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

Welsh care

In a report mirroring the publication launched in England, Bliss yesterday launched its report on neonatal care in Wales. The report again featured the need for increased levels of nursing and also the need for improved transportation. As reported on the BBC website (but not on the Bliss site - why is that not kept more up to date?), there is money available for a 12 hour transfer service, in contrast to the 24 hour service available in England. This clearly increases the risk to the most vulnerable babies who need to be moved for improved levels of care as and when they need it, not to fit within a 12 hour work day.

Andy Cole of Bliss was quoted in the Western Mail (here) as saying “There have been 12 reports about neonatal care in Wales over the last 30 years and they have all highlighted a lack of specialist staff, the lack of a transport service and the lack of capacity. We have never seen the big step change that is needed and unfortunately in Wales, the country is even further behind other areas in the UK."

Preemies have the X-factor!

As you settle down with a bottle of wine and bar of chocolate tomorrow night to watch the X-Factor (what do you mean you don't?!), you may be watching two more potential celebrity preemie ambassadors in the making. Along with Phil and Julie Neville (who writes in Little Bliss magazine - including this article), and of course Kym Marsh, we now have...Jedward! The twins from Dublin were born 3 months early in the Rotunda Hospital. Whilst there is no indication that they are looking to be Ambassadors apart from this article that mentions their prematurity, it would be nice to think that they could use their new found fame in a positive way!

Jedward in action on the X-factor last weekend :o)
(picture from here)

Tonight program

ITV's Tonight (available on ITV Player until 9th December 2009) program this evening (9th Nov) discussed the issues around having a premature baby and also investigated the research into what causes premature labour in the first place.

The program was presented by Kym Marsh, who sadly lost her own son, Archie, who was born 18 weeks early. Our experience certainly can't be compared to losing a baby, but even so, knowing how I feel when revisiting the NICU even two years on, and discussing the experience of our 3 months in hospital means I have enormous respect for Kym. Along with other celebrities who make time to raise the issues of preemie babies, she is to be applauded.

In terms of the program content, it split into two areas, the issues surrounding preemies and the causes for prematurity in the first place. Many readers of this blog will be familiar with the issues; insufficient funds, too few nurses, transfers to hospitals miles from home - often splitting multiple births and mothers up. That said, it was good to see the issues being aired on a fairly well respected TV program. Also good to see Kym tackle Ann Keen the Health Minister. Having met Ann, I believe that particularly with her nursing background, she does care. However the promises fall flat without funding. she lost me in the argument over ringfencing money being a bad idea and was widely quoted last week during the taskforce report launch as saying that no additional funding would be available. Exactly where is 1 to 1 care going to come from then? No ringfencing, lots of other demands on NHS funds and an impending massive reduction in public spending. Hmm...

The section on investigating the causes of prematurity was interesting, as many of the people spoken to did not know the reason for their premature delivery (as indeed, we don't). The program reported on the work by Lucilla Poston looking into progesterone levels in saliva. This may indicate propensity to deliver prematurely, but I guess it is a long step from there to understanding the root cause, and from there to prevention. Still, in the name of this blog: Little by Little!

Further details of the issues raised can be found on the Bliss or Tommys websites.

Weekly training update

Much nicer weather this weekend! Bit chilly but nevertheless nice and sunny for another 25 miler through the beautiful Essex/Suffolk countryside. Helions Bumbstead and 'The Camps' provided the scenery this time. It's not half hilly when you have the perspective of a bicycle!

That's 25 miles closer to Paris...

Getting Chilly

Getting a bit parky out there now isn't it?! Good time then to report on the release of a new booklet from Bliss. The booklet describes common winter illnesses particularly from the preemie point of view. It includes illnesses such as RSV, pneumonia and bronchiolitis in addition to a section on swine flu. Each section covers symptoms, how to reduce risk when to seek help etc and so is a good booklet to have around.

With premature babies at high risk of readmission in the first year after discharge often as a result of things like RSV and bronchiolitis (our son was taken by ambulance to hospital on his first Christmas with bronchiolitis), it is great that Bliss is providing this booklet.

A memorable day

Was today the day that neonatal care finally got the recognition that it deserves a the support it needs to really make a difference?

Firstly, Bliss launched its annual report. A few days short of its 30th birthday celebrations, the report observed that in that 30 year period, many government led reports have been launched with the greatest intentions, but none of them have been completed. Reflecting on the many campaigns and initiatives throughout the years and undoubted progress as well, the report concluded with the main points from the strategy document as discussed here previously.

Secondly, the Department of Health released the long awaited findings of the National Neonatal Taskforce. The findings set out a framework for neonatal care in the UK and in particular requires the often asked for 1 to 1 nursing for the most seriously ill babies, improved care for high-risk pregnancies and a better transfer system between hospital.

This is all great news and certainly got good press coverage (e.g. BBC) as well Ann Kean speaking at the Bliss report launch in favour of the findings. The big question though is whether there will be funding to back up the guidelines. The truth will certainly be in the eating...

The family on the veranda at the House of Lords!

First training ride!

Wow! What a day to choose for my first long ride! Gale force winds, vertical rain. I came back like a drowned rat! Still, that's the first long ride under my belt so from the relative warmth now it is a good thing!!

Also got to ride through some pretty Essex villages (from what I could see through the rain), particularly Henham.

I think I may need to invest in some cold/wet weather gear to get me through the winter...