1 Jan 2005

Happy new year everyone, just back from the hospital. It's been a long night of talking and tea and babies in shiny spaceship boxes.

Strange and lovely.

Have the most brilliant year.

xxx

5 Jan 2005

After the bleeding lungs, the blood counts, the infections, the oxygen scares, the countless machines going BLEEP BLEEP BLEEP BLEEP like a submarine about to hit a submerged castle.

After the heartbreaking decisions of life and death which have left us utterly exhausted, after watching and watching and listening and wondering, after a thousand conversations (which mostly felt inconsequential) through the perspex windows of the incubators..after all this...today...finally...after four weeks and two days of being a mummy and daddy that could only hold a hand, or a head through tiny windows.

Today..we finally got to hold Viking and the King of the Elves.

13 Jan 2005

This is just a brief update on Viking and the King of the Elves (Edmund and Aubrey)

Well, they're now 6 weeks old and still in their incubators at the hospital. They've both been up and down with various infections and times off feeding.

They haven't put on much weight because every time they put some on, something happens and they have to stop feeding them Julie's milk and give them some kind of liquid nutrition.

They are bigger though, and definitely developing their individual characters. Aubrey, King of the Elves, is really very disdainful of new things (being held, treatment, new incubator, new nurse ) but once he decides it's okay he's all for it.

He has also the naughtiest hands in the ward and there is nothing that he won't try to grab and play with. I have fought him over his breathing tube which he tries pulling out of his mouth with real force. It's quite shocking.

Aubrey is not a big fan of touching unless you are putting olive oil on his dry bits. He prefers the sound of people talking next to his incubator.

Edmund is totally different and whatever difficulty he faces he just seems to shrug it off and demand some more. He feeds more, poohs more, takes more chances with his breathing. Stopping breathing is quite common in tiny babies, and Edmund gets all the machines bleeping and flashing with his spectacular breath-stopping displays. He also likes a back massage first thing in the morning.

We had some difficult choices recently. Both our boys were born so early that their lungs were really not designed for breathing at that time. The ventilation they have been getting not only provides the oxygen but also makes the breathing happen. The doctors advised us that the level of support they were needing (70 -80 %) needed to be brought down fast. The only treatment available was a rather controversial steroid, dexamethasone.

There are some studies that seem to show a statistical link between this drug and the advent of neurological damage in small babies, leading to future complications, including cerebral palsy, developmental problems, hearing and vision.

After much discussion, research on the internet and talking to other parents, we decided to give our consent. This was also because the lung damage that the boys were already suffering could worsen, leading to even higher levels of dependency and further complications for their future.

The treatment was given ten days ago, and we fretted ourselves to the raw bone over it. All we can say is that within 3 days the twins dependency halved, so much so that Edmund is now on a completely new system of ventilation and taking nearly all of his own breaths, and Edmund was the worst affected.

Aubrey too had a great response to the treatment, requiring only the minimum amount of support in breathing although when they first tried him on the new lighter ventilation he spat it out in fury.

For Aubrey there is a new problem, which requires him to go to London for an operation on his heart. It's only a small operation lasting fifteen minutes, but the trip will be very stressful, i'm sure.

We go every day, but we each take a day off a week, Julie goes out and i've been busy trying to get back into work again. That's our update. Basically we love our boys and they are loving us back. Things are okay.

Martin xx

24 Jan 2005

I know it's going to be miserable tomorrow, but quite frankly, I couldn't care less. At least I can know why I am miserable and that makes it bearable! Our lovely twin boys are still not with us and they're still so fragile.

I've chickened out of work and am missing an important conference tomorrow because i can't concentrate (or care) at the moment.

Instead I will be spending tomorrow waiting for the Parcelforce van to arrive and take away my studio gear which I am selling to pay the bills.

Nothing makes sense and it's really tough keeping it together.

26 Jan 2005

Oh it's been a beautiful day.

We went into the hospital today to arrange our trip to Guy's Hospital in London with young Aubrey (King of the Elves), he needed a small operation on a duct on his heart.

However when we got there we were told that he didn't need the operation any more...it's only gone and closed on it's own...fantastic.

Then...we looked in his incubator and instead of the usual big, ugly, intrusive, damaging tube that goes right down his throat to his lungs...there's nothing.

So this morning Aubrey decided to not only heal his own heart duct but also pull the tube out of his throat..which is when they decided to give him a try without it.

Now he's just got a little nose mask on to give a tiny bit of help. In fact both our boys are on less and less support in breathing...and they're getting fat...

When they are awake..because they've weaned them off morphine now...they LOOK at things around them and reach out for them, which for babies of 33 weeks age, according to the doctors, is marvellously good news..well we knew it was marvellous because they both look so blooming beautiful...

And that's it really.

As a forward-thinking charity, Action Medical Research is creating a healthier future for everyone. Although we will still fund work into a wide range of diseases and conditions affecting all age groups, Touching Tiny Lives will give extra impetus towards solving the problems of pregnancy, childbirth and the early years.

Go to the get involved or giving sections to find out how you can help, or make a donation now.