Little by Little

A Transatlantic Comparison

2010-08-17T20:16:00.002+01:00

A few months ago I blogged about a US website, PreemieWorld that I'd come across. Since then myself and Deb, one of the owners of the site have exchanged a few emails and decided it would be interesting to compare experiences. Despite the best of intentions, this has taken slightly longer than either of us anticipated, but finally we have both completed our homework, and so here is the output. I'd be delighted to hear your comments...

Intro (Child's first name, gestational age at birth, weight, length and complications plus length of stay in intensive care)

Deb: My daughter is Rebecca Discenza, also known as Becky. She was born at 30 weeks at 2 lbs. 15.5 oz and was 16 7/8” in length. Becky stayed in a Level III Neonatal Intensive Care Unit (NICU) for 38 days battling three heart defects, apnea and bradycardia spells as well as a nasty case of reflux. She came home on an apnea monitor and oxygen and wound up back in the hospital five days later due to feeding issues. She also came home with a team of specialists (Cardiologist, Pulmonologist, Ophthalmologist, Neurosurgeon) and home healthcare nurses.

Nigel: Eoin Bailey was born at 26 weeks at 2lb 4oz. He was in a Level III NICU unit for about 71/2 weeks and then was transferred to a Level 2 unit for a further 51/2 weeks. He came home 4 days before his due date. Eoin’s complications included bleeds on the brain and several infections including meningitis shortly before he was due home. Slowly but surely he has been discharged from his consultants.

General question regarding rough set up of neonatal care in our respective countries (different levels of care in different hospitals, networks of hospitals etc)

Deb: My daughter’s hospital like many in the United States are teaching hospitals and are often part of a large network of regional groups. There are private hospitals as well in the outlying areas. The NICUs fall into Level I, II and III with Level I providing care for the late preterm babies and the Level III units are for the sickest babies.

Nigel: Hospitals are arranged within regional networks (England has 24 networks). Within each network the intention is there is a mix of Level 3 (NICU), Level 2 (SCBU) and Level 1 (high dependency) units, typically 1 or 2 Level 3s and more Level 1 and 2. There are no private neonatal services in the UK.

How was your experience with labor and delivery at your hospital? How was the staff helpful/not helpful?

Deb: The check-in bed unit was simply awful, with a nurse telling me that had I contacted the hospital sooner about the preterm labor sooner that they could have done something to help me. This was after I had warned my OB a month prior that I was concerned that this baby was coming early and I was told it was just my hormones overreacting. Lovely! In the Labor & Delivery room, I had great nurses, but the one that drove me nuts and helped me the most was the one that helped me learn Lamaze in literally 5 seconds and 10 minutes prior to my daughter’s birth. It was total chaos but when I heard a very tiny kitten-like cry out of my daughter, it was so worth it.

Nigel: My wife was in hospital with pains and bleeding for 10 days before Eoin was born. Although the doctors were sure he wasn’t coming, Eleanor was nevertheless given steroids ‘just in case’. As time went on, irregular contractions became more regular, but only in the evenings. For three nights, Eleanor was moved up to the labor ward, only to come down again the next morning. During this time we were spoken to by a member of the NICU staff, but didn’t see the unit itself. On the final night, we again went up to the labor ward and after a terrible night during which we were told that Eoin wasn’t coming, a nurse finally recognized that Eleanor was in labor and 18 minutes later he was born. With an APGAR score of just two, (it had risen to a score of four five minutes later) he was little more than a lifeless grey mass.

How were you introduced to your preemie for the first time? Was it in the delivery room or in the NICU? What was that like?

Deb: Shortly after birth the NICU staff took over and assessed my daughter while the OB doc attended to me. Then I turned my head and they held up Becky to me for a second and I locked eyes on her. Thankfully they had a blanket wrapped around her tiny body so all I saw was what appeared to be a large head and her face. Later my husband had the staff wheel me down to the NICU on the stretcher to see Becky. I was very out of it and didn’t realize what had happened until we got in there. There my daughter was on the warming table with all of these tubes and wires and she looked really unhappy. I felt so out of control and my brain was not exactly in gear. Next thing I know I am being pulled back into the patient elevator, brought to my room and told to rest. Yeah, right! Needless to say I didn’t get a lot of sleep that night.

Nigel: I was briefly allowed to see Eoin before he was rushed off to the NICU by the crash team. He was in a plastic bag and lifeless. Eleanor wasn’t able to see him. Because he was so poorly, it was then 6 hours before we were allowed to go down to the NICU and see him. I have blanked out much of that time but remember the feeling of being completely overwhelmed by all the monitors, alarms and leads. I don’t have any recollection of Eoin being on a ventilator – he was fortunate to be on that for only 24 hours or so before going onto CPAP. I do remember though the feelings of hopelessness, panic and fear.

What did you like best about the NICU staff at your hospital? What do you think could have improved?

Deb: I loved the nurses in the NICU. They were a great emotional support to my husband and myself during Becky’s stay when no one else around us had a clue what we were going through. The only areas I would have improved would be to have the nurses start talking about breastfeeding earlier and note that it is a long process for a NICU baby and that just pumping breast milk is a great thing to do. I also would want them to talk about infant massage techniques and skin-to-skin/Kangaroo Care as well as these topics never came up and I was the person who found out about it and requested KC’ing time and time again.

Nigel: Most of the staff were absolutely great. In particular in the early days they were very keen to ensure we understood the alarms and procedures and to keep us up to date with progress (or otherwise). Often the nurses were overstretched which did mean that things like kangaroo care were harder to organize. I would say there were some staff that were great and if one of them was looking after Eoin (the nurses rotated their care) it was a happy day. Others though left you wondering if Eoin would be looked after at all overnight.

What were some of the hardest moments in the NICU for you?

Deb: I would have to say that it is an even split between the first time I met Becky in the NICU when I was on my stretcher and when I saw her again the next day. The next day she was in an incubator. I had yet to touch her but now I was told I could reach into the incubator “port holes” and touch her for a very short period of time. Meanwhile Becky is on her medical equipment and is obviously a mess. At one point she turned blue, alarms when wild and I screamed for a nurse. After Becky was attended to, all I could think of was “What have I done to my poor child? Is she going to get out of here alive? Is she going to eventually be able to walk, talk, or breathe on her own?” I had very little in the way of answers early on and it scared me to death.

Nigel: The hardest moments were often around the hopelessness of the whole thing. Eoin was our baby and yet for the most part there was little we could do of significance for him and had to accept we had a long road ahead of us where his care would primarily be from nurses. This was made worse when Eoin was transferred against our wishes to another hospital that was further away from home. I could no longer go in on the way to work, it took twice as long to get there, meant Eoin’s siblings saw him less and made things like establishing breastfeeding harder for my wife.
The absolute hardest moment though was a few days in when I guess I was grieving for the ‘normal’ birth we didn’t have. I felt so desperately sad thinking about what might have been. Eoin had several bleeds on the brain and an enlarged ventricle. What might he have achieved without this? Why him? As time goes on though, these thoughts did go and you just learn to accept that Eoin will be what Eoin will be. Since then, we have been amazed at how well Eoin has done and having seen some term babies coming into the NICU with severe problems, there really is no guarantee of safe delivery at any gestation.

When and how you were able to have Kangaroo Care?

Deb: This actually makes me laugh every time. I was able to do Kangaroo Care because my mother-in-law mentioned to me early on, “I wonder when they will let you do Kangaroo Care?” and I, in my postpartum hormonal nuttiness immediately thought, “Kangaroo Care? Where is the Kangaroo?” So I had to ask for this from the nurses several times and it took a couple of weeks before it actually happened. They eventually brought out this weird lounge chair thing and told me to sit down while they tipped me backward. Good grief! They pulled Becky from her incubator and laid her on my chest. My first thought was not exactly motherly . . . it was more like “my kid is like a cold, clammy insect” but within minutes I found myself smitten with KC! My husband took one look at Becky’s blissful face on my chest and then one look at the stabilizing of her numbers on the monitors and said, “Deb you have to see the look on her face!” We were desperate to find a mirror but didn’t have one. So my husband sufficed with taking pictures.

Nigel: We had to wait several days for kangaroo care. Finally the day came, out he came, my wife settled down with him and then an emergency admission came in and Eoin went back into his box! Kangaroo care generally only happened once a day and so either my wife had it during the day, or I had it in the evening (depending on nurse availability). It made such a difference when he came off CPAP and into a cot rather than incubator and we could then essentially cuddle whenever we wanted. Even then it took some getting used to to not ask for permission to hold our baby each time!

What facilities did your unit have for parents?

Deb: Beyond the waiting room, lockers for personal belongings, and a breast milk pumping room, there wasn’t much in the way for the families. I am aware that my daughter’s unit was fairly old and that they are now preparing to re-do the entire NICU with private rooms and a full set of facilities for parents.

Nigel: The first hospital had 5 rooms for parents to stay. In addition there was a day room with kettle, microwave, TV and toys for siblings. The room now also has internet access. The second hospital was smaller so had 2 rooms and a more rundown kitchen. Both hospitals had screens for expressing. The first hospital had several rooms you could sneak into for privacy whilst the second did have a room for expressing.

How did the staff prepare you for discharge? Did you feel at all ready to leave the NICU?

Deb: The staff was very careful in making sure that we had the medical equipment companies involved in the training of the apnea monitor and oxygen. Beyond that we were expected to pass an Infant CPR class that we took through the hospital (which was super odd because there we were in the middle of a class with like 50 people with pregnant moms, their family members and more and then my husband myself. Needless to say it got even weirder when the instructor suggested we go around the room and introduce ourselves and tell a little bit about why we were there and immediately looked at me to go first. You could have heard the collective “gasp” of that group a mile away when I noted that my daughter was in the NICU and then the collective “relief” when I stated that she was doing well now and would be coming home soon. I didn’t want to freak out the parents to be but I also was acutely aware of how abnormal my situation was and I did everything I could to avoid hiding under the table. It was super awkward.

Nigel: ‘Prepare’ might be stretching it a bit! We arrived that morning hoping Eoin would be discharged but not knowing for sure (it had been delayed a couple of times due to meningitis and other infections). When we got there we were told he was coming home (with canulas in each hand for continued iv antibiotics during his first week at home), and were quickly shown through his enormous bag of drugs, were shown the CPR dummy and had a quick practice and then we were allowed to take him home!

What was the first day/night at home like for you?

Deb: It was surreal because here I am telling the NICU nurses that I am terrified to bring my child home and they basically shoving me out the door! Thank God for my husband because he did a lot to calm me. After all of the chaos we had been through prior to that the ride home and going into the house was super calm. No one was there to greet us at our instructions, so we kept things really simple. And yet despite this I was freaked out every time that darn monitor went off and I found myself more times than not reviewing the Infant CPR guidelines because I was so nervous. That night I think I got about an hour or two of sleep. I was a wreck the next morning.

Nigel: The first day was one of pure relief as well as being terrifying! All of a sudden here he was. After going to the hospital for 101 days straight it was over. And it was totally over to us. We had kept it a surprise from his siblings just in case he didn’t come home that day and they were absolutely delighted to come home to find him there!

What were some of the hardest moments in the homecoming for you?

Deb: Our first issue was trying to keep Becky eating. She wound up in the Pediatrics ward 5 days after coming home due to feeding issues and ongoing apnea alarms. I don’t think we slept much in those first 5 days and by the time the doctor took one look at us and mentioned admitting her so they could run tests and we could go home and catch up on our sleep, I felt drained. The second issue was handling all of Becky’s various needs throughout each day with medications, feedings, checking her medical equipment and having to handle the home healthcare nurses coming through to download data and such. Oh and then throughout all of this I was on an every 2 hour breast milk pumping schedule. It was insane! The third issue was handling all of the “gawkers” that we had in family and friends who seemed desperate to meet the “tiny” baby. As it was full-blown RSV season I was a complete freak about hand washing and had no qualms about telling people to not come over to the house. I learned quickly that my Address Book of friends was changing right before my eyes. They didn’t get what we had gone through and they were not very helpful with their “relax, she is out the NICU” comments and more. The professionals totally got it and I found them a powerful set of allies in keeping me properly educated and to understand that the general public is going to have inappropriate comments and uneducated opinions.

Nigel: Despite having two older children, just generally looking after Eoin was so much harder due to the natural inclination to over protect him and worry about what might go wrong. On several occasions in the early days he decided to stop breathing and went blue with us desperately rubbing him to convince him to pull himself together! We then went through a zinc deficiency problem resulting in open sores all over his body (and resulting in a paper for the medical staff treating him when they finally identified the source of the problem). Finally, 3 months after he had come home and on Christmas Day, Eoin was readmitted to hospital with bronchiolitis for a further week.

What national/state/local services were available to you in the NICU and after discharge?

Deb: My daughter did not yet qualify for the state therapy programs so we were able to sign up with the local Health Department’s Infant Monitoring Program where a Social Worker would come out and check up on Becky and us each month and then a Physical Therapist would do an evaluation every few months. Early on the team came out to the house because Becky was on medical equipment and had a low immune system but later we went to their clinics. They were helping in letting us know when there were issues so we could get Becky evaluated by the Early Intervention team. Along with this we had the NICU’s Follow-Up Clinic where we had Becky evaluated by a full pediatric team at 6 months and then 1 year later. They used the data from those evaluations for research and as well as for us so it was a win-win situation. In end though, it was really the local preemie parent group, Preemies Today, that I found so very helpful. This group of parents supported me online many a time that first year and shortly thereafter I joined their Board of Directors and have since volunteered ongoing.

Nigel: All services for neonates in the UK are national (there is no private NICU in the UK at all). Eoin was seen by the paediatric community team for a week after discharge for antibiotics. Other than that he was seen by the health visitor at home. In addition he was under several consultants for general neonatal care, child development, respiratory etc etc. These gradually discharged him to the point where it is now just a respiratory consultant and ophthalmologist who is monitoring his progress. In addition to the medical care, the national premature baby charity, Bliss, has been a great source of information and support. There is also a local support group run by parents at our local hospital.

What advice would you give another parent with a baby just entering the NICU? Preparing for discharge? And, finally, at home?

Deb: First off I would tell a parent that he/she is not alone and that while their child is unique and special their preemie issues are not and that there are information and support groups out there. I would also, if you don’t mind, recommend the new book that Nicole Conn and I wrote called The Preemie Parent’s Guide to Survival in the NICU that can be found on our website at www.PreemieWorld.com. I would also recommend they go to the website to check out the “Freebies 4 You” section, too, as we wanted to create some items that families could use here and now in the NICU stay and right at discharge.

Nigel: First bit of advice is to remember whatever happens you have just become a parent – congratulations! Too few people (friends, family) feel comfortable saying ‘congratulations’ in the early days, ‘just in case’. The number of people who only sent cards once Eoin was home! I would also say you need to remember you need to accept help from anyone who asks for it, and make sure you rest – you have to stay strong yourself. On preparing for discharge I would say that you need to ensure you are happy with the drugs or other treatments that will be coming home with you and don’t be afraid to ask questions. It will be an incredible relief to be finally coming home, but also is a very stressful time. Finally, once you are home, try and enjoy it!

Were you transferred between hospitals and for what reason?

Deb: As Becky was born in a Level III NICU; she was able to receive her care there right away. I
We were really lucky to have that already in place. I feel for the families that have to travel hundreds of miles back and forth each day just to see their baby at the new hospital. It is especially hard on the siblings as then they are also feeling abandoned. It creates great strife for all involved.

Nigel: The way that networks are organized in the UK means that whilst on the one hand it guarantees each network has hospitals at each of the 3 levels, for those living near the boundaries, your local hospital may not be in your network. Whilst Eoin was born in our local, nearest, hospital (level 3) , once he was well enough he was moved to a level 2 unit in our network that although twice as far away, was considered our local hospital using the strict network guidelines. This was incredibly difficult for all of us for many reasons, predominantly the reduced time we got to see Eoin each day due to the extra travelling time.

New Magazine Column

2010-07-07T21:44:00.002+01:00

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

2010-07-01T20:31:00.001+01:00

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

2010-06-29T08:26:00.005+01:00

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!

2010-06-24T08:51:00.002+01:00

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

2010-06-23T21:24:00.001+01:00

Time to go our separate ways

2010-06-23T18:09:00.002+01:00

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

2010-06-21T20:18:00.009+01:00

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

2010-06-19T15:17:00.001+01:00

I HAVE MADE IT!!!

2010-06-19T14:56:00.000+01:00

Sent using BlackBerry®

Final Day

2010-06-19T06:38:00.000+01:00

70 miles to go...
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ipadio: Nigel's phlog - 7th phonecast

2010-06-19T06:34:00.001+01:00

Day 4 - Arras to Compiegne

2010-06-18T16:41:00.001+01:00

Mileage- 80 miles (cumulative 323)

Sore legs!
"Take it easy" they said. "Nice rest day after yesterday" they said. Yeah right. A few miles in and Team Jelly Baby was zipping along at 20-25 mph without a care in the World! Flatter day today after the hills of yesterday but that saw us flying through 20 miles by 9.30 and getting to the lunch stop at 40 miles by 11.00 (we had to stop for a puncture!). With no prospect of lunch for a while we pressed on, had water at 60 miles and reached Compiegne by 1.30. Truly exhilarating riding with a great bunch of guys. We deserved those beers in the town centre!
So, just 70 or so miles remaining in the challenge. So far so good with the weather and my legs are holding up well. Both knees a bit sore after today and that's not the only thing that's sore. All in all though, the training has really paid off and I feel that I'm reaping the rewards of being out in such atrocious weather in the winter.
This time tomorrow I'll be in Paris!

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ipadio: Nigel's phlog - 6th phonecast

2010-06-18T06:45:00.001+01:00

ipadio: Nigel's phlog - 5th phonecast

2010-06-17T05:55:00.001+01:00

ipadio: Nigel's phlog - 4th phonecast

2010-06-16T21:57:00.001+01:00

Day 2: London-Calais

2010-06-16T18:45:00.000+01:00

Mileage - about 95 miles
Cumulative - 163 miles

Writing this a bit early (on the ferry) as I'll be too tired to later! The approximate distance is due to getting lost and not entirely knowing where we went! We ended up doing the final 14 miles on the A2.
Despite doing an extra 10 miles or so it was a pretty good day in the saddle. Regular water/lunch stops helped as did having a group to help! Very undulating course and very very windy.
After two days in the saddle we now have three more across France, with another early start in the morning.
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Off we go

2010-06-16T06:28:00.000+01:00

6.25am Blackheath Common. It's funny. Last time I was here was 10 years ago as I was about to run London. The atmosphere then was incredible. Today smaller crowd but same atmosphere of excitement, anticipation and apprehension. The next time I see by bag will be in Calais!
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ipadio: Nigel's phlog - 3rd phonecast

2010-06-16T04:46:00.001+01:00

Day 1: Cambridge to London

2010-06-15T18:46:00.000+01:00

Distance-68 miles
Wow! What an emotional day! Finally I'm underway. The support today was great with several nurses and staff turning out at the start at Addenbrooke's. The NICU there always has an effect on me even three years on with the smells and sounds being so familiar. Today was no different although the mood was lightened when Eoin went racing down the corridor shouting for the 'inkibators'!
Next stop Harlow and again a nice welcome greeted us and it was nice to see some of the familiar staff.
Next was a trip into the unknown as I came through Epping and the 'wilds' of London. I managed to get lost a few times before finally crossing Tower Bridge and making my way to Bliss for a really great welcome and tea and cake! The final 5 miles to the hotel included seeing a gang chase complete with spades, knives and sticks and a cordoned off police area! Suffice to say I am glad to be at the hotel, waiting for my pizza starter followed by pasta!
85 or so miles tomorrow to Calais.

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We're underway!

2010-06-15T10:44:00.005+01:00

Just completed first leg from Addenbrookes to home! Enjoying coffee and toast before getting back on the road to Harlow...

Time I wasn't here...

ipadio: Nigel's phlog - 2nd phonecast

2010-06-15T07:20:00.001+01:00

Final countdown!

2010-06-14T21:19:00.000+01:00

With just 12 hours to go, the bag's packed and maps are printed!
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Completing the Circle

2010-06-13T20:59:00.003+01:00

Did a really nice training session today - the last! I repeated the first one I did at the end of last year which started me on the road to Paris. Since then, I have done something like 3500 miles in training. I have had two crashes (and here). I have been out in the worst winter the UK has had in years, and I have seen some great sights. Slowly but surely the milestones have been passed; 50 miles, 100 miles and even 124 miles! When I think back, that first session was cold, wet, windy (most of them have been) and a slog (many of them have been!). Today, it was warm, still windy but not a slog. The transformation has been amazing. With 400 miles to go and 3500 done, you could say that the challenge is now almost over. I have noticeably lost weight (I do hasten to add I wasn't exactly a fat git in the first place!), I have got very fit (a 30 miler is now a short ride!) and I have raised over £2000 for Bliss. And now the training is over. I have kit sprawled on the bed, and the next time I get on a bike will be outside Addenbrookes Hospital in Cambridge to start the challenge proper. Time for one last observation to complete my observations from the past few months...

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

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!

Nigel's Training Lore #4.
Over 2 or so hours in the saddle burns lots of energy - ensure you take on extra in the form of bars, gels or drinks.

Nigel's Training Lore #5.
Not all gels and bars are born the same.Try them in training so you don't find out you don't like them/they don't agree with you during your real event!

Nigel's Training Lore #6.
Actually, real food (pretzels, licorice, bagels, cereal bars) may work just as well.

Nigel's Training Lore #7.
Your bike has two tyres, so taking two spare inner tubes with you makes a lot of sense!

Nigel's Training Lore #8.
Not all training rides will be great, but another good one is just around the corner.

Nigel's Training Lore #9.
A training program is a guide not a rulebook. Enforced rest and 'listening to your body' will help to give your body the rest it needs. But at the same time don't use that as an excuse!

Nigel's Training Lore #10.
If you can design a figure of eight route it allows you to stop off at home half way round your ride which particularly in winter means you can warm up, change and go out again refuelled. It also means you're closer to home if you encounter any problems.

Nigel's Training Lore #11.
During a prolonged training campaign such as for something like London to Paris, there will inevitably be times when injuries get in the way. Don't fight through it, rest up, safe in the knowledge that overall you will cover the ground.

Nigel's Training Lore #12.
The Human body is capable of amazing things which dedication and determination can help bring to fruition.

A fitting way to end this post I think. Throughout all this, the most important thing has been to raise money for Bliss. The training has helped me prepare for this and to achieve something amazing.

Now it's time to kill the dragon.

ipadio: Nigel's phlog - 1st phonecast

2010-06-06T22:16:00.001+01:00

Early Taper

2010-06-06T21:15:00.003+01:00

After a very sore knee following the 80 miler last weekend I decided to take it easy this week. I did nothing all week (on the bike at least!) and then did 30 yesterday and 24 today, both without incident. I figure that after getting on for 3500 miles in training, missing a few miles at this stage shouldn't make much difference! Actually, the last two days felt really good. It's probably a bit late now given what I have in store in 9 days time, but I decided that only going out for around 2 hours is great! Compared to the 6-8 slogs over the last few weeks, it was great to go out, get some exercise and come back feeling as if I've done something without feeling shattered for the rest of the day! Indeed today I was back in time to join the rest of the family for coffee today - all very civilized.
So, 9 days to go. A couple of short commutes on Wednesday and Thursday, 20 miles or so next Sunday and that's it! Less than 50 miles left in training before we get to the start at Addenbrooke's hospital in Cambridge...

Nigel's Training Lore #11.
During a prolonged training campaign such as for something like London to Paris, there will inevitably be times when injuries get in the way. Don't fight through it, rest up, safe in the knowledge that overall you will cover the ground.

Training Update

2010-05-24T08:55:00.003+01:00

What beautiful weather! The cold, snow, ice and rain of the winter are quickly fading now, to be replaced with glorious sunshine and warm weather.

Did 90 miles last Sunday. And for the first time I did a figuure of eight route, so I stopped at home half way round for a cup of tea and snack. Why the hell didn't I do that in the winter?!! Ok so it was hard getting home knowing I had to go out again, but equally the fact I was refuelled in comfort made a big difference. What a difference it would have made to do that in the winter, allowing a change of lcothes and warmth before going out again. Oh well!

This weekend was back to back 60s. Actually 65 miles on Saturday, 60 on Sunday. Interestingly, Saturday was a slog whilst Sunday (despite being out at a dinner party on Saturday night and drinking too much) felt like I was flying! Slightly sore knee at the end but I was going pretty quick so that's to be expected. I had my small commute into work this morning with no ill effects.

Only 3 more significant rides before Paris...

Nigel's Training Lore #10.
If you can design a figure of eight route it allows you to stop off at home half way round your ride which particularly in winter means you can warm up, change and go out again refuelled. It also means you're closer to home if you encounter any problems.

I did it!

2010-05-09T21:27:00.004+01:00

7hrs45. 124 miles. A long old way. But I have managed to cycle from my mothers all the way home! The last 20 miles or so was a real slog and I need to rethink the idea of using a rucsac as my back was very sore, but overall, I got back in much better condition than last week after my 104 miler. So, that's the peak of my training. It's all downhill from here! Hopefully that doesn't mean silly injuries or other problems start here. 5 weeks training to go, including a couple of back to back weekends, and then the main event...

Before the off...

Yellow rape fields along the way

On the way to another milestone

2010-05-09T12:54:00.000+01:00

Over the last 7 or so months, the key objective has been Cambridge to Paris in about a month's time. In addition though, I have also had another target on the way- to cycle from my mother's house back home. A distance of around 120 miles. I am writing this (partly to check I can blog on the move ready for Paris!) Halfway home, somewhere near Oundle in Northants. It's a nice sunny day if a little windy and so far, so good. Legs are a little tired but hey, it's not meant to be easy! More later...
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X marks the spot. Pt IV.

2010-05-02T21:21:00.009+01:00

Finally, we reach the Labour party. As for the Conservatives previously, I should declare previous interactions with the Labour Party, having met the Health Minister Ann Keen MP and also attended a meeting of the Prime Ministers Strategy group.

That said, I received nothing from my local Labour candidate. I also contacted Ann Keen. I initially received an automated response requiring my full contact details etc. I then got another one that informed me

Where a reply is appropriate we aim to send one within 20 working days.

I received nothing - says it all, doesn't it?! Then, on 14 April (a full month after my email) I received a response from the Dept. Health. Helpfully, this response included the sentence

As you may know, the Department of Health is part of the Civil Service and does not represent any political party.

For information on the future policies of a party, you may wish to contact the party concerned.

Well that's useful - I thought I had done! So, no response from the Labour Party then. For what it's worth, the DoH response informed me that the Neonatal Taskforce has recently published its findings, and also pointed that that the BAPM (British Association for Perinatal Medicine) standards are recommendations not mandatory. So that's a get out of jail free card then!
Very disappointing.
So, what do we conclude from the responses received? They can be summarised as follows...

Green Party
Responded
Committed to 1:1 Care
Committed to better support for families

Liberal Democrats
Responded
Implied support for all of Bliss' manifesto points
Have signed up to support Bliss Manifesto

Conservatives
Responded
Previous good communication with party
No specific commitments

Labour
Didn't respond
Previous good communication with party
No specific commitments
Have signed up to support Bliss Manifesto

At the end of the day, there are many issues that you have to consider when deciding where to put your 'X'. Based on this (admittedly limited) survey however, your choices may be slightly more limited now...

Finally, a reminder that you can contact you local candidates to get their views on the Bliss Manifesto here.

X marks the spot. Pt III.

2010-05-02T21:06:00.002+01:00

So, on to the Conservatives. I received a letter from our sitting MP, Sir Alan Haselhurst. Straight off, I should say that Sir Alan has been a great supporter of us since before our son came out of home, contacting various MPs and senior NHS staff on behalf and attending both the Bliss events at the House of Commons that we have attended. His response to my email was as follows (again, edited for brevity by myself)...

To improve neonatal care the Conservatives will make sure that spending on maternity services keeps pace with birth rate
They will provide mothers with more information on the performance of maternity care providers
Tariff payments (funding to hospitals) will be based on performance, including reduction in perinatal mortality and mothers' positive experiences
Realistically Sir Alan recognised that he cannot pledge to support all causes due to the current budget deficit (but stated he would do his best on this particular cause)

So what is to be made of this? From a personal point of view I accept his pledge to continue to support neonatal care as I have observed in the past. In terms of specifics however, I am not sure that the points made will be that helpful. Firstly, keeping pace with the birth rate surely maintains the status quo (a charge I also levelled at the Liberals here), which as we all know is currently not good enough. Further, as the rate of premature births increases, funding based on birth rate will actually result in a drop in real terms in funding for neonatal care. In addition, whilst funding based on a reduction in mortality on the face of it sounds like a good thing, I wonder whether this may penalise those specialist units developing pioneering treatments on the very smallest or sickest of babies.

Coming up, the Labour party...

World Exclusive: Drowned Rat Cycles 100 Miles!!!

2010-05-02T20:58:00.003+01:00

What a day. It was torrential rain overnight (sufficient for us to have a power cut in the early hours) and was still pretty bad when I hit the road a little before 6.30am. It got worse and proceeded to rain for the entire trip of nearly 7 hours. I got a bit lost so called it a day before my original end point, but used a Tesco store as my turn around point. This allowed for hot chocolate, cake, a change of clothes and purchase of clean dry socks and carrier bags!
It's amazing how much rain and wind takes out of you and despite this being only 7 miles further than last week, I came back a wreck and with a sore hip. Hopefully a few days rest will sort that and I'll be ready for a good ride later in the week.
Going 100 miles is a landmark in its own right, but in addition, except for next week which is a bit different (I'm cycling home from my mothers, again around 100 miles or so) this represents the furthest I'll be going in training. It's scary to think I'm cycling to Paris next month!

A landmark! (104.26 miles)

X marks the spot. Pt two and a half

2010-05-01T21:19:00.002+01:00

Not quite the next candidate reply (I'll hopefully post that tomorrow), but a plea for support. In the last few days before election day, please help Bliss by getting your candidates to pledge support for the Bliss Baby Manifesto. In particular, By 2020 we want to see:

One to one nursing for all babies in intensive care
Access to round the clock specialist transport services in all areas
Better support for the families of special care babies

Please sign up here.

Training Update

2010-04-25T17:56:00.005+01:00

It's been a while since I posted an update, but fortunately I have continued to grind out the miles throughout that time. Two weeks ago I made it down to Maldon and back (86 miles) which was nice going out but a real slog coming back. I made the mistake of a long stretch along the A414. Not the prettiest, quietest, flattest or pot-hole-less-est road in Britain! Still, Maldon was a nice destination...

Essex Sunrise...

Artistic shot of Maldon :o)

That was followed by a 97 miler last weekend (up through Ely, Bury St Edmunds and Haverhill). I managed to pace this quite well and wasn't exactly fresh when I got back but felt better than I did the week before!

Finally this weekend I did back to back 50 milers and I'm sore but happy as I write this! It's not long since I cycled 50 miles for the first time, so doing back to back 50s is quite an achievement :o)

Also delighted to say that sponsorship has now gone through the £1500 mark. Next stop, two grand!

I have an enforced rest week this week as I am travelling but this might not be such a bad thing, with a 100 miler planned for next weekend...

Nigel's Training Lore #9.
A training program is a guide not a rulebook. Enforced rest and 'listening to your body' will help to give your body the rest it needs. But at the same time don't use that as an excuse!

X marks the spot. Pt II.

2010-04-24T21:27:00.005+01:00

So, the Liberal Democrats achieved the largest change in poll rating in UK polling history, and Gord' and Cam went from agreeing with Nick to agreeing with each other and opposing Nick. But what would have happened if neonatal services got more coverage in the election? As I explained in the previous blog entry, I have written to several representatives of the political parties both nationally and locally to find out. This time, the response of the Liberal Democrats...

The party believes in the need to safeguard NHS services and especially the specialist services such as neo natal care, which are at greater threat of cuts / reduction in services.
In addition to local services, the party also recognises the need for regional/ national centres of excellence to provide care for the sickest babies.
My local candidate stated that he strongly supported the very simple aims of Bliss and would campaign in Parliament to promote their views.

So, a less full response than the Greens, but this was a local response rather than national (Note: Nick Clegg also mentioned neonatal care in the first televised debate). Despite the shorter response however, it is interesting to see the mention of specialist centres. It feels like maintenance of the status quo rather than improvement and again no mention of funding. It is good to see promotion of Bliss within Parliament however.

Survival Rates

2010-04-22T08:04:00.002+01:00

There's an interesting piece of research just been published in the Archives of Disease in Childhood and reported on the BBC website looking at survival rates of very preemie babies. The research indicates that despite greater medical intervention and slightly longer survival time, the actual survival rates for babies born before 24 weeks has stayed essentially the same. For these pre-24 weekers, 20% survive, often with disabilities, and this despite increased levels of resuscitation and other interventions. This is in contrast to those born at 24 and 25 weeks where survival rates are continuing to increase.

Clearly this findings are important and interesting from a medical point of view. Equally they will no doubt be used in the abortion/pro-life politicking debate, the gestation times discussed coming as they do right around the abortion limit. Does this mean that we have reached the limit of what medicine can do for the most premature babies? That their organs simply cannot cope despite the very best medical care? Possibly. But my view is that such sweeping statements are dangerous certainly for policy making. As Andy Cole, Chief Executive of Bliss said in response to the work,

it is always important that these babies' treatment and care options are considered on an individual basis

In our experience of having a 26 weeker, we certainly had the ups and downs in his first few months but ultimately we have been incredibly lucky and he is surpassing our expectations (and moved into his own bed at the weekend!). At the same time, we saw the other side when parents of longer gestation (and even term) babies experienced complications and difficulties they never dreamt would affect their babies. They are truly individual little beings!

Published!

2010-04-17T21:59:00.002+01:00

Quick note to say that I am delighted to say I made the print version of Little Bliss magazine this month. Those of you who regularly read this blog will know about a post I did (here) regarding transfers a while ago. For those who have found me after the Little Bliss article, welcome!

X marks the spot

2010-04-17T21:29:00.003+01:00

So, the election campaign is in full swing. Politicians are wearing out their soles pounding pavements and trees are being cut down for leaflet after leaflet to be printed, put through your letter box and binned!

So apart from the fact that Gordon "Agrees with Nick", what else do we know? In order to determine the party line on neonatal care I wrote to the parties several weeks ago (finger on the pulse - I sensed an election was in the offing!) to ask. I wrote to the Health Secretary and Shadow Health Secretaries for the Conservative and Liberal Democrat parties, in addition to the Green Party national HQ. I also contacted my local candidates for Labour, Conservative and Liberal Democrat (Green hadn't declared theirs at the time). All contact was by email, with the same email sent to all contacts. So, what did they say? First the Greens...

I received a reply from the Green Party Leadership Office. This is an edited (for length, not meaning) version of that reply...

The Green Party believes that a comprehensive health service, free at the point of need and funded through taxation, is a fundamental citizen’s right.
They fully support the NHS Neonatal Taskforce report Toolkit for High Quality Neonatal Services published last November.
The Green party would provide the required investment to make up the shortfall of over 2700 nurses and 300 supporting therapists referred to in a recent Bliss newsletter (Ed: Annual Report?) and would make 1:1 nursing a priority for the next decade.
Also keen to support greater care and support for the mother post-natally.
The Green Party would also ensure neonatal capacity in the UK was improved to ensure that units were no longer crowded and overstretched and were not endangering the lives of babies.

So, all sounds pretty good doesn't it? At the risk of sounding like a politician, I guess one point is around funding. Ok, so they mention funding through taxation, but there isn't anything else is there?! It is great to see that they have clearly taken the time to read the Taskforce output and have taken onboard the key demands with respect to nursing levels and 1:1 nursing, but I guess the big question is how to pay for it?

Next time, the Liberal Democrats...

Weekly training update

2010-04-05T19:53:00.002+01:00

Funny old week this week. I cycled into work and back again on Thursday (round trip of around 36 miles) and hated it. I got off my bike Thursday night really questionning what I was doing. It was cold and windy (no change there!), it hurt (not for the first time), it felt like a struggle (again, not for the first time) and just wasn't enjoyable. I had Good Friday off and then because it fitted in better with Easter stuff, switched this week and next week, so did 40 miles on Saturday and 45 on Sunday. AND LOVED IT! What a difference a couple of days make. Ok, it was sunny and clear which helped, and I was on unfamiliar roads which added interest, but I was absolutely flying, despite Derbyshire hills on Saturday and reasonable hills on Sunday. 40 miles in less than 2.5 hours on Saturday, 45 miles in slightly over 2.5 hours on Sunday, and I enjoyed it! It just goes to show there's always another great ride around the corner!

Nigel's Training Lore #8.
Not all training rides will be great, but another good one is just around the corner.

New Preemie Book

2010-03-30T21:03:00.003+01:00

It's been a while since I blogged about preemie issues rather than the obsession of getting two bike wheels to go around as far as possible! My interest has in no way diminished, but my current focus clearly is about the ride and getting as much money as possible for Bliss.

That said, I do have one or two posts in the background - more of which later. In the meantime I am pleased to announce the publication of a new book which may be of interest. Written by Deb and Nicole, also behind the Preemie World site and blog, the book (as described on their website) is...

...taking a different view on supporting families who have just been exposed to the NICU. [The book takes] the preemie books of old to an all new level. Clear-spoken and from the heart, it’s a parent-to-parent must-have guide with tons of tips along the way. Conn and Discenza have created the essential hand-book to surviving the NICU.

The book can be purchased from the PreemieWorld website

We're getting there!

2010-03-28T20:08:00.001+01:00

After a week in the US where steppers and the occasional exercise bike was the extent of my training, it was good to get back on the roads today. 77.5 miles in 5 hours with glorious sunshine following me was the outcome. I have to say I write this feeling absolutely exhausted, but also encouraged by the fact that I am now only 10 miles or so short of the maximum distance on the C2P! Clearly the real challenge is doing it day after day, but knowing that the maximum is within sight is very encouraging.

Weekly Update

2010-03-22T07:00:00.001Z

Not much to report this week. We kind of settling into a routine now! Great weather (well, ok, it rained on Saturday), no punctures, lots of miles and another good week for sponsorship.

Did back to back 40 and 35 miles over the weekend.

I'm travelling again this week so will be restricted to hotel gyms for my exercise...

An eventful week!

2010-03-14T19:53:00.006Z

So, 3 punctures, breaking through the £1000 mark and another commercial sponsor on board. And that was all before the weekend!

Did a lovely 70 miler (71.3miles!) yesterday through Suffolk and Essex, including Clare, Cavendish, Sudbury and Castle Hedingham. Many thanks to the old boy on the gate at Castle Hedingham. It was closed for a wedding but he let me in for 5 minutes to have a break whilst I ate my power bar.

Hitting the Target

2010-03-11T20:53:00.003Z

I know I know, three entries in a day (something else that comes in threes!) but just wanted to say that after stating here that I wanted to hit a grand by the end of the week, I have done it!

Current total is £1004!! That's all I have to say.

Oh, and the fact that the second puncture didn't hold so I had to run and train-ride home. But that's another story.

Commercial Sponsor

2010-03-11T09:25:00.002Z

I have another commercial sponsor onboard! Many thanks to Glasswells, the furniture store for their donation. In the same way that I was delighted that my regular curry house made a donation a couple of weeks ago, I'm delighted that Glasswells have made a donation as we have bought all our carpets, wooden flooring and some furniture from them over the last 5 years or so. Many thanks to them!

If you look down there on the right hand side, I have now added a roll of honour for commercial sponsors, which you can use to clisk through to their websites. Do please support them - they have helped me!

The Rule of Threes Returns

2010-03-11T08:33:00.002Z

I'm a scientist, and a rational thinker. Homeopathy, acupuncture, the occult. All rubbish. But clearly there are some things that we just cannot explain. As Chappers wrote in her blog a week or so ago, things often happen in threes - with her getting three punctures in the space a of a few days. Doo then got to two punctures in a week. Last weekend, I repaired a puncture, and today, I had two on the way to work! So clearly the cycling Gods prefer punctures to come along in threes*! Good luck with that third puncture Doo!

Fortunately I was riding with my friend Tim this morning who was able to lend me a spare inner tube, otherwise I'd still be walking to work (thanks Tim!).

Nigel's Training Lore #7.
Your bike has two tyres, so taking two spare inner tubes with you makes a lot of sense!

*Ok, in reality my commuting bike had a small sharp stone in the tyre and I went down a pot hole giving me two punctures this morning so there is an explanation, but don't let that get in the way of a good story :o)

Weekly Update

2010-03-07T21:52:00.006Z

The sun has been shining all week! Still a bit chilly but what a difference it makes to have sun instead of sleet, ice, snow, rain, wind and everything else that seems to have been thrown at me since I started training!

For one of my mid-week rides I did my first ride from home to work this week as the daylight is just about enough (19 miles), and got the train back (6 miles to and from stations) which made a change and was enjoyable, and then did 67 miles today. In the end I didn't do the Audax as other things came up, but did a similar distance which was great. Instead I went up through Newmarket, Ely and Cambridge, so admittedly flat but hey, it all counts!

Ely Cathedral and blue sky!

Also pleasing to see that the sponsorship money is edging up, with nearly another £200 or so into the pot this week - with thanks to Eleanor for baking and hosting a coffee morning to help the funds. It would be great if this week sees the total smash through £1000.

And if that's not enough good news for the week, I have two very exciting preemie-linked blog posts planned over the next few weeks - watch this space!

Raining and pouring

2010-02-28T12:24:00.002Z

Weekly update

Back to backs at the weekend: 30 miles Saturday, 30 miles Sunday

Cold

Windy

Very very wet

Very miserable

100k Audax to look forward to next weekend!

Help Wanted - Update

2010-02-22T22:30:00.002Z

A while ago I posted about a couple of studies looking for help from parents of prems (and we all know how to determine if that's you!)

I have now been contacted again by Wendy Moncur at the University of Aberdeen who is running a study looking into communication of baby updates with friends and family:

What is this survey about?
When a baby is unwell in hospital, the right kind of support from close friends and family can reduce parents’ stress levels. We are developing a news system which allows parents to send personalised updates about a baby to their friends and relatives automatically by email or text message, to encourage friends and relatives to give support to the parents.
To get it right, we need the views of mums and dads like you. We want to know the kinds of messages that you think are most suitable to give to different people.

The study can be accessed here: http://www.abdn.ac.uk/websurveys/nicu/

Thank you!

When will Spring spring?!

2010-02-21T15:43:00.004Z

[Image from DailyMail.co.uk]

Did you not get this image as you peered out of the curtains this morning? No, me neither! Another cold, icy, desolate day with sleet and snow freezing all exposed skin and resulting in numb feet and pains shooting up my arms by the end of today's 55 miler. This is more like the views as I cycled through Cambs, Suffolk and Essex this morning:

If it's not snowing in Paris in June I'm not sure I'll cope! Sitting in the warm now, I am glad I made the trip; it's another 55 miles closer to Paris and I learnt something about both cold (freezer bags can help protect the feet from the cold - shame I only tried it at around 40 miles) and nutrition (pretzels and licorice - not together- work nicely, and I should have eaten something at 1.5 hours, 2.5 hours and 3.5 hours). It's also not been a bad week overall - over 100 miles in training, nearly £300 sponsorship including my first commercial sponsor and surely we must be close to spring springing!

Nigel's Training Lore #6.
Actually, real food (pretzels, licorice, bagels, cereal bars) may work just as well as energy bars and gels.

Transfers

2010-02-20T22:29:00.001Z

At the end of October, I wrote a brief entry about the Bliss Baby Charter, and said I'd return to it at a later date. Well just over 3 months after that, I guess this is a 'later date'!

For me, one of the burning issues in neonatal care is transfers, which is covered in Charter 3: Babies receive the nationally recommended level of specialist care in the nearest specialist unit to the baby's family home.

Within this, the charter requires trained specialist staff in multidisciplinary teams, near to home and operating consistently across a network. This isn't really too much to ask for is it? After all, it is pretty much what adults would also expect when they have a need for specialist medical care.

It is remarkable however, how often these objectives are not met. In particular, the provision of care 'near to home' is difficult for people to receive. There are many reasons why people are transferred, some quite legitimate, for example, transfers to a hospital that can provide higher levels of care, care for very premature babies or provide surgery.

Where things start to become unacceptable though is where it is purely a capacity issue and babies are transferred often many many miles from home simply because there is no cot closer to home. In a recent poll on the Bliss website (admittedly, this wasn't a scientifically rigorous study), nearly 20% of respondents were transferred between 50 and 100 miles, with more than 10% transferred over 100 miles. Some babies were transferred 140 milesor more, in one case 146 miles from Aberdeen to Glasgow, for a stay of 25 weeks! Even shorter transfers however can be traumatic, when it means a transfer further from home. Clearly the care of the preemie is paramount, and so where medical need dictates, transfers are fine. In other cases though, they risk:

Stress and other impact on the baby during transfer and change of surroundings
Transfer to a hospital where medical staff do not know the baby and its history as well
Less frequent visits by parents due to extra distance and less time at the cot-side
Less frequent visits by siblings
Less frequent visits by other friends and family
Stress to parents due to extra travel, unfamiliarity, less time with baby
Increased time that parents and other children are apart during visits to visit the preemie
Increased travel for already exhausted parents
Increased travel costs
Increased food costs, or poorer nutrition
Reduced opportunity to establish breastfeeding
Frustration with medical staff who don't know the background of the baby
The risk of subsequent out patient treatment being either at the same far flung hospital, split amongst several hospitals or simply lost 'between the cracks'
A new unit to become familiar with, and a change of routine

All this in what increasingly is being described as 'family centred care'! It often makes it worse when staff who have clearly seen it all before just don't see what the big deal is - to them it is just another day. There is also a point here about the consistent operation across networks. We know of families who managed to avoid transfer, and indeed there were respondents to the poll on the Bliss website who were able to beat the system. This isn't sour grapes and I'm genuinely pleased that people are able to stand up to the medical institution and overturn decisions, with babies that were on their way out being able to stay. There is also often poor communication on transfers, in terms of why they need to happen, how they will happen and also when they are likely to happen. Parents are often left feeling that they have no say in the decision. Ok, realistically they probably don't, but there is little discussion or communication with parents.

Finally, what must be the most stressful type of transfer is the multiple transfer, either being passed from pillar to post (and often back to the same post or another one!) or where multiple births are split up and sent their separate ways, often with mums still in-patients in hospital #1.

Clearly there are instances when transfers are absolutely necessary and all parents who are able to bring their baby home are enormously grateful, regardless of the distances travelled. But it would be good if transfers could be better planned, along the lines of the Bliss guidelines. Notably:

Better communication with parents about the reasons for a transfer
Transfers only when absolutely necessary for medical reasons
Recognition that within family centred care, the parents and siblings should also be considered in addition to the non-medical impact on the baby (ie stress)
Better communication with parents about the new hospital - car parking, visiting hours, NICU protocol (should you bring your own nappies, is there somewhere for valuables, when are ward rounds etc)
Recognition that whilst networks are a good idea in general, there are instance where people living on the boundaries will be transferred to a hospital further from home even if transferred back into their own network (ok, I sneaked that in from personal experience, but we can't be the only ones that happened to)

First Commercial Sponsor!!

2010-02-17T20:54:00.003Z

I have my first commercial sponsor! I spent the weekend writing letters to local companies explaining what I was doing and asking for sponsorship. I was reasonably selective about the companies I approached. I wanted to at least have heard of them, and ideally to have used their services in the past, the more the better really as I think it's important that this isn't just take take take. So, imagine my delight when the first company to respond was the best curry house in Saffron Walden, The Mogul! I frequent this reasonably regularly either for takeaways or nights out with the boys (good evening to CT United FC and the BBCC!!) and they already do a lot for local charity and local sports teams so it's great that they were happy to support me. They have also suggested I go back with a bucket on a Friday night to collect donations from the customers.

Many thanks to all at The Mogul, and I'll see you with CT United on Friday week!

A landmark!

2010-02-13T13:40:00.003Z

In the grand scheme of things, it's only just over half the distance of the furthest ride we'll be doing on C2P. Today however, was somewhat of a landmark in that I did 50 miles for the first time. Actually, I had to divert because a road was closed, so it was more like 57 miles. Quite a nice route in rural Essex, Dunmow, Hatfield Heath, back up through Harlow and Stortford before a diversion around Stansted and on home. My legs feel pretty shot, but it has been a great week's training, with around 110 miles covered.

I set off today in cold but dry and bright conditions, experienced sleet and came back under grey skies. Overall the weather wasn't as bad as it has been - perhaps nicer weather is just around the corner..?

Nigel's Training Lore #5.
Not all gels and bars are born the same.Try them in training so you don't find out you don't like them/they don't agree with you during your real event!

[I tried a new brand today and suffice to say they were horrible! I'll be sticking to the ones I know in future!]

Cake a Difference

2010-02-09T21:57:00.005Z

You may be aware that this week is Cake a Difference week. Each year Bliss does some fundraising around Valentines Day, normally 'Kiss for Bliss'. This year, it is Cake a Difference. I write this as my last batch of cakes are cooling prior to being iced up and sold at work tomorrow, all proceeds to Bliss, via my cycle fund.

Go on, you know you want to!

[UPDATE: £50 raised. Thanks all!]

Prevention and cause

2010-02-08T22:10:00.004Z

Recent news reports stories have reported on both the causes and prevention of prematurity.

Firstly, the causes. The causes of prematurity are not well understood with multiple factors thought responsible. For example this paper suggested infection, vascular disease, maternal BMI, cervical length and previous history of premature births could all be risk factors. Equally, another paper recently reported no evidence for the efficacy of antibiotics as preventatives for premature birth. As reported by the BBC news, and a host of other news sources, however, recent work has strengthened the case for infection playing a vital role in prematurity. Following on from research undertaken by Imperial College London last year which found a link between a protein that causes inflammation in response to infection and prematurity, a group at the National Institute of Health in the US has now linked a particular gene to the story too. After studying the genes of woman and babies in Chile, the researchers have identified genes that are found in proportionately higher numbers in women and babies experiencing premature birth. The genes are linked to inflammation as a result of infection and from a evolutionary point of view are thought to be involved in life preservation (particularly from the point of view of the mother) when infection is present. The next step is to now develop tests to identify the presence of the gene (or protein) in order to pre-empt the inset of premature birth. Further down the line, perhaps even intervention to prevent the inflammatory response could lead to reduction in the likelihood of premature birth.

Closer to coming to fruition as a preventative approach, maybe, researchers at Yale have also recently reported that the use of progesterone can reduce the likelihood of premature birth.Working on the hypothesis that many premature births are a result of premature rupture of the foetal membranes, the researchers have determined that progestrone is able to reduce the rupture and thus potentially could reduce premature birth. Whilst still being explored in the lab, this is nevertheless an interesting piece of research.

Another recent report on work also funded by the NIH reported that Vitamin D could help to reduce the occurence of premature births. The study investigated the rate of early births between a high vitamin D dose group and a control group taking more like the current recommended dose of vitamin D. Premature births in the high vitamin D group were less than half that of the control group.

Please note: This blog does not suggest all expectant mothers should rush out and consume large quantities of vitamin D - please see your doctor!

A good week

2010-02-07T22:12:00.002Z

Despite being the US again this week I managed to get some pretty good training in. I managed a twenty miler on Tuesday before I went, a few miles on the treadmill to get the flight out of my legs on Wednesday night (about 1am GMT!) and 12 miles on a LifeCycle on Thursday morning.

This was then the first week of back to back rides on Saturday-Sunday, with 22 miles on Saturday followed by 34 on Sunday. Being away in Derby for the weekend allowed a change of scenery, with a circular route out to the town where I went to school on Saturday and an out and back into Derbyshire on Sunday.

We reach a milestone this coming weekend, with a 50 miler planned..!

An icy slog

2010-01-31T16:50:00.002Z

My heart sank when I awoke to snow again yesterday. Snow + ice + Nigel on a bike = another crash! But not today, thankfully. After my last two crashes, today was the first time I didn't fancy it. It was cold, icy and I had 45 miles to get through!

As it turned out, it was a great ride. A little tentative in places where it was still icy, but a nice route around Essex, through Cambridge city and back out into rural Suffolk and Essex. With the slight wrong turning it came out at 46 miles, and took 3 hrs. I also managed to finish feeling much better than I did last week, with a combination of a couple of gels and a bar bringing me home. Feeling tired now, but hey, I just rode 46 miles! Each new distance is the furthest I ever cycled now, with 50 miles the target in a couple of weeks...

Weekly training update

2010-01-24T18:21:00.004Z

I don't often talk about my midweek rides as they are typically either just to work or a quick jaunt locally. A two day training course based at the historic Wadenhoe House however, gave me a great chance for a change of scenery.

6.30am. It was cold, misty/drizzling and very very dark. As I set off from the tiny Northamptonshire village, the only light source was the silver disk of light thrown off from my headlight. Very quickly though my senses adapted and it was a truly enjoyable ride! It is amazing how quicky your senses adapt to the surroundings, and as I passed through Oundle, which was a relative hive of activity with streetlights, people and cars, it was almost an assualt on my senses! I passed through quickly and continued on my way, as far I think as Polebrook, around 14 mile round trip, arriving back as it was just getting light.

My long ride this weekend was much less eventful than last weeks epic! 40 miles through Essex in around 2.5 hours. All went fine until the last 30 minutes or so when my legs started to feel really shattered, a case of insufficient energy on-board I think.

Nigel's Training Lore #4.
Over 2 or so hours in the saddle burns lots of energy - ensure you take on extra in the form of bars, gels or drinks.

Book review

2010-01-24T18:16:00.003Z

I've just finished reading a great book which may be of interest. Discovery Road, by Tim Garratt and Andy Brown tells the story of their trip across the southern hemisphere continents of Australia, Africa and South America. It's a great read, with a very relaxed style taking the reader through the build up of the adventure (why a teacher and successful city boy felt the need to chuck it all in and go around the world on two wheels) and the trials and tribulations the encountered during the trip.

The book isn't just a list of countries successfully ticked off however, or a handbook for cycling geeks. The authors (who take in turns to narrate a chapter) discuss the history and background of the places they visit, describe the people they meet and combine it all with a sense of humour that keeps the story moving. What come across powerfully is the humility of the two riders. The ride was done for Practical Action, a charity involved with projects in Africa and Latin America (amongst other locations), and the lads did divert to go and visit one of the projects. They also see themselves as two ordinary guys who nevertheless did a very extraordinary thing.

The book is a great motivator to get you out and get some miles in, and also did a great job of summarizing the authors philosophy, which also sums up very nicely why it is that I and my wife continue to be active for Bliss...

In fairy tales there is always a call to action, the hero responds and overcomes all obstacles to bring benefit to him or herself and to the wider community. The dragon is killed, the town is saved, the Princess won.

This is your call to action.

I urge you to get out there in your world. Take responsibility for life. Take action. Have real experiences. Make lasting difference to at least one person. Create change. Kill the dragon.

Reprinted from Discovery Road, published by Eye Books. If I am not allowed to put that up here, please let me know and I will happily remove it.

Reality check

2010-01-19T21:32:00.005Z

It's time for a reality check. Everyone who has experienced life in the NICU with a premature baby knows about the frustrations...insufficient staff...transfers miles from home...concerns over the state of the equipment...getting the correct medication at the correct time...I needn't go on. It all pales into insignificance though, when premature baby care in the developing world is considered. Currently in Haiti for example (as of Jan 17th), there appeared to be one hospital only. Setup by Israeli aid, the hospital does include incubators for preemies, but clearly the facilities are limited. [Update: 20th Jan. Haaretz.com is reporting the delivery of a preemie in Haiti by Israeli medical staff, in addition to the treatment of another sick baby]

The March of Dimes has donated $100 000 to UNICEF for mothers and babies in Haiti.

Even without terrible earthquakes, the developing world is a bad place to be a preemie. A recent report by the March of Dimes and WHO estimates that 13 million premature babies are born each year. An astonishing 11 million of them in Asia and Africa - compared to around half a million in each of the USA (incl. Canada) and Europe. Globally, the rate of premature births is increasing (reasons are not entirely clear, but include assisted reproduction, increased age of mothers, earlier Caesarians and in Africa, the lack of drugs to treat infection during pregnancy and drugs to prolong pregnancies), and starts at a higher rate in Africa (approx. 12% of all births, compared with 6% in Europe).

Perhaps not surprisingly, in addition to the higher rate of premature births, survival rates are lower in developing countries, partly due to the greater prevalence in general of diseases such as malaria, but also due to the lower levels of care available. For example, as reported in the East African paper, whilst babies born at 32 weeks in developed countries stand almost as good a chance as term babies of survival, those in the developing world stand little chance of survival.

As I have said many times on this blog, we are incredibly lucky. We had a premature baby born in the UK, endured a 3 month 'nightmare' in the NICU of two well equipped (by global standards) hospitals and brought home our little fella close to his due date. He will always be a preemie, but on the whole, he is now a happy little 2 year old boy and gradually is leaving consultants behind. I know others aren't so lucky and you truly have my admiration for how you continue to cope. In the grand scheme of things though, the NHS or the US health system doesn't do bad.

Interesting website

2010-01-19T21:22:00.004Z

Just wanted to pass on details of a website I've come across. PreemieWorld is run by two mothers who have a passion for supporting parents through the NICU and beyond. In addition to blogs, the website contains a store from which to buy various thermometers (eg for the forehead, bath, bedroom etc), immunization charts and others. The most recent addition is a book (The Preemie Parent’s Survival Guide to the NICU: How to Maintain Your Sanity & Create a New Normal) as well as a DVD called Little Man about the son of one of the site's owners, Nicole. Not sure if the DVD is available in UK compatible format, but thought I'd pass on the details...

Not again!

2010-01-17T21:01:00.007Z

What a lovely day!

Clear blue skies...bike back from the shop after its first service...wounds healing nicely...a weeks worth of commuting behind me to start me back to fitness...all set for a nice 30 miler to get things going again. 1 mile in, over a humpback bridge and BANG, sliding down the other side using my ahem, bottom as a brake. Again. It was so icy that I had to crawl to the pavement to even be able to stand up again. It's kind of funny now (although the wounds aren't), but as I was setting off again, two cyclists came the other way. I warned them, they went slowly, reached the top of the bridge and BANG, sliding down the other side...you get the picture. They also couldn't stand up until crawling to the side.

The fun didn't end there. Not thinking what I was doing as I set off again, I went the wrong way and did an extra 6 miles! I did think it didn't look familiar. It was the 'no through road' sign that finally gave it away.

Back on the right road I was going along nicely, enjoying the scenery:

Great Chishill Windmill

...when coming down a hill a car pulled out in front of me without looking and I nearly ended up down again. I can't repeat the choice words I used! Finally got home bloodied and battered, but having completed the distance. One things for sure, I am earning every penny of sponsorship money I get! Yes, that is a hint...

Not all doom and gloom though. There were several positives to come out of today...

I was back on my shiny bike for the first time since falling off
I was back on my shiny bike for the first time since falling off again
It was a really beautiful day with great views
Getting lost put 6.5 miles onto the route and apart from the pain from falling off, actually felt really good, so I am in a better place than I thought after the recent lay offs. I will up the distance for next week

Enough's enough!

2010-01-10T21:18:00.002Z

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.

You know...pt.2.

2010-01-07T21:05:00.001Z

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!

2010-01-07T20:30:00.002Z

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

Crash and Burn

2010-01-05T20:04:00.006Z

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!

Last long one of the year

2009-12-29T21:00:00.002Z

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...

2009-12-22T12:31:00.018Z

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.

Christmas Cheer

2009-12-21T22:00:00.005Z

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!

2009-12-21T21:51:00.004Z

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

2009-12-06T17:14:00.003Z

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

2009-12-04T22:26:00.003Z

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

2009-11-29T13:13:00.004Z

Easy week this week.

More wind. More rain.

20 miles closer to Paris. 'Nuff said.

Keep up to date!

2009-11-25T23:10:00.003Z

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!

2009-11-25T15:32:00.006Z

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

2009-11-22T17:52:00.004Z

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?

2009-11-19T22:51:00.003Z

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

2009-11-16T21:30:00.007Z

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

2009-11-16T18:30:00.004Z

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...

2009-11-15T19:54:00.002Z

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

2009-11-15T19:10:00.008Z

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

2009-11-14T10:07:00.004Z

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!

2009-11-13T08:54:00.006Z

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

2009-11-09T23:43:00.008Z

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

2009-11-08T20:03:00.005Z

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

2009-11-06T11:31:00.002Z

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

2009-11-04T21:58:00.004Z

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!

2009-11-01T11:04:00.007Z

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

2009-10-31T20:55:00.006Z

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...

2009-10-28T22:43:00.004Z

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!

2009-10-28T22:30:00.004Z

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...

Welcome

2008-06-27T23:45:00.000+01:00

Hi!

Welcome to my place on the web. Not much to see at the moment, but give me a chance!

This blog will be all about parenting a preemie, but also is intended to offer information and support for raising awareness of the issues that affect preemies and their parents.

Please check back often and I'll do my best to add more to it as soon as I can, but as those of you with a preemie (or even young children!) will appreciate, it's not always easy to do things when you say, even with the best laid plans...!

Best,

Nigel