New Magazine Column

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

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

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

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

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

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

Good luck!

[Little Bliss, Spring 2010]

Published!

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!

Cake a Difference

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!]

You know...pt.2.

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

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

1. ...you're concerned that a large poo will result in a loss in weight that night
2. ..you can't remember what day of the week it is, but you know exactly how many days old your baby is
3. ...the doll carried by a little girl is larger than your baby
4. ...you add olive oil or double cream to every meal
5. ...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
6. ...the first and last thing you do in the day is ring the hospital
7. ...you know the number of the unit off by heart
8. ...you find yourself looking at other little babies thinking yours was never that small, was it??
9. ...you look back at their photos and still cry over a year down the line
10. ...you have an answer to everything that people will ask
11. ...you go out with the rain cover on even when its not raining
12. ...you start using their corrected age to stop people asking questions,
13. ...you hear beeping even when you're asleep
14. ...you have read a lifetime of magazines in a matter of weeks
15. ...you get overly excited about weigh ins
16. ...the unit is on your christmas card list
17. ...you talk about poo more than normal
18. ...the staff phone you worried if you've not called at your usual time
19. ...a month after discharge you're still changing your baby from the side
20. ...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
21. ...sats of 92 are considered excellent, despite what nurses at Paed wards think
22. ...the names and phone numbers of all the agencies involved are typed up and taped to the kitchen boiler for all those phone calls
23. ...you have to get a trolley in Boots to pick up prescriptions
24. ...every achievement your preemie makes is so much more precious, you celebrate them breathing independently, eating lumps and learning to sign
25. ...you take a vomit bowl everywhere you go cos reflux hounds you!!!!
26. ...you correct the new resident's medical update at the discharge meeting
27. ...your baby's red book notes section is full up
28. ...you actually envy mothers with stories of big babies and resulting tears!
29. ...you have spent your own money on home alarms you don't actually need because you can't imagine your baby "unplugged"
30. ....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?"
31. ...the space under your stairs is not filled with shoes and a hoover but oxygen cylinders.
32. ...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
33. ...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.
34. ...you have their drugs chart pinned to the front of the fridge so you know what's left to give in the next 24 hours

And finally...

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

Thanks a million everyone.

Join my Experiment!

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

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

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

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

Hi,

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

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

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

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

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

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

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

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

With heartfelt thanks,

Nigel Bailey
January 2010

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

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

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

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

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

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

Digest

I always go away on business with the greatest of intentions - I'm going to get loads of reading done, catch up on lots of work and do all the other things I don't normally have time to do like a couple of blog posts. It never works like that! The 'here and now' always takes over and before you know it you're sat in the lounge waiting for the plane home.

As such, here are a couple of things that caught my eye over the last week or so that I would have liked to blog about, if only I had the time...

Fundraising

Great news is that the Telegraph has decided that Bliss will be its Christmas Charity for this year. This article discusses that it is 30 years since the Telegraph originally reported on the plight of the UK's premature babies. As a result, several letters in response later and a new charity, Bliss was formed. The article goes on to discuss the issues that are regularly discussed here (e.g. this one). Go ahead and donate to a great campaign. Or even better, donate via my site and help me get to Paris!

Research

Interesting research out of Boston Children's Hospital. Researchers have determined that stem cells from bone marrow may reduce inflammation in the lungs of preemies, and reduce the impact of chronic lung disease. CLD effects many preemies who spend a long time on either a ventilator or other breathing support such as CPAP. It can lead to longer term requirements for oxygen on coming home and issues with lung health as they grow, including increased risk of bronchiolitis or other breathing complaints. As a result of spending two months or so on CPAP, our little fella has CLD although a relatively mild version. He was still hospitalized on his first Christmas Day with bronchiolitis, but does not need oxygen at home. What is does mean is that is he gets a cold and it typically knocks him out more than a 'regular' child as it goes onto his chest. From mild cases like Eoin through to those who require oxygen support at home, anything that can help has got to be good news. This may be the next push since surfactant and steroids were developed to give premature babies as much chance as possible despite having such immature lungs.

Welsh care

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

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

Getting Chilly

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

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

A memorable day

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

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

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

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

The family on the veranda at the House of Lords!

Busy time for Bliss

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

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

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

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

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

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

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

6. Promotion and encouragement of breastfeeding.

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

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

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