Last long one of the year

It was good to get out on the road for a decent ride after all the snow! I managed to do a few cycles to work - one in which I just about made it when all motorists about were struggling, and the second when, after having my 'life raft' on the back of the car I discovered that my back brakes were frozen ON!

Nice then, to get out for for a '20 miler' which being in Derbyshire with my brother was both a nice change but also longer that 20 miles! Great route that was mainly 'up' on the way out, and 'down' on the way back. Thanks Simon - must do it again sometime...

Happy New Year everyone - see you on the roads in the New Year - 2010 - the year of C2P...

You know you're the parent of a preemie if...

Well if you don't laugh you'll cry! As stressful as it is being the parent of a preemie, there's always something to laugh at isn't there? Happy Christmas everyone!

You know you're the parent of a preemie if...

1. ...you have started using your own corrected age to make yourself a little bit younger
2. ...you're on first name terms with all the triage staff at all the local and regional children's A&E's and clinics
3. ...you're still sterilizing everything that goes into your child's mouth after 12 months corrected
4. ...your smoke alarm battery gets low and you spend ages checking if the apnea alarm is working first
5. ...your friends look on aghast as you grab a child who has gone blue, clear their airways, use drugs, check monitors, check child is now okay and then carry on drinking tea and chatting as normal
6. You know your older child is a preemie when your younger one is born healthy at term but gets mild jaundice, and your husband asks the nurse if he's had his first blood transfusion yet
7. ...your 3 and a half year old can fit in to 0-3 month shorts
8. ...your husband begins to need the sound of the electronic breast pump to fall off to sleep
9. ...their first sets of babygros and cardigans are even too small for an average size baby doll bought in Toys 'r' Us
10. ...you begin to think that there is a silver lining to prematurity when you tot up the amount of money saved on formula milk and vitamins due to you getting them on prescription
11. ...you speak a strange language that other parents at the local playgroup do not understand - CPAP, de-sats, hypo-tonic, NG feds, apneas, cynosis, RDS, bilrubin levels, CDC......
12. ...you do a happy dance around clinic every time your baby has gained a gram
13. ...you ring the doctors with a full list of symptoms and possible causes
    
14. ...your doctors know exactly who you are and who your baby is before you've said your name
    
15. ...you look at dolls clothes and wonder if they'd fit your baby
    
16. ...you have a prepared answer for "isn't he small"
17. ...your baby has started sleeping through the night, but you still do hourly observations to make sure he's still breathing
18. ...the first thing you sit down to in the morning isn't a cup of tea, it's the breast pump
19. ...you put your feet up to read charts and notes each morning, not the paper
20. ...you are still charting how many times your preemie has had a dirty / wet nappy at 18 months old
    
21. ...the beep of the microwave sends you into a blind panic
22. ...you start lying about how old your child actually is to avoid all the annoying questions
23. ...you still have frozen EBM in the back of your freezer 2 years on!
24. ...you have the direct childrens ward access number at the top of your speed dial and all the nurses know you
25. ...you go to the pharmacist and they immediately look for prescriptions with your childs name on even if you haven't ordered anything
26. ...you have a whole heap of answers ready for questions on oxygen
27. ...the labels in clothes mean nothing - if it stays up, it'll do
28. ...strangers mistake your 21 month old and 8 month old as twins
29. ...you use the raincover on the pushchair for the first 6 months after baby comes home regardless of season or weather
30. ...your work colleagues deliver your 'congratulations it's a boy!' card at the same time as your 'sorry you're leaving to have a baby' card
31. ...on the postnatal maternity ward you use the cot to store your belongings
32. ...in the hospital canteen the till operator gives you the staff discount because you eat there so often
33. ...the nurses buzz you in automatically, because you've been there that long
    
34. ...as a stay at home mum, the first thing you say to your husband as he walks through the door is not 'how was your day at work, darling?' but a full handover of your baby's cares, feed regime and drugs for that evening
35. ...approaching a junction you find yourself getting in the lane for the hospital, even though your baby has been discharged.

Many thanks to all the parents on the Bliss messageboard who contributed to this list.

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.

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...

Busy time for Bliss

It's a busy time for Bliss. Earlier this month I was fortunate to be invited to attend a focus group meeting at the Cabinet Office to discuss the experiences of parents of premature babies with civil servants in the Prime Minister's strategy group. It was an interesting afternoon and we wait to see if anything good comes out of it.

A few days later, Bliss released the latest version of the Bliss Baby Charter Standards. This charter, first released in 2005 provides guidance and stresses the importance of family centred care in neonatal units. The charter lays out 7 guiding principles:

1. Every baby should be treated as an individual. "I have a name not a number!" This principle states that babies have the right to privacy, pain management, kangaroo care and limited levels of light and sound

2. Decisions are made in the baby's best interest. Informed decisons are made with full involvement of the parents as much as possible. Also suggests sufficient emotional support is provided to parents especially at difficult times

3. Babies receive adequate levels of care. This encompasses Bliss' 1:2:1 campaign for nursing levels and includes the need for staff providing support for breastfeeding, discharge planning, physios, social workers etc. This principle also calls for care close to the baby's home, and also the mother receives care in the same hospital

4. Continuous Improvement. Looks for monitoring and benchmarking of standards and improvement, particularly for family centred care.

5. Support and Information for parents. Includes tours of units, introductions to staff, facilities for parents to have down time and information on support networks

6. Promotion and encouragement of breastfeeding.

7. Coordinated, coherent discharge planning. From planning discharge, provision of facilities for rooming in through to post-discharge care and support.

Quite a lot there isn't there! At a later date I will revisit this but suffice to say for now that even things that you would expect to be in place automatically often aren't (no mother and baby aren't always in the same hospital, they certainly aren't guaranteed to be close to home and 1:2:1 nursing is a luxury few will experience at the moment). For now, visit the Bliss website to learn more.

Finally, Bliss launches its Annual (and 30th birthday!) report later this week at an event at the House of Lords. A future post will report in this event... :o)

It starts here...

So, Cambridge to Paris, something like 360 miles in 5 days. Sounds easy when you say it quickly doesn't it? Throw in the few thousand training miles, particularly through the wind, rain and sleet of the next few months and it becomes a challenge!

Not that I'm starting totally from scratch. I commute 12 miles or so (round trip) to work 2 or 3 times a week and go for the odd run. Still better than nothing. Typically the day after I devised a training plan last week I had a twinge in my knee. I hope it's just in my mind...!

All change!

Well, not exactly all change, more a change of direction! As you can see, this blog has been decidedly quiet since I started it with great intentions over a year ago. The slight change therefore is that now the blog will loosely be about my preparation and training for cycling from Cambridge to Paris next year, in aid of Bliss, the special care baby charity. In addition however it will still include stuff that is kind of related to this goal, be it info on parenting a preemie, interesting news articles, what I've learnt about sitting on top of two wheels for hours at a time and also my all important fundraising activity.Please come back soon...