What a Week: Time to Refocus

What a week! There are many lovely and exciting things to tell you about, dear readers.

But first, a moment of reflection. I’ve been distracted from my blog (I’ve really missed it!) and from my usual self-care techniques by some upsets with people about whom I care deeply. The upsets were on social media – as wonderful as social media is, misunderstandings are bound to happen from time to time. I’ve been at the receiving end a number of times and whenever the other person has apologised, I’ve acknowledged that while their comment hurt, I know it was unlikely to be intended and accepted their apology.

Anyway, this time my words were the cause of unintentional upset and for some reason my apology seemed to make it worse. To cut a long story short, I made myself physically ill with the stress of it all.

So, I am taking a step back and reassessing what is important in my life, and what I need to focus on. Firstly myself: I reminded myself of the very wise advice I wrote in this post. By trying to make other people happy, I wasn’t meeting my own needs – not by a long shot. I am who I am – candid, honest, enthusiastic and passionate about getting on and making change for other people’s benefit. I have a dry sense of humour, and with that I am kind, considerate, compassionate, and empathetic. I know I am a good person, I am happy with who I am and my motives for doing what I do.

My first step towards self-care was a lazy morning and a long cuddle with Fat Cat that we both thoroughly enjoyed.

The reason I mention this is the same as I mention anything on the blog – not to ‘pick on’ anyone or to make them feel bad, but to make a wider point about reflection and thinking differently. I am all about the bigger picture.

I am now doing my Taylor Swift dance, shaking it off and focusing on the positive. Ready? Let’s go!

Channelling the messages from my fab business cards (except for the 'fat' part, of course).

Channelling the messages from my fab business cards (except for the ‘fat’ part, of course).

Work

My phased return to work continues to be much better than I anticipated, I am relieved to report. My manager and colleagues are wonderful; very kind and supportive, and understanding of my needs. Colleagues have welcomed me back, telling me I have been missed, and that they are glad to have me back. No one has pried, which has really helped me manage my feelings of anxiety and vulnerability.

Another huge positive is that I am helping lead a project about my great passion – patient experience. It’s really exciting, and it’s great to have something to feel excited about.

There is still a long road ahead of course, but so far so good.

Neonatal Parents’ Meeting

On Wednesday I went to London for a Neonatal Parent Advisory Group meeting. It was tough – there were tears from me – but such a constructive meeting. Sadly, the other parents who attended have also experienced loss; I appreciated being, for the first time, in a group of people who really ‘get it’. We are going to be working together to use the benefit of our experiences to help other families, which feels to me to be a privilege.

Maternity Strategic Clinical Network Meeting

That meeting was followed by attending this meeting to talk in front of around 100 people about Hugo’s Legacy, my involvement in #MatExp, and my experience of a Whose Shoes workshop as part of a presentation about the campaign and the pilot workshops.

Talking about Hugo's Legacy and MatExp at a maternity Strategic Clinical Network conference.

Talking about Hugo’s Legacy and MatExp at a maternity Strategic Clinical Network conference.

Don’t tell anyone, but my week had been so busy I prepared my talk 30 minutes previously – I think I did alright. Lovely people came up to me afterwards to say Hugo’s story had really moved them, and I am also going to get involved with the work of the strategic clinical network to help shape better support for women who have similar experiences to mine.

I also really enjoyed the chance to have a face-to-face chat with #FabObs Florence Wilcock, after spending so much time communicating online. I have just realised we should have got a selfie!

Butterfly Awards

The wonderful Mel, who is behind the Butterfly Awards has invited me to give a speech inspiring other bereaved parents to share their stories, and to highlight why people need to put their temporary discomfort to one side and take the time to really listen to the stories. The invitation came about my latest #MatExp action, and I was honoured to be asked to and to accept.

I am also honoured to be shortlisted in the author/blogger category in the awards for the second year running. I know you will all be delighted to learn I’ll be asking you to vote for me again in a couple of months’ time!

My latest #MatExp action selfie

My latest #MatExp action selfie

Other exciting things…

It’s naughty to tease I know…but I have been invited to some other things that I can’t tell you about yet, but I will as soon as I am able!

Self-Care

The kind people at Lumie have sent me a SAD and energy desk light to review – the idea is it helps prevent the slump that usually prompts me to hunt down some chocolate. I’ll be letting you know how I get on.

Most excitingly, I’ve been sent a colouring book to review! It’s a hard life, but someone has to put themselves out…and it’s a great reason to ensure sure I definitely make time for self-care.

I’ve also had my hair chopped. It had been getting shorter and shorter over the past year – the new ‘do is a braver version of the graduated bob I had last time. I love it – it is the perfect compromise between a bit of flattering face-framing length and hassle-free lack of length.IMG_20150612_164845

The new 'do from the side.

The new ‘do from the side.

Phew! Right, time for more self-care – and to make sure I have energy not only for the things I need to focus on, but BritMums Live too! I’m very excited to see all my friends.

 Word of the Week: phew!

The Reading Residence
You Baby Me Mummy

Coping

A few weeks ago I wrote about how I need to have courage and to be kind to myself, because my life after bereavement and trauma is forever.

With a return to work imminent, I have been trying to do more things, push myself, and reintegrate.

That has meant testing my coping strategies.

Grief really does come in waves. As I described in this post, grief can be a tormenting tease. The positivity I felt from events last week such as a wonderful trip to Leeds after was extinguished in a heartbeat last Saturday morning.

Back were the feelings of lowness and panic, and with a vengeance.

There were a couple of things that contributed to this dip. Last week had been a busy one, and I am learning the hard way that my energy levels are limited. A psychiatrist gave me a useful explanation for this: in ‘normal’ (for want of a better word) life we spend 70% of our brain’s energy thinking of and doing normal everyday stuff. In dealing with grief or trauma, the brain spends that 70% of its energy on just getting through the day and on self-preservation, leaving just 30% for normal everyday stuff. That was helpful to explain my brain fog, my now-terrible memory (I frequently forget or take a while to respond to things – sorry). So, my busy week of ‘normal’ things wore me out emotionally as well as physically. As I adapt, and learn my boundaries, that will hopefully improve.

Another was news that the new Royal baby was in its way. My response felt silly, but being kind to myself I had to reflect it is perfectly rational in the context of my life: the news underlined everything I so badly want but do not have, and what I may never have (in terms of being able to go into labour when the baby is ready, and have a natural birth).

In response, I did the sensible thing and avoided social media as best I could until the media hubbub subsided.

Martin and I had a film day, which was much-needed. It gave us a break, and kept me away from social media.

Other things in my self-care coping armoury include colouring-in of course; taking pictures of bright and colourful things for my Instagram account; and I’m also getting more into Pinterest, finding lovely things – it’s a safer form of window shopping. Frustratingly, because I love books reading is still hit and miss, but hopefully that too will come.

The Reading Residence
And then the fun began...

May is Preeclampsia Awareness Month: Why It Matters to You

In February 2014, I was 23 weeks’ pregnant with my first baby. I had been feeling a bit unwell for a few days: indigestion, breathing was difficult, and I had suddenly weight. All normal pregnancy gripes I thought, but I checked Dr Google just in case, as you do.

Dr Google suggested preeclampsia. “Don’t be so silly,” thought I. “It’s like Googling a headache and diagnosing yourself with a brain tumour. I’m only 23 weeks’ pregnant after all, and preeclampsia happens only in later pregnancy.”

It turns out Dr Google was 100% correct on this occasion.

I was wrong. So very, very wrong.

A week or so later a routine midwife appointment showed problems with my blood pressure and urine, and I was dispatched to the local hospital where I was diagnosed with not only severe preeclampsia, but also with severe HELLP syndrome.

I was seriously ill. Our much-wanted baby was in serious trouble, too.

The only cure for both of these illnesses is for the baby to be born. Otherwise, both mum and baby will die.

My beautiful little boy, Hugo, was born three days later by emergency Caesarean section. He weighed just 420 grams. Hugo was so small and premature that despite everything possible being attempted to save his life, he died in my arms 35 days later.

I am heartbroken.

Me and Hugo

Me and Hugo

There is nothing that can be done to change what happened to me, or to bring Hugo back. What I can do is to help make sure everyone knows about these devastating pregnancy complications and what to do about it.

What are Preeclampsia and HELLP Syndrome?

Preeclampsia and HELLP syndrome are illnesses that can happen only in pregnancy. That is because they are related to the placenta, the organ a woman’s body grows to keep her unborn baby alive.

No one knows exactly how or why the conditions start, but we do know that it is related to a problem with blood flow to and from the placenta. In the simplest terms, the problems with the flow deprive the baby, leading to growth restriction. The placenta responds by sending back things to the mother, which then causes her problems.

They can happen any time after 20 weeks (and in very rare cases, before).

What are the symptoms?

  • Heartburn/indigestion with pain after eating
  • Swelling, and sudden weight gain
  • Shoulder pain or pain when breathing deeply
  • Malaise, or a feeling that something ‘isn’t right’
  • Pain under the right side of the ribs
  • Headache and changes in vision (‘flashing lights’).

Not all women who have these illnesses will have all the symptoms – I never had the headache or ‘flashing lights’. There are a couple of symptoms, such as protein in your urine and high blood pressure that are difficult to spot yourself, which is why it is vital all pregnant women attend their antenatal appointments because these things are routinely checked.

Of course, some of these symptoms happen in pregnancy anyway. If you are worried, it is best to get checked out anyway – visit your midwife or doctor. They can check your blood pressure and urine and you will probably be sent back home again. Thankfully, these illnesses are rare, affecting around 5% of pregnancies, which means that you are 95% likely to not have preeclampsia.

Are these illnesses really that bad?

Yes.

The ‘pre’ part of ‘preeclampsia’ is important: eclampsia means seizures that can happen when your blood pressure gets too high. It is important to remember that preeclampsia is bad, and women need to receive medical attention so it does not reach the eclampsia stage.

HELLP syndrome stands for Haemolysis, Elevated Liver Enzymes, Low Platelets – serious stuff. I nearly experienced multiple organ failure. Other women with HELLP syndrome have had actual organ failure, and some have sadly died.

Preeclampsia and HELLP syndrome can be catastrophic for babies, too, such as for my Hugo. That is because the only cure is for the baby to be born, regardless of gestation. It is very rare for these illnesses to strike so early (23/24 weeks); most cases happen later in pregnancy, when luckily many babies have a better chance of survival.

I’m not planning on getting pregnant – why does it matter to me?

You might not want a baby, or your child-bearing days may be over. You may also be a man.

Whoever you are, you are likely to know a pregnant woman, or someone who is planning to become pregnant. These illnesses are rare, but they are real and they happen to pregnant women today, not just in the history books.

The more people who are aware of the symptoms the better: to save the lives of women and babies.

There really is no better reason to explain why it matters to you. No better reason to care, to remember the signs and symptoms, and to spread the word.

 

For more information:

NHS Choices

HELLP Syndrome on the Pre-Eclampsia Foundation website

HELLP Raise Awareness

My HELLP Symptoms

Everyone should know about pre-eclampsia and HELLP syndrome

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Brilliant blog posts on HonestMum.com

When Is The Best Time To Try To Conceive After Loss?

My baby son Hugo died last year. We will always love Hugo, we will always miss him. He can never be replaced, but my partner and I would dearly love another baby, one we can take home. A question that has been troubling us is when the best time to start trying to conceive might be?

Put simply, there is no right time.

When I fell pregnant with Hugo I was full of joy, excitement, and a bit of anxiety – we both were – all pretty normal emotions. We were so looking forward to the arrival of our baby. However, at just 24 weeks I nearly died as a result of getting the rare pregnancy complications HELLP syndrome and pre-eclampsia. Hugo had to be born 16 weeks prematurely. He was growth restricted, weighing just 420 grams, and he died in my arms 35 days later.

That means if – when – I fall pregnant again I will be super high risk. I am especially high risk not only because I had the hat-trick of HELLP syndrome, pre-eclampsia, and intra-uterine growth restriction, but also because they struck me so severely, so quickly, and so early in pregnancy.

Me and Hugo

Me and Hugo

A frustrating thing about each of those three conditions is that we know what they are, and we know what the symptoms are. We sort of know what causes them (in very simple terms problems with the placenta, and the blood vessels force things back to the mother, which then causes her problems), but we don’t understand why it happens. If we don’t understand why something happens, we can’t prevent, or cure it (the only cure is for the baby to be born, which isn’t so bad if the mother is close to term, but catastrophic when it is so premature). We can only monitor.

And hope.

Pre-eclampsia and HELLP syndrome are relatively rare conditions. They most commonly appear later in pregnancy, and cases like mine are very rare. That means it is difficult for doctors to give a figure for the likelihood of it happening again. Doctors have given us different numbers which are educated guesses. Not to sound flippant for something so serious, but any figures we are given are about as meaningful as saying the chance of recurrence is eleventy-seven purple dinosaurs.

I might get to term without any complications. HELLP syndrome may appear again, but later in pregnancy and less severe. Or, it might appear as early as it did before.

No one can know.

Me at 20 weeks pregnant with Hugo.

Me at 20 weeks pregnant with Hugo.

Not knowing exactly what causes HELLP syndrome means it is impossible to do or not do anything to alter my chances of avoiding it in another pregnancy. There is no cause and effect, no ‘if this then that’. It is important for me to be as healthy as I can, physically, just as it is for anyone but there is no direct link, like there is with something like lung cancer and smoking.

One reassurance is I will have so many additional tests. Additional scans (including Doppler scans, which track the blood flow to and from the placenta) and blood tests will be able to track at an early stage whether things are starting to go awry. The difficulty with that, however, is there isn’t an awful lot they can do if things do start to go awry. I could only be monitored, and managed up to a point that is safe for me and the baby.

That means I am likely to be incredibly stressed and anxious prior to each appointment. I will probably have to have a bag packed at an early stage, and take it with me each time I go to the hospital in case I need to be admitted.

The stress isn’t helpful, of course. Increased stress leads to increased blood pressure, which is bad for me. Increased stress leads to an increase in the levels of a hormone called cortisol, which is bad for the baby.

So, I shall have to work on relaxation, meditation, positive thoughts. I will need all the support I can get to get me through that pregnancy. No additional stresses (as far as life can ever be controlled).

There is also the consideration that my pregnancy would not just be about me, but about the impact it may have on so many others, too. While the additional checks will reduce the chance of another pregnancy killing me, my other half, my family and friends will all be worried for me. My other half was just as devastated as I was when Hugo died. My family and friends were greatly upset, too.

Mummy, Daddy, Hugo.

Mummy, Daddy, Hugo.

Having my first pregnancy go so disastrously wrong does not give me protection from any other issues in another pregnancy, giving me more things to worry about. Miscarriage, stillbirth, other problems that mean the baby is unable to survive.

If another baby is born prematurely, we will have to go through the stress of neonatal care again, with an uncertain outcome.

One hope I hold on to is that another pregnancy without complications is possible. Another mum got in touch through my blog to say she had HELLP at 25 weeks and her baby also sadly died. Happily, she had another baby near term, with no complications.

It boils down to a couple of questions:

If I try and it goes wrong again, could I cope with losing another baby? I don’t know.

If I don’t try again, could I cope with never knowing whether I was able to take a baby home?

No.

With my history, another pregnancy will always be terrifying. I have to accept that there is no right time.

Anything can happen to anyone at any time, of course. The dilemma for us is that we know too much about things now. For all my talk about the value of information, I can see there are times when ignorance really is bliss.

Brilliant blog posts on HonestMum.com

Before and After

I remember…

Before.
When all we had was hope.
When we had everything to look forward to.

I remember Martin cooking me my favourite meals and not minding when I could manage only a token mouthful, thanks to my all-day-and-all-night nausea.

I remember spending hours reading about pregnancy.
I remember feeling so excited about what every pregnancy stage brings.
I remember the excitement about wondering what my baby would look like, who they would take after, what they would be interested in, what they would like to play with.
I remember looking forward to playing with my baby, watching them grow up.

I remember shopping for maternity clothes, showing off my growing bump, so proud.
I remember shopping for them in the post-Christmas sales, grabbing bargains, transition clothes that would last me until my baby’s birth in June and beyond, while breastfeeding and losing the baby weight.
I didn’t get to wear those clothes for as long as I had hoped.

I remember having things to look forward to.
I remember being more in control of my mind, my emotions.

I remember when I would leap at the chance to cuddle someone else’s baby.

I remember the blissful ignorance of not knowing about HELLP syndrome, that pregnancy can kill you, that bad things happen not only to other people but to you, too.

I remember Hugo kicking me, and punching me inside my tummy. I miss those wonderful moments.

I remember the feeling of Hugo’s skin against mine.

I remember his strong grip on my finger.

I remember watching him open his eyes, so proud.

I remember him kicking his arms and legs.

I remember him boogying to my singing.

I miss my boy. I miss him so, so much.

I miss the blissful ignorance of not knowing what it means to have your heart shattered, of having to cuddle your baby as they breathe their last, of having to leave them behind in hospital. Of having only memories, a legacy to nurture.

I do not want to remember anything else that happened, right now.

What happened, after.

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