Little by Little

Sunday, 10 January 2010

Enough's enough!

After the last month of ice, snow, a crash and Christmas overindulgence, I just had to get back on the bike today and get out for some exercise. Nothing too strenuous, just a little loosener for both me and the bike (the commuting bike had been in for a service so I wanted to check it out). I kept to main roads to avoid too much ice, and I guess went 12 miles or so. It was great to get out again, and hopefully was the first of a great year's cycling, with June 15th getting ever closer!

Here's hoping the snow - which does appear to be thawing at last - disappears and stays away so I can catch up on my training schedule in some way.

Thursday, 7 January 2010

You know...pt.2.

Well, after the tremendous response I got from my original post on the Bliss website, here is part II of my "You know you're the parent of a preemie if..." posts. The original is here.

So, without, further ado, you know you're the parent of a preemie if...

...you're concerned that a large poo will result in a loss in weight that night
..you can't remember what day of the week it is, but you know exactly how many days old your baby is
...the doll carried by a little girl is larger than your baby
...you add olive oil or double cream to every meal
...the ambulance officers and first year med students ask you if you're medically trained because all these medical terms just roll off your tongue when describing your child's medical history
...the first and last thing you do in the day is ring the hospital
...you know the number of the unit off by heart
...you find yourself looking at other little babies thinking yours was never that small, was it??
...you look back at their photos and still cry over a year down the line
...you have an answer to everything that people will ask
...you go out with the rain cover on even when its not raining
...you start using their corrected age to stop people asking questions,
...you hear beeping even when you're asleep
...you have read a lifetime of magazines in a matter of weeks
...you get overly excited about weigh ins
...the unit is on your christmas card list
...you talk about poo more than normal
...the staff phone you worried if you've not called at your usual time
...a month after discharge you're still changing your baby from the side
...you can tolerate the breast pump on the highest setting and did away with the hand pump in a matter of weeks after getting RSI and breaking the first one from over use
...sats of 92 are considered excellent, despite what nurses at Paed wards think
...the names and phone numbers of all the agencies involved are typed up and taped to the kitchen boiler for all those phone calls
...you have to get a trolley in Boots to pick up prescriptions
...every achievement your preemie makes is so much more precious, you celebrate them breathing independently, eating lumps and learning to sign
...you take a vomit bowl everywhere you go cos reflux hounds you!!!!
...you correct the new resident's medical update at the discharge meeting
...your baby's red book notes section is full up
...you actually envy mothers with stories of big babies and resulting tears!
...you have spent your own money on home alarms you don't actually need because you can't imagine your baby "unplugged"
....the first thing you say to a visitor to your house is not "would you like a coffee" but instead is "please wash your hands, you're not sick are you?"
...the space under your stairs is not filled with shoes and a hoover but oxygen cylinders.
...you enquire about your friend's/children's health, not to be polite, but to double check if you should make plans to meet up
...somebody tells you that the cousin of the wife of his brother also had a premature baby who is now 2 metres tall, has got 3 degrees and is the president of America.
...you have their drugs chart pinned to the front of the fridge so you know what's left to give in the next 24 hours

And finally...

You know you are the parent of a preemie because all their achievements mean more

Thanks a million everyone.

Join my Experiment!

Tonight I started an experiment that may work or may not!

We've all seen the stories. The man who sold his whole life online, the guy who sold advertising for one million pixels at a dollar a pop, the best job in the world, the so-called 419 scams trying to get you to help shift money out of Nigeria in return for a healthy cut, the Facebook campaigns that resulted in the UK Christmas #1, increased software sales, and changes in the formulation of a soap.

Wouldn't it be great if the same distribution and audience potential of the internet (estimated at just shy of 2 billion users) could be used to harness something really beneficial?

I have started emailing the following email to people I know and asking them to pass on the message and to sponsor me. As I said, it may not work, but even a few more quid would be great! If you're reading this and haven't received an email, do feel free to copy and paste the following message and pass it on. Thanks!

Hi,

This is an experiment! It may not work, it may be a phenomenal success. Either way, at least I have tried and it will be interesting to find out!

We have all read the mountains of spam that people receive asking for help getting 15 million dollars out of Nigeria or advertising Russian wives.

Well I want to see if email can be used for something really beneficial.

My son was born nearly 3 years ago, 3 months premature. He nearly didn't make it, suffered many setbacks along the way but finally came home from hospital after 3 months in intensive and special care. This was an incredibly difficult time not only for my son but the rest of the family too, and since then we have been determined to both raise awareness of the issues affecting premature babies and their families and also raise money for Bliss, the UK premature baby charity.

To this end, in June 2010 I am setting off to cycle from Cambridge to Paris in aid of Bliss. I am aiming to raise at least two thousand pounds, but am hoping to raise an awful lot more than that. And that's where you come in! There are many examples of the huge reach of the internet being used to sell bizarre things on eBay, shape political opinion or even determine the Christmas number 1! All I'm looking for is a donation from lots of people to take me above and beyond my two thousand pounds limit. If 10 people each forward this to 10 people, and each of those forward it to a further 10 people, all of whom donate a tenner, that's ten thousand pounds right there for Bliss to help future premature babies! Imagine the possibilities!

So, how can you help? It would be fantastic if you could make a donation, via my Just Giving website (http://www.justgiving.com/NBailey). Then, please forward this to anyone who may be able to help (the more the better!).

If you are reading this and have no idea who I am, then it is showing that this is actually working, so please do keep it going.

How much good is it possible to do using the power of the internet?

With heartfelt thanks,

Nigel Bailey
January 2010

Please visit my just giving site at http://www.justgiving.com/NBailey
Follow my progress at http://preemieblog.blogspot.com/
Learn more about Bliss at http://www.bliss.org.uk

Tuesday, 5 January 2010

Crash and Burn

Kind of ironic title given all the cold weather and snow! The very last ride of last year though resulted in a crash coming down a hill in Ireland. Weather was terrible but nevertheless, right until the end it was a great 20 mile ride down to the town of Newcastle in Co. Wicklow and back to Bray:

I had made it over the monster hill from Greystones to Bray (not so much high but very very loooong!) with Bray Head to my right, was coming down the other side and all of a sudden parted company with my bike and continued down the hill at some speed. No bones broken but very battered and bruised, with my leggings shredded, along with the skin underneath.

It could have been so much worse. The car behind was sure he'd hit me. Several others cars had to stop and all avoided hitting each other and neither me nor my bike are seriously broken. Looking on the bright side, I am missing getting out on my bike during some pretty awful weather and hopefully will be raring to go once the weather brightens a bit. It's also given me chance to get both bikes to the bike shop for some TLC.

In the meantime, there's only one thing for it...more carbo loading with another slice of Xmas cake.

Nigel's Training Lore #2.
Getting out for a ride whatever the weather may be admirable. It is also stupid

Nigel's Training Lore #3.
Putting an extra pair of ordinary socks on is no match for sub-zero temperatures in driving wind and rain in December. Get some thermal socks!

Tuesday, 29 December 2009

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...

Tuesday, 22 December 2009

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...

...you have started using your own corrected age to make yourself a little bit younger
...you're on first name terms with all the triage staff at all the local and regional children's A&E's and clinics
...you're still sterilizing everything that goes into your child's mouth after 12 months corrected
...your smoke alarm battery gets low and you spend ages checking if the apnea alarm is working first
...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
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
...your 3 and a half year old can fit in to 0-3 month shorts
...your husband begins to need the sound of the electronic breast pump to fall off to sleep
...their first sets of babygros and cardigans are even too small for an average size baby doll bought in Toys 'r' Us
...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
...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......
...you do a happy dance around clinic every time your baby has gained a gram
...you ring the doctors with a full list of symptoms and possible causes
...your doctors know exactly who you are and who your baby is before you've said your name
...you look at dolls clothes and wonder if they'd fit your baby
...you have a prepared answer for "isn't he small"
...your baby has started sleeping through the night, but you still do hourly observations to make sure he's still breathing
...the first thing you sit down to in the morning isn't a cup of tea, it's the breast pump
...you put your feet up to read charts and notes each morning, not the paper
...you are still charting how many times your preemie has had a dirty / wet nappy at 18 months old
...the beep of the microwave sends you into a blind panic
...you start lying about how old your child actually is to avoid all the annoying questions
...you still have frozen EBM in the back of your freezer 2 years on!
...you have the direct childrens ward access number at the top of your speed dial and all the nurses know you
...you go to the pharmacist and they immediately look for prescriptions with your childs name on even if you haven't ordered anything
...you have a whole heap of answers ready for questions on oxygen
...the labels in clothes mean nothing - if it stays up, it'll do
...strangers mistake your 21 month old and 8 month old as twins
...you use the raincover on the pushchair for the first 6 months after baby comes home regardless of season or weather
...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
...on the postnatal maternity ward you use the cot to store your belongings
...in the hospital canteen the till operator gives you the staff discount because you eat there so often
...the nurses buzz you in automatically, because you've been there that long
...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
...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.

Monday, 21 December 2009

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!

Sunday, 6 December 2009

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!

Friday, 4 December 2009

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.

Sunday, 10 January 2010

Enough's enough!

Thursday, 7 January 2010

You know...pt.2.

Join my Experiment!

Tuesday, 5 January 2010

Crash and Burn

Tuesday, 29 December 2009

Last long one of the year

Tuesday, 22 December 2009

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

Monday, 21 December 2009

Christmas Cheer

I'm not going out in that!

Sunday, 6 December 2009

Weekly training

Friday, 4 December 2009

Digest

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Sunday, 10 January 2010

Thursday, 7 January 2010

Tuesday, 5 January 2010

Tuesday, 29 December 2009

Tuesday, 22 December 2009

Monday, 21 December 2009

Sunday, 6 December 2009

Friday, 4 December 2009

Subscribe via email

About Me

Just Giving

Labels

Subscribe To

Vistor Locations

Blog Archive

Product Cloud

Other Preemie Blogs

Other Cycling Blogs

Fellow Cycling Challengees

Loyal Followers

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