New Magazine Column

Some of you may remember that 3 months or so ago I wrote an article for the Little Bliss magazine. The article was a submission for the Dad's Corner section of the magazine. I am now pleased to say that Bliss has asked me to be the regular author of that column! I'm delighted to be able to contribute to the magazine and hopefully to general awareness about neonatal issues, particularly those affecting fathers. The column is normally written as a question and answer format. If you have any ideas for future columns do let me know. In the meantime, here's the previous article...

A. My baby is about to be transferred. We have just started to feel as if we know our way around our current unit. What changes can we expect and what can we do to cope better?

Q. Although there are many reasons for transfers, I think a transfer is bound to be hard whatever the reason, but particularly if it is a transfer that you don't want or feel you don't need. We found it helped though (admittedly in our case after the event!) to understand why it is that your baby is being transferred. There is a national network of neonatal units for example and the aim is to get you back to your home network if at all possible. There are also different levels of care provided by hospitals and again, the system tries to get you to the most appropriate level.

Whatever the reason, it is hard to move from one place where despite all the upheaval, stress and uncertainty, you are starting to feel at home, to a new unfamiliar environment. You are already emotional from the premature birth of your baby, are starting to understand the alarms, monitors and recognise the staff, and now it feels as if you comfort blanket is going to be ripped away from you.

It is important therefore to try and understand what to expect in the new hospital, in particular, the differences between where you are now and where you are going. Even the smallest differences (from the point of view of staff) can be a big deal when you have everything else to cope with (just where do you buy preemie size nappies from if you suddenly have to provide your own?), so try to find out about parking, visiting hours, ward round hours, facilities for parents, phone numbers etc ahead of time. If at all practical with doing a day job, caring for your baby and any siblings, your partner, NICU visits and everything else, a visit ahead of time may be a good idea to familiarise yourself with the new surroundings and get to know some of the staff.
Speaking to staff in the current unit should be a good source of information, both in terms of likely dates for a transfer but also information about your new unit.

Finally, although the fear of the unknown may mean a transfer is stressful, in many cases it is a way of getting the baby the help it needs or is a milestone on their way home. We were told that going from level 3 to level 2 units where the level of care is reduced often results in quicker progress and sure enough our son was quickly breathing unaided. There is light at the end of the tunnel.

Good luck!

[Little Bliss, Spring 2010]

New Post

Cheeky cross post to let you know a new entry is on my other blog, Kill the Dragon...!

Go read it!

A reason for hope

As I wrote here back in November last year, the 3 months when Eoin was in hospital were incredibly tough. I'll never forget the moment when a lifeless tiny grey lump fell onto the hospital bed. He was immediately whisked away by the NICU crash team (they had less than 20 minutes notice that a 26 weeker was on the way) with a GC score of just 3. He was incredibly poorly and it was 6 hours before we were even allowed to see him. Much of that day is now blanked forever. He was on a ventilator but I have no memory of seeing that. I remember going home and telling Eoin's siblings that he had been born. I have no idea when I went back to the hospital, who with and how long for. What followed was 3 months of daily commutes to the hospital. Bradys and desats became routine, the apneoa alarm going off commonplace and sleep something other people did!

This post though isn't intended to dwell on the past. Last week, and two days after I got back from Paris, Eoin was 3 years old. This is him:

Cutie, isn't he?! Not when he's fighting with his brother and sister he's not! The point though, is that despite everything we've been through, we have been incredibly lucky and have a 3 year old little boy to show for it. He had the terrible twos worse than his brother and sister. He's a tiny little fella (he's wearing some clothes that his brother wore at 12 months!). Overall though, he's doing pretty good considering the start he had in life. We know not all outcomes are as good as ours was (which is why we continue to raise awareness of neonatal issues) but hopefully this story will give hope to families out there who are going through something of what we experienced. It is hard not to, but don't dwell on what might have been, but thrive on what is.

Don't forget to check out my brand new blog Kill the Dragon!!

Just one more thing!

As many of you know, I used Google Latitude last week to update my location. You can also get your history downloaded which results in cool maps like this one...(click on it to see a better resolution version)

ipadio: Nigel's phlog - 9th phonecast

Time to go our separate ways

With the obvious exceptions of getting married and becoming father to three fantastic children, last week was the most incredible experience of my life. Running the London Marathon was ok, but ultimately I was just relieved to get it finished. The second time around the spectators and thousands of runners just irritated me! Other running events are a challenge, you feel sore afterwards but it is a shorter lived experience. Canoeing as a teenager was pretty awesome but didn't quite match last week (although crewing the Devizes to Westminster for my Father came close). Since stopping canoeing (that's a different story for another time) I have tried climbing, squash, fencing and a host of other sports only to be disappointed. Last week though was the culmination of efforts on so many different fronts. I had cycled many miles in training and in atrocious weather. I had managed to get a pretty decent amount of sponsorship along the way and for a charity and cause that I truly believe in, and I had also managed to raise awareness of neonatal issues. All these components together helped to make last week so special, even before we get to the fantastic riding, great friends and superb memories.

And now it’s over.

Not so quick grasshopper. Along with the others I met last week, I have been fighting the emotions of being glad to be home and relieved it’s over, along with a real desire to get back out there on the roads. The combination of the adrenaline high from cycling and the knowledge that what I’m doing is helping a good cause is hard to beat. In short, I love the feeling of making a difference! How can I possibly just bring that to an end? I’m not going to be going out doing another week long cycle any time soon, but I do want to keep making a difference. Those of you who have been reading my blog for a while know I took great motivation from Discovery Road and in particular the passage towards the end about making a difference. As a result, I am pleased and excited to announce that I have a new blog, Kill the Dragon, that will be all about just that, making a difference. Little by Little will also continue as a neonatal issues blog, but Little by Little has got bigger and bigger and it's time to go our separate ways! In short

• Little by Little will focus on neonatal issues, news articles and so on.
• Kill the Dragon will focus on making a difference. This will include my activities both challenges but also other activities aimed at raising awareness, as well as the actions of others.

The exact content of each will be refined with time but that is roughly how they will be split. I do hope many of you will continue to read Little by Little and also Kill the Dragon, but whichever you choose, do please keep on reading. Without the support of family, friends and anonymous users of the internet it would be like banging my head against a brick dragon!

Final Day - Compiegne to Paris

Take action. Have real experiences. Make lasting difference to at least one person. Create change. Kill the dragon.

Mileage - 63 miles (cumulative 386. Current estimates for the 'detour' on Wednesday mean this may be as high as 395)

The final day dawned a bit cloudy but still fine (how lucky were we - no rain all week!). Having been given the option of a late start, Team Jelly Baby set off 40-45 minutes after many others and after pretending to take it easy for 3 miles, cranked it up and still got to the first water stop first. On the way we went up the final (and perhaps most enjoyable) hill. Switchbacks along the way and great views, followed by a great setting for the final water stop...

Big Dave, Doo, Allen, myself, Craig

Leaving the water stop we had another 15 miles or so until lunch. For only the second time of the challenge (the first being the previous day when I had knee pain for half an hour) I struggled. The last 8 miles or so before lunch being a real slog. And I finally felt that the crazy chase through France was catching up on me. Fortunately the great food on offer at the lunch stops weaved it's magic and I was good as new as we left the lunch stop for Paris.

Legendary food from the Extreme Catering guys. Also pictured Craig, Doo, Big Dave, Richard and Dennis

With just 30 to go we started on a ridge overlooking a smog of Paris with a hazy Eiffel Tower visible in the distance. What a sight! Countryside was gradually replaced by built up areas and we were finally in the madness of Parisien driving where frankly, anything goes. Hats off at this stage to the DA crew markers. How the hell did they manage to put orange markers up all the way through Paris?!
After spending a while clapping in other arriving riders from our bar-based vantage point we joined up with the whole group for the final 4 miles of joyous riding into the Eiffel Tower. Bells ringing, DA crew van blasting music (Amy hanging out the window) and enough critical mass to bring Paris roundabouts to standstill, we finally, after 9 months of training, over 3000 miles in the saddle, nearly 400 miles from Cambridge and 5 days after leaving Addenbrookes, reached our goal.

I wasn't expecting that after such a major event I would feel a bit of a downer, but as I write this, the fact that 9 months of training, 5 days riding and the huge goal has been satisified means I am indeed feeling a little at sea. Keeping positive though, what were the high points?

• The fantastic send offs and support I got at Addenbrookes, Harlow and Bliss HQ
• Arriving at Dover having been lost but knowing we were on the way to France
• Cruising along at 20-24mph in a group of 8 (two abreast) with such little effort
• The great friends I made who will be friends long after the soreness has disappeared (you know who you are!)
  
• Feeling stronger and stronger each day
• The support and camaraderie between riders
• The food that was put together in lay bys by a couple of blokes and a gas stove
• Riding in mad Paris
• Reaching the Eiffel Tower
• Seeing an orange arrow regularly
• The smooth French roads
• Keith's dancing on the pavement in Paris at some unearthly hour of the morning
• Meeting Rachael in Compiegne after she made the effort to come and meet us despite not being able to do the event herself
  

And the lows?

• The food at the hotels and the ferry
• 30 minutes of knee pain on day 4
• 30 minutes when the wheels fell off on Day 5
• The cold
• Now that the event is finished
• England v Algeria

And what have I learnt?

• It is possible to make a difference
• Nothing is impossible if you set your mind to it
• "Let's go steady" is a lie
• I need new pedals, cycling shoes, a new chain and block, to remove my bike lock, get rid of my bell and to put my seat up 1 inch. Then I might be a decent cyclist
• Big Dave actually needs a bell
• Doo is nuts
• I want to do another one
• Jelly Babies, cups of tea and showers can cure pretty much any ill
• The meanings of the words 'lumpy' and 'undulating' are different to how 'normal people' would use them
• I have a great family who have supported me and allowed me to do this in the first place
  

So, now it's over,

Do I wish I was still on the road to Geneva? You bet!
Will I be embarking on a new challenge in the future? Absolutely
But am I glad to be home with Eleanor, Ciara, Connor and Eoin? 100% defininitely

Finally, it is poignant that I am writing this tonight. 3 years ago to the day, Eleanor had been in hospital for 10 days, I went in to visit her for what was fast becoming a routine evening visit, and a few hours later Eoin was born. As those of you who have read this blog from the start know, he nearly didn't make it and the turmoil of the next few months was to reshape our lives forever. If it wasn't for that experience, cycling from Cambridge to Paris would still be something other people do.

I'm off to find another dragon

(come back later this week for an announcement...)

ipadio: Nigel's phlog - 8th phonecast

I HAVE MADE IT!!!

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Final Day

70 miles to go...
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