This Blog is brought to you in the style of a Video! Enjoy x
This Blog is brought to you in the style of a Video! Enjoy x
On Thursday 3rd Jan, whilst having a cuddle with Jo, Mia decided to stop breathing. Twice.
After 93 days you think you might have experienced everything? Highlights since the last blog include…
Having a show of hands when Thomas went for his MRI scan as to whether he should have the express (3 min) or deluxe (20 min) brain reading because neurosurgeons are too important to telephone. (He had the deluxe scan obviously on a machine partially funded by my production managers brother).
When consulting with the neurosurgeons after the MRI scan and asking the simple question “Was everything Ok?”, getting the response “Fucked if we know, we’ve never scanned a baby as premature as Thomas”. (Record breaker klaxon)
Being chivalrous enough to allow a lady to jump the toilet queue at St Marys’ only to be repaid with a dirty protest leading to a heated exchange then discovering she was the mother of the child in the next incubator to Thomas. Talk about “awkward”, Larry David has nothing on me sometimes.
But whilst the fun and games continue in Manchester, back in Bolton Mia has been slowly getting on with things and like the Russian space program has knocked up a series of impressive firsts.
First twin to be fully fed
First twin to come off support
First twin to come off a Ventilator
First twin to be cuddled
First twin to come off cpap
First twin to come off optiflow
First twin to breathe unaided
First twin to be dressed
Last twin to break through the 1Kg barrier
The only problem with Mia is she is slow to gain weight and had a large, slightly unsightly, inflated belly. She had been scanned, tested, x-rayed to the hilt and it appeared to be purely a large amount of trapped wind. It didn’t seem to cause her much discomfort but was none the less a bit of a medical mystery. One day we hoped she would omit a cavernous fart and the matter would be resolved.
Now you may not know that Thomas took us to the edge over Christmas. After his operation was cancelled for the third time, he maxed out on his ventilator and left us with very little room for man-oeuvre. 3 days before Christmas I had a discussion with the consultant that no parent should ever have and discovered an amount of information that I hope is never of any use to me. Luckily he came back from the edge, good job really as I might never have forgiven him if he had ruined Christmas in that way. In the end he rallied enough to be glued back together on New Years Eve.
As Thomas messed around with our emotions, visiting Mia in Bolton was like a visit to a spa. We were now allowed to get her out ourselves, dress her, cuddle her and perhaps more importantly, Jo had commenced breast feeding. It was on one of these long cuddles with Jo that Mia decided to stop breathing.
It is not unusual for premature babies to stop breathing but it was for Mia. Jo’s heart skipped a beat, the nurses came running, Mia was comforted and everything returned to normal but something had changed. This wasn’t Mia. Thomas is the one who is poorly. Thomas is the one who gives us heartache. Mia is just content, happy, settled if a little on the skinny side. We were deeply unsettled.
Tests were done, X-rays taken, antibiotics prescribed to be on the safe side and as a precautionary measure her feeds were stopped. Nothing unusual showed up, perhaps she was tired from doing everything so well for herself for so long? The consultants were in constant dialogue with the surgeons at St Marys for a second opinion on what may have caused her apneas and her large belly.
Sunday 6th January
Jo had done a morning visit to Mia whilst I looked after the kids who don’t live in incubators. After lunch we went to St Marys. Thomas was looking really good and was in the mood for a cuddle. I was busy outlining to Jo as to why I deserved first cuddle having not had one since my birthday (a month ago) when the following actually occurred…
** Reconstruction **
Becky Fothergills Neo natal nurse niece Sam wanders over to us, Thomas’s parents, and engages in small talk along the lines of “Thomas’s looking really well” and “How’s his sister doing?” etc. This is not unusual, most of our conversations in NICU are very similar but obviously inverted when in Bolton.
“She’s doing ok”, I replied “but they are concerned about her belly and have been liaising with the surgeons here at St Mary’s”.”Is she coming here?” asked Sam. “NO!” screamed me and Jo. Cue comedy interruption of the sister, “Er can you come with me Mr & Mrs brown, I need to have a word, we’ve got Bolton on the phone and we are talking to the transport team…”. Oh bollocks!
** Reconstruction over **
For whatever reason, there was capacity in Thomas’ room and this is where Mia was heading. Unfortunately the empty incubators were not adjacent to Thomas but we made it abundantly clear that we would not be happy unless they were together. The nurses understood what this meant to us and began to make it so.
We could have just waited at St Marys but on Saturday I had taken the christmas crap to the tip. For the first time in over 80 days we needed our emergency suitcase and it was sat in our garage in Bromley Cross. Double bollocks.
The usual plan dropped into place, I spoke to Kim Horton about Chris Malones VAT affairs, we rang our parents and made plan for Lilly then we headed home to pack some stuff. As we went to grab some tea in a local pub, the phone call came through that the transport team had reached Bolton. We raced over there whilst obviously staying within the boundaries of the specified speed limits.
Mia looked too settled to be going to St Marys. When we had done this journey previously with Thomas it was for life saving bowel surgery. Mia was fine, happy, content. We followed the ambulance but he put his foot down and soon lost us. Tea skipped, we called into Kentucky fried chicken for our once yearly visit and consumed a meal that probably shaved 15 minutes off our lives. Soon we were back at St Marys washing the grease off our hands. In our absence the nurses had held good on their promises to reshuffle the room (thanks Belinda, Inneka & Kirsty x) and for the first time in 81 days our children could see each other with their own eyes#
(-: # – more of an emotional description as they are only able to see vague blocks of light & stuff at their point in life but I think you know what I mean 🙂
Although the Russian space program got many of the early milestones, the Americans where the ones who got a man on the moon. At St Marys that evening, many new milestones were accomplished.
First simultaneous cuddle of both Thomas and Mia
First double cuddle by Jo of Thomas and Mia
First double cuddle by Me of Thomas and Mia
First time Thomas and Mia had touched since being in the womb at approx lunchtime on the 5th October 2012 (21,475,200 heartbeats in twintime®)
A simply unbelievable reunion which could only have been bettered if it had been Thomas who had returned to Bolton instead. All the time though a nagging suspicion hung in the air that Mia was simply too well to be in a room full of really sick babies. Do we actually care? Not really. This outcome suits us emotionally at the moment. No more double visiting, no more being at the wrong hospital at the wrong time. No more guilt at never spending enough time with either child and best of all only one place to ring before we go to sleep and wake up.
All too soon though, Mia may return to Bolton from her little trip to visit her brother and this reunion may turn out to be frustratingly short…
(For the weight Gurus – Thomas is 6Lb 3oz & Mia is 3Lb 0.5oz)
In the final weeks of December 2003, Jo’s mother Ann discovered she had leukaemia. She didn’t tell Jo and Tony until after Christmas as she didn’t want to “Spoil it” for her children. Most of 2004 was spent under this shadow but with Ann finally looking to be on the mend, a secondary infection took hold and she had to be sedated. Jo spent the back end of the year making daily visits to her mother in Manchester Royal Infirmary. This is when I believe my wife learnt to be good at visiting hospitals.
Thomas was due to be put back together last Thursday but unfortunately the child in front refused to stop bleeding. His operation was cancelled allowing me and Jo to dash to Christmas do’s we had all but given up hope of attending.
His stoma reversal was rescheduled for Monday but unfortunately with less than an hour to go, the anaesthetist discovered his potassium levels to be dangerously low for surgery. Thomas’ consultant, a dead ringer for Peter Lorre, apologised profusely. Thomas’ supplements were adjusted and an agreement was reached to try again tomorrow. The consultant went off to play cards with Sam in promise for some air tickets to Lisbon, I turned to the piano player in room 6 and asked him to “play it again”.
Today was tomorrow and it slowly became one of the worst days we have endured for months.
The day started at approx 5am when St Marys rang to inform us that Thomas had been struggling with his oxygen. He had been moved back from high dependancy to intensive care and put back onto a ventilator.
Normal life resumed, breakfast, showers, running out of clean underwear, dropping Lilly off at another Christmas party etc etc punctuated by phone calls to St Marys with fingers firmly crossed that transpiring events would not postpone his operation any further. The underwear crisis was solved by raiding the as yet unused “Emergency suitcase” we carry permanently in the boot of our car. (You never know).
At Bolton hospital, it was all action stations. Jo settled down to breastfeed Mia whilst the same massed ranks of people who brought her and her brother into the world worked on the newest arrivals to NICU, another set of twins. We wondered if they might be the children of the other parents who attended our multiple birth parenting class? All of whose children were due well before ours.
After weighing Mia (1.1Kg), Jo placed her back into her incubator and we headed off to St Marys. Another phone call confirmed that Thomas’ operation would indeed be cancelled again. Already in transit and feeling utterly deflated, we decided to stop for some lunch.
Dukes 92 holds a special place in our hearts, we love it so much that in October 2007 we chose it as the venue for our wedding reception. One of the main attractions of our summer adventure was to be able to take our narrow boat through lock 92 on the Rochdale canal and stay the night in the Castlefield basin. As a stopping off point it between hospitals it made perfect sense.
We were in and out for our cheese and pate lunch in half an hour, I’d like to say it was excellent value for money but the hidden charge of £100 for parking was a sickener. The main car park being full we’d descended the ramp to what we had always considered the overspill area. Unfortunately our muscle memory was aligned to evenings and weekends. (I don’t often get to have a mid week lunch date with my beautiful wife). The staff at Dukes & Castlefield Estates were apologetic but they had us bang to rights. “Pay up suckers”, rang in my ears as we headed to see Thomas in St Mary’s. (Where’s Martin Lewis, money saving expert.com, when you need him?)
** STOP PRESS **
(I emailed CPMS who handle the Car Parking at Castlefield, apologising for our error but explaining the mitigating circumstances. The fine has been rescinded and I have made a donation to The Cystic Fibrosis Trust instead. Everyone has their causes, thank you very much Lesley. We will NOT be doing that again. love to your twins x x)
Now although St Mary’s is a hospital where you want your northern sickly child to be in terms of clinical care, as a parent it leaves a lot to be desired. Having a baby in intensive care is a spectator sport at best. You cheer your children on but there is very little you can do to influence proceedings. You are utterly reliant on the skills of others, the strength of your child and a large dash of good fortune. The nurses in charge on Thomas are rotated too often for our liking, I’d assumed this was to avoid them getting too close to the children in case they didn’t make it but today we were assured it was simply down to chaos.
We arrived in a maelstrom of emotion, angry over the parking fiasco, confused as to what had set Thomas back, needing answers to questions. The young nurse had only just taken over, I don’t think she’d had Thomas before, I was interrogating her at a million miles an hour, she couldn’t answer fast enough, I got upset and had to leave the room. Some time later we all reconvened for another “Clear the air” meeting. The usual platitudes were issued, we ARE important, they DON’T share information as well as they could. Calmness restored we settled down to visit our poorly son.
“Operation put Thomas back together again”® is on hold for the foreseeable but tomorrow we will hopefully get to see inside his brain as he is due an MRI scan. His neurologist is a cross between Omar Sharif and the man who MOT’s my MX5. We like him. We are trying to avoid Thomas having a shunt if at all possible and he has told us about the crazy experimental shit they do in Japan were apparently there is a surplus of neurologists and they get bored easily. Something to do with inserting the testicles from Minky whales into babies brains, or so I would like to imagine.
On the way home we called at our third hospital of the day, Trafford General – the birthplace of the NHS. Remember Ann from the beginning of this ramble? Well on Monday night she was admitted to hospital with a chest infection. Yet again Jo was visiting her mother in hopsital, hopefully she won’t be in for as long this time? If she is? Well, my wife is rather good at visiting hospitals 🙂
“So take a good look at my face
You’ll see my smile looks out of place
If you look closer, it’s easy to trace
The tracks of my tears..”
© Smokey Ronbinson’
Although I often feel the need to cry, my tears have long since evaporated, my wells have run dry. I don’t know how Jo finds the reserves to always be spending too little time with our precious teeny tiny twins. An hours cuddle with either each day is the best we can hope for under the current punishing regime. She is a mighty impressive women my wife.
That concludes this happy update, Mia is progressing excellently and all being well is due to be self sufficient, breathing wise, on Christmas day. She is a little scrawny and needs to bulk up but that will come with time. Her Brother? Although his stoma bag is a little unsightly and his hydrocephalus has swollen his head (I’m still hoping he has a Mekon-like genius sized brain) Thomas is a beautiful, strong baby boy. Please enjoy this video of him hiccuping.
If you raise a glass on Christmas day, point it in the general direction of a Northern hospital as we are likely to be there and remember to cuddle your precious children.
Merry Christmas from Browntowers and all who sail in her x x x.
“Give me a child until he is seven and I will give you the man”
As many of you read this (wishful thinking) I will hopefully have just cuddled my son Thomas for the first time, a mere 46 days (1,100 hours) or 792,00 heartbeats (Twintime ™) since he was born and yet like his sister, he is still 9 weeks too early for this world. Only time will tell what he will become.
Since the twins were born 107 days too soon I have avoided “Googling” anything medical in case I didn’t like what I found. In fact my last desperate medical google was “Viability” on the day they were born. I bend the truth slightly as I did wikipedia “Stoma” when he went for his second batch of surgery but only to see what it was not to read success or failure rates.
In other ways the internet has been tremendously useful. Via Facebook and Twitter we have felt your collective love and many people have been in touch to relay their stories, many happy but some unfortunately terribly sad. There has also been my poorly written if well meaning blogs and through indulging our tale in reciprocation I have read the words of others all of which usually come with comments sections.
Comments sections can be wonderful places but it is also were the plankton of the internet likes to feather it nest. With trolling on the rise they can be deeply unpleasant places and one comment which recurs time and time again, obviously giving a moment of great self esteem to the writer, is “Nobody ever asked you to have children!”
How can you argue with that? They have the upper hand. The world is an overpopulated place, how dare we bring offspring into the world without mapping out their course through life ensuring we have put enough money away to cope with every eventuality that life may throw at them. How jolly naïve of us not to consider that our twins could have been born at 24 weeks + 5 days instead of the anticipated 40. Mustn’t grumble, our fault for being unprepared. Hang on though, actually just who is prepared for the journey of life? I cannot even consider Thomas & Mias world beyond tomorrow at the moment. I don’t consider my journey through life to have been planned at all, merely a series of accident and coincidences tinged with moderate successes and occasional failure.
In 1963 Granada television decided to find out if our children’s paths were indeed mapped out when World in Action ran a program entitled 7up. To be factually accurate it was 1970 when they decided to follow up the series when the kids were 14 that a chain of events leading to possibly the greatest documentary series of all time was actually put into motion. I was yet to be born.
By 7 my life felt far from mapped out. My home life was happy enough and I was reasonably good at school. Through childhood I progressed to be a skateboarder and through this hobby began to make and edit skateboard videos at age 14. This led me to consider a career in television.
In 1991 Granada had transmitted the latest instalment in the “Ups” series 35up. I remember watching it with my parents at home and worrying awfully about Neil who was still wandering nomadically throughout Scotland.
In this same year, long before I even considered having children, one of the proudest days of my life was walking into the reception of Granada TV in Manchester to be interviewed for the position of runner. At the time I was working in the laundry at Bolton hospital separating sheets from faeces and surgical debris. The laundry was a busy place full of husband and wife teams working to a score of Steve Penk playing pranks on Picadilly radio (as it was back then.) It seems topical to bring up that there was also a predatory air of sexual banter from the unhappily married women and spinsters in the folding room. They frightened me with lewd talk the sort I wouldn’t hear again until much further on in my career.
I didn’t get the runners job initially as the jolly lad sat next to me outside Colin Marsdens office was first choice. Unfortunately the £75 a week they were offering wasn’t enough for him to quit his job at Netto so I got second dibs which I accepted. Some years later that lad went on to become Peter Kay and I started making brews for a living at Granada Television in September 1991. (When I say working it turned out to be mainly drinking.)
One of the reasons I was proud to work for Granada was basically it was the bollocks when it came to TV production. What I was not to know was that anyone who writes a thesis charting the decline on Granada basically starts their diary around September 1991. I like to think I was not personally to blame for the slow downfall of the what was once labelled “The Greatest TV Station on the planet”.
In 1998 I was newly married and owned my first house. Career wise I was still at Granada working in the Telecine department. At this time most things were still shot on film and our department, amongst many other things, was where this film became video tape. The rushes for 42up were no exception. This would be the first year that the ups series would be cut on a non-linear computer based system and not hand crafted on a steenbeck. The lack of a neg cut would give me considerable pain in 2012 but thats a tedious diversion. Bruce was marrying Penny and Neil was finally happy. Tony was driving Taxis and all the working class kids were living life whilst the posh kids had fulfilled their potential whilst denying that their privilege and success were in anyway intrinsically linked.
In 2005 I had a 6 year old son James, we had moved to a new development in the shadow of Eagley Mills but sadly in sympathy with Granada TV’s fortunes, my marriage was also failing. Career wise I was now the senior finishing editor at Granada (mainly because Danny Ward had gone off to pursue a career in offline) but with the station in decline, I was considering an attractive offer to move across town to Sumners. I on-lined edited all of 49up and this made me feel I had finally fulfilled my potential.
In 2012 I had divorced and re-married. I now had a 3 year old daughter Lilly with my new wife Jo. I had left Granada to become staff at Sumners from were I was eventually made redundant before going freelance then starting my own company. ITV was on the rise and had become a great place to work again. We now lived at Browntowers in Bromley Cross, a tall stone structure with a mezzanine wetroom I had created in my own image. Although I had been in constant dialogue with Kim, the editor on the “Ups”, it was looking as though I was going to miss out on working on 56up. Fortunately through a stroke of good fortune, I was able to play a small role in restoring the series into HD. I did enough to ensure my name is on the end roller. Shortly afterwards Jo discovered she was carrying twins.
As I write this blog, Sumners as I once knew it, is coming to an end and many of my former colleagues, like so many before them, are staring a Christmas redundancy in the face. When I visit Thomas at St Marys, I pass the BBC’s former home; New Broadcasting House where I worked many times. During my visits it has slowly been reduced to rubble.
Who knows where 63up will find me? James will be 19 and at University, Lilly will be 10 and in her final year of Junior school, Thomas and Mia will both be 6 years old and at Infant school. Having married well, I hope I will not be divorced again. Television will no longer be produced in Manchester and the Granada building where 7up through to 56up were made, will probably have long since been reduced to rubble and redeveloped. With the changing climate of ITV, will 63up even get made?
Whilst visiting Mia recently, I took Lilly to visit the hospital laundry at Bolton. I was sad to find that due to “Outsourcing” it had recently closed. I was allowed to have one last wander but with the machinery lying dormant it was merely a conduit for my memories without the imminent danger of inappropriate conversation. Too often the past is a different country.
I started this blog trying to make a clever point on the back of reflecting how my life has changed against the fixed point in time which is the “Ups”, although I may have failed, the clumsy metaphor is that life changes dramatically even in 7 short years. I cannot think beyond the end of the week at the moment but I know that in 7 years time I will reflect on this time with a wonder of how did we get through that? Some things I do know is that with Jo by side getting through this is merely a formality and I know that my children have been given a blank canvas. James has shown an interest in editing, perhaps he will work on 70up?
Love and kind regards, Ian x
56up won 2 RTS North West awards on Saturday and will go on to win a Bafta.
p.s. to see how I haven’t changed this is my first “blog from when I was 9 years old at Cub Camp
“Mighty oaks from little acorns grow”.
I suppose this phrase could usefully sum up the journey that lies ahead for Thomas and Mia. By the time they reach adult life they may easily be a hundred times heavier than their birth weights. As they grow bigger and stronger they will increase their shadow on the world. From such a fragile beginning they will grow more substantial, more important and the world may come to wonder how it ever functioned properly without them in it.
I think though that the phrase may be more aptly suited to a relationship and by that I am thinking of the bond that exists me and Jo. When we first met via the interweb it was for a series of dates that mainly revolved around drinking dark rum and coke, dancing to Northern soul and indulging in romantic episodes. We didn’t row in the first six months, something we would make up for later. Considering ourselves to be well suited, we married, bought property and gave birth all within 3 short years. At no point in our courtship do I remember discussing how we would deal with having premature twins.
Last Tuesday, I remembered that I had forgotten our anniversary. I forgot to buy a card, a present, some flowers or chocolates. I had forgotten to make a special meal or do any of the other textbook romantic gestures which are expected on these occasions. Fortunately I got away with this year as Jo had forgotten too. We had both forgotten because on Friday 19th October, our 5 year wedding anniversary, we were busy visiting our two tiny children in two separate Hospitals, 16.5 mile apart.
I was cross with ourselves for overlooking our wooden anniversary so in an effort to make amends I arranged for some lovely neonatal nurses to look after Mia, Grandma & Grandad no 6 to look after Lilly and throwing caution to the wind I had a top class neonatal surgical team take Thomas on a trip to the operating theatre at St Marys for emergency bowel surgery. We said our goodbyes to Thomas at quarter past four and then headed into town for our date.
We have always loved the Cornerhouse but usually an evening meal there meant me putting in a shift at Sumners first. This evening, having missed lunch we reserved our table for five. For starters we took a punt on a couple of vegetarian tarts before settling down to a main course of pizza. Conversation flowed, looks were exchanged and desserts ordered then devoured. Almost as soon as it had started our date was over.
We took coffee in the parents room at St Mary’s and fell asleep in each others arms. Sometime later we were awoken by a nurse.
Tommy’s surgery had been a success. The join from last weeks surgery had failed which was unfortunate although not entirely unpredicted. He now had a stoma which means his bowel has a gap in it and this gap is managed outside of his body. If all goes well in the future this will be repaired when he is bigger and stronger and returned inside him where it belongs. Yet another little twist in our incredible journey so far. Hopefully this will be the last excitement for a long while.
If this whole experience has been hard for me then it has been a hundred times harder for Jo. She is a new mother but her children are not at home keeping her awake at night. They sleep 22 hours a day in incubators in distant hospitals. The last thing we do before our heads hit our pillows is ring both hospitals. When we awake we repeat this routine before preparing for the day. Jo’s day is an endless cycle of driving, visiting and milking. If she times her visits well and traffic is favourable then an hour cuddling Mia in kangaroo care is the highlight of her day. Mia’s visits are good, she is doing really well and the atmosphere at Bolton is designed around parents wellbeing. It is relaxed, welcoming and rewarding.
St Marys on the other hand is a clinical place. If you have a poorly child like Tommy then you want them there. It is a centre of excellence, the staff are professional and friendly but it is a hard place to visit. As a parent you are in the way of the medical teams but as they are keeping your child alive this is a price worth paying. The visits are short and perfunctory.
There are wobbles and moments and we take each day as it comes but as I write, 26 days have passed since Thomas & Mia were born which is 26 wonderful if somewhat heartbreaking days we have been able to share in their tiny lives.
The messages, cards, gifts, help and support we have had from Jo’s friends and colleagues show the shadow which her big heart casts over the lives of all those who meet and work with her. With every unsolicited gesture we receive, my pride in her accepting me as her husband grows and grows. I have always considered us a strong and formidable partnership but the fire testing this situation has forced upon our relationship has found us not wanting so far. I would not wish anyone to undertake this journey we are on but with Jo by my side I know I will not falter along the way.
Happy belated wooden anniversary Princess x x x x x
Before all this kicked off we took Thomas & Mia, in-vitro, on our annual family holiday. This year we had decided to navigate the Cheshire ring on a narrow boat, something none of us had ever done before. As usual for me, I had planned an itinerary that was in hindsight too much. In order to complete a successful navigation of “The Ring” we had to reach a certain point by nightfall each day or our mission would fail.
We collected the boat at around 2pm one late Sunday in August but by the time we were allowed to get going on our own, it was pushing 5 O’clock. We set off at full speed (4mph) and made good headway. As the captain I started to get a feel for the boat and pushed my luck cranking it up to a scary 4.5mph. Then 2 hours in we came to our first lock which was unfortunately set against us. We moored up and took a good look around scratching our heads. Although we had done the lock drill we were scared and nervous. We decided to wait until a boat came along and maybe a more experienced boater would help us through. No-one came and dusk fell and we stayed there staring at this seemingly unbreachable barrier. As the light finally failed us we retired for the night defeated, desolate and with frayed tempers. We may just as well have been facing the doors to Mordor, our voyage seemed doomed.
On Tuesday 16th October, my strength finally ran out. I was fed up of driving to hospitals. I was fed up of seeing little Tommy have setback upon setback. I was fed up of feeling useless and a spectator as the wonderful people kept our tiny children alive. I woke up with an upset tummy hoping it was merely indigestion as a bug would almost certainly mean I shouldn’t visit the twins. Jo dropped Lilly at playgroup and headed off to the hospital. I stayed in bed watching Jeremy Kyle and Homes under the hammer feeling sorry for myself and more than a little miserable.
Eventually my Imodium, Paracetamol & Ibuprofen kicked in and after a few gassy exchanges and a hot shower, I felt well enough to attempt a visit. When I got to the hospital it was a pretty poor show on my part. The play worker, Helen, took Lilly off and I sat in the anteroom with a brew, failing to do the Times crossword again. As I improved I eventually made it through to see the twins but endeavoured not to hold either of their tiny hands in case I was catching. Tommy had gone back onto his oscillator for ventilation which has the distressing side effect of vibrating his entire skeletal frame. By now we knew he was in the throws of a pretty bad infection and we had discussed ”outcomes” again on Monday with the consultant. Although this conversation was positive, it was visually clear he wasn’t doing very well. Internally I began to fear the worse.
In a vain attempt at normal life we returned home for sausages. Upset at what we had both seen, plans were made for Lilly to have a sleepover at Grandmas no 6 whilst Jo and I would return to the hospital to keep watch over Thomas and Mia. As is our new routine, Jo rang the unit to check on Thomas only to discover that this time they were about to ring us.
An X-ray had determined the source of his discomfort to be a ruptured bowel. It had to be operated on and it had to be operated on soon. Bolton doesn’t have a specialist neonatal surgical team so he would have to be transported to St Marys in Manchester. We were frightened but as always the medical presentations made by the doctors were clinically precise. His viability was being severely compromised, this had to happen. When the transport team arrived it became clear that they are the Marines of neonatal nurses. The qualifying criteria for this special branch was to parachute in behind enemy lines and bring back hostage neonatal babies back alive or possibly a special exam I told myself. Immediately they got to work, their reassurances seemed to come with an ounce of bravado. “Call that a sick baby?”, “We’ve seen worse!”. We liked the cut of their jibs.
Soon Thomas was loaded into the battery powered Travelubator ® and stabilised. We followed them out to the ambulance where a significant amount of crying between me and Jo may have occurred. “We drive fast but steady, don’t try to tailgate us” said the marines and with that they were on their way to St Marys. The brown-mobile readied we managed to keep within eye contact until we hit the end of the M602, then like moses crossing the Red Sea (except for the sirens and flashing lights) they cut a path through the mild traffic leaving us in their wake. At The Campanile we finally lost sight of our son.
Having already spent more tax than we have ever paid in via your NHS, the sheer magnificence of St Marys still came as a shock. This brand spanking new purpose built cathedral of health is simply stunning. I paused momentarily to admire the terracotta tiled exterior, seen previously on last weeks Grand Designs riverside project. We admired the sculpture and the gawped at the outpatients department and its many child occupation devices. The gut feeling was one of we are in the right bloody place.
By the time we arrived at Thomas’s new home, it was the wrong side of midnight. He was not only unscathed by the journey he was positively revelling in the attention he was getting, flirting outrageously with the nurses. For the first time in nearly a week he looked happy and settled. We met the Italian surgeon who was on shift and putting my recent Alfa Romeo experience to one side, we were instantly reassured. “We doa this kinda stuffa all of de tima”, said Dr Antonini adjusting his Armani gowns, “You are in de a righta place”. The relief was unbelievable. (Apologies for casual racial stereotyping)
Ronald MacDonald House being full, we were shown to our bed in the Phil & Julie Neville suite and retired for the evening, surprisingly relaxed.
The next day commenced with a chat with the surgical team who presented what they were going to do, what they might find and the associated risks. When Jo broached the subject of death, the response was a kind of, “Oh we hadn’t considered that, well I suppose it could happen but unlikely…”. This was what we needed to hear. And that was that really. Thomas was readied, we said goodbye, more tears flowed and then he was off to theatre. (Timescale compressed for storytelling reasons). We went for a walk, ate, drank, slept. Then at around 15.15 came a knock on our door. Thomas’s operation was over and the surgeon wanted to speak to us in private.
The short walk to the counselling room was the longest walk of my life. Every eventuality entered my brain then holding tightly to Jo the atmosphere was punctured with a “He’s fine” from the surgeon. An extensive Q&A followed but the the upshot is he had some holes in his bowel and a blockage. They tried to clear this obstruction but it ruptured so they hacked out the bad bits and patched it all up. Basic plumbing really. Thomas shouldn’t ever miss the bit he’s lost and the body will hopefully recover fully. Obviously buggering about with a baby this small is never risk free and the operation and how he deals with it may reduce his survival rates and have an effect of his long term health. The big news is though its day 13 and he is still alive and kicking, another potential serious hurdle dealt with.
Now before all this unnecessary madness manifested itself logistics were already tricky. With this turn of events they became a bloody nightmare. Thomas will remain at St Marys for at least a fortnight. Mia is of course in Bolton hospital, 16.5 miles from her brother which is up to 1 million heartbeats away in twintime® (depending on traffic). We live in Bromley Cross, Lilly goes to Eagley Infants and we have barely seen James for a fortnight. The money is running out, so I need to return to making hand crafted television sooner rather than later and my parents fly out to the middle east next week to visit my uncle John, my mothers brother, on a long planned trip. Jo has risen to the challenge as always and we have produced a paper schedule which appears to function. A further layer of complication is added as Jo can never be more than 3 hours away from an electric breast pump and a milk freezer as she is responsible for producing the marvellous medicine which will eventually take Thomas and Mia back to full health.
We have a lot on our plates it seems but it’s not the first time we have accepted a hardy challenge.
The following morning on “The Ring”, we arose early, took on that the gates to Mordor and nailed it first time. Over the course of the next 7 days we navigated 92 locks including the notorious Marple Flight which has ended the dreams of many lesser crews. We travelled over one hundred miles and took our boat through the heart of Manchester. We grounded the boat in Monton, removing ten tons of shit from the propellor along the way but the important point is we returned it back safely and on time, stronger for the experience and all changed for ever in immeasurable ways. When The Bolton Browns are faced with dilemmas and problems we sometimes get a little down, we sometimes look at them and think how will we get through this? But we ALWAYS get up fighting and life will NEVER defeat us. That said, if Thomas and Mia are somehow sentient enough to read this blog, 3 months of stable cruising will suit us just fine, love Mummy and Daddy x
Thank you all again for you kind words and support, especially The Nevilles and all those who donated to help make St Marys & our NHS something we can all be proud of. Lots of love Ian, Jo, James, Lilly, Thomas & Mia x x x
“Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning”. Winston Churchill
For this my third and hopefully final blog, we are slowly settling back to the mediocrity of normal life. I am sat here in my office, drinking a brew whilst Lilly and Jo watch crap telly in the front room. When I have finished I will make some hot beef barms for tea and then…
…we will drive the 6.9 miles up to the Neo-natal unit at Bolton hospital to visit our teeny tiny precious babies, Thomas and Mia, for the second time today. This journey through 6 sets of lights, will take us approx 20 mins which in twintime ™, measured at 160BPM, is 6,400 tiny heartbeats away.
As I type both children are doing well. Mia has opened her eyes, is beginning to feed and will soon come off her ventilator. Thomas lags behind and has had a few knock backs but that stubborn Scouse streak is taking him forward step by tiny step. I have already witnessed several impressive erections.
What does this normality mean for you?
Well unless there are any major setbacks, there will hopefully be no more dramatic Facebook status updates or tearful tweets. There will probably be no more emotional blogs were I reveal myself to have a soft exposed underbelly. There will just be normal life with its usual ups and downs and the added complication that our 2 youngest children are not at home with us, available for cuddles and kisses on tap.
Perhaps we should count ourselves lucky? Jo never got to a size where life became utterly unbearable. She didn’t have to worry too much about her ‘pelvic floors’. We won’t have to suffer from sleepless night unless brought on by anxiety and hopefully when we bring Thomas and Mia home, they will be in a cast iron clockwork routine.
It is certainly odd going elsewhere to visit your newborn children as a family. We have nailed the hand washing routine and are beginning to form friendships built out of familiarity with the our children’s carers. We no longer see the tubes and wires. I barely hear the bleeps in fact this afternoon I fell asleep whilst overseeing Thomas. It is becoming more ‘The Aphex Twins’ ambient phase than Orbital.
With fingers firmly crossed, I might mention that the ever reassuring doctors say “We are over the worst”. When there are small setbacks they are usually wrapped in the comfort of, “Thats not unusual” and “We can do something about that”. They increasingly talk in weeks and months when it comes to further procedures or scans. All of this gives us a large deal of hope that the outcome can be little other than positive. We no longer panic when we see the Sonologist, the Radiologist or a group of student doctors peering into the incubators.
If you have ever had the pleasure of watching me online your program you will have noticed a green tinged tiny TV screen position within my eye line. This is called a scope, it gives us information about video signals and can be very useful in investigative processes. The NNICU has many variations on the same idea and we are becoming deft experts at reading them. Everyday the signals are becoming better, stronger and most importantly more consistent.
And when the visits are over we travel the 6,400 teeny heartbeats home. This is still the point when one us is prone to tears but we are comforted knowing our babies couldn’t be better cared for. Just as when it brought Jo’s mum Ann back from the brink, the weight of the NHS is behind us. Indebted doesn’t even begin to cover it.
So that’s it really, although I am sorry to be telling you there is an ever decreasing lack of excitement in our lives. As a parent I am overjoyed that hopefully we will soon become stubbornly boring and yesterdays news.
Only 47 million, 1 Thousand & 600 heartbeats (Twintime™) until we can bring Thomas & Mia home for good. Here are 9,600 of those heartbeats captured in timelapse.
Thank you all again, you have been magnificent when we needed you most, we genuinely could not have got through this with our sanity intact without all your love. I hope we do not need to draw on your collective strength in such a manner for a very long time to come.
Best wishes and kind regards, Ian, Jo, James, Lilly, Thomas & Mia x x x
“If I could make a wish, I think I’d pass. Can’t think of anything I need”.
I believe that “The Air That I Breathe” by The Hollies is the most perfect pop song every recorded.Those 2 lines penned by Albert Hammond sum up the love I feel for Jo & my family better than any other sentence I am capable of constructing but it is actually the 2nd greatest song that the Hollies ever recorded which now feels the most relevant to me.
“The Road is long, with many a winding turn
That leads us to who knows where? Who knows when?”
The sheer strength of Thomas, Mia, Jo and the medical team at Bolton’s Neo Natal unit is staggering. Poor Thomas is having a rotten time and without trying to be too negative has a mighty uphill struggle. We can now tell by the body language of the acute team here whether things are going well or have taken a turn for the worse. There are tubes everywhere, monitors, machines and so many bleeps I occasional drift into thinking I am at an Orbital Concert. Mia is now on air rather than oxygen and things are looking slightly better for her.
“But I’m strong. Strong enough to carry him. He ain’t heavy, he’s my brother”.
Hopefully Thomas will stabilise and pull through. There is a strong possibility of brain damage in babies born so tragically early. The chances of one or either having special needs is a bridge we may have to cross as we go forward. If this comes to pass, I am mighty lucky to be married to one of the best in the business at looking after fragile infants.
“So on we go. His welfare is of my concern. No burden is he to bear.
We’ll get there. For I know He would not encumber me. He ain’t heavy, he’s my brother”.
Less than 10 years ago, Jo was at a very different bedside. Her mother, Ann, was in an induced coma suffering from cancer which took her right to the edge. Hope was often lost, dark conversations were had and yet Ann recovered despite the odds being stacked against her to be here today. Now Jo is a mother herself, unable to cuddle or kiss our tiny children and Ann gives us her unflinching support, endless cuddles and helps to look after Lilly. This experience is something we cling to as our little babies fight for their lives. There is a vein of stubborn scouse stock running though our children’s blood. They have found little Tommy almost impossible to tranquillize, tough little bugger!
“If I’m Laden at all, I’m laden with sadness that everyone’s heart
isn’t filled with the gladness of love for one another”.
I am a social network whore and to be quite frank its kept me sane over the past few days. The sheer outpouring of support from you all on Facebook and Twitter is simply staggering. I can’t even begin to convey how much is has meant to us. I have acquired many new friends and my phone battery struggles to keep up with it all. The blog I wrote was just intended to just get the record of the day out of my head, your reactions to it and have made us cry and cry.
“It’s a long, long road. From which there is no return
While we’re on the way to there why not share?”
We pass through constant waves of hope and fear and there are a lot of tears. I don’t think me and Jo have ever spent this much time in each others arms, just holding each other. Taking it in turns to be strong whilst the other has a moment and occasionally faltering together. Our families, as always, have delivered in droves. The pain of a distant divorce has given us an extra pair of shoulders to cry on. As Lilly always says “Aren’t I lucky to have 3 Grandmas and Grandads”? A special thanks to step Mother (in law) Vinessa & step Father (in law) Dave (with the fishes) for just being there.
The texts and phone calls from friends have also helped immensely. The kids have been amazing. James arrived today with 2 small teddies. This selfless act reduced us all, James included, to blubbering wrecks. Lilly just loves the twins unconditionally, 4 year olds see straight past tubes and machines it would appear.
“Why not share. And the load
Doesn’t weigh me down at all. He ain’t heavy, he’s my brother.”
Prepare for a rollercoaster, said the specialists, the next 48 – 72 hours are critical.
I have prepared for a rollercoaster all my life through following BWFC. From the 1995 play-off final when we 2-0 down facing certain defeat, before keith Branagan saved a penalty and Fabien de Freitas clinched a glorious brace to win 4-3, through to relegation from the premier league on the final day of last season. I have been used to riding the tidal wave of hope, elation, despair and crushing reality. It turns out that wasn’t enough experience for the situation we now find ourselves in. I keep finding myself crying at the drop of a hat and Jo is even worse. The doctors tell us everything which is both informative and crushing.
“He’s my brother. He ain’t heavy, he’s my brother…”
You would think that seeing the other parents on NNICU would somehow be a comfort. It isn’t. I just think “Poor bastards” they are suffering like us. I want to throw my arms around them but we are strangers all wrapped in our little babies plight. If hope was enough, all the tiny babies down there would have nothing to worry about.
And so finally I return to my all time favourite song
“Peace came upon me and it breathes in me
Don’t sleep silent angel don’t you sleep”.
This is our new routine. Sleep, visit very poorly babies, manage visitors, eat, visit poorly babies, sleep, visit poorly babies. Every time we leave the NNICU we just hope they won’t have deteriorated in our absence. We hope to return to find them slightly further down the road to recovery than we left them but unfortunately with Thomas we seem to find him suffering knock-backs and problems. Jo is giving them small quantities of milk and helping the nurses change their nappies. Today she was able to hold Thomas for the first time but we are not really parents in any understandable way. We often feel like spare parts as doctors administer antibiotics, various life saving drugs and take x-rays, ultrasounds and reading after reading. They are keeping Thomas and Mia alive and we are staggering grateful.
“Sometimes all I need is the air that I breathe and to love you
just to have you now”.
So that is a little insight into our world as it stands. If both babies stabilise it will continue into the New Year. If things take a turn for the worst? Well we simply cannot think like that at the moment. The only outcome we can conceive is getting them both home healthy and well next year.
“All I need is the air that I breathe yes to love you
All I need is the air that I breathe you’re all I want”.
** Message from Albert Hammond **
Thank you very much for your beautiful words about “The Air That I Breathe”.
I’m thinking of you guys. I wish you the best for those beautiful babies, I’m sure they will have the chance to live a
wonderful life. Be strong and remain faithful.
All the best, Albert xxx
I am lying in bed at 5am brushing away waves of tears because the adrenaline has finally worn off. What a day Friday 5th October 2012 turned out to be. So much happened that is almost impossible to recount. It felt like we had entered some kind of interactive episode of ER and they had a limitless budget for extras.
It is no secret that Jo has had a history of 3 early miscarriages in the past 2 years and medical science tested us thoroughly and pronounced this to a severe case of bad luck. Thats good news we proclaimed because Jo is pregnant again, ”Congratulations” came the reply, all was well with the world.
My previous experiences with Bolton hospitals’ maternity unit had been, lets say underwhelming, so I was not particularly looking forward to having more children there. This was to be a rare episode of serious misjudgement on my part.
Jo was scanned within a week and whilst undergoing the scan we were told to prepare for a shock. In a proper TV moment, the sonographer flicked the screen round and proclaimed “2 healthy heart beats!”,at this point we all broke into spontaneous laughter a klaxon went off, balloons and confetti descended from the ceiling and doctors and midwives did a near perpetual congo through the sonography room whilst cheesy 80’s celebration music played through the tanoy. Bonus ball!
After a month of shock we began to warm to the idea and apart from a bleeding scare in July, which was put down to a romantic episode in Venice, all seemed to be well. Jo was generally knackered but that was to be expected.
We had traded in our battered Alfa romeo for a 6 seater Honda FRV, ordered the bunk cots and put a down payment on the ludicrously expensive pram. More importantly, living in a 2 bedroom house, and with the prospect of our family growing to 4 children imminently, we began the scary process of looking for a new home. This thought was curtailed when our neighbours kindly decided to sell theirs and in a now typical ridiculous gesture, we made an offer and began proceedings to procure it with an eye to eventually knocking through to extend Browntowers®.
“Ian, come here quick”, of course I didn’t. I was warm and cozy in bed, listening to the radio on the Sonos and cuddling our 4 year old, Lilly. As usual Jo was scant on detail so I assumed it was just one of life’s little issues such as a lack of forward planning with regards to toilet roll. She kept on mithering so I ascended to the mezzanine wet-room to find that when Jo attempted a poo, what felt like a babies head was coming out of her vagina. In near textbook non-panic we rang my mum and dad, dressed the kids and got out of the house as quick as possible. Jo rang school on the way, as always they were wonderful. I am lucky enough to be editing under the magnificent Ruth Gray, texts were exchanged and I was assured in no uncertain terms that what was transcending was far more important than writing catty remarks about interior furnishings. (Insert sfx)
After fumbling for the outrageous £2 now required to park up for a medical emergency, we were in maternity triage shortly after 8. Jo was almost immediately put into a bed and seen to by the nurse. Within an hour the doctor had examined her and confirmed Jo’s gut feeling.”They’re coming but don’t worry you are 24 weeks+5, we can cope with that here.”
On Tuesday evening we had attended our multiple births parent craft at Bolton hospital. This had turned out to be a piece of outrageous timing as all the same people were on shift and all the information provided was ringing fresh in our ears. Delivery room D6, our new temporary home, was cavernously vast. Equipment was wheeled in and readied, heaters primed and a steady stream of people came and went dispensing information in waves. We talked statistics with the neo natal team. We discovered that our babies had legal status, that if things went wrong this was beyond being a miscarriage. We were fully informed as to what lay ahead and then in the blink of an eye it was just us, our midwife Lindsay, a trainee midwive and an anxious wait.
And so the day progressed. Special toughening up steroids and antibiotics were pumped into the babies via Jo and in an inverse of regular childbirth she was urged to hold back as long as possible as every second, minute, hour in the womb was precious and extended their survival chances by a fraction of a percent in their favour. I found a notepad in Jo’s bag and in between contractions we whittled down our shortlist of names in readiness
At around 3, Jo’s waters burst in an extravagant comedic explosion drenching the midwife. The student midwife grabbed a plastic bag ready to keep baby warm then struck the emergency button. What happened next was simply indescribable but lets just say if you found Danny Boyles’ kids bouncing on giant beds vision of the NHS impressive then you’d have had an orgasm at what we witnessed. Within seconds a positive league of nations of medical specialists descended into D6. At one point I counted 22 and then some more people came in. Everyone knew what they were doing, despite the fear and the emotion of Jo and myself, this over crowded room was a sea of tranquil professionalism. One long last push from Jo and Thomas was born at approx 3.05. As his cord was cut, I received a blood splatter which stained my jeans, I didn’t much mind. We caught a glimpse but he was speedily whipped over to the ‘keep baby alive’® machine and the specialists got to work. There was a sea of beeping, bleeping and boinging. “Is that good beeping?” we asked. “It’s just bleeping”, came the reply, “all medical equipment just beeps”. We assumed they knew their stuff so we got on with the feeling relieved and emotional bit as the midwife team steadily prepared for phase 2.
Now Mia, it turns out, could have stayed in to cook for a bit longer. She had moved from being in a put-you-up to a kingsize double bed and was stretching and somersaulting as though all her ships had come in but the nasty doctors murmured stuff about infection and risk so she was to find her new found spacious executive apartment womb to be a remarkably short lived experience. Jo was introduced to more drugs to kick off her second labour, blood and fluids were hastily mopped up and Thomas, the doctors having done their things, was wheeled off to NNICU.
This time round the room was still half packed. Mia’s waters had to be broken. We warned the doctor about the exploding membrane so she did this procedure at arms length through gritted teeth. In an outrageously unscripted moment, the waters burst sideways and drenched the legs of the same midwife who Thomas’s waters had soaked. I may have giggled just a little. She was a little stronger than Thomas but underwent the same procedure but with a slight pause for a bedside visit to Jo. Then she was gone, both our babies were gone and we were alone and in tears. When I say alone, there was still a team of people mopping and tidying up Jo but when you have spent the best part of the afternoon at the best party at Bolton hospital, we were now in the phase of scrabbling around for that dusty bottle of holiday spirit (ouzo?) you get out just before your last guests finally leave.
I got on with the important business of updating all the social networks, phone calls were made and texts were sent. We stopped short of telegraphing the queen STOP
People came, people went. With visiting covered, I nipped home for Jo’s stuff and a lightening quick shower with just enough time for a double bill of The Hollies on the Sonos© *
I called round at my mums to see Lilly who seemed disinterested as she was busy playing with Charlotte and Jack. The rest of my wonderful family cuddled and congratulated me. I whipped back to the hospital and whilst considering depositing another £2 in the parking meter I decided to stick the mornings ticket back on windscreen. I had after all lost a days pay through his palaver. This despite the entrance fee proving to be remarkable value for money.
Jo was now on a ward full of mothers with newborns. A little insensitive perhaps but the hospital was busting. Jo’s dad & Vinessa were keeping Jo sane. They soon left. News filtered through that Mia was doing well but Thomas was struggling a little bit and needed a transfusion. Bloods were taken from Jo and she was urged to express as they would need drips of milk to wet our babies lips. we wanted to see our poorly babies as soon as. Jo got showered and into her own pyjamas and then we waited. And waited, and waited…
By the time the doctors signed Jo off it had been 7 hours since we had seen Thomas and 6 since we had last seen Mia. If you have been lucky enough never to have visited a Neo Natal Intensive Care Unit (NNICU) then like us you wouldn’t really know what to expect. It was simultaneously the best and worst thing I have ever witnessed, Wonderful, precise medical machines keeping tiny fragile babies alive. Jo was in bits, she was able to touch both Thomas and Mia. Thomas was being vented so his little bony body was resonating to the beat of the machine. I just walked around in wonder looking at all the other babies in various states of development like an allotment owner perusing his yet to be award winning produce.
After more cuddling and crying, Jo was taken to the ward and as the adrenaline has long since been depleted, had a long weep. I stayed as long as possible and last orders having been called went home via MacDonalds to fall asleep on the sofa whist attempting to watch QI (Poor panel- BBC!)
So here we are. I am yet again struck by how fundamentally good and nice people are. The outpourings of support via phone, text, email, Facebook & Twitter has been simply overwhelming. I love you all but most of all I love my wife Jo. Possibly the most wonderful woman who has ever lived as I view the world through my eyes this morning.
I am thankful for the wonder of immigration that allow so many fantastic doctors to come over and help keep our babies alive whilst simultaneously feeling guilty for the people in the countries and hospitals they left behind.
I am staggered at the amount of precision machinery and sophisticated drugs that allow our premature babies to be viable. I like to think that altruistic inventors knock these things up in sheds but I suspect it has far more to do with capitalism than I care to consider.
And I thank Lord God Almighty (It is a phrase – I am a devout Atheist) that we don’t live in America. I can only begin to estimate that the costs of the care Jo,Thomas and Mia have received will run into the hundreds of thousands of pounds by the time we get them home, yet the bill that will presented to us will be just to pay our NI each and every month.
Yes in a capitalist medical system we might get a slightly more modern or effective drug. We might also get access to a slightly more cutting edge machine. That is all bollocks, I cannot fault the NHS. We are not consumers who need choice, we are parents who needed care and bloody hell did we get it!
We have a long journey ahead and things may take any number of turns. We have to return to a version of normal life knowing that our babies will be in hospital for at least the next 3 months undergoing pretty intensive medical supervision. Kids, school,work all march on regardless of what has just occurred in D6. All being well, we will be in hospital on Christmas day visiting Thomas and Mia as we won’t be bring our babies home until mid January 2013. As I lie here now that seems so far far away…
Many thanks to Bolton hospital and the maternity unit, all their staff and all who sail in her. You were and are magnificent.
* Hollies double bill
The Air That I Breath – played for Mia (1lb 8.5 oz / 690g)
He Ain’t heavy he’s my brother – played for Thomas (1lb 9.5oz/730g)
(Apologies in advance for any typos, spelling mistakes or punctuation deviations just in case Lynn Truss ever reads this.)