Tag Archives: Bliss

The Cost of a Premature Baby

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The cost of having a premature baby is substantial. First, there’s the cost incurred by the NHS for life-saving medical care. Then there’s the emotional cost to parents. This is hard to quantify. All I can say is that it is hefty. Life-alteringly hefty. My blog is in part an attempt to explain just how emotionally costly it is, even though I know that the pay-off is huge.

But there are other costs, too. More tangible, grubby little ones. And they can put an extraordinary pressure on you during what can be one the most difficult times of your life.

This was our situation…

Nearly two years ago I went into labour without warning, at work, 11 weeks early, 65 miles from home.

I was given a choice of which hospital I wanted to go to. Fortunately, despite my fear and ignorance of prematurity and local geography, I picked the one with a level 3 NICU (an acronym I didn’t even know at the time).

I have nothing bad to say about the hospital, where he stayed for 2 weeks before being well enough to transfer to another 10 minutes from home for the next 4 weeks. But the costs of our stay (a relatively short one considering how very premature Boo was and the complications – meningitis, brain bleeds – that ensued) were extraordinary.

With a heavy heart, and convinced it was the wrong thing to do (but there was no right option, I now see), I was discharged from the hospital the morning after giving birth to Boo, despite being considered twice for a blood transfusion.

Why did I do it? Well, as I’ve said before, I couldn’t help Boo and The Grumposaur, and more importantly Sissyboo, then only four, really needed me and asked me to come home. They were scared. Their world had been turned upside down. There wasn’t anywhere practical or affordable all of us could stay in or near the hospital.

To complicate matters further, my partner is self-employed and was about to embark on his busiest work project of the year. He had worked on it for 11 months. It would take him away for nearly 2 weeks. He had to work. It was his biggest pay cheque of the year. Self-employed fathers don’t get paternity leave, although that would only have seen us through a third of our NICU stay anyway. If self-employed people don’t work, they don’t get paid. And we needed money more than ever.

First, I had to buy a breast pump, so I could supplement pumping  done on the NICU and build up a supply of breast milk for Boo that everyone told me was vital to his survival and development. And it had to be a good (that is, expensive) pump as my body (still in shock) wasn’t really ready to do this. The hospital had none to loan out. They had three broken ones on the unit that hadn’t been repaired on the grounds of cost. £120 had to be spent.

Every day, often on my own, sleep deprived, driving through tears, I drove a round trip of 110 miles to see my little boy. One day, when I feared he might die, I did it twice. The fuel costs were astronomical. Hundreds of pounds in two weeks, despite me having an economical, sensible car. In the first three days, I spent £60 in hospital parking charges before a NICU nurse told me we could get a discounted weekly permit for £15, although sometimes the men who dished them out we’re reluctant to do so as people tried to work the system, so I should ‘look stressed’ (not hard) and get them to phone the NICU if they contested it.

And then there were food costs. The hospital canteen food was OK, although I would have happily not eaten it. But I needed calories for milk supply and to help me stay awake to be safe on the roads. I tried only to have one meal and a coffee in the canteen every day, but it soon mounted up in price. Perhaps I should have made a packed lunch, I hear you say. But this was no picnic I was headed for. I could barely string a sentence together or see in my peripheral vision. I was just surviving. The fridge was bare (Sissyboo was getting two meals a day at nursery or eating in the canteen with me when she wasn’t). I couldn’t have summoned the will to make a packed lunch if I’d tried.

The costs reduced significantly when we got closer to home and parking became free (one of the few perks for NICU parents of the hospital we ended up in – I have since sunk a small fortune in one to three weekly visits there since discharge). But this NICU  didn’t provide nappies or cotton wool for prem babies as the other had and seemed cross I hadn’t brought any with me after he was transferred (with only a couple of hours; notice) arriving at eight in the evening. I sobbed when I realised what a rubbish Mum they thought I was and went out to buy nappies at 6:00 the next morning. Preemie nappies are, of course, very expensive. Only one shop, 8 miles from us, sells them. I live in a town with several chemists and two supermarkets.

I can see that some of these costs are unavoidable, but meeting them can be difficult for the parents and families of babies born too soon or sick. Meeting them when you are in such a vulnerable state makes a difficult situation worse. Having to let your partner work and each go through this intense experience separately is impossible for both parties. It’s a miracle we are still speaking to each other, to be honest.

But we are and we met the costs. It was hard, but what choice did we have? Others are not so fortunate.

This is why I am supporting Bliss’s Thunderclap It’s Not a Game Campaign, which is campaigning for better provision for the families of premature and sick babies to help them through this difficult time. It is easy to give your support to this campaign, by visiting their Thunderclap page and using social media to affirm your support.

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Why Prematurity is like The Matrix: A post for World Prematurity Day

Do you want to know what it is? Prematurity, I mean.

This blog is, in large part, my attempt to tell you just that. And this week, the week that will conclude with World Prematurity Day on November 17th, I want to do that more than ever. I want to tell you what prematurity is.

I don’t mean technically. You probably know that prematurity is clinically defined as birth before 37 weeks gestation. You may also know that 15 million children are born too soon every year, 60,000 of which are born in the UK alone. But parents of premature babies (though, in my experience, they frequently cling to statistics) know that facts and figures don’t mean all that much when it’s your child who has been delivered in a pre-term birth. If you are quoted an 80-90 per cent survival rate for your child (as we were) and, unimaginably, they are one of the 10-20 per cent who die, or if you are given a 70-80 per cent chance that your child would outgrow their prematurity (as we were) and they don’t (as Boo can’t), well let’s just say that statistics don’t mean a thing.

They are not prematurity.

Prematurity is despair that runs so deep that you feel you can plunge no further. Prematurity is hope that makes you fly so high that you can barely breathe with the excitement it generates. Prematurity is pain and joy. It is death and it is life. It brings into focus what it’s all about. What really matters. And once you have experienced this, nothing will ever be the same again.

You see, prematutiry is like The Matrix. I never thought I would be the one this happened to. And there are moments – who am I kidding, I mean days – when I wish Morpheus would enter my life with his funky shades and offer me a blue pill so that I could forget about it all. So that I could go back to my happy, pre-NICU existence, where I just got on with the job of looking after my kids and going to work and socialising.

This life tastes bad sometimes. There have been days that have felt stiflingly grey, when I have longed to breathe fresh air and taste the pleasures of my former life. Days when I have been scared out of my wits by things I hadn’t ever known about before: about long lines and lumbar punctures; about brain bleeds and cerebral palsy. I rather liked the normal world that was pulled over my eyes for the first 35 years of my existence. But of course, I had no idea how bloody lucky I was at the time.

I can’t go back. This is my new reality, a reality that is structured as much by prematurity as it is by the passing of the seasons and the days of the week. It is everywhere in my family’s life, even though we left the NICU well over a year ago.

But this is only part of our story. This is only part of what prematurity is. Because prematurity is also jaw-droppingly revelatory. It opens your eyes to a world that was always there, but (in my case) you never really knew existed. And it’s a challenging world, to be sure. It’s a difficult world. Yet it is also an astonishingly beautiful place in which the truth about life, about why it is so very precious, is revealed. How could you ever appreciate a finely cooked steak if you haven’t tried to digest the indigestible? Ignorance is not bliss. It’s only when everything you hold dear is on the line that can you appreciate it. I mean really appreciate it.

There is no blue pill for me. But if I were offered it, I wouldn’t take it even if I would give my soul for my son not to have cerebral palsy.

You see, prematurity is the scales falling from your eyes. It’s seeing what makes the world turn on its axis. And once you’ve had a glimpse of this reality and seen it for what it is, you see everything differently and you bat away all the trivial stuff that preoccupied you before the NICU like a fly to the swat.

Because none of that is real in the same way. I can see that now.

Prematurity affects the lives of millions of families across the world every year. On World Prematurity Day, please consider giving a donation, or volunteering some of your time, to one of the leading charities (such as Bliss, Tommy’s or Bounty) that fund research into pre-term birth or who offer invaluable support and care for families affected by this life-changing event.

Thank you.

The Impossible Hug

Last night I watched a wonderful short video that Bliss has produced with the advertising agency Langland to mark World Prematurity Day on Sunday 17 November. It’s called The Impossible Hug and you can watch it here.

Please watch it. Because in 42 seconds you will get a glimpse into the world of heartache experienced by the parents and families of the some 15 million babies born prematurely every year who can’t hug their children for days, weeks or even months.

Before I had Sissyboo, almost 6 years ago, I was worried about holding babies. They all looked so fragile. What if I dropped them? What if they smelled my fear and wriggled away? What if they screamed? What if I did? Well I could always give them back to their folks, I reasoned. But not when they were mine…

Before having my daughter I was apprehensive about holding her, of looking like a novice in front of midwives. And then I went into labour, she stopped breathing and all I wanted was for her to be out, to be safe, to be with me where she belonged. Our first cuddle was nothing like I’d imagined. I only had feeling in part of my body from the spinal epidural I’d had for the c-section and she looked like she’d been in a vicious rugby scrum. But the apprehension had gone. It was wonderful.

When Boo was born, I soon realised that my initial apprehensions about hugging his sister were a luxury: the kind of nervousness you feel knowing it’s only going to be temporary and you will take the plunge and it will all be OK. There was no room for luxury or emotional self-indulgence with Boo.

Seconds after he was initially put on my chest post delivery, bloody, translucent and spindly, he was intubated and taken away from me. I wouldn’t see him again for more than half a day. What I didn’t know then was that I wouldn’t be able to hug him for days. And the ache of loneliness and uselessness I felt as I longed to cuddle my boy, to tell him we loved him, that all we wanted was for him to come home and for us all to be together as a family was excruciating.

The NICU encourages physical contact from parents early on. From the day after his arrival I did his cares and had to learn how to clean a baby’s eyes around hats and ventilators, how to change nappies around lines, how to touch downy skin so fragile it wasn’t ready to be touched and all through two little holes in the side of a box. It felt like bomb disposal work.

But on day 2 I left the NICU having been told our first hug could be on the agenda soon. I left elated and sped the 55 miles to the NICU the next day only to find that Boo was dangerously ill. He was having a septic episode. He might not make it. This blog is about that journey from prematurity and meningitis to cerebral palsy and epilepsy, so I won’t rehearse it here.

Suffice it to say that his recovery was a miracle. He fought and fought and with excellent medical support and a heap of luck he won. There were prices to pay but the reward – my beautiful, cheeky, amazing boy – was beyond value.

And one day, day 10, I got a taste of how good our new life would be. Because what seemed impossible the day before became possible. This happened:

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Kangaroo cuddles were still some way off (you can read about them here) but this was one magic moment I will never forget. No apprehension. No fear. Just love.

Please get involved in Bliss’s Impossible Hug campaign for World Prematurity Day by sharing a photo of you, your friends and family and little ones giving a hug with them on Facebook, twitter and Pinterest, or email your photos to mediateam@bliss.org.uk and they’ll post them on their special World Prematurity Day Flickr page.

RSV and the Silly Season

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It’s the silly season: Halloween, bonfire night and Christmas are all upon us. And with that comes about 1000 requests a day (more or less) from Sissyboo’s school for gifts, cakes, volunteering, costumes and … oh I can’t finish the sentence because I feel queasy now.

It’s also cold and flu season. More to the point for former premmies and medically compromised kids like Boo, it’s RSV season. Until March next year. That’s right people. Until March.

RSV… I’ve said before that after having Boo I entered by own private hell of acronyms. In the NICU (acronym #1) I had to learn about the dangers of NEC and CLD, the problems that can attend NG feeding and the TPN that can help to alleviate them. Then we experienced the horrors of IVHs and the CP and IS they led to.

When we finally got Boo home, though, the one acronym I’d been told particularly to fear was RSV (CP and IS were just beyond the horizon in those halcyon days). I cannot tell you why I hadn’t heard of RSV before. I’d  probably had it, after all, as had my partner, daughter and most people I know. That includes you. You’ve most likely had it. But have you heard of it?

No? Well you should have. I should have. Because these three little letters can cause a whole lot of trouble for premmies and anyone with suppressed immunity or underlying health problems such as asthma. In most people like you or me when we get RSV we just feel a bit rough for a week, take a painkiller of choice, drink tea and carry on as normal.

For kids like Boo it can cause a raft of other illnesses and frequently leads to hospitalisation, breathing difficulties (sometimes very severe) and, in some cases, necessitates ventilation. It can produce a heap of complications such as pneumonia or long term lung problems such as the bronchial hyper-reactivity Boo now has.

In the US, many preemies, especially those born extremely early (or micropreemies) are put on RSV lockdown or isolation. Trips out of the house are only allowed to certain locations and have to be planned with great care. There are many preemie parent bloggers who have great advice on dealing with an ordeal I only have had a glimpse of during the months Boo was on steroids. I nearly went mad. There is no equivalent recommendation in the UK to the lockdown encouraged in the US beyond being cautious during RSV season. How very British…

But that’s why we all need to know about RSV. Because we need to help those whose bodies can’t fight it by behaving responsibly when we might have it and not even know it.

RSV stands for Respiratory Syncytial Virus. If you are otherwise healthy and you get it you will likely think you have a bad cold or mild flu. You will have a runny or stuffy nose, a headache, a sore throat and a cough, maybe with a fever. You likely won’t need GP treatment and if you do go to the GP they probably won’t test for RSV (the test is done via a nasal swab) as it should clear up of its own accord and being a virus it doesn’t respond to antibiotics.

But, and this is an important but, RSV is highly contagious through cough splutters and sneezes. It lingers on hands, clothes and door handles or pretty much anything you touch with unwashed digits. And that means you could unwittingly pass on something that makes you feel a bit out of sorts to someone for whom it could be utterly devastating.

When we left the NICU last year, I left with the fabulously useful pack provided by the wonderful charity Bliss, which helps babies born sick or too soon. One of the leaflets in the pack was about common winter illnesses. It contained helpful advice on RSV diagnosis and prevention and you can download it here.

I found out subsequently that in the US you can get an RSV immunisation and I asked Boo’s most unhelpful consultant if there was any equivalent here. He told me no and it was likely an ineffective vaccine anyway, although to be on the safe side, Boo should have a flu shot. By the way, the flu shot does not prevent RSV at all. Have I used the word unhelpful in this paragraph yet? Let’s try useless this time. He was/is useless.

In any case, I quickly realised that prevention was clearly going to be the best form of cure as far as this little viral blighter was concerned and it was not necessarily going to be easy given that Boo’s big sister was at a large nursery.

Yet the answer to the question of how could we help prevent Boo catching RSV was so simple that even my then 4-year-old could understand it. I won’t put it in capital letters in case it looks as though I am shouting (although I would stand in the high street with a tannoy if that would help): Wash. Your. Hands.

We made every visitor who came to the house wash their hands. We had antibacterial hand gel (not as effective as hand washing but more acceptable to some, it seems) by the front door and used it liberally ourselves in between hand washings after touching our faces and before touching Boo. We stayed away from him when we had colds and I washed door handles etc. when I remembered to do so (I wasn’t obsessive about this, no matter how this post makes me sound, but I was diligent).

Some people (usually medical folks coming to the house I must say) bristled a bit when I suggested they might wash their hands (especially the health visitor, who came in with a stinking cold, sneezed into said hands and went to touch Boo’s arm) but most were fine about it.

And then Boo got infantile spasms. He went onto a brutal but effective course of high-dose steroids to stop the devastating seizures and needed daily monitoring for blood pressure and blood sugar rises resulting from the medication. The NHS guidelines were that these checks should be done at home by a community or epilepsy nurse as Boo’s immune system was so suppressed by the steroids that taking him into a germ factory, I mean hospital, was not a good idea.

But our hospital has no epilepsy nurses and the consultant who usually manages these protocols was on holiday and the person in charge demanded we make daily trips there … With a baby having multiple seizures a day…. And each day for 5 days (I am not kidding) we ended up in the Children’s Assessment Unit sat next to a child with bronchiolitis (a common side-effect of RSV) or RSV itself.

So guess what? Boo got RSV and bronchiolitis. And he was hospitalised for a terrible wheeze and we were put in isolation. Unless a nurse could be found to help me and they were so busy they rarely could, I couldn’t go to the loo or get a drink as I wasn’t allowed to take him out of our cell, I mean room. He avoided re-ventilation but only narrowly. It was horrible. And so unnecessary. The spasms were enough to contend with. Believe me.

And we still live with the after-effects of RSV. Boo has bronchial hyper-reactivity, which means that the infection scarred his lungs badly and even the most minor sniffle can make him sound like he has had a 60 a day cigarette habit for 50 years. It disturbs his sleep and his feeding. He should grow out of it in time. And we were lucky it wasn’t worse.

But it still makes me angry that he got it from a hospital whose cross-infection procedures are, in the words of one of the specialists who treated Boo on the ward, ‘laughable’. Boo left that NICU with a host of problems related to his early arrival and meningitis, but respiratory problems were not among them. Not until we were forced back to the bloomin hospital.

It also makes me angry that people can be so complacent about hand washing. It’s so easy. Why is it so irritating to people?

The other day, I dropped Boo off at nursery and used the hand santizer on the entrance door (as I always do and everyone is asked to do) when a Dad behind me and clearly in a rush (aren’t we all?) said ‘Oh you’re a rule follower are you? Can I get by please?’ Because you know, that 15 seconds I spent washing my hands in the hopes any bugs I might have might not get passed on to his little bundle of preciousness was clearly a sign of sheep-like acquiescence and I was wasting his time, goddammit.

I didn’t say anything, but I did ask nursery to send out a reminder to parents to wash their hands on entering the door. I know it’s a losing battle, and I don’t wish to sound preachy. But here’s the deal: I didn’t know about RSV before having Mr Boo. Now I do. And I have seen my son and others really badly affected by it. So I feel I need to tell others what I now know so that they can help make a difference.

Hand washing is childishly simple. It’s not time consuming and it’s just about one of the most proactive and socially responsible things you can do.

This may be the silly season, but please don’t be daft. If you have a cold (it might be RSV, you will likely never know) please wash your hands regularly. Boo and I will be very grateful.

For more information on RSV, please consult the Bliss website.

A Blissful Afternoon Volunteering

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Yesterday I had such a fun afternoon. I volunteered to help cheer on four amazing fundraisers competing in the 2013 London Triathlon for Bliss.

Back in March I did my own bit of fundraising for the same charity by running my first half marathon. I decided to start running (having been unwell, unfit,  depressed and never having run in my life) just weeks after Mr Boo left hospital. It was a mammoth task for me, especially after Boo developed infantile spasms. It was touch and go whether I would be able to do it, but Boo, the cause and the £1500 I raised in sponsorship kept me going. I blogged about it here.

I still find it hard to believe I did it but I have the finisher’s medal to prove it and for 3 months afterwards I had an injury (ITBS) to show for it, caused by having to up the distance too quickly in the last few weeks following Boo’s interruption to my training.

The injury’s gone now and so, to my shame, is my fitness and waistline. My return to work in May has been good for our family bank balance and terrible for my health. I want to get back into running. I can’t say I love running the way serious runners do. Often I can’t bear it, to be frank, but in 30 minutes I can run over 3 miles, clear my head and do something for me that also helps my kids. They need me to be strong. Life is often difficult. Being fit helps. I can really see that now I’m for not.

But running also helped my mental well being. Exercise is not a universal cure for depression and anyone who thinks that telling someone who is depressed that they should go for a jog clearly has no idea what they are talking about. But it has helped me. I tried to get at why this is the case in my Keep on Running post a few months ago but I still can’t quite claim to understand fully. It is partly about turning the difficulties we face into a positive. It’s partly about wanting to do all I can through fundraising to prevent others going through what we have or making it easier for them, by supporting Bliss, if they do. It’s also, largely I think, about acknowledging Boo’s challenges and achievements.

Nothing comes easy for Boo. As you’ll know if you’ve read this blog before, at 13.5 months corrected (16 months actual), Boo can’t roll, sit, crawl or stand. Getting full head control was a major step. Reaching over his head another. Playing with toys in a supported sitting position another minor miracle. We do therapy with him a few times a day every day. We work for months on the same skills. He gets grumpy, frustrated and tired. I distract him and then expect him to keep going. We push him, but miraculously he also pushes himself. He never gives up. And I will never give up on him. When you look at it like that, a half marathon or triathlon is a walk in the park.

Seeing the Bliss participants yesterday and cheering them and others on reminded me of what a resilient, determined, compassionate and optimistic bunch we humans are and how much we can achieve when so much is at stake. I feel reinvigorated to get back into running and, as I’d always planned, I feel compelled to find another fundraising  challenge for next year. Watch this space.

Yesterday has also convinced me to do more volunteering of this kind. I had a great time and the Bliss triathletes really seemed to appreciate our whoops, claps and screams. There were only two of us, but we were loud. Others saw the Bliss flag and our clapping sticks and shouted ‘great charity’ as they ran past. Putting the charity on others’ radar is so important. When there was a cloudburst and we got soaked for 10 minutes and other charity supporters ran for cover we stayed out and *we* got clapped and thanked by runners for various charities for being out there to support them.

Not everyone can run a half marathon or compete in a triathlon. But anyone can clap and cheer and, believe me, it can make all the difference as you drag yourself to the finish line. So please consider volunteering to help your favourite charity in this way. And if you fancy doing it for Bliss take a look at this website and maybe I’ll see you there some time. Next time, I’m taking Sissyboo!

 

magic moments

How Kangaroos became my Favourite Animals

I love animals. I grew up with a menagerie of dogs, budgies, hamsters and rabbits. I volunteered to help at animal sanctuaries as a teenager and have been a vegetarian for 25 years. A few days ago Sissyboo (desperate for a dog we don’t have the time or lifestyle to look after properly) asked her evil no-you-can’t-have-a-dog Mummy what my favourite animal was. She expected me to say dogs and guilt me into letting her have one. And for most of the last 36 years ‘dogs’  would have been my answer. But since last year, I’ve had a new one: kangaroos. It surpised her, but probably won’t surprise many of you.

Today is International Kangaroo Care Awareness Day. I had never heard of kangaroo care before having Mr Boo. In my experience it’s one of the few nice things you learn about as the parent of a premature baby. In our first NICU I was given a leaflet by Bliss which gave lots of great advice on the apparently miraculous effect of skin-to-skin cuddles (better monitor readings and saturation levels; the promotion of intense bonding between parent and baby). I struggled to believe it or understand how a baby on a ventilator could be safely removed from their plastic box, but was enthusiatic to try, to try to hold my baby.

When Mr Boo was a few days old, we were all set to give this a go and I was so excited as I drove to see him that morning. But when I got there I found he was ill with suspected meningitis. He was far too ill to be removed from the incubator. Then, almost as soon as he recovered, he was whisked to a NICU nearer home (he was born 65 miles from where we live). Sadly, our local hospital did not actively promote kangaroo care. I asked about it and just kept getting a response of ‘soon’. Mr Boo had started to desaturate badly after feeds (it turned out to be severe silent reflux), they thought it wasn’t a good idea. I agreed it probably wasn’t, but my heart was heavy.

And then one day, an experienced NICU nurse called Sally who’d been on leave for the previous week came on duty and talked to me about the gruelling expressing schedule I was on (every 3 hours all through the day). She asked me if I wanted to breastfeed Mr Boo. I laughed and then realised she was being serious. And then she asked me how kangaroo care was going. She was appalled when I said I had been told to wait. She said there was no reason to. Mr Boo was on Optiflow but he would be fine out of the incubator for short periods and his sats might just improve, she told me. She said if I wanted to try to breastfeed, although it might not work of course, I should start kangaroo care now.

All those weeks of missed cuddles. I had to make up for them.

I did!

At just 32 weeks gestation, 3 weeks after he was born, I had my first skin-to-skin cuddle with Mr Boo, thanks to Sally. It was magical. He didn’t desat. In fact, his sats improved immeasurably just as she’d predicted. Not only that, but to our great surprise he started to root around and attempted in his tired, 32-week way to breastfeed. ‘They’re not supposed to have the suck, breathe, suck reflex at this gestation,’ Sally said. ‘But these babies don’t read the manuals or they wouldn’t here in the first place.’

3 weeks later, we left the NICU with an exclusively breastfed baby. He still was 10 months later, I only gave up so I could go back to work (and drink more coffee!). I never expected to breastfeed Mr Boo (I managed just 6 weeks with his healthy, term sister) and feel far too much pressure is placed on women to breastfeed whether their babies are prem or not. But kangaroo cuddles created a bond between Mr Boo and I, regardless of the feeding, that is stronger than I could have imagined.

Sadly, I don’t have any pictures of me doing kangaroo care. The Grumposaur was away with work for 7 days the week I started and came back with a flu that left him unable to see Mr Boo for another 2 weeks. So no one was there to take pics of us, but the memories will never fade. And Mr Boo’s favourite way to sleep even now at 13 months is still his kangaroo cuddle.

If you’ve read this blog before, you’ll know I blog anonymously (no one who knows me knows I write it) and I don’t usually post pictures. But this is a very important day, so I’m making an exception. Here is Mr Boo a couple of weeks after coming home and 3 before his due date.

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Kangaroo cuddles don’t have to stop in the NICU! I hope you have some with your babies today wherever you are.

Further information:

If you would like more information about the benefits of kangaroo care to parents and babies, please visit: Best Beginnings: www.bestbeginnings.org.uk or Bliss: www.bliss.org.uk

Keep on Running

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This wasn’t the blog post I planned to write tonight. Like many people worldwide, I spent most of last night (when I should have been thinking about my next blog post) gazing blankly at the TV in disbelief at the devastating news from Boston.

I first heard of the bombings on Twitter and periodically checked the hundreds of tweets expressing anger, condolences and admiration for the many acts of kindness that emerged from this appalling tragedy throughout the night. All acts of terrorism are horrifically irrational and unfeeling. But there is something especially senseless about yesterday’s atrocity. As David Baddiel tweeted shortly after the news broke: ‘Who the f*** blows up marathon runners?’ (And their supporters, we might add.) Who indeed?

I started running a month after Mr Boo was discharged from the NICU. I have never been, or even aspired to be, particularly fit and the last time I had a gym membership was early 2007. I had meant to try to get more active after Sissyboo was born, but the combination of a young and wonderfully distracting child, a commute, a job and a botched caesarian, put paid to that. But something changed after having Mr Boo. As he got strong enough to come home I started to worry whether I was strong enough to look after him and his sister. Physically and emotionally I was running on empty after six weeks in two NICUS. My children needed me to be healthy. Getting fit wasn’t about getting into pre-maternity clothes or looking a bit more like seemingly every other Surrey mummy when I picked up Sissyboo from nursery. It was a responsibility.

More than that, though, I needed to do something positive to counter the difficulties that we had faced as a family and the challenges, it was becoming all too horribly clear to us, Mr Boo would likely face for the rest of his life. I wanted to commemorate the determination he’d shown as he overcame oxygen dependence, terrible silent reflux and meningitis to get home to us. I needed to show how proud I was of him and I wanted to thank Bliss, the UK’s charity for babies born too soon, too small, or too sick, whose leaflets, website, phonelines and training of medical professionals had helped us (and continues to help us) more than I can say. If I could raise money, maybe I could help make a difference. Maybe other families might not have to go what we and so many others have gone through. I entered a half marathon. If I could push myself to the end of 13.1 miles, I figured, then maybe we could all get through anything. Maybe it would all be alright.

My first ‘run’ was a full 30 seconds before my first walking interval of a minute. Never has 30 seconds seemed so long. But over the weeks and months between June and Christmas, I managed gradually to build up my running times and mileage by sneaking out 2-3 times a week, usually after the children were in bed. I was still breastfeeding and I was sleep deprived. But it made me feel good, nonetheless. Then Mr Boo started having seizures and on Boxing Day was admitted to hospital where he was diagnosed with infantile spasms. I’ll write more about this devastating and thankfully relatively rare form of epilepsy in a future post. For now, it’s enough to know that we were admitted to hospital and discharged subject to daily blood pressure and blood sugar tests in the Children’s Assessment Unit to monitor Mr Boo while he was on a dose of steroids that adults with severe arthritis might be prescribed. On these visits to the germ factory, as I not so fondly call it, he contracted RSV and bronchiolitis. He was still fitting a week after treatment started and we were readmitted to hospital.

The steroids stopped the spasms a day later (please, please let them be gone for good…), but there followed another 5 long weeks of steroid treatment. These were the worst 5 weeks of my life. Apart from the constant anxiety caused by the fear of the spasms coming back, we had to deal with Mr Boo’s uncharacteristic irritability and incessant hunger (I lost 7lbs in 5 days while eating normally). Worst of all, though, was the acute insomnia. For the next month or so, Mr Boo was only able to sleep for a maximum of 3 hours A DAY in chunks of 50 minutes of less. His sleep is still not back to normal.

I nearly lost my mind. I have never felt so ill. I couldn’t run. I could barely stand. With 6 weeks to go, and a longest run of 6 miles some weeks behind me, I knew wouldn’t be able to do the half marathon.

But I did. Because I wanted to. No: because I had to. For me, for Mr Boo, for Bliss. (I clearly had lost my mind!) Over the next few weeks I ramped up the mileage (a little too quickly for comfort) and was forced to run less frequently than was sensible as Mr Boo’s steroid-suppressed immune system failed to battle a constant stream of illnesses.

I think I was the only runner fundraising for Bliss at the event. But the sea of brightly coloured vests I saw ahead of me, and sometimes passed, showed that the vast majority of the field was also running for worthy causes. It was clear that for most people racing that day, the 13.1 miles was the easy bit. This was the part of the journey that was manageable because unlike the illness, tragedy or grief that had inspired us to run in the first place, it was finite. The race would end.

When I crossed finished the line, I burst into a flood of tears. So did my partner, my Dad and sister. Sissyboo screamed like a wailing banshee and Mr Boo looked bemused. I hadn’t just run 13.1 miles (I still can’t believe I can say that). I had got through 11 of the most difficult months of my life. And now I knew that, no matter how hard it got, I could get through whatever else was thrown in our way.

For all the sadness that had brought people to the start line that day, the overwhelming emotions I felt during the race were hope and optimism. It was completely exhilirating to see how far people were prepared to push themselves, how much they wanted to help others through their fundraising and the words and expressions of encouragement that strangers shared as we willed each other to the finish line.

And this is yet one final reason why yesterday’s atrocity is so utterly senseless. Because what yesterday shows, is how resilient we are and how the most appalling tragedies only make us stronger.

Our optimism cannot be suppressed. Our determination knows no bounds.