At all other times

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, when you need him?)

(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.

11 responses to “At all other times”

  1. Thinking of you both. Stay strong, they have both come such along way and will continue to improve. 29 years ago on Friday (21st) I had my eldest daughter she was 4 weeks old when they let her come home so I know how it feels to visit them in SCBU (as it was then)on christmas day when all you want is them at home. Heart felt feelings go out to you and Jo and your wonderful family.xx

  2. Good to read that Mia is coping well, even at a mere 1.1kg, and hope that Thomas gets the Op he so needs soon.
    I wish you all a merry Xmas and hope you have some uplifting news for the new year.

    Best wishes

  3. So glad Mia is getting very strong ,and Thomas will get there but will take that bit longer ,he is one fighter !! and hope he gets his op soon . Thanks for all your blogs and updates eventhough it will be hard.Keep getting your strength from one another .Merry Christmas to you all xx

  4. This time 7 years ago I too had a tiny baby in the neo natal unit and also did the Christmas day visit. The staff make it special for the precious babies. My family and I will certainly raise a glass to the amazing Brown family who have never ceased to amaze me recently. keep strong Mia and Thomas xx

  5. What more can we say another teary episode, I went to the spiritualist church last week and I have have put Thomas and Mia’s name in the book so every service that is held there they will get a mention and a prayer, and every night i say my own prayer for them both. Keep holding on it won’t be long till your pushing them in their fab pram.
    Merry Christmas to you All xx

  6. Thinking of you both. Can’t imagine how exhausted you must be – physically and emotionally. Sending lots of positive thoughts and prayers your way xx

  7. Once again I will say that I don’t know how the two of you have coped and are coping with everything your going through. What a strong marriage you have and a beautiful family I know the future looks good for you. Getting through the next few months will be as the last few months have been, very stressful but your coping and holding up so well I am sure your just taking one day at a time.
    Your children are beautiful and your tiny babies are strong and looking forward to being home with mummy and daddy and their older brother and sister.
    I will raise a glass on Christmas Day, to the health and strength of Thomas and Mia as the months move on.
    I hope you can take a breather and stay strong. You are both truly amazing parents.
    Sending lots of love, thinking of you lots x x

  8. My Mum would have been 68 today, and I was incredibly lucky to have had her in my life. She was the most loving, kind, selfless, beautiful woman I’ve ever known. Sounds like you know someone quite similar. Mums are the best invention ever x

  9. You dont know me but I’ve been following your story through various mutual friends. Especially my mum and sister (I’m the soon to be 29 year old previously mentioned by my mum!) I admire your strength and determination and will certainly be raising a glass to all of you on Christmas day. It may not be a conventional one but have some lovely moments this

  10. Hi Ian and Jo you are shining examples to the rest of us who are humbled by your dedication and love for all of your family. love to you all. xxx

Leave a Reply

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