Category Archives: Thomas & Mia

6 months is a very very long time

On Monday 26th March 2013, after 33 days of “Normality”, Thomas John Brown (Twin 1) stopped breathing. Only for a moment but a moment none the less. I was busy upstairs getting dressed, Jo witnessed it all. With me due to start editing in exchange for money on Tuesday, the Browns were on our way to hospital again. Well timed son, bloody kids!

A week in hospital followed, poor thing had caught a cold and was too fragile to cope unaided. Somehow, as has become our lives, we muddled through. Jo camped out at the hospital, Lilly was despatched to Grandma’s (no6) and we played pass the parcel with Mia. I completed my 3 day edit, whilst Thomas was moved to HDU, tube fed and ventilated. Scary perhaps, but oddly routine for us, just a routine we had hoped we had outgrown.

6 months ago today to this very moment I was at home at Browntowers with the family, relaxing after a particularly average meal at The Latino Lounge. I had a full order book, Jo was a good 5 months pregnant, the kids were happy, the epic mezzanine wetroom building work was reaching completion and all was well with the world.

What a difference a day makes? 24 hours later, after the most extraordinary day off our lives we were sat in Bolton Hospitals NICU watching our severely premature children fighting for their lives, our world unfolding in front of our very eyes.

Suffering from severe bleeding to the brain, it looked as though Thomas wouldn’t make it through the first 48 hours. We assembled pretty much every living relative to say their goodbyes but he miraculously rallied, making fools out of our medically informed pessimism. 3 further times Thomas journeyed to the edge to play chicken with death. Each time God blinked.

The next 5 months stretched us to the very limits of our endurance. 5 lots of surgery, 3 months with the twins in separate and distant hospitals. My 40th birthday, Christmas, New year. All came and went barely celebrated.

Life soldiered belligerently on. Needing money and distraction, I returned to work making top class daytime entertainment for ITV. Lilly (age 4) never had so many sleepovers, party invites & days out. In-between she was a comforting presence at the twins bedside, nursing them, singing to them and generally being a top class big sister

Nurse Lilly

After 139 days our ordeal was over and normality could finally begin.

A happy ending? With the benefit of hindsight it certainly seems that way but we are able to remember the journey from the wrong end. When it started this outcome was not guaranteed. It looked likely that one, maybe both of our twins, wouldn’t complete their impossible journey. Fortunately, as you all know, they did.

On Easter Monday, we were able to bring Thomas home after his 2nd much shorter stay in hospital. Exhaustion was met with a bombardment of health professionals. The outreach worker, the health worker, the audiologist, the dietician & the optometrist all either came to visit or engaged us in long telephone conversations.

We were already aware that Thomas had had an inconclusive hearing test on his right ear, meaning he may (or may not) be partial deaf. His eyes had been repeated tested in hospital and he had been signed off but we were getting increasingly concerned about his inability to fix on our faces when interacting, something that our reference baby, Mia, did easily and with pleasure.
The optometrist had a cancelation that afternoon and was quite forcefully persuasive that we should fill it. After a week suffering patient-line we just wanted to cuddle up and watch crap telly but Jo reluctantly wrapped Thomas up and set off for the appointment, we assumed it would be routine.

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It would have been a miracle if Thomas had survived his incredible journey intact. Sadly he hadn’t. Although his eyes are functionally fine, his cabling is not in great shape. He has a condition called CVI and is possible severely visually impaired. We weren’t prepared for this news and if you are under any illusion that we are strong, the last few days would would proof that we are not. The mood has been black at Browntowers, the future is not how we planned.
Coupled with his shunt and a possibly dicky ear means life will be tough for Thomas John Brown. Just for good measure he is still on Oxygen too, making every journey outside Browntowers an exercise in military planning although in other news – Mia is perfect (touchwood) If we could clone her, we would be millionaires.

So thats our new life. The twins survived their epic journey but the price Thomas has paid is heavy. He is a child with substantial complex needs, what a jolly good piece of luck for him that his mother happens to be one of the finest special needs teachers in the land.

Life will not be easy for us going forward, the money has nearly run out and the editing world is barren at the moment. Jo returns to work in July and that is when the fun will really begin. Looking after a gaggle of children at home is hard but enjoyable, doing the same thing whilst both holding down jobs will be quite something else.

Thank you for all your continued love and support, it means so much to be in so many peoples thoughts x

Paradise

“Cause I lost my Job, 2 weeks before Christmas”

Turns out Rodriguez (Sugarman) must have worked for ITV, pre-Christmas redundancies was standard operating procedure just like the Imperial fleet jettisoning waste pre-hyper space (ask Hans Solo)

In Twelve hours time, Thomas and Mia, our teeny tiny twins, will have been home for 6 months. Every day their dark time in hospital seems a little further away until outpatient letters drop on your doorstep to cast a shadow over our lives. “How’s Thomas doing”? people often ask “Still Blind” I reply, never quite getting the laugh I envision (I Must get a better writer). “Really blind?”, “Pretty much”. Wait till he’s older and I’ll ask him how much?

The one good thing about having a bionic disabled special needs son is the blue badge. As long as Thomas is onboard we can drive straight in, avoid parking fees and get the best spot in the house. Of course this benefit is negated by the oxygen cylinders, the bulky equipment, his blindness, his ongoing hydrocephalus and the temporary faux celebrity status. Luckily our local star is on the wane, people have stopped stopping us to ask a myriad of well intentioned but banal questions and resorted to parking their cars almost entirely on the pavement to block our twin prams passage. Wankers.

(Mia is on the verge of crawling in case you are interested?)

One of the last things we did before Jo’s cervix collapsed is join Delph sailing club, unfortunately we spent the arse end of 2012’s sailing season embedded in various North West hospitals. When the twins finally came home we went back to Delph and to cut a long & tedious story short, we now own a fully functioning sailing boat due to the selfless generosity of Kaye & Dick Hodgson who bore us only minor bitterness for Bolton beating Preston in the 2001 play-off final. Last Sunday, me and James made complete tits of ourselves by failing to even sail our Miracle over the start line in a handicap race. We left, head bowed in shame, before drinks. It’s the taking part, I remind myself. I awake in the middle of the night remembering the incident in terror.

The most irritating thing about this unintended journey our life has taken is people telling us “How strong we are”, or how Thomas & Mia “Couldn’t have asked for better parents”. Sorry but that’s just bollocks. From the NHS, from Bolton Music Service to Delph sailing club I have discovered that despite the protestations of our ruling classes, society is in good shape. People give their time, freely and willingly. When watching my eldest son James playing in his guitar ensemble I am overwhelmed by a feeling of guilt that the Bolton Music Society exists on a wave of goodwill and talented musicians like Guy James giving their up their precious free time for the good of the youth tomorrow whilst I give so little back. Using Delph Sailing Club as a metaphor for my life, strangers have welcomed us, accepted us, helped us and moved us on drawing satisfaction from their lives simply by giving without expectation of payment or reward. Not even getting cross when we recklessly sailed into oblivion last week, merely encouraging us to practice harder and try again.

It is you are strong, your words and love keep us moving forward and stop looking back. When we look back we are doomed as the journey we have been through is too tricky to comprehend. Forward is the only option, we are on a Starboard tack.

Love Ian, Jo, James, Lilly, Thomas & Mia

Voodoo Shunt (Slight Revision)

On Wednesday 9th October 2013 at approx 08.39 I saved 3 children from almost certain death. As I was walking Lilly to school we heard a panic stricken mother running after an electric blue Vauxhall Minerva which was accelerating under its own steam backwards down a steep incline after her errant son had let the handbrake off. Without thought for my own safety I attacked the Minerva with my shoulder and fuelled on adrenaline I brought everything I had to offer to resist the inertia of the car. After practically burning the soles off my boots I beat the car into submission, she reached in and secured the handbrake. “Thank you” gushed the mother and I turned and utter the words I have wasted so many time on Jo in the past. “When you are parking on an incline love, ALWAYS leave the car in gear FFS!”

By any judgement this makes me a hero but there will be no parade, I am too modest for that. Speaking of heroes, ours are Mr Khalil & Mr Bukhari and all their surgical teams and anaesthetists at Manchester Childrens Hospital & St Mary’s. Without them we wouldn’t have our twins here today and in particular, Thomas.

Certificate

A year ago today, on Wednesday 17th October 2012, at only 12 days old Thomas had his first life saving operation to repair a ruptured bowel at St Mary’s hospital in Manchester. He would have 4 operation before he left St Mary’s, 3 on his bowel and one to insert a shunt to control his hydrocephalus. Without the intervention of these clever surgeons, Thomas would have faced almost certain death.

Today, exactly a year after that first operation, we were back for more surgery.

Having a shunt makes Thomas Bionic. Without the insertion of a valve and plastic pipe-work to move excessive spinal fluid from his skull to his abdomen he would die. Unfortunately when you are reliant on a human made component to keep you alive you are also prone to an occasional malfunction bringing you back into hospital for a “revision”. Thomas’s shunt was not operating at its optimum. Despite him being well in himself, the evidence from weekly measuring showed his skull size was accelerating away from the acknowledged centile. For too long we had waited for it to correct itself but the evidence was damning, his shunt had to be revised.

There is a big difference from being “IN” and “OUT” of hospital. When we were IN hospital, surgery scary as it was, was just part of the process of fixing the twins to get them home. Being born so dangerously premature, at 24+5 weeks, they were in for a minimum 15 weeks regardless of any setbacks. Of course the first time your child has surgery it’s frankly terrifying, but by the third or fourth time it has become routine. It becomes something that breaks up the monotony of an extended stay in hospital, in an odd way it gives you a focus, something to think about, something to kill the time, “A bit of excitement”. Towards the end of the twins stay in hospital we had become so medicalised, so used to procedures needing doing that if Josef Mengele had popped his head in and suggested that swapping the twins internal organs over would give them a better life outcome we would probably have signed the consent form.

But for nearly 6 months now we have been OUT of hospital which makes the prospect of surgery a complete pain in the arse. Having 4 children, we have serious logistics to implement. We both work and Lilly, our 5 year old, has a social diary bursting at the seems with engagements and parties. Me and James have the boat to incompetently race on Sundays and this weekend its Bradshaw fireworks. There are financial things to consider too. Every day off for both me and Jo is unpaid and being already nearly 6 months down on wages through the twins premature birth, things like paying £70 a day for the services of a childminder of which we are not seeing any benefit really hurts our wallets. Its all a trifle bloody inconvenient if I’m honest.

We set off at 6.45 this morning as Thomas had the first available surgical slot and unbelievably everything happened bang on schedule. The two teams of surgeons, neurosurgery & bowel, had no last minute emergences to attend to which would have scuppered Thomas’s slot. He went in, they took everything out, gave it a good rodding, replaced a valve then put him back together. Textbook. We can’t say for sure that this will resolve the matter as it seems the issues lie with absorption of fluid at the abdomen and unfortunately Thomas is battle scarred from his multiple bowel operations which seems to be the route cause of the issue. It is not unthinkable that Thomas may require further surgery to find a different absorption point for his spinal fluid, with the heart being a prime candidate but lets think positively? Hopefully this has done the trick.

Thomas

And there we have it, another operation for Thomas which has hopefully fixed his shunt. He is still blind, deaf in one ear, has probably cerebral palsy, definitely has hydrocephalus, a damaged palate from being on a ventilator for far too long and is still reliant on oxygen overnight. That aside he is happy in himself. He is our beautiful baby boy with a gorgeous smile, wonderful laugh and ever loving cuddles. Best of all he is Bionic! How many of you can say that?

(For anyone looking for Mia news, she is practically discharged, and despite her journey is a perfect, normal, noisy, wriggly beautiful baby girl)

MIA

Thanks again for all your love and support, best wishes X

Three years on

Today is Thomas and Mia’s third birthday.

Birthdays should be nothing more than a joyous celebration. With the twins though, life is far more complicated than that. Emotions of all flavours will be running high depending which moment you catch us trapped in.

Earlier this year Jo lost her mother. She’d spoken to her the night before her death. “I just need to sleep love”, and she did.
Nothing has been able to fill that void in Jo’s life. There is a heart shaped hole where her mother used to lie. Anyone other than her mum is simply the wrong shape or size to fill it.
Ann, Jo’s mum, almost died ten years earlier when her battle with cancer took her to the edge of life. She won that battle and Jo experienced her mother become witness to all the key stages in her adult life from marriage to motherhood.

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Three years ago today, as you will all remember, Jo in her second stab at childbirth delivered our twins into this world a mere hundred and seven days prematurely. Their fragile lives hung in the balance from the very start. It began the hardest journey of our lives.
To cut a long and well documented story very short, both twins went on to win their battles with varying degrees of success.

Mia escaped almost unscathed to become a ferocious self sufficient dynamo. Thomas has some ongoing issues that we are dealing with.
For their parents, the experience of going to sleep every night not knowing if they would both be alive when we woke up had an ongoing transformational effect on our lives. I lost count of the times I prepared Thomas’ obituary, never ultimately requiring the painful words I’d written.

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Ten years ago Jo ripped up her mums obituary when she too defied the doctors. Those extra years gained with her mum should but doesn’t ease the pain of her passing. There are experiences like the twins birthday that will never be shared with her mum. There won’t be a photograph, a memory, a shared reminiscence of today’s milestone with grandma. Yet for every memory we will never have, we have a dozen of moments that ought never to have had happened. the woman who beat the doctors with the twins who followed her in her footsteps. Priceless ever last one.

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With the twins we have gained memories that we never thought we’d share. There is a feeling that they, particularly Thomas, have somehow through all the best the NHS had to throw at them, cheated death.

When the first draft of his life was produced, they somehow forgot to show it to Thomas. He simply improvised his way into our hearts.
This morning I held, as I often do, Thomas to my breast in skin to skin contact. I was overwhelmed, as I often am, with so many emotions that it would be impossible to distil them into text.

He’s a miracle but I’m an atheist.

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Thomas’s life so far is measured in small victories but mostly in the dent he makes into the fabric of everyone who meets him. Meeting Thomas improves your life and before you know you are conscience of the fact, you are repeating the words “Hiya” incessantly and retrieving what ever object he is chucking at the time in a game without end. Try it, I have no reason to lie to you.

We wouldn’t change our life for the world. By that I really mean we wouldn’t change Thomas. The joy we have experienced from being lucky enough to bring him up and the new experiences he has taught us, make every day worth living. He’s not broken, damaged or faulty, he’s simply Thomas just like Mia is simply Mia in all her ragged glory. The same goes for the rest of us

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Lilly (7) is a both the best and worst sister mia could hope to ever have, often in the same moment.

James (16) is a conscientious fine young man, who one day we hope, will acknowledge that the the twins actually do exist.

Jo (35) is the luckiest break Thomas will have. How many severely visually impaired children get to have a specialist in this field for their mother?
I (42) am just a dick who tries his best. Balancing insanity with bewilderment and confusion are my chief child rearing skills.

The rest of our ensemble is made up of warm hearted family and friends who help us stumble our way through life bringing up too many children in a house that is too small and on too many floors for Cerbral Palsy.

Our team though is now a player short. A specialist position that cannot be fixed in the transfer window. A Grandma

Jo’s mum Ann was not perfect. She always rang at the most inconvenient of times to share the most trivial of thoughts. Living through it, it was at times immensely irritating and frustrating. We’d swap anything today just to be irritated and frustrated one more time.

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Today their will be cake and a toast, tears and sick but no sledgehammer.

To the Twins and to Ann x