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.

A nod to the other side of the pond

In addition to the fundraising and campaigning that goes on in the UK, other countries have their own charities doing great stuff on behalf of preemies, for example Australia and notably, the USA. The March of Dimes has been active in several areas of pre and post natal care since 1938 and has declared November Prematurity Awareness Month. In additon to turning the Empire State building purple (no, really!) and hosting a celebrity luncheon, the organization has declared November 17th as Fight for Preemies day. The intention is to get as many bloggers as possible raising awareness of prematurity. I'd like to think this blog does its bit, and will do tomorrow!

Once a preemie...

Eoin is two years old (he's even two corrected age as well now!). He's been discharged from most of the consultants that he has been seeing regularly since discharge. The child development team discharged him and are delighted with his progress. Sure, he's a little tiny fella but on the whole, he's doing great.

But the experience that we and he went through never quite leaves you. Children are children and regularly get sick. Eoin's big sister has a cold and as long she remembers to cover her mouth when she sneezes and uses a tissue, we barely give it a second thought. With Eoin it's always a little different. He came home from nursery early last week with a temperature. Nothing more, just a temperature. Most kids would shake it off in a couple of days and be back at nursery or school. Eoin returned to normal temperature but instead developed a cough and slightly odd breathing. We decided earlier today to take him to the emergency doctor to be checked out. He wasn't seriously ill or anything, but he, and we as a family are ex-prem. As Mum took him to the doctor, I tried hard to avoid thinking about him ending up in hospital again, and making plans for what I'd need to do. His sister asked me if Eoin was going to have to go to hospital again. He didn't. He's fine. But once a prem, always a prem, and there will always be that nagging thing in the back of your mind.

Training Report

30 miles in the Essex and Herts countryside. Still can't believe how hilly it is, but the first dry sunny ride for a while was truly a treat. Really underlines what a wonderful part of the world we live in with such beautiful countryside and villages so close by:

Great Chishill Church - The highest point in the County

Also very exciting because today I ordered the shiny new bike that will be taking me to Paris - the Giant Defy 3.5:

What a beauty :o) Image from Giant