Motherhood - not for sissies

Motherhood - not for sissies

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.

Friday, 15 April 2016

Too posh to push

That old cliche...........That was me apparently, well it was certainly how I was treated anyway. 

In the news today is the tragic story of Tracey Taylor, who, despite repeated pleas throughout her pregnancy that she had been advised that she would need a caesarean section following the birth of her first baby, was strongly 'encouraged' that she could have a safe vaginal delivery. She unfortunately had the same complications as her first delivery, and after one hour of pulling with forceps, the result was an emergency caesarian section. Tragically her baby Kristian suffered severe brain injury and died 5 days later.

Sadly, her antenatal experiences mirror my own. 

When my lovely fibroid Professor (aka GOD) heard the news of my pregnancy he booked me in to his next clinic the following week. Amazing really, considering the wait to see him following referral was several months (felt like years at the time). Aside from putting me on every drug possible 'to keep this baby where it should be', and congratulating The Husband on his 'swimmers' (!), he also mentioned that when the time came to meet our miracle that I would need a caesarian section. My womb at that point had been the subject of three operations in 18 months - the first involving diathermy (burning off) multiple deposits of endometriosis on the outside, the second comprising of 20 fibroids being removed from my lining with what can only be described as a small circular saw..........yep - not a good idea to YouTube the operation you are going to have. The third operation was more of the circular sawing situation, and as part of my recovery to reduce the possibility of scarring, a 'balloon' was blown up inside my womb, forcing it 'open', for 24 hours. Ouch indeed. The result of this was a nasty infection called endometritis, which left me septic and very unwell 3 days later.

So you could say, the old womb had had it's fair share of trauma. Serves it right really for deciding to grow the multiple blood sucking energy draining blighters in the first place. 
GOD felt that due to all the trauma, and also due to the fact that this baby I had managed to conceive was a complete and utter miracle (the same chap had been telling me we would need a surrogate just 3 months prior!) for safety's sake a caesarian would be the sensible option. We reluctantly agreed. It wasn't ideal, but here we were, in a situation we never thought we would be in. We would do anything for the safety of our baby. And we trusted this man impeccably. He had done for me what several doctors either couldn't or wouldn't. He saved my womb, and now, thanks to him I was pregnant.

Due to my complex history I was referred for consultant led care during my pregnancy. Our first appointment was at around 10 weeks pregnant. We were seen by the registrar who listened to our history, questioned why I was on the medication I was taking, raised his eyebrows when he found out who was my fibroid Professor, and concluded with 'I'm going to speak to the consultant.' After several minutes in walks the consultant. An eccentric Indian chap, with a bow tie and a lisp. I thought 'I'm going to like this guy,' and then he started speaking.

'Why did you not come to me for your fibroid removal?'
'Why were they not taken as an open myomectomy?'
'25? I really don't think you had 25........'
'C Section? Why Is Professor M saying this? What is his rationale? I don't think this is necessary at all.'

The consultant made me feel like utter shit. And I left questioning The Husband on how many fibroids I'd had. Had I made it up? Dreamt it up? When were we told? Prof M (GOD) did say that didn't he?

They insisted on writing to Prof M to question his rationale. Prof's response to me was 'I have seen inside your womb, I have travelled this long journey with you. He has not.' Unbelievably, the letter sent to him from my obstetrician - consultant knobhead -  stated that I was eager for vaginal delivery! An outright lie, I'd said nothing of the sort. 

Women do not opt for a c-section 'just because'. Well most don't I'm sure. I was an avid watcher of 'One Born Every Minute', had listened to some lovely home birth stories from one of my friends, and I'd been a birth partner for my best friend twice. I knew the type of birth I wanted. A lovely water birth, maybe with a bit of hypno birthing, in a birth centre, with no fuss, no intervention and no pain relief. A magical moment between me and The Husband. The last thing I wanted was to be without The Husband, sitting on the edge of a cold theatre table, gowned up, while an anaesthetist stuck a needle in my back. Nor did I want to be hiding behind a screen while my baby was born.  I was really disappointed that I had to forget my 'ideal' birth, and had started researching ways to make my planned c-section as 'natural' as possible. Now thinking about the birth I did experience, a normal planned c section would have been heaven!

It was all quite stressful and I wondered why the consultant was so against it. Of course you have the usual 'this is major surgery' stuff to think about, but really after the surgery I'd been through it was lost on me. And if a c-section was the difference between my baby being born safely, and the risk of me rupturing my womb and therefore risking my own life and the baby's, then surely it was a no brainer? I wasn't a silly scared girl worried about my foof being a bit stretched, or being in pain (I'd been in pain for the best part of 3 years....every time my womb had tried to 'give birth' to my fibroids.....) And then suddenly I felt sick. This was about money. I BET it was about money. I work for the NHS myself, I know all about these 'initiatives' and 'targets'. This was absolutely about money.

Following the figures released on the news today I believe this even more. A difference of nearly two thousand pounds between a vaginal delivery and a planned caesarian section. It speaks for itself. 

The consultant didn't stop his knobbish behaviour there. At 25 weeks my scan looked like this:

For those who are not super at interpreting these things it basically shows poor baby E squashed in half of my womb, while the other half is empty, and the cause is a big mountain type structure in the middle, it's scarring apparently. The sonographer was horrified, and told us the images would be sent to the fetal medicine unit at one of the London hospitals. Once at my 'consultant' appointment half an hour later the airy fairy female registrar asked me if I was taking pregnacare, and said my blood pressure was Ok, see you next time.............The Husband and I looked at eachother in confusion:

'Did you see my scans?'
'Erm, are they going to fetal medicine?'
'No, the consultant says they are fine.'
'Erm......what about the mountain?'
'The baby will push it out of the way when she needs to, it's nothing to worry about.'

On the way out the door she then said:

'Oh, you are booked in for a c-section at 39 weeks, we received the letter back from your fibroid consultant. 

I asked if 39 weeks would be OK - Prof M had said 38, just to lessen the risk slightly that I would start labour naturally.

'Nope - it will be 39. It's important she stays in there as long as possible.'

LOL - the irony here is hilarious (on a good day - when I'm not angry, when I'm not upset, and when I can think straight). She stayed in for just 29 weeks, because she was distressed, because she was squashed, because she absolutely COULD NOT just 'kick' through the mountain (the doctors who delivered her could not even pull her through it!). And the result? A crash c section costing about three times the amount of a vaginal delivery. 

While I thank my lucky stars every single day that despite all of this E is absolutely fine, I feel so angry that similar things happen with devastating consequences, such as Tracey and Kristian's story. My counsellor says I'm using my ante natal care as an 'outlet' for my anger. Absolutely not true. I'm angry because my care, for the most part, was shite. During most of my antenatal care, and even post natally after my hugely stressful delivery, I did not feel listened to, I was virtually accused of lying about my history, I felt like I was wasting people's time, and that I was continually over reacting. Of course there were heroes to my story, such as the midwife at the hospital who took my call on the day E was not moving (I'd called the hospital because my named midwives response to everything was 'well that's just pregnancy.'), and the consultant who delivered her, who took the lead when the registrar could not pull her through the mountain. He removed my womb, put it on top of my abdomen, and just sliced it open 'like a butterfly chicken', I was told (!!!), and lifted E out.

The fact is - you put your trust in these professionals, and unfortunately that are not all on 'your side'. I squirm every time the media covers the UK's high still birth rates and question why the rates are high.  In my opinion they are high because of attitudes. Until attitudes change and women are listened to, involved, and advocated, then nothing else will change. 

Thursday, 25 February 2016

Friends for sale

When you get pregnant there is a 'to do list' that is pretty much the same for everyone:

  • Make GP and midwife appointment
  • Start researching ridiculously priced prams
  • Start discussing names with your significant other - usually met with a 'nope, don't like that, he was a knob at school' response to every name you like.
  • Worry about, and google every tiny thing that you can think of that may happen during your pregnancy, and finally,
  • Sign up to an NCT class

Historically, antenatal classes were provided by the midwives at the local hospital, along with an abundance of other classes such as 'parentcraft' and the like. I remember my sister, 20 years ago now, attending a class or two every week when she was pregnant. Now, if you wish to attend the NHS classes your choice (although dependent on where you live) is:

  • A two hour antenatal class
  • Breastfeeding class
  • Back pain session - one hour
  • Breastfeeding class
  • Session for dads - one hour
  • Breastfeeding class
  • Did I mention breastfeeding class?
So, if like me, and many other first time mums, you want to experience the antenatal classes you think you are missing out on then you have to pay. The 'market leader' of antenatal classes is run by the National Childbirth Trust (NCT). I thought it was a charity, so was expecting to pay around £50 or so, boy was I wrong! £250 or so later (paid in three 'handy' installments) The Husband and I were the proud owners of a place on our local NCT class 'september/october babies Egham.' First class - breastfeeding session (!). And lets not pretend I was going to these classes because I felt 'entitled', or that I needed to learn about birth (I was booked for an elective caesarian), or that I needed to learn how to look after a baby, or 'how to be a good parent.' I was going to these classes purely and simply to meet mummy friends, 'purchasing friends' if you like. 

Everyone had an NCT story. My neighbour still meets up with her class 30 years later. My good friend Nicky is close to all of hers, and they have all had their second babies together. My bestie hated hers and never saw them again after the class (she's a bit strange though!!) The Husband's reaction was;

'They'd better not be a bunch of knobs.' 
And I spent many an hour wondering who we would end up with, and hoping that they were not a bunch of knobs..........!!!!!

I think my premmie baby was around 6 or 7 days old when I had the sudden realisation. We'd had a rough couple of days with E, she'd been really sick with sepsis and had stopped breathing many times. We were exhausted, had barely slept, and were now terrified that this tiny foetal baby that we had grown to love was now going to be taken away from us. So why at this point my sudden realisation happened I really do not know. But sitting in the parents room in the neonatal unit (NICU - our new 'home') I suddenly gasped:

'We're going to miss NCT!'

For The Husband this meant nothing. For me it meant everything. 

From then on it was another 'loss', among so many that just added to my bitterness. I couldn't put a finger on why I was so upset. I had friends, and now I had NICU friends. I didn't need more friends. But I was gutted. My counsellor says it's due to expectations. To attend NCT was one of my pregnancy expectations. That, among so many others, had been crushed following the abrupt end to my pregnancy. NCT were great, and refunded me straight away, along with a 'congratulations!' email - another 'congratulations!' lost on me. 

Once home from NICU after 7 weeks NCT was a distant memory as we got on with trying to be a family and look after this (non) newborn. Being home was amazing, and after our two weeks quarantine,  and after several hints and 'encouragement' from the health visitor we started tentatively looking at classes at our local children's centre, in order to start 'mixing' with other mums. The problem with having a premmie and it being the run up to winter is that 'mixing' isn't really an option. The Health Visitor, like nearly the whole 'non-NICU' population, didn't really understand this. We'd had it drilled in to us in NICU that a cold could mean hospitalisation and ventilation - therefore we were now petrified of germs. After ruling out anything that involved toddlers and pregnant people I was left with baby massage, which wasn't the worst thing in the world as I'd wanted to learn some anyway, I had massage oil along with my abundance of 'pregnant purchases', and I wanted to use all these things! 

The Husband took E to the first baby massage as I was preparing a dinner party for 8 people. Yep, I certainly was. I was still at that stage where I believed I could do it all. Well I could actually! We had not been home from NICU long at that point, and looking after E at home was like a walk in the park compared to 12 hour days in NICU, so at that point I absolutely could host a dinner for 8, do night feeds and keep a baby clean and alive! I was invincible.  It's a different story now however! I'm now very much in to 'new mum' mode - wondering when I last straightened my hair and applied make up, and where my next coffee is coming from. Crazy really, given that I can run an emergency department and keep several patients alive (and management off my back!) They don't require me to sing 'the wheels on the bus' repeatedly and talk in a high pitched daft voice though..............

Anyway, we digress. So The Husband took E to the first baby massage, and came home broken. This was the first time we had mixed with 'normal' mums and babies and he had found it really difficult. He had listened to the trials and tribulations of having a newborn, no sleep, crying etc, wishing that we'd had all that stuff to worry about, instead of worrying whether she would survive another night, remember to breathe, and would still be in the same place when we returned to NICU in the morning. E was also the oldest in the class, yet the smallest, and the most like a newborn. While the other babies were wide awake and responsive to their mummies, E was fast asleep for all of it, and wasn't responding to us in the same way at that point. Terrifying when we were constantly worrying how her brain was developing. So after telling me all of this and being quite upset, he then threw in at the end;

'Oh, and they all seem to know each other too, think they must be friends or something.' I knew instantly, and all the bitterness came flooding back;
'They'll be an NCT group,' I spat, overcome by immense jealousy, so I went to dress my table. 

The following week it was my turn to go to baby massage. I was quite nervous, knowing that the mums were all friends, and I was sure they all thought I was a complete weirdo having had a dinner party the week before and therefore not attending (The Husband had kindly told everyone). I was also hungover. I had gone out the night before for the first time since having E, had 3 glasses of wine, and had this horrendous hangover. Clearly my metabolism had changed during pregnancy! So not only did I feel like the world's worst mummy for abandoning baby massage because I had a dinner party to host, I was now hungover! I walked in, with my cabin crew smile fixed on my pale hungover face, and sat down.

The first person to talk to me was the person sitting next to me. A scary 'second time mum' type, also with a 'prem'. He was born at 38 weeks......(!) From then on, all I heard about was her 'prem' baby, and all I wanted to do was squash the complementary cake in her face. I was hopeful that all the mums would be the type of people who I wanted to squash cake in their faces. Of course, it was the complete opposite. The other mums, the 'friend' mums, the NCT mums, were all lovely, and all people I could imagine hanging out with. Every week at the end of the class I could hear them arranging their next meet up, coffee, lunch, walks, and I'd be gutted. Soon I worked out that this group would have actually been my NCT group, this is the group I had signed up to! And I was even more gutted. 

It was at this point isolation was kicking in. We'd been home from NICU a while, so the messages and visitors had dried up.  The Husband was back at work as well as all his other activities. Meeting up with my NICU group was like trying to access Facebook in China - working around colds, germs and hospital visits. So when I got an email at the end of the baby massage course, with the email addresses attached of all the other attendees, I wondered if I was desperate enough to send a group email casually asking to meet up sometime for a coffee. Yep. Of course I was. I cringed when I sent it, but I had nothing to lose.

I lost nothing. I gained 8 friends (16 if you count the babies!)

Now I have my very own 'NCT group.' And guess what. I didn't even have to pay for them!!!! Silver linings and all that.


Sunday, 21 February 2016

Daisy Daisy

Daisy Daisy - my friend at university used to call me that, because she said I looked like the comedian Daisy Donovan and had similar facial expressions. As a care free 20 year old I had no idea that one day I'd be called that again, instead because I'd be milking myself several times a day.

I'd had no breastfeeding versus formula feeding ideals when I was pregnant. I felt quite relaxed about the whole feeding thing. As a formula fed baby myself I knew that it wasn't this big evil devil food that it is made out to be - I had turned out OK! But I was quite open to giving breastfeeding a go, although I'd had a strict word with myself to never get stressed over it. I'd had so many friends who had been truly miserable during those first few weeks, battling with breastfeeding and an inconsolable baby. I was not going to be like that. I was not going to be stressing about milk production. Not me. No way. And then I had a premature baby.

Less than an hour after my 29 weeker was born, having been resuscitated and rushed off to the neonatal unit, me laying on the theatre table amongst this aftermath of chaos, my poor sliced up womb now out on my belly being sewn back together, the neonatal sister burst in; 'Michelle, were you planning to breastfeed? We need to know for the care plan.' My husband and I just looked at each other in bewilderment, each looking to the other for the answer to the question. It was my husband that answered, 'Erm, we think we were going to do a bit of both?' I had no idea at that point the direction that my breastfeeding journey was heading, instead I had images of a tiny baby suckling at my breast the next day!
It starts with the hand expressing. I was shown this technique by about three different midwives until I was shown the correct technique. I managed to get my first lot of colostrum on the second night, 0.5mL if I remember rightly. I felt like a superstar. I still at that point, had no idea about the pump. I had signed the consent for donor milk, which you don't even think twice about, because by this point you know how vital it is that your tiny baby has breast milk. It is only now I sit and think about the donor milk that I feel upset that my baby had another woman's milk in her first few days of life. That was certainly not part of my 'relaxed about feeding' plan. I carried on with the hand expressing for two more days when the neonatal sister mentioned the pump. Because I was so tired from all the medication I was taking, as well as my three litre blood loss, she said she would show me the following day.

The following day we arrived to discover that E had moved from ITU to HDU. Although just two doors down it was like a different world. Different nurses, different babies, different noises and beeps. I felt immediately on edge, as we had just started to settle in to NICU life, and now our routine had changed. I should have felt elated really, E wasn't sick enough for ITU! But now it was all different. I know now that the sullen and stressed nurse who showed me the pump was brand new herself. It was five minutes of 'this is how this goes together, use this setting, turn it up as far as you can manage.' And that was it. I just didn't know better at the time, I really thought that was it, so I just got on with it. I will never 'blame' the nurse for it, but I really think that was one of the main reasons why I always struggled. My milk had 'come in' that day. I think I got about 10 or 20 mLs. I was told that was brilliant, and so I just carried on. It was so painful that first few times, feeling my wounded insides contracting with every pump, I'd often be in tears in the express room.

Expressing every 3 hours, 8 times a day and during the night is really really hard work. In the early days I didn't really take notice of the amounts, I just expressed, almost in a robotic fashion. It wasn't until I was out of that initial NICU 'two week fog' that I started to take notice of what I was actually doing, and also what everyone else was doing, and that's when the 'express stress' began.

The stress starts when you notice the amounts other mums are getting, and then you compare it to your piddly amount in the bottom of the smallest pot. I saw mums with the super duper large pots full to the brim. I also noticed the freezer, jam packed full of milk from the other mums. Why wasn't I getting these amounts? 'Because you are anaemic. Are you eating enough? Are you drinking enough? Are you stressed?' Of course I was stressed, I delivered my baby at 29 weeks, nearly lost her, and now we have to exist in this neonatal unit.........Of course I was stressed, and not eating enough, and not drinking enough. I was also hugely jealous of my husband, who got much longer cuddles and much longer quality time with E, while I was always rushing off to the expressing room.

I started carrying a huge bottle of water around everywhere I went, eating flapjack like it was going out of fashion, smelling like curry due to my intake of fenugreek tablets, and turned the pump up as far as I could possibly manage. Bad move. Doing that results in horrendously cracked and painful nipples, and eventually, mastitis. This meant that when we started encouraging E to latch, it was eye wateringly painful for me. I looked at picture of her while expressing, I expressed by the incubator, I sniffed her blanket like I was told to, I ate a box of 'lactation cookies' sent to me by my lovely friend, but nothing worked.

Twice a week we would get so excited for weigh day, but that excitement then always turned in to anxiety for me. E was doing so well, gaining weight like a trooper, but with every weigh day came an increase in milk requirements, meaning I needed to express more and more, and I was still struggling. My 'personal best' at this point was around 50mL, I was still on the small pot, and it was really upsetting me. My friends talked of a 'let down', of feeling full and empty, but I felt none of these things, and therefore I felt like I must have been doing something wrong.

We continued with the breastfeeding as well as the expressing. E did so well breastfeeding and I was starting to enjoy it, until she decided one day to stop breathing while feeding from me - enough to put a halt to the most successful of breast feeding journeys! I decided then to just concentrate on expressing what I could, and we introduced E to taking the expressed milk from a bottle. She took to it like a dream, and I managed to just about keep up with her milk requirements. I would still put her to the breast occasionally, and I loved it, but was petrified she would stop breathing again.

Once home, and having battled with mastitis twice, nearly resulting in an admission for intravenous antibiotics, I decided to stop expressing. At the time I was excited to stop and feel freedom from the pump, but once stopped I felt really sad. I missed seeing her latched on to me, her little face looking up to mine. But I knew that I couldn't be ill again and look after her, especially now my husband was returning to work. She had breast milk exclusively for nearly 8 weeks, and although I was sad to stop, it is more than I ever imagined I would do when I was pregnant, and for that I'm pretty proud of myself.

This expressing and breastfeeding battle is one felt by many mums of premature babies. Your body isn't expecting to start producing milk so soon, that's the first battle. And then you don't feel all those lovely baby hormones they tell you about, as you have very limited skin to skin time with your tiny baby, and they very rarely latch straight away, so you don't get that natural increase in milk production. You are stressed, confused, bewildered, guilt ridden, tired, and terrified that your baby may not survive. Is it any wonder that so many have difficulties expressing?

I look back and wish I hadn't felt so stressed over expressing, as it seemed to dominate most of my time and thinking during the days in NICU. I also look back and laugh a little, knowing that I went against everything I had felt so strongly about, but how can any best laid plans come to fruition when your baby decides to make an early appearance?!

The Phantom Kick (original blog for The Smallest Things)

The phantom kick. Just when you start to have a good few days, days without flashbacks, days without tears, days believing you are a 'normal' family, and then it happens again. The phantom kick. People keep telling me it is wind. It's not. I know what it is and it kills me every time.

I miss the movements so much because it was something I was never meant to experience - they are also the reason my little girl is alive today.

In November 2014, after 3 painful operations to remove severe endometriosis and a total of 25 sub mucosal fibroids we were told that due to the extreme scarring in my womb lining, along with the rapid regrowth of my fibroids the chances of a fertilised egg implanting were around 0.1% We hadn't really considered or decided if we even wanted a baby until that point, and here we were being told that a surrogate would probably be the sensible choice. We were sent to an adhesion specialist to see what advice he could offer and whether IVF would be worth a shot. In January 2015 I was waiting for day 1 of my cycle so we could begin IVF 1 never came! A determined little bunch of cells had made itself comfortable in my scarred lining!  Although we were permanently on edge during most of the pregnancy, as well as on an abundance of drugs ,as soon as those first movements started it was all so worth it. I could not wait to get snuggled on the sofa each evening, with my hands on my bump feeling and cherishing every headbutt, kick and punch.

And so it seemed incredibly cruel that the universe was to bring my cherished pregnancy to an abrupt end. On the 28th July 2015 my baby was quiet. Breakfast, a coffee, lunch, cold water, fizzy drink and laying on my side did not wake her up. 40 minutes after walking through the doors of the hospital I was in theatre, and half an hour later my baby girl was born via crash section at 29+4weeks gestation. Luckily the skilled anaesthetist had managed an incredibly swift epidural while the theatre staff scrubbed in, so I stayed awake. We did not know at the time, but our baby did not breathe for 8 minutes and her pulse was incredibly low. Once she was stable we heard a small whimper, before she was whisked away to the NICU. It sounds crazy to me now, but once we knew she was alive, and once the atmosphere in the theatre changed to that of relief (the radio went on!), I really thought I'd be taking my baby home in the next few days! I had no idea the journey we were about to embark on, and this is coming from a nurse of 15 years!

Nobody warns you about having a premature baby. As the last in my group of friends to have a baby (and having been a birth partner twice!) I knew all about nightmare births, forceps, meconium, stitches, c-section recovery, breast feeding troubles, yet I knew nothing about premature babies. Surprising really, given that two of my friends had walked their own NICU journey. One of the NICU nurses came in to ask if I had planned to breastfeed while I was still open with my insides showing on the theatre table! We didn't know! We hadn't even been to NCT class yet! And that was the beginning of the surreal NICU journey we had suddenly found ourselves on.

I can't really remember the first time I saw my baby in the NICU, no matter how hard I try. I vaguely remember being told that all her initial scans were normal, and that she had 6 toes! She also had an incredibly swollen leg where they had struggled so much to get her out. It was thought for a small amount of time that she may lose the leg, we didn't care, we just wanted her to survive. The strongest feeling I remember is that I just didn't know her. I didn't know who this tiny foetal like baby was, they kept telling me she was mine, but how could she be? My baby was still inside me. All of my expectations of that 'huge rush of love' were among many of my expectations which were now crushed. I felt nothing but shock, fear, guilt and that I had been robbed of my pregnancy. I could not understand why nobody seemed to understand me and how I felt. I kept getting told 'yes but she's here and she's safe.' I could also not understand why I kept getting cards through the door with 'congratulations' adorning the front, when in my head there was nothing to be rejoicing about.

Once out of ITU and in to HDU, and having battled RDS, sepsis, reflux, apneas and bradycardias, we soon fell in to NICU life. Twelve hour NICU days soon became the daily routine of express, feed, cares, consultant round, feed, express, coffee break, feed, express, lunch break, afternoon visiting, express, and then try to go home without my baby yet again. This is perhaps one of the hardest things, to leave your baby in the hospital. It never got easier, not once in 46 days.

Bizarrely on the day we were due to take our baby home, the day we'd spent 7 weeks dreaming of, I was so upset! We had become institutionalised, and this NICU life was our new 'norm'. The thought of going it alone at home was terrifying! Luckily E has made it incredibly easy for us. She is an amazing baby, and each day I am totally in awe of her, and everything she has battled through. I can't bear it when people say in jest 'it's a hard life!', when they see her sleeping peacefully with a tummy full of milk. Yes it was a hard life for her, and look how amazing she is!

I don't think our NICU memory will fade just yet, we are currently battling through our first winter, terrified that she will get a cold bad enough that will hospitalise her, and every milestone reached sees us breathe a huge sigh of relief. I still have my own internal battles to fight too. The flashbacks and negative feelings have reduced slightly, but we still have a way to go. The hospital have been great, and have provided counselling for us so we can work through our feelings. And I hope that sometime soon those phantom kicks will disappear.

Since discovering 'The Smallest Things' things are a little easier. Reading the blogs has helped no end, and I love to see the great work that is being done. It makes me quite passionate about prematurity awareness and supporting other NICU mums as best as I can. A colleague of mine has recently had her baby at 23 weeks, and suddenly I knew I could turn my experience in to something positive, by supporting her as much as I can.

NICU makes you a different parent I think, all the small things are indeed small things, not worth getting stressed about. The fact that she breathes, eats, smiles and moves is good enough for us! If she cries through the night, so what?! We are incredibly lucky that  she can. If she clings to me all day and won't be put down, so what?! I have a lot of cuddles to make up for. We continue our life like we did in the NICU, one day at a time, each day is a new blessing and our house is full of love, kisses and incredible gratitude.


Seven months ago I had a baby. I did not plan to have a baby seven months ago. I planned to have a baby four and a half months ago. My baby came eleven weeks early. I know that I am not alone, and that there are so many mummies trying to deal with prematurity, yet it can sometimes feel like the loneliest place in the world. 

After discovering an organisation called 'The Smallest Things' I started reading blogs from other parents with premature babies, and suddenly I realised that I was not alone, nor was I alone in my thoughts, as I battled to get through each day without a flash back, or tears, or guilt, or helplessness. Soon I wrote blogs of my own and it helped! It helped me to make sense of what had happened and what I was feeling. It also helped others! I was delighted to read comments from other mums saying they had felt the same, the same things had happened to them, or that my writing had simply made them feel better. My friends who do not have premature babies also said it helped them, that they understood a little more of what happened, that it made them think differently about what and what not to say to me. And so here we are. My very own blog. 

It's for me really. To help with my recovery and to help me to move on. But if it can help others in the way 'The Smallest Things' has helped me then I will be thrilled. It may also, at times, stray away from prematurity, which, when trying to move on, is no bad thing.

So welcome, and thank you for your support.

Love Michelle xxx