surgery the doctors came round to talk through the procedure and we were able to ask questions. A short while later while Alfie was waiting patiently in his hospital gown, the prof came in to see us just before we were due to go down. The kind of man that walks into the room and everyone goes quiet and gasps in his very aura and wisdom. He had a gentle but firm and wise manner. It might be apt that we also refer to him as Gandalf. He started explaining the procedure again to us and to our horror he was explaining the wrong procedure – one of the options that we had said we definitely didn’t want Alfie to have. Because of his greatness the medical team in the room who knew he was describing the wrong thing didn’t say anything to correct him. So I was thinking to myself I have 2 choices here – 1, be incredibly British, polite and respectful and let him go ahead and do the wrong surgery as who would even dream of hurting the feelings/ego of David Attenborough or Gandolf?? Or 2, Interrupt and tell him what he was saying was wrong so my child could have the correct procedure. Again, I went for the latter. There was a moment of silence in the room as the doctors made uneasy eye contact with me. The prof’s response was perfect. He smiled and said “I’m very sorry, we will in fact do what you have just described – the second option. I didn’t want this whole thing to come across as you simply choosing an option off of a Chinese take away menu.”

6 hours later we had our brave warrior boy back in recovery. His little face was swollen and he couldn’t open his eyes for the first couple of days. He recovered well and fast. That amazing surgeon of ours had done wonders and we are eternally grateful to him and his team. The biggest and strangest thing to adjust to straight after was that Alfie suddenly looked very different and I found myself ‘ missing’ him as he did look completely changed. One of the times I walked onto the ward after a break I assumed Tom was very kindly and weirdly giving another patient a cuddle whilst their mum was out the room, but it was my boy! We all had to re adjust. We got wonderful support from psychologists at the hospital to help us through this. Recovery time was super quick and just days after returning home we took Alfie to sidmouth folk festival. Passers by couldn’t hide their shock and stares as Alfie had a super impressive scar across the whole of his head from ear to ear in a zig zag plus tracheostomy and oxygen bottle – we were a real head turner when we went out and about. I got a lot of people approaching me asking what had happened in disbelief. I always enjoyed giving different answers – my favourite being ‘he was attacked by a shark’. Looking back now perhaps that was wrong of me but that’s sort of what got me through some of the darkness.

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It’s nearly the big day

IMG_1488We’ve been gearing up and preparing ourselves for months now. On Monday 14th May Alfie will undergo a tracheal resection at Great Ormond Street Hospital. It will be performed by 2 surgeons and a big team of doctors and nurses and will take several hours. There have only been 15 of these operations ever performed at GOSH. It’s unusual and we’ve been told it’s the last chance attempt to remove the tracheostomy. If this doesn’t work it’s trachy for life. It’s a highly complex procedure and after being advised that this was the right thing to do, myself and Tom had to take some time to digest it all and really make sure we were doing the right thing.

Here it is explained on the GOSH website –

https://www.gosh.nhs.uk/medical-information-0/procedures-and-treatments/tracheal-resection

I belong to a trachy support group on Facebook and luckily was able to find and make contact with one family that had gone through the operation with their little girl. I bombarded the mum with questions which was really helpful. It’s the biggest op he’s had to face – he’s had some major stuff done already including 3 attempts of trachea reconstruction where cartilage was taken from his ribs and used to expand his windpipe. After each attempt we were told it should work and that we would be trachy free by the end of the summer. For 5 years now we have had that carrot dangled in front of us – “trachy will be in for 6 months max” was what we heard when it was first put in place when Alfie was 8 months old. After that – “lets keep it in for a year”, “let’s try a second reconstruction and will be definitely taking out after that”, “ok let’s try a third attempt, we are sure this will be the one” The final phrase we heard from his surgeon in Bristol last year was “There’s nothing more we can do here, we are going to have to pass this onto GOSH to see if they can come up with something”. Just to go back a little, the reason Alfie has it is that due to his extreme prematurity he was dependent on the ventilator for far longer than the doctors would have liked. They tried on numerous occasions to take it out and go onto the next level down – CPAP but his poor little lungs would only cope for a few days before he crashed and was re – intubated often in an emergency situation. His little airway got knocked about so much and irritated by the ventilator that it grew swollen and developed scar tissue so it was so narrow that he was trying to breath through a tiny airway with chronic lung disease. His breathing was extremely loud as he gasped for breaths (a stridor) and his chest cavities were sucked in to the extreme each time he tried to breath in (recession). So in the end the trachy was the only option.

So we now find ourselves 3 days away from the big Op, last chance. Everything riding on it. I’m petrified it’s going to go wrong, I’m having bad dreams most nights and dark unwanted thoughts are taking me by surprise during the day. Ive spent lots of time on the phone to nurses, accommodation staff, social workers, the OT, school etc trying to make sure everything is set up and in place. I’ve booked the time off work, set cover for my students, booked the patient hotel for the night before on the Sunday, bought enough peppa pig DVD’s to fill a suitcase, bought some suitcases!, we’ve got all the grandparents and my sister ready to be with us in London to help with Rohan care etc. We are hopefully going to be given a room to stay in while Alfie is in intensive care and when he goes to high Dependancy we will have to pay for a hotel in central London. Work have been great and supportive but I have to take unpaid leave as I’m only allowed 2 paid days off a year for being with Alfie when he’s ill or in hospital.

My current mantra is ‘it’s all going to be fine’ I’m not religious but I’m feeling spiritual about this one. I know it’s going to be ok and that we are doing the right thing – we are giving our boy a chance at leading a normal life, one where he can splash in the sea without worrying about getting water near his tracheostomy, one where he can go and stay at his granny’s house or play with a friend without having to have his parents or his carer by his side, one where he may even be able to make some noise and possibly string some words together one day, one where we don’t all live in constant fear that his airway might block off or his suction machine stops working or his tube falls out. It’s been a tough 5 years but maybe 2018 will start to take a new direction. Alfie is beautiful, charming, cheeky, playful and does things in his own way and his own time. Despite all he continues to go through he is a ray of sunshine. He won’t understand whats happening to him next week, his comprehension doesn’t allow for that as he simply lives in the moment, in the present. I wish he didn’t have to go through it. All we can do is hold him and tell him its all going to be ok.

Friends and Family

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Family gathering for Alfie’s 5th birthday.

The backbone of our journey with the boys has been the unrelenting, endlessly loving and caring support. We had people we didn’t know across the other side of the world telling us they were praying for Alfie just after he was born. After letting people know on facebook that he was born ‘Team Alfie’ quickly formed as we posted updates to let people know how he was doing. I had dozens and dozens of loving comments on my posts to read through as I sat day after day by his incubator not knowing if my child would make it through the next hour. I got beautiful cards from my colleagues and students at school. My lovely boss sent us a congratulations card and balloon to the hospital when he was born – something that really touched us as we had not been able to look at the event as a celebration until we read the words congratulations on the balloon that came floating out of its bag. I heard from long lost friends from school, college, ex partners all sending their love and positive thoughts.

Just after Alfie was born in Bath I phoned my brother and my parents. Mum said they were on their way to Bath which I thought was odd – the situation had not sunk in yet for me. I thought why go to all the effort of driving up to Bath at this time of night? I was strangely calm right after the delivery and through out that first night. One nurse told me it was the hormones and that over the next few days it would all sink in. That night my mum, my step-dad, my dad, my step-mum, Tom’s mum and brother all came to see us and support us at the hospital. I remember being in a complete daze watching tiny Alfie in the incubator from my wheelchair with Tom and his mum and brother. A doctor came over and asked who the father was and I pointed to Tom’s brother! They do look crazily alike but his poor brother  laughed and denied all knowledge. Another weird moment was after everyone left we were sitting in the parents waiting area and I found a book – ‘Farmer Giles of Ham’ I got excited and had the idea of stealing the book to give to my dad as I thought he would appreciate it as his surname is Giles and he is pretty much a farmer. How weirdly the mind works during trauma. My dear Grandpa who had lived near Bath had died in the very hospital Alfie was born outside of just months before. In my crazy state I then became convinced that Alfie was a reincarnation of Grandpa and I told every nurse and doctor that would listen to me. I miss my grandpa terribly and I do see him in Alfie when he has a certain cheeky glint in his eyes.

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Visiting Bath hospital a year and a half after Alfie was born.

We were told that Bath couldn’t keep Alfie as they only take babies born from 28 weeks onwards so they spent the night trying to find a bed in either Bristol or Plymouth. A bed came up in Bristol and the amazing transport team worked through the night to get him ready for the ambulance trip. My mum and step-dad gave me my step-sisters address and suggested we stay with her and her husband and son in Bristol. I didn’t really digest this and thought that we wouldn’t need to but took it anyway. I have 3 lovely step-sisters and for what ever reason we didn’t normally see much of each other or were that close. Mainly just because as adults we were now living in different places and doing our own thing. We would see each other at christmases etc which was always lovely. Once Alfie was in the ambulance we got into a taxi and arrived at the hospital in Bristol in the early morning. We still had not slept and we found it really scary adjusting to a new place, team of doctors and nurses. We sat in the tiny parents sitting room for a few hours whilst the team transferred all the tiny wires and machines from the travel incubator to the new one. I vaguely remember coming round to a dad sitting opposite us asking if there was anything we wanted from co – op as he was going. A mundane and caring question which we both struggled to find the words to answer. Once we were able to go in and see Alfie and ask a ton of questions, the consultant took one look at us and said its up to us to look after ourselves now and that their job was to try and keep our boy alive. We were told it was highly unlikely he would survive and that if he did he would probably have severe brain damage and not have a good quality of life. They told us it was a case of watching hour by hour and if he made it to day 2 his survival chances would increase a little and if he made it to a week then the chances would go up again. With all this information and the lack of sleep we suddenly realised that we should rest and I remembered I had my Step-sisters phone number.

I think I text to ask if my step-sister – Sarnia, could pick us up from the hospital – we had no car as we had taken the train to Bath. Tom’s brother had also driven to the bed and breakfast we had booked into the previous day for our holiday to pick up our belongings for us. Over the next few weeks we lived with Sarnia, Ross and Aidan. We had their spare bedroom, we ate delicious food together, relaxed on their sofa and laughed and laughed and laughed. Every day spent at the hospital was dark and scary and unknown and in the evenings we came home to joy and warmth and love and laughter. That time was so precious to us and it brought us all much closer than we had ever been. Alfie has a way of doing that within our family. During our time in Bristol we were lucky enough to make friends with some parents who also had their little boy on the ward with Alfie. We bonded instantly and they also like us, went on to have a second premature baby a couple of years later. I love them very much and we have shared many a teary conversation or phone call together.

Luckily my amazing aunty, uncle and cousins also lived in Bristol and we were able to stay with them too. Being around my gorgeous cousin’s, one of whom was about 2 at the time was really lovely and feeling the warmth and love from my aunty and uncle was the medicine we needed. We had a steady influx of visitors every day, at one point my mum even suggested she should take on the role of our visitor bookings manager! It was so so touching that all our friends from far and wide were coming to give us all their love  and support along with boxes of goodies, survival parcels, endless chocolate supplies. At one point the man on security put his head in his hands looking exasperated at me and said he had never known any family to have so many different visitors all the time. After the first week my mum and dad visited together and my mum had made a one week old birthday cake for Alfie as it was so significant that he had survived this long. We sat in the hospital cafe and mum put up bunting and cards and lit a candle and blew bubbles. It was nuts but it was perfect. 703770_10152437734850171_454318594_oSeeing my divorced parents bond over Alfie and visit us together on several occasions was very special and I thank them wholeheartedly for this. Emails and messages continued to flood in. My brother drove my crappy little car up to Bristol for us. Having my siblings around was a real blessing. Feeling closer to both my step parents through out the experience was healing too. Toms brother and his lovely wife went and did a massive clothes shop for us, bringing us the very much needed things such as pants and toothbrushes and general clothes. My eldest step-sister knitted the most beautiful blankets and hats for Alfie. My sister in law helped me look for houses to rent for when we were going to finally get transferred back to Devon as we had to terminate our tenancy where we were living previously, my landlord gave me a whole months rent free whilst my stuff was there and we were up in Bristol. My brother and sister in law helped to move us out and stored all my things in their house until we found a home. When we were transferred to Exeter my Sister in law’s mum let us sleep in her spare room. When we found a house a team of family arrived with cleaning materials and helped to move us in. My gorgeous niece and nephews sent pictures and made cards and were desperate to meet their cousin but no children were allowed on the ward.

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Aunty Johanna reading Alfie ‘Peepo’ a book he adores to this day.

Lastly when we finally made the decision to try for another baby – one which took a very long time to come to and lots of careful research, our friends and family greeted us with love and support. There was no judgement. We had been told we would have a 15 to 30% chance of having another prem baby but the consultants gave us encouragement and said we would very probably be ok. Again as with Alfie’s arrival we had the care of our loved ones all around us when Rohan decided to come along early too. Transport to and from the hospital, cleaning, friends bought around beautiful home cooked meals. I am eternally grateful and feel so so lucky for the ongoing strength, love and courage we have received from all around us on our journey. As I write this I am acutely aware of the brave mums I met on the various wards who for what ever reason did not have their friends or family around them and with everything they went through it doesn’t bear thinking about what they must have felt in those darkest of moments. There was however an overwhelming sense of community amongst us. Tom called it the Blitz spirit and even though when we finally got discharged home months and months later – we were obviously very glad to be home, much like an ex battery farmed chicken who is released but then tries to get back in the cage because its all its known, I found myself wanting to be living back on the ward, surrounded by my community of mums and dads going through the same thing together.

Tales from the milking parlour

Rather than trying to record things in date order I might try and group stuff together depending on the theme. Expressing milk was a massive part of being a preemie mum so here a few of the most memorable moments.

After both boys were born I was told by a midwife to start expressing as soon as possible. I guess with Alfie in the first 48 hours or so everything was so dramatic and all about seeing if he would make it through each hour that no one spoke to me about expressing until about day 2 or 3. As soon as I realised there was something I could do to help I got straight on it. I was encouraged to express next to the incubator and smell something that had been next to him to encourage milk production. I was told to do it for around 30 minutes every 2-3 hours 24 hours a day. We were shown the milk kitchen, how to label and store milk, how to wash the equipment and where the yellow pumping machines were kept. It became a routine, almost a weird mindfulness task, if you weren’t pumping then you were probably washing the equipment up or walking around the corridors trying to find a spare machine. Tom was amazing and helped with all that he could. Our hands quickly turned to pieces through all the constant washing, drying and gelling. I felt panicked when ever we left the hospital to get some food or buy some clothes – we had none of our own stuff as Alfie stayed in Bristol for the first few months. This was because as soon as we left, it was nearly always time to get back to express. Setting the alarm through out the nights was a killer, waking up to a machine rather than your baby was totally unnatural and surreal.

When we were transferred to another Bristol hospital due to potential heart surgery Alfie needed, there was a whole new system to get used to. No one expressed by the incubators which was sad, instead there was a small communal expressing room we called the milking parlour. I found this really exposing at first. My milk supply was terrible, after a 30 minute session I would fill a couple of centimetres in 2 tiny bottles. When you are sat opposite a mum who has so much milk she needs to use the largest size bottles and then they are spilling onto the floor it was pretty soul destroying. Breast milk was gold to our babies fighting for their lives and the fact that I couldn’t produce enough paired with the fact my body had gone into premature Labour was devastating – I felt like a useless woman, where nothing in my body did what it was supposed to do. I was in a real darkness in the first few months and would even find myself staring angrily at pregnant women in the supermarket or a breastfeeding mum in a cafe. A real low came when one morning I arrived on the ward to find the freezer not working. No one had clocked this or checked it and it must have been off for a fair while. Everyone’s milk was still frozen apart from mine as I had so little in each bottle, around 30 or so bottles of my milk, hours of expressing were all completely ruined. I completely broke down, I think Tom had gone back to work by then so all I could do was talk to him on the phone until he arrived for his regular weekend visits. I had a meeting with the Matron who weekly apologised to me but that was that.

On a lighter side of things, the positivity that came from communal expressing was the bonds formed between the mums, I befriended some lovely women, we would sit and laugh and chat, passing round chocolate whilst expressing. The funniest time was when we were all getting a bit rowdy and giggly and started talking about the doctors we fancied or bitching about the nurses we didn’t like. The parents sitting room was next door and after about 10 minutes of saying the most filthy and inappropriate things I got a text from Tom who was sitting with the other dads saying ‘we can hear everything you are saying.’ That shut us up!

Getting transferred to our local hospital in Devon, again freaked me out as there was another whole new system to get used to. This time the expressing stations were in changing room like cubicles with a curtain around them – about 3 in the room and some trashy magazines in each one. No one talked to each other but you were massively aware of the unknown mum behind the next curtain as you heard all the intimate sounds you create from using those machines. I found myself pining for the community feeling back in Bristol, I tried to strike up a chat a couple of times but it was just bloody awkward to be honest so I found myself reading articles about a woman who married her cat or a man that had 50 affairs whilst trying to squeeze out any drops of milk that would come. I started to resent this and felt like I was spending too much time away from Alfie. I always felt connected to him though, I will never forget the time I was mid pumping when I sudden feeling of fear and terror came over me, I started uncontrollably crying. I still had another 10 or so minutes left to pump but I knew something was very wrong. I ripped off the equipment, didn’t bother washing it and ran down the corridor into the ward. Sure enough all Alfie’s machines were going off, there wasn’t anyone directly by him in the room, Tom had also just appeared. We ran and shouted to the next door room where a nurse came running. Suddenly the resus trolley was there, loads of people in the room and they were doing CPR. Me and Tom held each other crying and watching while we were told he might not make it. Some how, some how he did, that amazing beautiful boy of mine did make it.

When Rohan was born I felt like a bloody scholar in the subject. I found myself back in the same milk kitchen washing and labelling bottles like a pro. I found comfort in chatting to first time preemie mums that were shell shocked as I was able to show them where to find the soap or give them tips on helping with milk production. The facilities had really improved since Alfie as well so each mum could comfortably express by the incubator in lovely relaxing chairs. It was emotional coming back and seeing the same lovely health care team that had repeatedly saved Alfie’s life, now do the same for Rohan too. My milk supply was still crap but I kept going, trying all the tricks – eating oats, fennel, horlicks, trying to stay relaxed ha! I had a bit of mastitis at one point so I was putting cabbage leaves down my bra. I was storing the cabbage in the parents kitchen. One evening I went in to get a new leaf from the fridge while a dad was in there microwaving his dinner. ‘Is that all your having for your dinner?’ He asked as he watched me pull one leaf off the cabbage and return it the fridge. ‘Yes.’ I replied. ‘I’m trying out a new diet.’

I am beyond happy that I will never ever have to plug myself into one of those dreaded machines again. I know they were doing an amazing thing but I came to hate those yellow beasts as they just seemed to ‘laugh’ at me especially in the early hours of the night. Ha ha they would say – I’m not your baby, I’m a stupid machine that you have to use instead….

How it all began

Im a mum to two sunshiney boys who have both, in their own way had to fight to be here. One continues that fight on a daily basis – Alfie, born at 23 weeks who is now 5 and the other – Rohan, born at 30 weeks, now 16 months luckily doesn’t face the same kind of struggles as his brother.

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Alfie at the monkey sanctuary in Looe at half term.
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Rohan trying out as a fireman at playgroup.

Both my labours were spontanious and a complete mystery as to why they were so early. Apparently nothing physically wrong with my body but it just doesn’t agree with the designated cooking time.  Alfie was born on the back seat of a paramedic car in the hospital car park where we were on holiday (in Bath). My waters broke in the street and as we arrived at the entrance of the hospital Tom my partner went to find a midwife and the paramedic went to find a wheelchair and I gave birth to Alfie alone on the back seat at 7.30pm on a cold winters night with the car door wide open. He was given under 5% chance of survival, we spent nearly a year in hospital, he’s had dozens of major operations on his eyes, head, trachea. we nearly lost him on several occasions, we witnessed him being given CPR on the ward, we had lots of phone calls in the middle of the night to get to the ward ASAP, amazing doctors came to his rescue including one that gave him rescue breaths via a bag and mask all the way to Bristol from Exeter in the Ambulance. I witnessed several of Alfie’s room mates pass away around me, sometimes with just a curtain between us. I met doctors and nurses I loved and ones that I didnt trust and felt scared to leave him with them at night. I lived in the hospital or in the accommodation next door. I put on weight as the only thing to break up the day was a visit to the vending machine. We were continually visited by our wonderful friends and family and we made special bonds with new friends going through the same as us.  He has one leg growing very differently to the other due to the Sepsis he contracted on the ward and he has had a tracheostomy in place for nearly 4 years now. We have carers in our house every night watching him and he can only be left with a trachy trained person so thats me or Tom or a nurse. Alfie is possibly Autistic but we are just at the start of a very long journey to get him assessed for that. He is under the care of great Ormond Street as they previously did major skull reconstruction on him and we about to undergo a tracheal resection this Spring which is a rare and very major form of surgery where they remove a section of the airway and connect it back together. Alfie attends a glorious special needs school where we live in Devon and we are supported by a huge pool of healthcare professionals – thank God or who ever for the NHS!

Rohan was a very different story, we made it to our local hospital but he was given rescue breaths as soon as he was born and taken straight to NICU where he stayed on breathing support for several days. He was on the ward for a total of 6 weeks and we took him home on the 6th Dec in time for our first Christmas as a family of four. I expressed milk religiously for both boys, unfortunately Alfie wasn’t strong enough to breastfeed and my milk supply was shocking but I made it work part bottle part boob with Rohan for just over a year. Rohan does not have any lasting prognosis from his prematurity apart from that he is generally delayed and is having trouble moving around. Corrected, he is 14 months but still can’t crawl or walk or do transitional movements i.e lying to sitting or sitting to standing. He is desperately frustrated with this so we are currently under Physio and seeing his lovely consultant who also treated his brother.

There are lots of stories I have been meaning to write down from my experiences being their mum over the last 5 years and I hope to capture some of those here as well as updating on daily life with the boys.