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.

Tom J B

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

9 responses to “6 months is a very very long time”

  1. I am so sorry to hear your news. Thomas has a loving family and will only know love in his life. Also he has two sisters to look out for him. My thoughts are with you all.

  2. In my 16 years as Mum to a fabulous lad with many and varies complex needs there is one valuable lesson I have learned and hold dear to this day:- Only ever take the professional’s prognosis with a pinch of salt and never underestimate the powers of character and determination. Your fabulous children are fighters by nature and although it may not be the life you had envisaged for Thomas I am in no doubt he will have a happy, loving, squeeze and laughter filled life full of endless possibilities and promise. He’s also a proper chuchypops and them legs need a proper good razzy on em xxx

  3. Thinking of you all- Thomas has the best support network he could ever wish for, as do you and Jo have. Help is always round the corner and never give up the fight.xx

  4. Thinking of you all, as well as our continued support and prayers from ‘scouseland’ !! If Thomas is half as strong as his ‘scouse’ grandma’ he’ll do alright! Lots of love, Margaret and Dave xxx

  5. Thinking of you all, yeah im crying. But you are right Ian, Jo is the best mum & teacher Thomas could have. He has a lovely caring family.
    You know where i am if you need anything at all. I know you have a fab close family to look after Lily etc, but ask guys.
    Wish i give give you all a big hug, xxxxxxxxxxxxxxx

  6. Thomas and Mia have the best Mummy,Daddy big brother and Sister that they can ever have. Thomas might have a few complications but we are all so glad that he is here with us. He has got the best of everythng with the family inside and outside of Browntowers. I have preyed every night since they were born I might not get to the end without falling asleep but I continue when I wake up.
    Thinking of you all and sending you all my love stay strong and don’t give up.
    Lots of love marie <3 xx

  7. You guys are amazing with such a precious family!! You are continually in my thoughts and prayers. Love Rosax

  8. oh ian and jo so sorry to read this and that thomas journey has taken this turn. Bloody prematurity 🙁

    People will be under the illusion you are strong as you keep going in spite of everything although we know it is because you have no choice.

    Comparing him to Mia will not be easy as it is visible to see what his peers are doing 🙁 she is a wee star and will help him too in time to come as will their big sister.

    Great Jo is a special needs teacher and has the expertise.

    Going back to work will be hard,I know it was for me with just 1 child.her needs weren’t such an issue but NG and constant puke through the night made functioning difficult.

    It may be that you have looked into options to stay at home. I know we did and no help was available.

Leave a Reply

Your email address will not be published. Required fields are marked *