ONE - But We're Not the Same

I have been asked by the inspirational Michelle at Mummy from the Heart to lend my voice to the ONE campaign. I've seen the buzz on the social networks, but had no idea where to start. Sometimes, the problem does seem too big, what can I do?

And I feel guilty. I have the seeds of a post on survivor guilt running through my head but they haven't come out on to the screen yet. But looking at tiny children in third world countries who are on the brink of death just makes me feel such deep grief and guilt.

Why is this? I remember when Joseph was about to be born one of the doctors sat by my bed to keep me company, whilst Corey went and rang relatives and organised things for us and our new, very tiny baby. He looked at me full of compassion and said "you look so calm, you sound so positive, things are really bad you know". And I smiled. I said to him "I am lucky. I could live in Somalia, or the Sudan, or the Congo, or Burkina Faso. I could be dying with no one to help me, no surgeons, no drugs, nothing. There would be no NICU. I wouldn't have a hope of survival let alone bringing a baby home". He left in tears.

And that is the stark reality. I am here because of absolutely fantastic medical care. Joseph was never classed as failure to thrive as we had a team of doctors one step ahead of his inability to gain weight at their required rate. He went from strength to strength under their expert guidance. I had support and help too, even though at times I felt it was inadequate, compared to a lot of mothers, I had it in bucketloads.

I feel guilty and sad that if I had been born in a poor country in Africa, things would have been different. 

So what am I askng you to do? I am not asking you to give money. I am asking you to support an organisation called ONE. ONE are ramping up the action ahead of the G8 summit next month.

The campaign is called Thrive: Food, Farming, Future

The key aims of the Thrive campaign are that by 2015 -

• We could see 15 million fewer children chronically malnourished and 
• 50 million people lifted out of extreme poverty 

The problem is to big for me to make a difference, alone, but together we can have our voices heard. We can affect change.

Please read Michelle's post and look at the other ways you can help.

Fragile Beginnings - Discoveries and Triumphs in the Newborn ICU - A Book Review

I was recently contacted by Beacon Press, who asked if I would like to review Fragile Beginnings - Discoveries and Triumphs in the Newborn ICU by Adam Wolfberg MD.

I will be honest and say that I approached the book with some trepidation at first. I am "just a mum" of a premature baby. I don't have medical training, although I find the medical world fascinating. I did think this book would be out of my reach somewhat.

I received a very pleasant surprise. Whilst Adam Wolfberg MD is a specialist in high risk obstetrics, this book is, essentially, a father's story. His third child, Larissa, was born at 26 weeks gestation, his wife Kelly going into premature labor. The book starts with their dramatic and startling story. I was transported right into the operating room with Kelly and Adam as they welcomed their daughter into the world, my heart in my mouth as the c-section is described in minute detail.

We follow Larissa's journey. Larissa had a brain bleed an IVH Intraventicular Hemorrhage grade IV, the most severe of brain bleeds. Dr Wolfberg had done some research into brain bleeds and premature babies and knew that Larissa's condition could be very grave indeed. The book explores the world of paediatric neurology juxtaposed against Larissa's story.

Whilst descriptions and explanations do get technical, you get the sense the Dr Wolfberg is explaining it to you as he would a parent, in detail, but with layman's terms explanations. I felt that I gained a much better understanding of this common complication of prematurity.

Dr Wolfberg goes on to talk about the discoveries and advances in both neonatal care in general and neonatal neurology in particular. He also goes into great detail about plasticity, the ability of the brain to compensate for what has been damaged, research into this field is very much ongoing and a work in progress.

Perhaps the most valuable, but most difficult section of the book is Chapter 6, Whose Choice which talks a lot about who makes decisions about what actions to take when a baby is born prematurely, and spends a great deal of time and care explaining the moral and ethical decisions made by doctors and parents in a complex legal environment, laws in the States being different, and to my mind, more complex than the UK.

I found this book incredibly valuable as a parent, to deepen my understanding of how neonatal care has developed, and is still developing.

On a personal level, this book reinforced just how fortunate and blessed we are with Joseph, whose journey in NICU, although 5 days longer than Larissa's was uncomplicated in many ways.

I don't want to spoil the book, but Dr Wolfberg follows through Larissa's story up until the present day, she is now 9 years old.

I would highly recommend this book to parents. It is life affirming, and a celebration of premature babies, their doctors, nurses and ultimately their parents.

Fragile Beginnings
Adam Wolfberg MD

February 7 2012

Health/Medicine
Hardcover
ISBN 978-0-8070-1160-7
Available on Amazon UK

This evening 11th April at 7pm GMT (2pm EDT) there is a March of Dimes #pregnancychat on Twitter. Adam Wolfberg MD will be joining in talking about the risks of preterm birth, from both his perspective as a clinican and a parent. I intend to be there so I hope to see some of you tweeting with the hashtag #pregnancychat

The Naughty Corner - Why I don't Use It

Like many people, I have, on occasion watched Supernanny. I have to admit, the first few times I saw it, I thought it was a spoof! Surely pitting parents against their children in a battle of wills with a perfectly dressed but ill-advised so called Supernanny was a joke? I'm no child behaviour expert, but I have 20 years experience with special needs childrens and adults, and the way she was advising these parents to treat their small children, particularly those under 5 appalled me. She broke every rule I have ever been taught.

On one of my parenting forums a few of the parents can spend up to 45 minutes forcing their children to stay on a "naughty step" for up to 2 minutes. The "wisdom" from Supernanny and her ilk is that a child spends as many minutes on the step as they are old, so 2 minutes for 2 years old, 3 minutes for 3 years old etc. Every time they get up, you put them back. To me this is restraint, and if you did it on an adult say with learning disabilities you could be prosecuted!

I do think there is a role for "time out" but not naughty steps and spots and chairs. I take Joseph out of situations. The picture above was taken in Germany at Christmas time. Joseph was over stimulated, over tired and generally grumpy. His grandparents were inadvertantly making things worse by making things confrontational, so I scooped him up into his pram and took him to the park to blow off steam. I have been known to open the door into the garden and give him a football if he is in a rage. Far better to kick a football than me. Redirection is key.

I am reassured that I am not the only person who feels the way I do about the naughty step, you can read more here and here.

Here are my reasons:

Labelling - If you label a child enough times, they will end up reacting to type. If you put a child on a "naughty" step or chair or spot they will start thinking that are naughty and will behave to type thus making their behaviour worse.

Attention giving - children love attention and quite rightly too. If they are not given enough attention they will behave badly to ensure this attention is given, even if its to spend 45 minutes battling over a step. Why not put a stop to this and give loads of positive attention? To me 45 minutes is a waste of everyone's energy.

Objectifying behaviour - If you label a certain activitiy as naughty, say throwing food, the child may then throw food just to get on the naughty step to watch mum and/or dad getting increasingly stressed over trying to control that behaviour.

Withdrawal of love is just wrong - Like it or not, the "naughty step" is a withdrawal of love technique, and I think sends a deeper message. "I don't love you unconditionally, I only love you when you do the right thing. I have seen a key point of the naughty step is to get the child to then apologise and give you a hug. I just think this is wrong. You've forced the child out of the situation, enforced your will to make them sit on a step for 2-4 minutes, and now you want a hug?

There are oodles of positive parenting techniques that work with toddlers. Joseph is, for the most part, a very lovely, well behaved little boy. But he's a toddler. His understanding of the world is limited and at times he rages against it. We learn, as adults, to control our rage, but toddlers act on wild, pure emotion.

Getting to a child's level, speaking gently, redirecting them to a more positive activity, to me is a far more worthwhile process than battling over a naughty step.

I love this quote from Alfie Kohn

I discovered some disconcerting research on the damaging effects of techniques like the “naughty corner” (better known as time-out), which are basically forms of love withdrawal. I also found quite a bit of evidence that parents who refrain from excessive control and rely instead on warmth and reason are more likely to have children who do what they’re asked – and who grow into responsible, compassionate, healthy people. 

I don't want a child who is frightened of me, living in fear of being placed on a naughty step. I want a child who is happy, confident and knows right from wrong. My method may not bring spectacular, immediate results that look good on television, but I am confident I am doing the right thing for Joseph by eschewing this horrible method.

 

The Importance of Milk Donation

On Easter Sunday this amazing article was published in the Daily Mail. The Daily Mail, bless it, is not always known for being supportive of breastfeeding and this article was just lovely, and explains so clearly why donated milk is so vital for premature babies.

When a baby is born prematurely, many mothers can only express tiny drops of milk, however a premature baby needs volumes of milk straight away beyond what many mothers can express initially. A NICU has two options, use formula, or use donated breast milk.

Formula for very early babies has been shown to be implicated in NEC, necrolitising enterocolities, as the baby's gut is not ready to process its complex make up. I'm not dissing formula in any way at all, and most of my readers will know that Joseph was formula fed from the time he was term until the age of one.

Kylie expressing on the unit with my friend Medusa the Medela pump!

In our unit, donated milk was not available, there was no milk bank. So when my supply dipped I had no option but to put Joseph on formula, which made me very sad. If donated milk had been available I would not have hesitated to use it.

In the UK milk banking is confusing, there are seperate milk banks dotted around the country, so again we see that there is a post code lottery when it comes to whether your baby will be offered donated milk at all. I've been looking at the United Kingdom Association of Milk Banking website, to find out more.

UKAMB have some tips for mothers who need donated milk, and also have a campaigning section on their website.

I think the key is raising awareness of the importance of donated milk, and mothers offering to donate, and parents requesting donated milk for their baby, if its needed. Neonatal units in hospitals where there is no milk bank need to know of the importance of donated milk and need mothers like us to ask for it, whether its to donate or to use it. I have heard too many sad stories of milk being dumped when there is over supply, and that milk could be used.

Before a mother donates milk they are screened via a blood test and an extensive questionnaire. Mothers usually can only donate if they are feeding babies under 6 months of age, as "newborn" milk is more appropriate for a premature baby's needs. Donated milk is then pasteurised to ensure it is safe for premature babies.

Donated milk is safe. I had to laugh at a comment on the Daily Mail article (yes, I know, reading Daily Mail reader's comments is bad for the blood pressure)

sick, the thought of someone elses breastmilk being given to my baby gives me the creeps

To me, giving a tiny little baby milk from a cow gives me the creeps! How can milk from another species be right, again I remind you that Joseph was formula fed, so I am not anti formula and totally accept that breastfeeding is not always possible, no one knows that more than me.

If your baby is on a neonatal unit and you are unable to express enough, then ask for donated milk. If you are a mum who is currently breastfeeding, consider donating your milk.

And to finish, I really want you to read this, although sad beyond measure, this mother's story is truly inspirational.

For more information on milk donation and getting involved visit the UKAMB website.

Easter Sunday

Today we had special visitors, Katherine, Little bit and Mr PinkWellies from Mummy Pinkwellies and Sim from Sim's Life.

Lunch was lovely, and it was nice to have a traditional mummy's kitchen natter whilst the kids and dads ate away from us putting the world to rights. I learnt for the first time that Katherine had first read my blog when her little girl was in NICU, which I found really fascinating, and she said she found it reassuring, which makes me so happy. Her little girl is just amazing, and was very confidently marching about our house!

Here are a couple of snaps!

Simnel cake

Lemon cupcakes and chocolate peanut butter cupcakes

Beautiful flowers from the Pinkwellies family

A very tried little boy

Good Friday

This morning started with snuggles on the sofa. Joseph has been extra snuggly this week, since I broke him. I can't believe I broke the toddler. It happened on Tuesday. He got his hand caught in the hinge of the bathroom door. His little fingernail came right off. It was heart breaking. He's still a bit tender, but it seems to be healing well. I hope it grows back soon.

I have been busy cooking and preparing for Easter Sunday, I have a night shift tonight then will sleep in the morning and do some more organising in the afternoon. Look what I made! I did intend it to be a joint project but Joseph wasn't interested. He has enjoyed eating the "glitter biscuits".

We used this recipe which worked really well. The lovely cutters are from Lakeland.

I'm hoping to get a simnel cake made. I finally decided on making a lamb souvlaki type dish for Easter Sunday, as we don't have enough tables and seats, it will be like an indoor picnic, unless the sun starts to shine, then we can head outdoors!

What are you up to this Easter holiday?

No Room at the Inn - the Heartbreak of Neonatal Transfers

A lot of my friends have been affected deeply with their babies being transferred out to other hospitals, often a long way from home. I have asked Leanna from Diary of a Premmy Mum to share her experiences. Thank you Leanna, and your post is very enlightening as much as it is heartbreaking.
 
When Kylie asked me to write a post about Neonatal transfers, the very first thought that occurred to me was 'Am I actually allowed to rant on somebody elses blog? ' - Because if there's one thing that gets me all hot under the collar you see, it's the state of the Neonatal cot space provision in the U.K today.

Just like Joseph, Smidge weighed a teeny 1lb 7oz at birth and required very specialist care. Now don't get me wrong, I wouldn't change the care she received in those early weeks for all the tea and china, I just wish we didn't have to travel 150 miles, stay in four different hospitals and endure five hospital transfers, that's all.

I will never forget those hours in the ambulance across the ice and snow, just a midwife and me and a very squished up Smidge, who had lost all her waters. One day hubby travelled in the car behind, having thrown a duvet and some clothes on the back seat whilst our oldest son Mr. G was temporarily sent to stay with granny by the sea. We had no idea that we were going to be stuck in this unlikely location for over two months.

Typically Luckilly, One-day hubby didn't forget his lap top, which meant he could work from a distance. And, despite many failed attempts to piggy back the hospital wi-fi system, mobile internet was our salvation and he carried right on developing software in the NICU waiting room, just meters away from a battling baby Smidge- That's the finances taken care of then.

Astonishingly, the company he worked for supported this bizarre set up...but I'm not sure all employers would be quite so understanding.

Seventeen days in to our journey,( after the record breaking snow fall finally subsided,) Mr. G joined us, accompanied by our rather exuberant German shepherd, 'Ruby-dog' and One- day Hubby further extended his role. He became a super dad. Yes, he was a software-developing, nicu visiting, home educating, dog walking, some-day wife proper-upper, paying out expenses on two different properties, a financial predicament we are still recovering from to this day.

But as we settled in to our temporary house, Smidge decided it was time to remind everyone that she was in fact a preemie and like most preemies she was somewhat unimpressed with the make- shift womb. A speedy deterioration followed the diagnosis of NEC and she was promptly wheeled into the back of an ambulance for an emergency transfer to a surgical unit.

It was a very low point for One-day hubby and I. Neither of us wanted to leave her side, but poor old Mr. G was beyond bored and despite our attempts to occupy him with numerous new nintendo games,no amount of gadgetry was going to make up for his missing friends and family who were hours and hours away from us.

The surgical hospital was busy. The atmosphere resembled that of Paddington Station. No time for tea and sympathy, Two in, one out...there were lives to save and parents just had to get on with it. The bold primary colour theme was a far cry from the cool shades of blue and lavender at the level three unit, which in contrast seemed like a tranquility of oasis.

Smidge must have heard the surgeons plotting, as she swiftly made a recovery with the help of ye old favourites, the much loved red bag (drip feed) and the bootiful antibiotics.

We'd been trying to get her to tolerate milk for two months by this point, but each time we tried her with the freshly squeezed boobie juice, she would abruptly reject it in favour of the former. I guess she just loved that drip feed more than anything else.

On the plus side at least the surgical hospital would be able to get her feeding properly established, then if anything goes wrong... she'll be in the best place, right?

Wrong. Her bed space was already lined up for another sick baby, and a still unwell and food intolerant Smidge was sent right back to where she came from, the 'assesment' incomplete.

Back at the level three unit, the doctors ummed and ahhed and poked and prodded and a week later they came to me with the 'good news' that Smidge could be transferred to a unit closer to home.

'But feeding has not yet been fully established' came a small voice from me, the parent.

'We know but, we have to make room for our local Mums or, in a sense we will end up putting them in the same position you have been put in. As far as we are concerned she is well enough to travel today'

And as we said goodbye to the unit who bought Smidge so far, I left with mixed feelings. Grattitude, rejection, fear and anxiety. How I wished I was was not taking an intensive care patient 150 miles in the back of an ambulance because once again, there was no room in the inn.

She lasted about a week at the level 2 unit, before green bile and recurrent apnoea prompted yet another surgical transfer. With the duvet's piled high in the back of the car, Once again we set off on what was this time an 80 mile trip to the latest world of monitors, charts and bleeps, the only source of continuity being a singular pre packed suitcase.

It was hospital number four and I was stressed. Actually that's an understatement, I was steaming! wanted to be in my own house, I wanted to sleep in my own bed. I missed taking my son on the ordinarily tedious school run, I missed shopping at my local supermarket and washing up at my own kitchen sink.

I'd also lost faith in the doctors and nurses. I'd given up on trying to have any control over the process.Here we were three months down the line, still with a very sick baby and it all just seemed a bit yadder, yadder, yadder.....

Thank goodness for my i-pod which assisted me in excluding any social stimulus that existed outside of me touching or holding my baby. Everyone else could jolly well consider themselves sent to Coventry, I'd had enough.

As with many things in the Neonatal world, I experienced service provision as being paradoxical in nature. On the one hand it was utterly amazing that the national health service would save the life of a baby born so small, but equally I see that my child suffered needlessly at the mercy of the hospital transfer system, so the gratitude I feel will be laced with anger and with a drive to see things change.

We know these very small babies require specialist care, we know the problems they will likely encounter, but until they are allocated the resources they deserve, vulnerable babies lives will continue to be put at risk through the hospital transfer system.

So,If you're like me and you think early gestation babies deserve the best care they can get, speak to your M.P today about securing resources for Neonates.

Because no baby should be made to suffer because they were born too small.

Rant over.