Motherhood - not for sissies

Motherhood - not for sissies

Monday, 29 January 2018

If all you do today is remember to breathe - then that's OK

'If all you do today is remember to breathe - then that's OK'

I remembered this mantra I used to whisper to E - to her face in the day and in my head every night before I attempted to sleep, every day that she was in NICU. I remembered it because I had one of those heart stop moments the other day where I thought she'd stopped breathing again.....

She was sat in the kitchen watching Peppa bloody Pig, I was pottering around as I do, bit of washing up here, cleaning up there, when I realised I had not heard her for a few minutes. I looked around and she was so very still, I rushed over to look at her and a million things happened all in one split second;

I wondered why she was so quiet
I immediately thought the worst
I saw that her face was glazed over and she looked vacant
My heart shot in to my mouth and my chest did that 'flip' it does when the adrenaline starts
I lost my breath
I shook her and shouted .............

and she looked at me like I was out of my mind.

She was having a little day dream bless her, and I shit all over it.

It made me realise that I don't think that feeling will ever leave me as a premmie mummy - that fear, that horrible inner fear that one day she will just forget to breathe again. She was extremely good at it in NICU!! She had multiple apneas every single day from day 4 to around day 40 - we even had an 'apnea diary' to record details of each one. Every morning we'd get to NICU - praying this was the night that she had been 'apnea free' - no such luck. It was the only thing that kept us from home - I do believe she would have been one of those discharged 35 weekers had it not been for the apnea issue.

Being reminded of those fears and feelings again is quite timely for my latest venture. It is soon time for another round of 'Bake for Bliss' - a chance to bake and eat cake, drink coffee (or perhaps bubbles!!), and raise as much money as we can for Bliss and NICU. This year - having moved 200 miles away from 'our' NICU, I will be donating to my now local NICU.

What I'm not interested in however, is having my donation swallowed up in to charitable funds, with the vague promise of it going towards a new incubator in 2025. The most important thing to me in NICU - besides the babies, are the parents. How I wish I'd had more support during our time there. Of course I had the other parents - but as I have mentioned before - this bond did not really happen until we were all home, and out of the woods. While in NICU you just walk around in a bit of a daze, exchanging niceties with the parents. But I had no one to confide in and tell how absolutely devastated I felt. No one to tell how I completely and utterly hated myself and my ridiculous body for letting this happen to my baby. No one to tell how the very real risk of brain injury made me look at her a bit differently - and re-assess everything I thought she would be - and feel sick and guilty about it. And when I had my first freak out and flashback - instead of being looked at strangely by the doctor as I had a small panic attack in the corner - what I really would have liked would have been someone to tell me it was OK, it was normal, and it would more than likely need treating at a later date.

One of my fellow NICU mummies does fabulous fundraising for the NICU with some amazing innovation to help the parents' journey - so I'm taking my lead off her. Thankfully, it has been well received at my local NICU, and I have a meeting with the sister in charge this week to discuss my plans further. She's eager for me to also be Bliss volunteer - hanging out in the NICU once a week or so, just to be there for the parents to chat to - to show that you can indeed come out the other end, a little bit scarred, a little bit different, but living, and enjoying my beautiful baby girl. Perhaps in the middle of a crucial time in my masters degree, while trying to hold down two jobs and be a fabulous mummy, and still recovering from my breakdown - it may not be the right time - but it's certainly worth thinking about for the future.

The Bake for Bliss plans are going very well indeed so far. My sister has thankfully taken the lead (I may have planned this in the middle of two of the busiest months ever ever ever!!!) - and appears to be some sort of events planning extraordinaire! We have loads of fabulous raffle prizes, cakes, decorations, guests - and that's just the start! So we are hoping to get a fabulous amount for both Bliss and the NICU.

As for me and my recovery - I am still doing really well I think. Flashbacks are still very much a thing of the past. Anxiety still rears its head every now and again, particularly when I have a big to do list. I just have to keep remembering the words of my crazy fabulous auntie - 'you can't eat an elephant in one bite'. Songs on the radio last week caused me to cry and be transported back to July 2015, but after a chat with The Husband I seem to have got on top of that wobble. And I still speak weekly to my fabulous midwife, which is a comfort in itself.

And my little super prem - she is utterly fabulous. Turns out the weird stuff on her brain scans must have been some kind of artificial intelligence - well that or the extra toe! She is unbelievable - smashing milestones like they are just boxes to be ticked. She can currently count to 30, knows the full alphabet and at least two words that start with each letter, she knows every single colour including the most recent - 'teal' 😂😂. Speech wise she is stringing short sentences together. She has memorised er favourite books and therefore reads along. I feel there is literally nothing this girl cannot do. Smashed it from day one, and continues to do so every day since.

For some people the journey ends at the doors of the NICU. For me it has been a life changing journey that will continue to shape my life and make me who I am - warts and all. And all I have to do is remember to breathe............

Tuesday, 31 October 2017

House of cards

You know when you used to build a tower out of playing cards and it got wobbly, you'd be trying to save it, trying to stabilise the card causing the issue - which would usually result in another wobbly card. It would never stop being wobbly, bit by bit each card would become unstable, and eventually, despite your best efforts, the whole thing came crashing down. This is what trying to deal with PTSD is like.

On the 30th April 2017 my house of cards fell down, after months and months of trying to keep it in one piece. It was a horrible horrible time for everyone close to me, but I'm so glad it happened, because I finally got help and now I'm pretty much back to my sarcastic and headstrong self again. I urge anyone living with PTSD following traumatic birth - time does not heal it, it does not get better on it's own, please get help.

I think people were shocked that I was in such a bad way. I had managed it behind closed doors for a long time. When we were in NICU we just got on with it, because that is what you do. There were very few tears, and little to no 'wallowing', because we had to be strong for our baby. We had visitors after two weeks and it must have looked from the outside that we were OK. I guess following our rollercoaster of fibroid diagnosis, multiple surgery, recovery, sepsis, expected fertility issues and a troublesome pregnancy people just thought I could cope - but everyone has their limit. It was actually just normal work stress that meant I reached mine. A new arsehole manager trying to assert his authority just sent my PTSD off the scale. Suddenly the flashbacks were frequent and unbearable, fuzzing my head and affecting my work. I would then get horrible anxiety about mis-diagnosing a patient and getting the book thrown at me, meaning I couldn't sleep, so I would just lay there while flashbacks filled my head, meaning I could then definitely not sleep. The less sleep I got, the more I got in to a tizz about work, I could not make decisions confidently anymore, and this vicious circle literally drove me mad. Even my own husband did not realise how bad things were, until he caught me on the floor of my bathroom, having a panic attack in between sobbing because I couldn't get the images of the birth out of my head, I believed E hated me, I hated myself, and it was at that point I managed to get the words out, between sobs and snot and ridiculous breathing........'I need help'.

My GP was fantastic. I was very reluctant to start on medication - but the mental health people suggested that due to my 'off the scale' scores (!) that medication would complement the therapy. I was started on citalopram. I'm not going to lie - the first week on this medication was absolutely horrendous. Headaches, nausea, inability to speak due to not being able to think of the right word, and by day 5 slurred speech and I could not feel one side of my face! I persevered, and after around two weeks the side effects had gone.

The therapy; I'm a cynic. A sarcastic, say it like it is, cynic. Years of working in A+E made me like this. I was positive that the therapy would be a waste of time. Talking over the birth with an airy fairy lovey counsellor was not going to fix me. In fact, we'd had three counselling sessions at the hospital which had been just like that. 'Tell me how you're feeling' bollocks, and then at the end of the third session she just said 'Well thanks very much and I hope you feel better soon' !!!!! But when you get so desperate you'd do anything I just accepted whatever they threw at me. In fact, this was very different.

Surprisingly, I liked my new therapist. Susan was an 'intensive therapist' that I had to travel 30 miles to see. The reason being that the 'normal therapists' in my area would not go near me due to my initial scores at assessment (yep - I was a proper nutcase!!!). The first few sessions were the 'getting to know you' sessions - where she wanted to know not only what had happened to me, but also the usual crap about my childhood etc etc. This instantly put me on the defensive - my childhood was fine - I am not a mentalist because I didn't get a Care Bear for my 7th birthday............I didn't though - and I'm still a little upset about that. As it turned out, Susan was not an airy fairy counsellor at all - she was actually a psychiatric nurse by trade! 

My 'PTSD score' (seriously - the scoring and flow charts in mental health is as bad as in A+E) was 67. The score indicating treatment is needed is just I aced that score as well. 😏  Susan suggested that we try EMDR, and I nearly kissed her.

Eye movement de-sensitisation and reprocessing therapy (is a gobfull so they call it EMDR) is a relatively new concept for those 'not in the know' but it has actually been around for a few years. Francine Shapiro first discovered that moving eyes from side to side did something to improve negative thoughts and distressing images, and published a text book in 1995 following various trials proving it worked. I had never heard of it until an acquaintance mentioned that it was a treatment for PTSD.

The consensus is that during REM sleep we process the days events in to memories. REM sleep is when your eyes are going mad under your eyelids moving left and right. It is thought that in some cases, when a person has experienced a traumatic event it does not get processed in to memory - instead it just resides in a different bit of the brain, and can be recalled in an instant - and this presents itself as a 'flashback.' Shapiro found that be recreating the REM sleep eye movement, while recalling the traumatic event, somehow caused it to get processed properly and ta daaahhhhh - you are fixed. How she discovered this completely random thing I will never know - but honestly thank goodness that she did!

It was not an easy treatment. Firstly - I couldn't do the stupid eye thing. I was too busy concentrating on looking at her finger to recall the  traumatic memories - normally I'm pretty good at multi tasking but my brain just couldn't get to grips with that one. So I would close my eyes and Susan would tap my hands left and right. Secondly, it seems to take you to depths you hadn't previously been to. At first when Susan said it can be quite a traumatic experience in itself I shrugged my shoulders. At that time I was experiencing flashbacks most of the day and until around 2 or 3am when I'd finally fall asleep from sheer exhaustion, so how bad could it be? But it was bad, it was exhausting, it dealt with emotions that I hadn't dealt with, and I'd leave the session feeling like Susan had beat the shit out of me for the past hour!

I realised it must be working when at around session 6 or 7, during the treatment she asked me what I could see (she did this about every minute or so), and I replied 'nothing'. This got more and more frequent, and my scores out of 10 for how distressing the images felt to me slowly went down. I started being able to sleep again, I was able to spend time with people and listen to what they were saying, rather than just nodding but in my head all I could hear was 'knife on skin, knife on skin', or all I could see was my baby being wheeled away before I'd had chance to even say 'hello'.

In August, my PTSD score was 7.

Getting my life back after being caught up in this for two years is exhilarating. Just the other day I was laying in bed in the morning and realised that I was not thinking about anything - no flashbacks, no thoughts of how much I had failed my baby, no anxiety over what might go wrong, no nothing. It was a lovely moment. I have re-connected with friends, with my husband and family, and I have a much better relationship with my beautiful daughter - she was definitely picking up on what was going on, these little people are not stupid!

I wish more was being done to help mothers, and fathers, after traumatic birth and time in the NICU. What we seem to be doing, as NICU parents, is helping each other through it. But not everyone is as lucky as me and has a lovely group of NICU mummies to chat to. I'm aware that there are charities such as The Smallest Things and Little Miracles working hard to raise awareness - but there is still a way to go, and we need the NHS on side too.

PTSD is debilitating - but with the right help, support and therapy it doesn't have to be a life sentence anymore.

Tuesday, 2 May 2017

What lies beneath

'No one knows what lies beneath!!!'

This was my friend's status on social media last week. A cry for help, or to simply let us know she was struggling. She's so right. Shit happens, we all get on with living, and everyone thinks we are ok. We don a brace face, a fake smile and we carry on. Even when we are dying inside. When realising I'm struggling this week a colleague said to me she would never have known - I seemed to be doing so well (!)

It made me think of this photo:

Everyone absolutely loved this photo and I really didn't know why. Comments such as 'you look so serene' - nope. 'The relief on your face' - nope. 'That right there is love' -  wrong again. That look on my face was a silent sob - just caught at the perfect time that it looked like a smile. This was our first cuddle and after about two minutes I tried to hand her back. The NICU sister, lovely Therese, said I needed to have her skin to skin for half an hour. She smiled at me, and I knew she knew, she knew how terrified I was, but she left me like that for the longest 30 minutes of my life. What was actually happening was this:

Guilt - this day and every day since. Guilt that because of my body's failure E was now here, tiny, tubes and cannulas sticking out of her, and fighting to survive. 'You have nothing to feel guilty about.' 'You saved her life,' say well meaning friends and family. It falls on deaf ears I'm afraid. It always has and it still does.

Fear - fear that one of those tubes would come out while I was holding her. Fear that that fragile, translucent, barely developed skin would break from my touch. Fear that she would stop breathing - so listening for every beep and alarm from her monitoring. Also fear that I would hurt her (more than I already had) just by touching her - her skin so sensitive as it shouldn't have been touched for another 11 weeks, we were warned to resist stroking her skin as it could hurt her (or so they thought - no one really knows for sure), so then you just become terrified to even touch your tiny baby, and holding them is a huge deal.

Mourning - I have mourned my pregnancy every day since it ended so abruptly. I have mourned my final trimester - 11 more beautiful weeks of feeling her wiggle inside me. 11 more weeks of showing off my bump, and moaning that I couldn't get comfortable at night, and 'eating for two.' And when you hold a premature baby, their limbs jerk around just like that feeling inside you, but it's outside. Still now I will cross the street rather than have to look at a pregnant woman.

Numbness - when you are warned that the first 24 hours of your baby's life is the 'honeymoon period' and following which - she may or may not survive, you adopt a distanced numb being. And the reason for this is not because you are some hard faced bitch that cannot love your child. It's to protect yourself. You can't get too close because you know in those early days every minute is a blessing, but everything can change in the beep of a monitor. You see it happen to other people, and you pray that the next time it happens, it is not to you, and then you feel guilty for feeling like that. So you hold back, and wait until things are a little more stable. You walk around and people say 'here comes mummy' and you feel nothing. You receive  card after card with 'congratulations!!' on the front and you have absolutely no idea why. When you finally let go and dare to fall in love, it then breaks your heart every day you have to leave the hospital and go home empty handed.

So as you can see - with all of those feelings there was no room for 'relief,' 'serenity,' and 'love.' So when I'm mulling everything over (again and again and again) I'm angry that when I look at that first photo of me and my amazing baby girl - that those are the feelings I'm reminded of. I didn't ever respond to those comments - because I felt guilty that I felt none of those feelings that people were so excited about. Fast forward a few weeks though and there was this photo:

This was the one that said all of those things.

Why am I talking about all of this now? Because this is the reality of dealing with prematurity. And because I so often see those 'first hold photos', the beaming parents among the tubes and monitors, and I know that those smiles are fake. But none of us dare say how we are really feeling. Until now.

This week is maternal mental health week and this is the week my mental health turn a huge spiral downhill (my timing for a breakdown is impeccable!!!)  We've recently been bombarded in the media with 'heads together' and 'it's ok not to be ok' - which is all very well - yet we fail talk about WHY we are not ok. WHAT is going on in our minds and why we feel the way we do (sometimes we don't even know why - and that is ok too). 40% of mothers of premature babies will suffer with mental health problems compared with 5% of  mothers that carry to term. And what about the fathers? So frequently forgotten - yet I know they suffer too - not only worrying about their child but also their partner. 

So here is what is going on for me right now. For 21 months I have tried to work through my mental health problems myself, truly believing that I would come through the other side with a bit of positive thinking, blogging and some St. John's Wort! Oh dear how wrong I was. Possibly not helped by a few other life stresses thrown in. And suddenly, like a cork popping out of a bottle of fizz, I couldn't contain my 'fizz' anymore. 

Flashbacks of the birth have got so all consuming they take up most of my day, and night.   This results in insomnia, terrible anxiety which cause irrational thought processes, an inability to make decisions, panic attacks, and rubbish feelings of failure and worthlessness. I can rationalise it all like this because I can be 'the healthcare professional' looking in at me as a patient! But that's where it ends really as I have no idea how to treat it! So now, a long 21 months down the line I have asked for help. I achieved some pretty impressive scores in the questionnaire from the mental health team (always aspiring to score highly in everything I do!!!) and I'm waiting for treatment to begin. I'm extremely fortunate to be having a relatively new therapy for PTSD called EMDR - eye movement de-senstising and reprocessing therapy. It's like a brain reprogramming thing - almost like a mix of cognitive behavioural therapy (CBT) and hypnosis. I'm so hopeful that it gets the results I need.

So why am I sharing this? Certainly not for attention, or pity. Those who know me will know I couldn't think of anything worse. I'm sharing it because I think it's important that we speak out. My friends and those closest to me would never have believed that me - former focussed, sarcastic, conscientious, hard working, life loving  positive thinking control freak could be reduced to this anxious, nervous, traumatised, panic stricken being..........and that's my point.

Mental health does not discriminate. It happens to everyone regardless of gender, colour, sexual preference and social class. It's happening to your friends, your neighbour, your family, your work colleagues. It happens when you keep telling yourself you should be grateful for what you have (thus increasing guilt further). But not everyone admits it or speaks freely about it. And because of that it is still a taboo. Let's speak to each other about these things, and instead of well meaning yet ill thought advice just listen and offer help. Even if it's just company for a walk or a glass of wine! Because there really is no advice to be given for these inner demons - let's leave that one to the professionals. And I will be ok - I know I will xxx

#headstogether #itsoknottobeok #smallestthings #bliss #maternalmentalhealth

Saturday, 7 January 2017

You had one job.......

You had one job. I'm sure that most mothers of premature babies have thought these exact words at sometime during the beginning of the journey. You had one job. Grow, nurture and keep your baby safe for 40 weeks. One job. And you fucked it. It eats you up, those four words. They go over and over and over in your exhausted and exasperated mind. You had one job.

This has been another area in which I have really struggled to be understood by anyone other than a fellow premmie mummy. This self loathing. I still suffer badly with it now, yet I know to keep quiet about it - because people don't understand and can't understand, and there is very little that can be said to help. I'm told over and over that I saved her life, if it wasn't for me that she would not be here, if I hadn't acted so quickly that things would be very different. This is met with - yes but if my body did not fail her then we wouldn't have been in the situation in the first place!

Confidence has never been my strong point since I was a child. No idea why, had a perfect childhood with a lush family. I've spent my entire adult life working extremely hard and setting myself ridiculous targets and aims for some kind of competition I've had with my unconfident self! Bizarre behaviour! And now what little confidence I'd built up has been beaten out of me with a stick. 

How do you deal with it? I literally have no real idea but I started by trying to overcome my 'anger'. This was the suggestion from the hospital counsellor in early days;

'What are you doing about your anger' 

What anger? We hadn't even spoken about anger. I'm not angry???!!!! Yes following that simple question I realised exactly how angry I was. And at everyone and everything. At everyone for not understanding. At myself for failing my baby. At my husband for having more time with her in NICU as I was forever fucking pumping. At every single pregnant woman I saw. At every friend who had an uncomplicated pregnancy and full term brith. And at my cat, for deciding to become diabetic the week we brought E home! 

I dealt with the anger by running it out and punching my sofa cushions, and it really does work. I've never been able to do the last thing though - but maybe someone reading this will. She told me to write down everything I was angry about (I mean really is there enough paper?!), tie it to a rock, and throw it in the river - once done you have to let it all go. I just can't do that yet, it's far too final, maybe one day I will have the strength to, it's still early days after all. 

Flashbacks - they are a trigger for the self loathe - as they start, and everything runs through my brain again, and it finishes with - you had one job. The flashbacks are impossible to control, although thinking about it they haven't been so frequent recently, so maybe that is progress! 

The self loathe puts enormous strain on relationships. My closest friends just want to punch me I'm sure! My husband gets so frustrated at me. I'm really not doing it on purpose! There is absolutely no control. I am literally a shadow of my former self and I spend many an hour wondering if that self will ever return, or if I'll spend the rest of my life thinking myself in to oblivion. 

And really, I've been doing another job pretty well for the past year or so. My baby girl is thriving, in to everything, scaringly intelligent, and not letting anything get in her way. So I've not done a bad job at that I guess! I should maybe take a leaf out of her book. 

But for now - all I know is, I had one job. And I fucked it. And that will continue to haunt me I think for many years to come. 

Thursday, 8 September 2016

Positivity breeds positivity

E had her 1 year immunisations today. Dealt with it like a boss, as she had with all of her previous ones too. Probably due to the fact she got poked and jabbed every day for her first 7 weeks of life. It got me thinking - there ARE positives of prematurity, you just have to look hard enough. Sometimes it is impossible to see any positivity from the experience, but some days I do see it and feel it. So here are my positives, I'd love to hear of others. Drop me a message.

I have a group of women by my side who I am bonded to for life. I didn't even know these women 14 months ago, and I can't say I know them extremely well even now, but we went through the worst possible times together, side by side. We didn't even really speak back then, but we didn't have to. We felt everything the other felt. The pain, the heartbreak, the frustration, the anger, the massive highs followed by your world crashing down the next day. We felt all of that, on a daily basis and we felt it together. A look, a tear, a sigh, and we were right there feeling the same. And now we are out the other side we chat about milestones and delayed development, terrifying winter colds, consultant appointments, PTSD and our aversion for pregnant women. All of those things that 'normal' people simply cannot get their head around.

I am in total awe of my daughter. Every. Single. Day. At least once a day I look at her and I just cannot believe she is here and well. I have worked with unwell adults for 16 years, and I can honestly say if an adult had to deal with everything E had dealt with they would probably no longer be here, or they would be on an abundance of medication every day. When friends and acquaintances with term babies are frustrated with sleep deprivation, and second guessing every new 'behaviour' of their child ('must be a leap') I have just loved pretty much every minute since E came home. Of course I am human and I have had days where I have been frustrated with E too - although I can quite honestly count these times on one hand. When you have faced the very real possibility that your baby may not survive the night it makes you a different parent, it must do, although I can only speak from my own experience and E being my only child. What I know for sure is that prematurity really makes you thankful beyond belief.

We have celebrated every tiny milestone and some. From the moment she started following with her eyes we were thankful that that bit of her brain worked, and so on, and so forth;

'DAVE!!!!!! LOOK! she can follow!!!! She's FOLLOWING look!!!!!!!'....  (While squeaking the toy so ferociously I nearly dislocated my finger).

'The 'social smile' was extremely long awaited - so when it came at 18 weeks old we breathed a huge sigh of relief. In fact, she was still only 7 weeks corrected at that point so in fact she was right on track! And she pretty much has been ever since, with the exception of a little speech delay. This is fine though as I'm absolutely sure that once she starts we will never shut her up - so waiting a little longer for that elusive first 'mummy' is not an issue, (of course she has 'daddy' off to a fine art - typical!) When I was pregnant - before prematurity was ever on my radar, I just assumed I would have a baby who would smile, one day crawl, one day walk, talk, read, go to school and smash it! So when you are told to be aware that some, maybe even all of these things may never happen then of course every single tiny thing is a huge cause of celebration. Now we have no doubt that this little munchkin  will probably be ruling the world one day - so god help us all!!!

E has always been extremely chilled out. While I'm told over and over that it is because I have always been so relaxed with her, I do think that NICU has a huge part to play in this too. She will go to anyone - that is because she had no choice to begin with, she has unfortunately not been by my side since she was born. She sleeps well, and she sleeps anywhere regardless of background noise - this is because she slept through all kinds of hospital noise for the first 7 weeks of her life. She has never had a dummy - I'm sure this is because she knows it as a teaching tool therefore it was not going to be used as a comforter! (a dummy is used in NICU to teach the suck reflex, this reflex does not begin until the 32nd week of pregnancy - so many premature babies have to learn this skill). 

We have been so well supported as a family by the NHS. Neonatologists, neurology consultants, physiotherapists, speech and language therapists, orthopaedics, counsellors and our GP. Really does make up for the poor antenatal care and my hilariously bad health visitor.

And most importantly..........I have never purchased a box of formula!!!!!!!! (it's a joke - don't troll me!!!!)

Big high five to all my NICU mummies and the awesomer babies xxx

Monday, 8 August 2016

PTSD - that's that army thing right?

PTSD. It's exhausting. And it's not something I planned for. Although I don't think anyone plans for mental health issues. 

I knew about post natal depression (PND) and I was ready for it. Having had a few mild depressive episodes over the years I thought I was probably at risk of it. But having always had a few failsafe coping mechanisms I felt confident that should I be one of the 15% who develop it, I would recognise it, implement my strategies and get help if I needed. What I didn't count on was something very different. Something that I associated with soldiers following conflict and war. Post traumatic stress disorder (PTSD) is not something that I thought I would be adding to my (ever expanding) past medical history list. Although saying that - nor was extensive endometriosis, 25 fibroids and crash c-section. In the words of the mighty Frank - that's life.

In the days and first few weeks following E's birth both the husband and I had totally expected reactions to what had happened. I similarised it to the grief cycle at the time - denial, anger, bargaining, depression and acceptance. I really felt like I went through all of those stages quite quickly, and I remember saying to one of the nurses on day 5 that I had reached acceptance! How wrong I was. But at the time I did feel like that. I'd had a week of recurring dreams of the baby not moving, waking up screaming. I went through all of the emotions listed above. And by day 5 I felt ready to settle in to our new 'life'. Our NICU life. And after that I just got on with it. Of course there were still times of tears, of disbelief and of fully loaded anger, but most days were spent trying to be new parents in our alien world. 

My main difficulty initially was guilt, and as I understand I am not alone in those feelings. Once talking to other premmie mummies its the biggest, nastiest, all-consuming emotion. And it is probably the one that is the most mis-understood by everyone else. The other was grief. Grief for my lost pregnancy and the feeling that I had literally been robbed. These often go hand in hand.

A lucid memory I have of these emotions was a few days in. We had moved from ITU to HDU but it was still early days. When walking out of the room the nurse said to me;

'Why do you always walk around holding your tummy? Are you in pain?'
I looked down - not even realising I was doing it.
'I miss my bump,' I replied.
'But why? look at her? You have a beautiful baby girl.'
I looked back at E in her incubator. Tiny, looking like a mix between a rat and a foetus. I still didn't know who she was. I looked back down at where my bump should be and felt overwhelming grief, and then guilt. Ashamed at my body for not being able to carry her, for literally trying to kill her. Just awful. And those feelings do not go away or get easier. It's harder perhaps, now I love her so so much, to accept that I could not give her what she needed when she needed it the most, that instead of being cosied up inside of me she spent her first few weeks in a plastic box, being blasted with humidity, heat and oxygen. The guilt of course continues, most recently relating to development. Premature babies usually take a little longer to reach milestones. One reason for this (among many many others - of course they are all different) is that their limbs tend to be more extended. This is due to the fact that they should have been in a flexed position for many weeks more than they were - 11 weeks in Emma's case. Yet another failing of my body - contributing to her development. 

No amount of counselling can help I don't think. It does not matter how many people tell me that I actually saved her life, that I have nothing to feel guilty about, that I am incredibly lucky to have a beautiful healthy girl (I know that!). It will just take time. Like grief, it will just take time. The counsellor says you just replay it and replay it and one day you do it less, and eventually you stop doing it. Heres hoping.

What you absolutely cannot have any control over are flashbacks. My first flashback (after the initial baby not moving nightmares) was a shock. Totally unexpected and the start of the PTSD hell. We were several weeks post birth. Well and truly in to our new life in the NICU, and it was fine. We were in our little routine, E was doing well besides her frequent apneas, and we were daring to begin to think of a life after NICU. I had started breastfeeding and it was going well. It was time for a feed and I couldn't find the screen (Yes I know - breastfeeding is nothing to be ashamed of - but in NICU it is different. Busy, noisy, people in and out. You just try to do anything to invent some kind of calm 'normal' situation in which to feed - hence the use of a screen). Off I went in search of the elusive screen. One was in use next door. I had just been looking in the cupboard when I saw the other screen in ITU. I opened the door and asked the nurses if I could pop in and get it. In I went, got to the other side of the room when suddenly I was awash with beeps, dings, more beeps, the sound of ventilators, cpap, vapotherm, syringe drivers, hushed voices, telephones ringing. It took my breath away and I couldn't breathe, suddenly I was transported back five weeks, to a very different place, a dark place, and I knew I had to get out of there. I ran out with the screen, tried to breathe, and tears rolled down my cheeks. And that was the start of this big new mental illness that I continue to battle to this day.

The flashbacks do not give warning. They just come. You can be doing the most random or indeed 'normal' thing and boom - there's a flashback. If you have been talking to me and it's clear that I'm looking at you but it's not actually going in, it is because my brain has just decided to do a little rendition of E's birth, or when I first saw her, or when she first went blue, or sometimes, if it really fancies giving me a hard time, I'll have a flashback of all the 'highlights' of our 7 weeks in NICU. When I'm trying to clear my mind through running, or a long walk - bang - there it is again - it might be the morning before her birth, or the drive to the hospital, or the walk up the labour ward, or The Husband's face - trying to be normal and calm but full of worry and dread.

If you have been with me and I jump out of my skin if I hear a beep that sounds like an alarm clock - it's because that is the sound E's apnea alarm makes, and in those early days of being home she did stop breathing every now and then. Those bloody beeps are everywhere - in pizza express, in starbucks when the panini is ready, and on people's oven timers! 

If you noticed I was truly miserable in the run up to E's first birthday it was because that week was perhaps as bad as being in NICU. Every day leading up to the birthday I could reel off every single thing I was doing, right down to what I was wearing. I scrutinised every detail, wondering if I could have maybe picked up that something was not right, did I miss a warning? Did I miss a vital bit of information that could have changed what was about to happen? I could not tell most people how much I was dreading the birthday. How can you explain that the birth of your baby was in fact the most horrific terrifying day?

I scrutinise everything actually, all of the time. I probably replay the day of the birth every single day. Sometimes all of it, sometimes little details - what was said, the faces, the looks of worry and dread, the silence after she was born, her first whimper some time later, the fleeting first view of her from afar I had as she was hurriedly whisked out of the room. Or I play out how things may have been different, the scan at 3pm had I not gone in, or if they did not successfully resus her after her birth, or if the anaesthetist had not got the quickest ever epidural in and I had been put to sleep. It truly is exhausting, and it seems to take up a lot of my thought process, rendering me mainly useless to participate in any tasks that require deep concentration.

This week I could not watch a video that one of my fellow NICU mummies posted of her time in NICU. I started watching it, heard the beeps and noises of ITU, felt sick, could not breathe, got palpitations, and had to turn it off before it turned in to a full blown flashback. It still did, of course, despite not watching the video. 

And the latest demon to the mix is the good old panic attack. A flashback, plus a mild stressful event like the house getting untidy, leads to an inability to breathe and feel my hands and feet. It's ridiculous behaviour. It's behaviour that prompts an eye roll from an A+E nurse like myself, yet it is now behaviour that I simply cannot control. 

So there you have it, a little insight in to my mind and the daily battle that is PTSD. If you know me, hopefully it explains a few things. If you don't know me, hopefully you now have a little insight in to this cruel illness, and can hopefully help someone you know if they have it too. 

The healer is time apparently - that old cliche :)

Friday, 1 July 2016

The importance of listening

Today we are going to the hospital for E's consultant appointment, and I plan to pop in to the antenatal clinic to try to see the midwives who were there on the 28th July 2015. These two midwives are heroes to me. I can't actually see one of them without welling up - it's just getting embarrassing now!!!

The reason I think of them so very highly is that they listened, and this is something I had struggled with for most of my pregnancy. My own midwife was extremely passive, and had barely raised an eyebrow during any of our appointments, despite my complex history. I'd had various things to ask about during the appointments;

Thoracic pain - 'that's just pregnancy'
Carpal tunnel - 'that's just pregnancy'
Lower back pain - 'that's just pregnancy'
Reduced amniotic fluid on 20 week scan (I called her about this one) - 'don't google it - I'm sure it will be fine'

All she was interested in was;

'Are you planning to breast feed?'
'Are you taking pregnancy vitamins?'

My friend who was training to be a midwife was fuming at the reduced fluid response and told me to ring the hospital. I didn't want to because I didn't want to bother anyone, I felt, for the most part, that I was just being an annoying paranoid pain to my midwife, and my obstetrician was just horrendous. It took me about two hours but I did ring them, was told to go straight in, and they checked to see if I was leaking fluid. Something that I really think I should have been referred to have had checked following my scan? But I am no expert. Anyway it was all fine, the hospital antenatal midwives were lovely, and I left with piece of mind. In a weird kind of way I truly believe that going to the hospital that day, to get the fluid checked, saved E's life.

On the morning of the 28th July 2015 I had an appointment with the practice nurse for the whooping cough injection. E was unusually quiet. I'd been feeling quite unwell for a few days, so I wondered if she was also feeling a bit crappy too. I'd also been up all night with awful lower back pain, so I wondered if she was tired? When I think back to that now I know that the back pain was the first sign that something was wrong - but having been told 'that's just pregnancy' I hadn't even woken The Husband about it. I just took paracetamol and laid on the settee all night. This, at times, makes me angry. I wonder if things would have been any different had I called the hospital in the night? Probably not - but a little more time to prepare myself to have my baby, rather than a few minutes, may well have helped with my mental state (then and now). 

At the practice nurse appointment I told her, 'my baby isn't moving this morning.' Unsurprisingly her response was full of disinterest;
'Oh my midwife used to say go and drink some cold water. It'll be fine.'
I left a bit peeved. I'd wanted a doppler. Thank god I didn't get one! But yet again - that don't care attitude, and feeling like you are being a paranoid pregnant lady freak! I was used to it by then - from my midwife, from my obstetrician, so why not throw the practice nurse in as well! 

I met a friend for coffee and spoke to her about it. I had a cold fizzy drink before my coffee - no response. I knew she would after the coffee. Coffee was my vice during pregnancy. I only had one a day - but it was my treat, And always guaranteed to get E dancing. Only today it didn't. And now I started feeling a bit less of a paranoid freak, and a bit more concerned. The Husband was also texting me every few minutes by that point.

We had one of our fabulous obstetrician appointments that day at 3pm, so I knew we'd be having a scan later. Not wanting to 'bother' anyone else with my paranoid freak behaviour I sat tight. I went home and had lunch and laid on my left side. That would do it, that's what they always say. Lay on your left side. Nothing. 

It just felt 'wrong', I can't even now understand how or why (besides the fact she was quiet), but it felt wrong. I spent about half an hour wondering what to do. Shall I just wait for my appointment?  Shall I ring my midwife? She'll just tell me not to google it, or sigh, or tell me it's normal, and make me feel like crap. I just couldn't deal with her. So I decided to ring the hospital, they were so lovely before, and crossed my fingers that they wouldn't tell me to call my midwife. They told me to come straight up, for 'piece of mind', but they couldn't bring my scan and appointment forward. So I chucked a magazine in my bag, and prepared myself for a boring afternoon at the hospital.

When I got to the hospital and saw the first midwife I was all apologetic, because by that point I was sure that I was pissing everyone off with my paranoia and my 'complex history' - she was so lovely, listened to my story, and popped me on the CTG. Instantly we heard the heartbeat;
'Oh thank god!' Myself and The Husband breathed a huge sigh of relief. What a drama queen! We couldn't keep the probe in place so The Husband had to hold it. We kept losing the trace, because of the probe, we thought.

After around 20 minutes or so in walks the midwife with the lead midwife, and they were looking at my trace. They explained that the times where we lost the trace just meant that I should probably be monitored for a bit longer, but they would take me to the ward to do it.
'Oh it was the probe - it kept slipping.' 
'Mmmmmmm well - probably just best we keep an eye on you, and maybe chat to a doctor OK?' How they were so calm I will never know. In fact when I asked them about it they didn't even know how they managed it! I imagine now how it must have been 'behind the scenes' - crash bleeps going off, theatre being prepped, and all the while I had absolutely no idea! Craziness!

So up we go to the ward, there was some kind of commotion to get me a wheelchair which I thought was completely ridiculous. I insisted I could walk. Once up on the ward I decided I would have to wee before they got me back on the monitoring, so I was faffing around looking for a loo. I'm sure now that everyone was literally going mad because I was so oblivious. Thinking back, once in the room I probably should have clocked that it was full of people, I didn't, I was too busy wondering how I was going to manage another hour or so laid on the world's most uncomfortable couch.

The doctor was constantly looking over my shoulder when asking me what had been happening. I remember thinking 'oh here we go again, someone else who doesn't give a shit!' Until the next words out of her mouth were;

And that was the moment that I knew all was not well.

I knew though, that you needed two shots of steroids twelve hours apart, so for around 2 seconds I thought we still had time, until she looked at me and said 'I know you know what that means Michelle, and yes, your baby is telling us she needs to come now.' Less than half an hour later she was out.

When I'm thinking about that day, going over every detail, every moment, every second (a daily occurrence!) I quite often do a little worst case scenario story. What if I'd waited until the scan? I play that one out in my head often, how that scan would have gone. My psychology guru friend says that's common PTSD behaviour - so at least I'm exhibiting 'normal behaviour' in some area of my life!!!! But perhaps more worryingly, part of my 'worst case scenario' series involves what would have happened if I had called my midwife instead of the hospital. I obviously can't say, I am not her, but I feel I knew her enough to take a pretty good guess, and it kills me. I am so so so thankful to those midwives in the antenatal clinic. True heroes and credits to their profession.

Why is this such a common occurrence? The indifference, the nonchalance, the raised eyebrows, the rolled eyes. Why are pregnant women continually made to feel that they are over reacting? To the point that instead of getting help and advice we would rather just not bother anyone. I've heard so many stories, from real people (not social media), that are so similar;

'I was 32 weeks and I felt like I was in labour, I called and they said I wasn't, I went in and I was.'

'I was 42 weeks and in labour, they would not let me come in, by the time they let me go in it was almost too late and he will now be affected for the rest of his life.'

'I was 27 weeks and in pain, I was not seen, told I was fine, and I gave birth in my bathroom.'

'I was 22 weeks and in agony, I was told to calm down, I gave birth in my underwear'

'I was 41 weeks with reduced movement, told it was normal at the late stages, and I lost my baby.'

This has absolutely got to stop. I know we are an NHS under pressure. I know that most pregnancies and births are problem free. I know that pregnancy is not an illness. But the 'it'll never happen' attitudes really need to change. I know, as an A+E nurse I probably think differently. 'Worst case scenario' is my middle name! It has to be in my job. But really, it should be on the radar of everyone. Otherwise things get missed, and although that might just be a bad day for a health care professional, it is life changing for the victim.