Christmas Cheer

I remember the day our son came home. 101 days after I'd first started my daily trips to hospital, 3 months after he was born, and 4 days before his due date, we were finally able to bring the little fella home. No longer would we have a life fragmented between Eoin's siblings at home, hospital and in my case work. No more morning calls to find out what sort of a night he'd had, to find out his weight, which nurse was looking after him and how he was doing. No more rushing home from work, throwing dinner down my neck and straight out to hospital for the evening - every evening. No more petrol station coffee and chocolate to just give us enough energy to make our way home at the end of the evening in hospital. And no more alarms.

When it came, it was remarkably, scarily, quick. We arrived to discover today would indeed be 'the day'. We were handed a big carrier bag full of drugs, were taken through them to ensure we knew which, when and why (16 doses in all, some daily, some twice daily, some thrice daily), a quick go on the resucitation doll and then we were away. Our little man was ours, in our care and at last we were a fully complete family.

Great news then, that some of the tiniest babies have beaten the odds and will be home for Christmas. In New Zealand, a preemie born 16 weeks early has arrived back in the country after being born in Australia. After a special flight, Drew, born weighing just 760g is now in New Zealand will be in hospital for a while longer.

And on the other side of the World, the World's smallest ever baby, weighing just 259g has also come home in time for Christmas. Olivyanna was born in Alabama at 24 weeks, one of triplets. Born in August, Olivyanna came home last Friday, 18th December.

Season's Greetings and Best Wishes to all preemies and their parents, whether they are still in hospital or have made it home, or perhaps more importantly, if they didn't make it home.

I'm not going out in that!

Ok ok, so wind, rain or even wind and rain I can do. But I'm not going out in this weather!

Actually, that's a lie. I cycled my usual route to work last Friday and frankly wouldn't have made it by car! I got as far as the usual Park and Ride where I leave the car, jumped onto my bike and was able to scoot past the cars that were increasingly struggling in the slippy conditions. In a childlike way it was rather fun!

The weather has meant though that I didn't get out for a 45 miler as planned on Sunday, so last week's 40 miler (Dec 13th) was the last decent ride I had.

Add to that the fact that it is now officially mince pie season and I'm afraid that it's not been a particularly athletic last week or so! I am consoling myself with the fact that it is still 6 months to go and so plenty of time to catch up.

Nigel's Training Lore #1.
Routes well known to you by car are further or hillier when observed from the vantage point of a bike

Safe travels!

Weekly training

After a week doing very little whilst travelling, it was great to get back on the bike today. Managed to avoid the worst of the rain and only had a few floods to go through!

After doing 35 miles today, the distances needed for the C2P seem a very long way indeed!

Digest

I always go away on business with the greatest of intentions - I'm going to get loads of reading done, catch up on lots of work and do all the other things I don't normally have time to do like a couple of blog posts. It never works like that! The 'here and now' always takes over and before you know it you're sat in the lounge waiting for the plane home.

As such, here are a couple of things that caught my eye over the last week or so that I would have liked to blog about, if only I had the time...

Fundraising

Great news is that the Telegraph has decided that Bliss will be its Christmas Charity for this year. This article discusses that it is 30 years since the Telegraph originally reported on the plight of the UK's premature babies. As a result, several letters in response later and a new charity, Bliss was formed. The article goes on to discuss the issues that are regularly discussed here (e.g. this one). Go ahead and donate to a great campaign. Or even better, donate via my site and help me get to Paris!

Research

Interesting research out of Boston Children's Hospital. Researchers have determined that stem cells from bone marrow may reduce inflammation in the lungs of preemies, and reduce the impact of chronic lung disease. CLD effects many preemies who spend a long time on either a ventilator or other breathing support such as CPAP. It can lead to longer term requirements for oxygen on coming home and issues with lung health as they grow, including increased risk of bronchiolitis or other breathing complaints. As a result of spending two months or so on CPAP, our little fella has CLD although a relatively mild version. He was still hospitalized on his first Christmas Day with bronchiolitis, but does not need oxygen at home. What is does mean is that is he gets a cold and it typically knocks him out more than a 'regular' child as it goes onto his chest. From mild cases like Eoin through to those who require oxygen support at home, anything that can help has got to be good news. This may be the next push since surfactant and steroids were developed to give premature babies as much chance as possible despite having such immature lungs.

Training Update

Easy week this week.

More wind. More rain.

20 miles closer to Paris. 'Nuff said.

Keep up to date!

Quick post to let you know that I have now added a little widget over there on the right that allows you to subscribe to my blog posts. It means all posts will be emailed to you so that you don't have to remember to call in here. You only get emailed if I post something.

Go on, what's the worst that can happen...!

Help Wanted!

For those of you with experience of having a premature baby, the following trials may be of interest to you if you are interested in supporting the understanding of issues impacting parents of preemies.

Researchers at the University of Aberdeen are developing software that is able to generate easy to understand reports on the baby's current condition, which will be updated every day and available online. Further details can be found here.

Meanwhile researchers at the University of Nottingham are looking for fathers of preemies to discuss their experiences of interacting with their preemies. Findings of the study could contribute to the design and development of future services regarding information and support for fathers in this position. More information can be obtained from Sophie Hingley at lwxsrh@nottingham.ac.uk.

Finally, on a related theme, I'd be interested to know fathers' (or their partners') thoughts on support groups for fathers. We have a support group for Dads at our local hospital, it would be great though to explore ways to improve it. The theory was that whilst Mum's groups with the children playing and mum's sitting round chatting was something mums are comfortable with, Dads weren't as comfortable talking in that setting and afternoon chats didn't work for most Dads anyway. Therefore, an evening Dads (or male relations actually) group was established. 7-8.30pm every other Monday. No beer, but bread and cheese was provided. Whilst the first few meetings were attended by perhaps 4 dads, the last few I have been there on my own. I'm reluctant to pack it all in but equally don't want to flog a dead horse.

I don't expect full written answers to the following random thoughts, but any comments welcome...

• Is a group setting at any time of day unappealing to Dads?
• Is evening a bad time because Dads coming onto the unit to see babies after being at work all day won't want to step out for a chat?(would holding a group during ward rounds make it more appealing?)
  
• Would email or phone be better?
• Does the macho thing make it harder to seek or accept support anyway?
• Would talking to females be more comfortable?
• Would a more informal event for Dads where talking about their babies just kind of happens without the expectation around it be more attractive?
  
• What do Dads want?!

Please leave a comment - thanks!

Training report

A weekend with the family in Derbyshire meant a change of scenery and a chance to go for a 30 mile cycle in Derbyshire, on my nice new shiny bicycle. Not 'Dark Peak, hills the size of mountains' Derbyshire you understand, but a nice series of villages interspersed by the odd hill here and there. Rain almost held off, but not quite!

What's this all about then?

Just found this fancy gizmo at http://www.wordle.net that allows you make word clouds. So, in a cloud, what is this blog all about...?

Why I'm fighting for preemies

Happy Fight for Preemies Day!

I thought it might be an appropriate day to explain why I'm fighting. This is Eoin.


Admittedly it was two years ago. He's more like this today:

If it wasn't for the skill and dedication of the doctors and nurses, he wouldn't have turned out anything like this. Born 3 months early, with only 18 minutes notice and 1 minute before he would certainly not have made it, Eoin was born a very poorly little boy. We had to wait 6 hours before we could even see him whilst the medical team stabilised him. And then began daily visits to the hospital, one step forward and two back, blood transfusions, meningitis, transfers between hospitals and brain scans. Slowly but surely, he gained weight, started wearing clothes, came out of an incubator, began breathing without oxygen, breast fed and yes, finally, after 3 months, he came home.

This was undoubtedly the most stressful period of time our family has experienced and whilst there are sections of it blocked out and lost to my memory forever (I remember little about that first day and have no recollection of Eoin on a ventilator) there are other experiences (as I wrote about here) that will be with us forever. We are determined to turn this experience into a positive one through both fundraising and raising awareness of the issues that effect Eoin and preemies like him. Issues such as

• Transfers - Eoin was transferred from what we considered to be our local hospital to one twice as far away and the opposite direction to my work
• Maternity leave - Maternity leave begins on the day that a baby is born. This means many mums of preemies return to work soon after (if not before) their baby actually comes home from hospital
• Starting school - Eoin was born in June but was due in September. There's a whole school year in the difference and the regulations concerning defering even for those preemies who need extra help are patchy and inconsistent
• Staffing levels - Bliss has launched a 1 to 1 campaign for intensive nursing. It's only what adults in intensive care already receive!
• Family centred care - Simple things like improved access to kangaroo care, being there when the baby transitions from an incubator to a cot or starts wearing clothes are all important to a family but often just part of the daily grind for over-worked staff
• Support for families - Counselling services are patchy and not always available

I want to reiterate that were it not for the staff and care Eoin received, he wouldn't be here. There is though lots to improve for the babies, their parents and the staff.

That's why I'm fighting for preemies.