If at first you don't succeed...

Well its almost 3 years since I wrote in my blog. And an awful lot has happened in that time!!!

Emily is almost 5 and is at school for starters.

But in this first entry I want to talk about our twin boys. In March 2006 our twin boys Matthew and James were born, 3 months prematurely. It was an absolutely awful time for us, the boys were so tiny, just 2 and a half pounds. To make matters worse, there was no room at the local hospital, so the boys were shipped to Hackney while Gem had to stay at Basildon.


James, left, and Matthew, right

When Matt was a couple of days old, he had serious problems and suffered IVH which caused his lungs and brain to bleed; it took over an hour for the staff to bring him back and during that time he stopped breathing; he didn't breathe for 25 minutes at one point. We were told that normally, they would have given up after 15 so it really is a miracle that we have Matthew at all.

NICU is a rollercoaster ride at the best of times, the boys would have breathing problems, or infections, every day was a challenge for them.

After a few weeks the boys were transferred back to Basildon Hospital; but shortly after that Matthew had to be sent to Bristol to see a specialist there. We spent about a month in Bristol, while James stayed in Basildon; Gemma and I were split between the east and west of Britain. Matt had an experimental treatment which we hoped would prevent him from getting hyrdocephalus. The brain surgery and recovery took about a month; but eventually he was sent back to Basildon hospital.

Matthew was only 6 weeks old when we were told he has Cerebral Palsy. He suffered a lot of brain damage and even now we don't know to what extent he will be affected by that.

The boys eventually came home at the end of May. While they were in hospital we had moved house, and (with a LOT of help from our family) we had completely redecorated. The house we had bought was pretty much gutted and we spent about 6 weeks getting it ready for everyone to move in.

It was great to get the boys home but that was not the end of the story.

When the boys had been home for a couple of weeks, James stopped breathing. It was in the middle of an amazingly hot June, the boys had been having trouble coping with the heat.

James went completely purple, like a bruise. Fortunately Gemma and I had received CPR training before the boys came home and we had to put it to use: It took around 5 or 6 minutes to get James breathing again. The ambulance arrived in 7 minutes.

Baby CPR was bizarre, James only weighed around 5lbs, maybe a bit less, so you pretty much cover his whole face when you breathe air into his lungs and you have to use two fingers to push up and down on his chest.

Gem was amazing. She swept everything off the kitchen table in one motion and I began the CPR; Gem took over and somehow brought him back to us.

Those were the longest 7 minutes of my life.

It turned out that James had caught a virus which affected his breathing. It transpired that Matthew had the same virus but we caught it early: his lips were turning blue while he fed so we took him into hospital. No one believed that both boys would have the same symptoms, but we refused to leave and eventually a nurse saw him start to turn blue and they admitted Matthew.

It took a week for the boys to get over the virus but it was nasty. They would stop breathing regularly; every hour, or every half an hour. There was only one resuscitation kit on the ward, and there were 3 children in who had breathing problems. Someone had to keep an eye on the boys at all times, there was no time to sleep.

The staff at the hospital were fantastic, with one notable exception: one nurse was very blaze about things and didn't believe me when we told her that Matt wasn't breathing, I had to call other nurses over (quite urgently I might add). All she would say was that the machine said he was OK. The machine was wrong.

Once home, the boys were fine until around Christmas time. They got ill, just like other kids do; but nothing out of the ordinary.

Matthew began physiotherapy for his cerebral palsy and we would attend sessions weekly or bi-weekly to learn how to push and pull him about. Physiotherapy: it's nasty; some of it hurts and irritates Matthew, and makes him cry, you really have to learn to harden yourself to it all, which is so sad.

Anyway, around December we discovered that Matt's hydrocephalus had returned. He had scans and tests and eventually went back to Bristol for an MRI scan which confirmed the problem and suggested he would need a shunt.

We had an appointment booked for an operation in Bristol but as always, Matt had his own timetable. He became seriously ill and had to be admitted to hospital. He was shipped by ambulance to Great Ormond Street where he had his first shunt fitted.

He was home within a week, but as soon as we got him home he started having fits; another ambulance was called and he was returned to Basildon Hospital.

The first shunt failed after a few weeks. We thought it had blocked, but in fact it was worse: part of it had fallen into Matthews brain.

He had to go back to Great Ormond Street where they literally fished the piece out; the hole they had to cut in his skull was horrendous, a couple of inches long and half an inch wide. But they got the shunt out and fitted a new shunt.

Matt returned home again; but it wasn't long before he was ill again. The new shunt was infected.

Back to Great Ormond Street; and this time they removed the shunt and gave him an 'external' version. He was very ill and took a very long time to recover.

By May, Matthew was home, and has remained home ever since.

So, he has been home a year now, and we are almost a normal family again... James has been fine since his incident where he stopped breathing, in fact he is a little terror and into everything!

It's just the constant attention we get: physiotherapy, occupational therapy, speech therapy, sight specialists (this is the abridged version of the boys start in life, there were actually lots of other bumpy rides along the way!), social services, special education teams...

Today we had Matthew's physiotherapist and occupational therapist round to video Matt. They are planning to get him a special suit which will help him to control his muscles a little better and the video is part of that process.

We also had a friend over: Lynsey, and her twin daughters who spent the first few months of life in the beds beside Matthew and James, 2 years ago. They have an older daughter called Millie so Emily had someone to play with as well!

I think thats it for a (re-)introductory post. I wonder if it will be another 2 or 3 years before I post again...?