Happy Holidays!

The schools have broken up for summer and we're all hoping the sun may make an appearance. Whether it's a vacation or 'staycation' for you this year, in the true holiday style, there may be an ice cream to be had!

Before you do go chasing after Mr Whippy, I've got a quick favour to ask. Perhaps you could sacrife one, maybe even two, ice creams this summer and instead donate that money to Great Ormond Street Hospital by sponsoring me to do the Adidas Women's 5K Challenge. You might not think a few pounds will make much of a difference, but added to everybody else's few pounds it will really add up! Just look at what your money could go towards...

£10 - could contribute to the building cost for the new Heart and Lung centre or could buy a large tin of paint to help decorate the walls and ceilings of a new ward

£20 - could buy four special neonatal masks, small and delicate enough to fit a new born baby's face

£35 - could help towards the cost of an operating microscope for one of the surgical theatres

£50 - could pay for five nights up keep of a patient accommodation room

£100 - could buy four toys specially adapted for the children to help with their rehabilitation

£500 - a respiration monitor to track a child's breathing

 

What better motivation is there to give up the ice cream? You can lose pounds in more ways than one! Not only will you look fabulous in your summer wardrobe, you'll also be helping to save children's lives. Go for it, click here!

The Map of My Life

One dark, cold November evening I found myself looking in the mirror and not recognising the person looking back. I looked old! The sleepless nights, breastfeeding (drink LOTS of water Mummies or you shrivel up) and the stress and worry that comes with having a baby (plus a little bit extra in our case) was taking its toll... on my face!
A quick plea to Father Christmas ensured that I could start the New Year without looking like the life had been sucked out of my face, but rather look youthful, fresh and radiant! (I believe what it says on the box).

Today I still have a little buffet of 'anti-aging' creams on the dressing table that I like to indulge in, but when I look at Amelia and her prominent scar on her chest I have to stop and think; why do we hide these wrinkles, lines and blemishes? Each one tells a story. The little round scar form chicken pox... the scars on my eyebrows when I misjudged doors as a child... the lines of worry when we found out Amelia had a heart condition and then a few more when she was in hospital... the lines of all the happy days, both before and since Amelia... So many lines of happiness that far out number the rest. Yet we all do it, cover them, disguise them, any way we can. We try to cover up the map!

I am sometimes sad that Amelia's map has started so young. My little baby, born so perfectly on the outside, was not quite perfect on the inside. She needed a little bit of repair work and now has a souvenir to prove it!  As I come to terms with it though, I look at her scar and feel proud that she has overcome such a big hurdle and hope that she continues through life with this determination and strength. I hope she is proud of her scar and doesn't try to hide it away (although that could be awkward when she's older, considering it's position, and I'm not so sure her Daddy would be too thrilled)!

The next time you're covering up your map - and it's ok, I'm still covering up mine! - have a little think. What does it say about you and your life? Good times, bad times, they are all there and make us who we are. xxx

Our maps.

To help other children, like Amelia, so that they can be fixed, click here

Every cloud...

Do you find yourself making a wish when you blow out those birthday candles? Or at Christmas pulling the turkey wish bone? I do. Always have. When I was little I'd be wishing for those material possessions that I thought I really couldn't live without but as I got older I started to wish for the things I didn't have control over. Health, happiness, etc...

I distinctly remember when pregnant with Amelia pulling the turkey wishbone and making that wish all Mummies-to-be make; that my baby arrives safe and healthy.  For the vast majority, that wish comes true. Anyone who saw the recent BBC series of 'Inside the Human Body' will know how miraculous this is, as timing is crucial. But what happens when the wish doesn't come true? You've done everything you should during your pregnancy; taken vitamins, eaten healthily, exercised, not smoked or drunk alcohol... the model pregnant women, but your baby is born with a problem? What then? If anyone is reading this who is going through, or has been through similar, I hope this helps.

Firstly, it's not your fault. It was such a difficult thing to come to terms with when we discovered Amelia had a heart condition. The devastation and disappointment that comes with being told there is something wrong with your baby is awful. You have to question, did I do something wrong? In Amelia's case it all came down to a blip in her genetic make-up. From the moment of conception there was a tiny bit missing on her 22nd chromosome and there was nothing that could change that.

Secondly, it makes no difference what you read/don't read. I never read the section at the back of the pregnancy books that talked about the unexpected because I didn't want to 'jinx' it. On reflection, I still don't think I needed to read it. Why build yourself up to a range of different scenarios? But either way, it makes no difference. Like I said, Amelia was destined to be a certain way from the day dot.

Thirdly, you can cope with this. Hormones are an absolute nightmare at the beginning which really doesn't help. But talking to the wonderful doctors and nurses at both our local hospital and Great Ormond Street Hospital is a great comfort. They are with you all the way. So to was our local doctor's surgery. We were never made to feel like a nuisance when we were worried about a cold Amelia had. Their doors were always open or just a phone call away. The NHS have personally given us a wonderful service.

Lastly, when you get through the worst days of your life you are rewarded with seeing your baby with a new zest for life. Amelia is coming on leaps and bounds. She's still behind her peers but she's catching up.  I think I perhaps appreciate each little bit of progress she makes that little bit more because it's been so long coming. I can't wait to be run off my feet, needing eyes in the back of my head and an extra pair of hands! I've had it too easy so far!

... My cloud doesn't have a silver lining. Mine is bright, shiny gold and I wouldn't have it any other way. xxx

Keeping the magic alive

The 'magic wands' post was a real success in terms of promoting my blog and getting donations to my Just Giving page. My initial target of £200 has been reached and I'm hopeful that the amount will continue to go up.

It got me thinking. How could I represent all this 'magic' that people were donating? To not only show my gratitude but to also show tangibly how individual donations build up to create something big.

I came up with this:

This wand will have all the names and messages attached from those who have donated. If you want to feature on the wand click here to donate. The plan is that I will carry the wand with me when I do the Adidas Women's 5km Challenge on 11th September, so you'll all be with me!  Who knows, it may even give me a little boost if I start to flag!

Before I end, if you're reading this thinking "Why does she keep going on about magic and magic wands?"  It's not because I have a secret desire to be Tinkerbell or Harry Potter. No. Let me just remind of Great Ormond Street Hospital's slogan...

Magic wands

One of the first things you think about when you're little one is poorly is "I wish I could swap places with them."  Whether it be a snuffly cold, recovering from painful injections or about to embark on a 4 hour operation; all you want is to make it better, take it away with a magic wand.

I would have given anything to swap places with Amelia so that she didn't have to go through a major operation. But I couldn't. I had to place all my faith and trust in Great Ormond Street Hospital. They don't have actual magic wands but they do have a miraculous team of doctors and nurses.

A few weeks ago I read a live blog by The Guardian that followed a 2 week old baby girl's heart operation. It was fascinating reading, along with the pictures that accompanied the piece.  Whilst the baby was not having the same operation as Amelia, there were many parallels and it gave me an insight of what actually went on whilst Amelia was in theatre. The scale of people and machinery, on which I'm sure any operation relies upon, is huge. There were seven health professionals in theatre with this baby, along with the head surgeon, not to mention the machines that monitor and keep the baby alive.

So where am I going with this? Here's where. Victor Tsang, the senior surgeon at GOSH spoke about many things regarding the surgery but this stuck in my mind...

"I can't give you an exact figure on how much an operation like this would cost. As well as surgery it requires ward resources, intensive care and other scientists supporting what we are doing in other laboratories. But it is very expensive. I would estimate around £50,000."

£50,000!

I'd always wondered how much in monetary terms we 'owed' GOSH for fixing Amelia's heart but never thought that it could be calculated. Yet here it was. An estimate admittedly, and not for the same operation, but it gives some idea of the actual expense. I realise that GOSH isn't completely funded by public donations, but without them the quality of care just wouldn't be the same. Each donation is like that magic wand; helping children and their families.

I couldn't possibly raise that amount of money in my lifetime, even £5,000 would be a stretch but what about £500? My current target is set at £200 but somehow it just doesn't seem enough.

I've raised around £150 so far and I am so very grateful to all those who have put their hand in their pocket and donated. Family, close friends and people I've not seen for years; even people I have never met! I'm so touched that they care about Amelia's story and want to help towards others.

So go on, your turn. Click here. Just a few pounds, it doesn't have to be a lot. Then you can sit back and feel proud that you've helped make a difference to a child. You've waved your magic wand. x

The long and winding road...

OK, so the road may not be that long at the moment or winding but the training is well underway and I'm starting to get into a routine. I'm currently working on my first mile out of a total of three (technically 3.1miles, but let's not get picky). I have three months, so a mile a month is what I'm working on. Maths in action there folks!
My training really turned a corner this week (excuse the pun) as my body gets used to jogging in the real world and I start to get the hang of pacing myself. No more whirring of the cross trainer, hidden away in the spare bedroom with my eyes glued to desperate housewives. Oh no.. Time to let the public see me sweat and hear me huff and puff like Darth Vader. Nice.
Now, Facebook followers would have perhaps read the status updates, one in particular stating, "Jog done. I'm not gonna lie, it ain't fun." I was feeling particular fed up that evening, seriously questioning my ability to run this 5km. When I began training I started out with a short circuit round the block, about 0.5km, and would repeat. In just a couple of weeks though I was running round in circles three or four times. It had got boring and I was loosing my motivation. I had tried taking the iPod along for company but every time I ran a few metres the silly headphones would just pop right out of my ears! *sigh*
So the next trip out that week was to be different. Still no iPod, the battery was now flat, but I had a new route planned; a longer circuit that I would not have to keep going round and round and round. Off I went, with a spring in my step and I did it! My first mile. Yay! Need to perfect it a little before we set to work on the next mile, but I'm starting to feel confident about this challenge.
Thank you to all of you who have sponsored me so far. It really does help to keep me motivated and determined to achieve something I've never done before. xxx

Here comes the science bit...

I've realised that a fair number of people do not know the whole story of Amelia's heart condition, what it is, how it came about and what was done about it. This is completely due to me not saying very much until now.

On Wednesday 28th April 2010, at 4.48am, Amelia was born. She had swallowed meconium during birth and she was very phlemy and bunged up. This wasn't a huge concern, doctors helped to suck out the mucas and things were improving.

I had yet to fully establish breastfeeding and so to help a fretful and hungry Amelia get some food in her tummy she was given a bottle of formula. Amelia guzzled it down so quickly that her newly developed skill of swallowing could not keep up and she choked. She was taken down to the Neonatel Intensive Care Unit (NICU) and had an x-ray to check if the milk had gone on her lungs. For any new parent this was a worrying time but little did we know that this was the beginning of a string of events that, looking back, was all happening at the right place at the right time...

The doctor on duty that night was a heart specialist. Looking at Amelia's x-ray he could see that her lungs were clear, but there was something not quite right about her heart. There was a visable hole between the lower two chambers and as a concequence one of her valves was not functioning properly. Amelia had been born with a congenital heart disease called Tetralogy of Fallot which reduces the heart's ability to circulate oxygenated blood.

This diagram provided by the British Heart Foundation illustrates the differences between a normal heart and a heart with Tetralogy of Fallot.

Here comes the explanation... concentrate!  The Ventricular sepal defect (VSD) is the hole between the two chambers. Amelia's operation involved sewing a patch over the hole. The narrowed pulmonary valve has been widened so that blood can flow to the lungs properly.

Although Amelia's heart is technically 'repaired' it will never be completely normal. The pulmonary valve is still abnormal and does not close properly meaning blood leaks back into the right chamber. As a result the valve has to work harder than usual and, over time, may become enlarged. This will have to be monitored over the years and it is possible that Amelia may have to have another operation when she is a teenager to replace the valve.

In addition to having her heart repaired, Amelia also had to have a the artery to her left arm (the subclavian artery) moved. It was unusually coming off the artery to her lung (left pulmonary artery) and had to be repositioned to where it should have been formed, on the aorta. This was a straight forward procedure and carried out successfully. The way Amelia's artery was formed is unconnected to her Tetraolgy of Fallot.

Hope this all makes sense! It's taken a year for me to get my head around it all, so if you got that all in one go you've got a good Biology brain!

Thanks for taking the time to read this extra long post.

xxx