Tag Archives: smallest things

Baby Loss Awareness Week – #BreakTheSilence

Each year the 9-15 October is Baby Loss Awareness Week, a time to remember all the babies who died during pregnancy, at, during or after birth. The week provides an opportunity for people to talk openly about baby loss, a subject that for many still remains a taboo, and helps to raise awareness of loss during or after pregnancy.

The Smallest Things, supporting Baby Loss Awareness Week, will be sharing stories, pictures and the words of bereaved parents; remembering all babies gone too soon, offering hope to others and celebrating short lives.

cuv5g63waaiv0b_

We will be taking part in a global ‘Wave of Light’ at the end of the week and ask you to join with us, and thousands of other families across the world, to light a candle at 7pm and leave it burning for at least one hour – Saturday 15 October.

You can be part of a digital “Wave of Light” too. Simply take a photo of your candle burning brightly and post it to social media sites such as Facebook, Instagram or Twitter at 7pm using the hashtag #WaveOfLight.

Together, and across the world, we will remember them; brothers, sisters, daughters, sons  – babies who have died too soon.

tw-cover_babylossawareness

http://www.uk-sands.org

http://www.miscarriageassociation.org.uk

http://www.tommys.org/baby-loss-awareness-week-2016

http://www.bliss.org.uk/News/baby-loss-awareness-week-2016

 

Life After NICU – 5 Years on

It’s been five years since my world turned upside down; five years since the shock and the uncertainty of neonatal intensive care.

The birth of my baby boy at just 30 weeks gestation happened quickly and with little warning. I was numb and the process felt surreal – it happened in a blur, yet I still remember those moments as if they were only yesterday.

My baby was whisked away to neonatal intensive. I had become a first time mum, but I had no baby to hold.

I went home later that evening, lost and empty, my baby left in the care of the neonatal staff.

Smallest Things

Like many parents, our journey through NICU was one of ups and downs; one step forward, two steps back. I quickly got into the routine of the unit, visiting each day and attending to cares where I could. I had a baby, but I did not feel like a mum.

 

Five years on – I am happy to say I feel like a mum!

This didn’t happen overnight though; it can take a long time to recover from the trauma of NICU, time to put the fears and worries behind you and precious time needed to bond.

smallest things

 

At home I felt so alone in my feelings of grief, loss, jealousy and anger. There was a place on my chest that ached, where I longing to have had my baby placed straight after birth. A special place where he should have laid his head and where I should have held him tight.

I was alone in my feelings of sadness and worry. I couldn’t relate to the stories or day-to-day concerns of other new mothers who I met.

And most of all… I dreaded the question – “How old is your baby?”

 

Five years on, the memories of NICU are still there;

I think that they will always be….

….but over time they have faded and don’t seem quite so raw now.

PREM

We have made so many more memories together as a family and knowing that my feelings following NICU are shared by others who have experienced the same journey has helped me enormously.

I no longer feel alone in the feelings of grief and loss, feelings that I felt so acutely after coming home. I know now that those feelings were entirely normal and am thankful to all the mothers who have gone before me and who have shared stories of their own.

Five years on, yes the worry and uncertainty continues… but those emotions are manageable now, becoming part of our every-day life rather than ruling it. Yes, I worry about coughs and colds, the ones that have landed us back in hospital, but I try to take a pragmatic approach, we have got through it before, we have been through worse, and we’ll get through it again.

CpE6LNmWcAAurQ6

Five years on I have an amazing little boy who has been making me proud since day one.

His strength and determination has always been an inspiration to me and as I watch him grow and develop the days of NICU seem further and further behind us.

 

download  If you believe that mothers & premature babies need more time together after neonatal intensive care please take a look at our PETITION to extend maternity leave for mothers of babies born too soon  – https://goo.gl/KeLrVv

Premmie Mum: Things I Want you to Know

Preemie mum, there’s a lot I could tell you; so much I’d like you to know.

I’ve been there, a NICU mum; sat in a state of shock beside the incubator. So I know that the last thing you need is more information or ‘helpful’ advice when all you really want is answers…

Why did this happen? What could I have done? When will I hold my baby? Will my milk come in? Am in pumping enough? Will I bring my baby home? When will my baby leave hospital? Will they be okay?

Smallest Things

These  are the questions that fill your mind as you get to grips with the world of neonatal care, and as much as I’d like to, I simply cannot answer the most important ones and sadly the answers to some of those questions are never known.

What I can tell you though (and believe me when I say it’s just as important) is this –

  1. Take time to notice the little things; with emotions running high you can miss precious moments. Remember the feel of your babies hand as they grip your finger tightly or the shape of their tiny features.
  2. You are not alone. There is a community of parents who have been before you and will be ready to support and advise. Wonderful staff will help you through the most difficult days and your baby will become your strength.
  3. We are ALL mothers. To those who have lost babies we will always remember them and say their name.
  4. Please let others know how you’re feeling. It can be scary to share your emotions, but by letting friends and family know your thoughts they can empathise and better support you.
  5. Ask for practical help. People may ask ‘what can I do to help’ and you may like to share our top ten list of ways to help prem parents in hospital.
  6. Mum knows best. Yes, it’s true! You know your baby better than anyone. Never forget that or be afraid to speak up.
  7. Take time to rest. Yes, I know! It’s easier said than done, but really it is so important for both you and baby.
  8. Be preemie proud! Oh so proud! You will see your baby accomplish things that most parents will never experience. Your baby is learning to breath, learning to co-ordinate their suck reflex and is developing right in front of your eyes. How amazing is that?!beautiful
  9. Preemie mum, know this – you are amazing!
  10. Preemie mum, remember this – you are doing great x

download

If you believe that mothers & premature babies need more time together after neonatal intensive care please take a look at our PETITION to extend maternity leave for mothers of babies born too soon  – https://goo.gl/KeLrVv

Like what you’ve read? Then click the symbols to share on Twitter and Facebook!

Launching! Recognising the Mental Health needs of NICU parents

images (1)And once the storm is over you won’t remember how you made it through, how you managed to survive. You won’t even be sure, in fact, whether the storm is really over. But one thing is certain. When you come out of the storm you won’t be the same person who walked in”.

Haruki Murakami

Parents shouldn’t have to weather the NICU storm alone. Yet we know, after discharge from hospital, many of them do.

That is why The Smallest Things is launching a new mental health campaign, addressing directly the lack of understanding among primary healthcare professionals of the mental health needs of parents after premature birth.

Having a baby in neonatal care can test you to your very limits. The uncertainty, the shock; the highs and the lows.

As your body recovers from the physical realities of birth, your mind tries to piece together the medical world that surrounds you. People would often ask how I managed to get through our time in Neonatal Intensive Care; “You must have been so strong”, people would say, “You must have been so brave”. The truth is I was neither of these things. Like thousands of parents, I simply had no other choice.

Lost in a sea of emotions, the rituals of NICU soon took over. Expressing, traveling, incubator nappy changes, kangaroo care and hours and hours of watching and waiting. Your life becomes neonatal care and in the agony of leaving my baby each day I would turn to the advice of Piglet and Pooh – “How lucky I am to have something that makes saying goodbye so hard.” AA Milne.

IMG-20130624-00628

The sun was shining on the day we left the hospital and I still remember the feelings of relief and hope for the future. The days of NICU would soon become a distant memory – or so I thought.

I quickly came to realise that our journey as prem parents had only just begun, only now the safety net of the neonatal unit and of other NICU parents who ‘got it’ had gone.

Questions about how I’d had made it through NICU became redundant – I’d made it this far because I had to. But I was still battling; just about holding on, trying to make sense of all that had happened. Rather than well-meaning comments from my health visitor such as “I bet you’re glad you’re home” and “it must have been difficult” (as well as other ill-informed comments about expressing, breast feeding and corrected ages), I was crying out for someone who understood. Someone who knew and would tell me that the overwhelming emotions of grief, loss, guilt and jealously, the anger, the anxiety and worry were completely normal for a NICU mum.

PREM

The support for parents following neonatal intensive care is limited and The Smallest Things have received countess examples of where primary health care professionals such as GP’s and health visitors simply do not understand the needs of premature babies and their families. And yet, we know that more than 40% of mothers go onto experience post-natal depression following NICU, and that more than 50% show signs of anxiety and post-traumatic stress disorder. More must be done.

In launching our new mental health campaign, The Smallest Things will call for GP’s and Health Visitors to be trained to recognise and support the needs of parents following neonatal care. Will you help to raise awareness too?

download

SIGN NOW! https://www.change.org/p/the-nursing-and-midwifery-council-gps-and-health-visitors-please-recognise-the-mental-health-needs-of-nicu-parents?recruiter=83525408&utm_source=share_petition&utm_medium=email&utm_campaign=share_email_responsive

Just a Little Longer Please: Time After NICU

10 weeks early, my little baby, is with us far too soon.

I’d like to keep you safe inside,

Just a little longer please.

 

The nurse showed me your tiny face, wrapped in a blanket tight.

I reached out to touch your cheek, a mothers instinct strong.

I couldn’t touch you as you couldn’t stay, intensive care was needed.

I longed to shout as I watched the team whisked you away,

“just a little longer, please!”

Your little eyes were open, when we met in neonatal care.

Terrified I reached inside the incubator walls;

a tangled mess of tubes and wires, stick thin limbs so small.

Your tiny hand gripped my finger tight.

I prayed – fight my baby, fight.

 

How could I leave my baby?

I am empty now inside.

Emotion overwhelmed me, consumed with grief and loss.

How can I leave my baby – just a little longer please.

 

6 long days I waited, to hold you in my arms.

Lines and tubes obscured your face, the monitor alarmed.

Ding, ding, ding the ringing went, our time together up.

I whispered to my baby – “just a little longer please.”

3 hours became a golden rule, expressing on the clock.

Now we’re allowed kangaroo cuddles, time just for you and me.

But once again, three hours are up, is it really pumping time?!

I’d hold you close and feel your warmth, sometimes our only cuddle of the day.

I look to the nurse, she looks to the clock – “just a little longer please”.

 

Weeks and months in neonatal care, our journey has been immense.

You’ve grown and you are stronger, but my baby you’re still so small.

Home we go at eight weeks old, your due date still not reached.

 

At home we can be together, no monitors or alarms.

For the first time in forever I begin to be your mum.

I feel the pain we’ve been through, I stop to take a breath.

I realise now, what other NICU mums will know, my journey has just begun.

smallest things

More hospital trips and appointments,

Corrected age explained.

Coughs and colds take their toll on little preemie lungs.

 

My boss has started calling, return to work is near.

My maternity leave is over, but please it’s just too soon.

We’re only now just bonding and my nerves are much too frail.

It can’t be time to say goodbye, please just a little longer.

Just a little longer please.


download

If you believe that mothers & premature babies need more time together after neonatal intensive care please take a look at our PETITION to extend maternity leave for mothers of babies born too soon  – https://goo.gl/KeLrVv

Like what you’ve read? Then click the symbols to share on Twitter and Facebook!

A journey through neonatal care

Alexa was born at 25 + 2, weighing 588g on February 19th 2014 delivered by emergency C-section due to severe early onset preeclampsia.

I read those phrases so many times; in Alexa’s notes and on whiteboards and I repeated it so often when we were in hospital. It was what defined her and defined me. In writing it now I realise that it no longer matters. No-one asks me that anymore and I rarely think about it. And what a relief that is.

alexa_Feb

Before she was born

I was diagnosed with early onset preeclampsia when I was almost 24 weeks pregnant. Like many other premature baby stories, it was a routine GP appointment that ended at hospital.  My normally unflappable GP looked concerned when she took a urine sample and my blood pressure. Then she called the hospital to say I was on my way and told me to go home and pack my bag. She told me to hurry because I was at risk of a stroke. The next morning the consultants were saying I wouldn’t leave the hospital before the baby was born. I remember thinking ‘but it is February what am I going to do in this bed until June?’  What they meant was that the baby was going to be delivered early.

Eight days later I started violently vomiting every 15 minutes, I had heartburn and I kept going to the loo. My blood pressure soared to 220/I can’t remember the bottom number when someone declared an emergency C-section. Nurses were panicking about cannulas and not being able to find veins. Someone waved a consent form urgently for me to sign. I remember my husband’s gorgeous and somehow calm face in a set of scrubs. I was surprised to hear a radio in the operating room. I fell in love with Amy the anesthetist. And then it was over. My husband saw our daughter. I was wheeled away. I was at risk of a fit and because of this I had to stay in hospital for ten days post-delivery.

A labour ward is hellish when your baby isn’t by your bed. There are happy joyous parents everywhere with healthy full term babies. I was terrified, disorientated and really upset.  I remember a kind of solidarity with the other neonatal unit mums, we would acknowledge each other shuffling baby-less from the labour ward to the neonatal unit and back and someone even managed to joke that the bouncing full term babies on the labour ward looked like seven year olds to us.

Being discharged

I wanted to leave the torture of the labour ward. I just wanted to go home. And once I got the all clear I rushed to pack up my room and got ready to go. But we left the maternity ward without a baby in a car seat. Just me, my husband and my suitcase. And it was too sad. I came home not pregnant anymore but there was no baby. We came home dropped my bags and went straight back to the hospital.

The early days

Alexa was tiny and skinny with dark brown skin. She didn’t look like the cuddly chubby babies we are programmed to expect. She looked weak and frail and was surrounded by a lot of unfamiliar equipment. I was shocked and frightened when I first saw her. At the start I was really confused and didn’t recognise her as my baby, I was afraid to touch her and I even panicked when some weeks later it was suggested I hold her. And I felt such a heavy burden of guilt that I had done this to her; my body had failed her. I had let her down already, before we had even started.

The (incredible) neonatal team at UCLH helped me move passed this and many other crazy and difficult thoughts and helped me find a routine. I would spend my intensive care days by her incubator, watching her, talking to her, singing to her, holding the tiny syringes of milk (she had 1 ml every hour), changing her miniature nappies and loving every tiny inch of her.

Medically

Alexa’s lungs were not good. We were in intensive care for 10 weeks not including a bounce back from a high dependency ward. She was on every breathing machine on the unit. The team tried to take her off the ventilator five times. With the help of steroids she went from the ventilator to lo-flow and then when the steroids finished she went right back to ventilator.

And in March 2014 she got really sick twice. Both times she was paralysed and sedated on an oscillator.  I will never forget how calmly and diligently the consultant led the team on both days, how steadily and respectfully everyone worked to understand what was happening. No-one one raised their voice or lost their temper or apportioned blame. People fetched us stools so we could sit and told us when to eat. I think of both of these days quite often. Primarily with relief, love, joy and gratitude to the team who saved our daughter but I also am still taken aback by how gracefully they managed such impossible pressure, stress and responsibility.

Alexa had Retinopathy of Prematurity and needed laser surgery at Great Ormond Street to prevent blindness.

She got stuck on continuous CPAP for months. There was talk of a tracheostomy. CPAP is really noisy and it blocked her vision, I thought how on earth is she going to develop with this on her face and I was convinced it was going to damage her nose.  It didn’t impact her, her development sessions are always a joy and her nose is perfect.

Alexa June

Emotionally

I would love to say that we handled it gracefully, that we were so strong and composed. But my husband and I were both a mess. I cried and cried and cried. It’s a strange twilight/ no-mans land when you have a premature baby: a) you’re supposed to be pregnant but then b) you are on maternity leave but then c) your baby doesn’t live with you. You wait and wait and wait for life to begin. I think I was jealous of women everywhere; pregnant women, women pushing prams, women with children, women going to work.. I went from being a confident and friendly person to a jittery and scared one who second guessed herself and constantly washed her hands.

People in the hospital used to say that mothers of premature babies go through a grieving process. I dismissed this at the time because Alexa was alive I told myself. And then I read Joan Didion’s ‘The Year of Magical Thinking’ about the death of her husband. She quoted Gerard Manly Hopkins:

‘I wake and feel the fell of dark not day’.

That was exactly how I woke up in those early days. It is a type of grief.

We were in hospital for seven and a half months and over this long course of time the shock, disorientation (and grief) of having a premature baby was replaced by the worry and sadness of being the mum of a sick baby. As she got bigger leaving her every evening got harder and harder. Maternal instinct is visceral and separation from your child is intense. Every night I woke up several times panicked soaked in sweat asking my husband where the baby was. Every night he would calmly say the same thing ‘It’s ok love she’s in Nursery 4, ‘XX’ is the nurse we called before bed and she’s fine’. This night-time ritual made me feel crazy.

And it didn’t stop until about a month after she came home.

The Expressing Room

The ‘expressing room’ was three plain blue chairs lined up in front of three blue expressing machines. It had bright florescent lights, no TV or radio and no privacy. And it saved my sanity. I poured my heart out to women in there and they to me. It was a counselling and therapy room where we willed each other on and told each other we could manage it.

The expressing itself was awful and amazing. A whole world of strangers talk about your ‘milk production’; nurses, consultants, feeding experts, they all talk about it to you, to your husband and to each other. You get over the embarrassment of it pretty quickly. There is not enough milk. Can you make more milk? She has no milk. She has so much milk. And if the milk is pouring out of you it’s a lovely way to focus and feel useful. But if it’s not then the whole thing becomes a very unique type of torture. Every 2-3 hours you hunch over the hideous expressing machine with an empty bottle not filling up. And the babies so desperately need mum’s milk to survive and fight on. There were a lot of tears. I ate everything anyone mentioned might help. I think I drank over 4 litres of water one day (this hurts your bladder A LOT). One Caribbean mum gave me a potion made in homes in Ghana that she got in Brixton and we cooked it up in our Hampstead kitchen. Eventually after 6 weeks of this, I got a prescription – and low and behold ‘mum’s milk’ came pouring out. We filled up our freezer for her.

Through it all the solidarity and strength of the mums in the expressing room kept me going. The support and the laughs. If I listed the jokes they wouldn’t be funny but there were tears of laughter on some days. And other days there were big wet tears of sadness and fear and frustration.

Family life on a neonatal unit

We were in hospital so long we had a lot of the usual baby ‘firsts’ with the neonatal team; a bath, sitting in a bouncer, tummy time,  tasting puree, a walk with Alexa in a pram.  It could have been awkward or strange but the Neonatal team made these moments fun and full of hope that we were able to do them.

Alexa July

I would spend hours with her sleeping on my chest. We read ‘The Wind in the Willows’ and ‘The Velveteen Rabbit’. We sang country songs (the poor nurses..). The hospital play specialist would come and see Alexa and me on Friday afternoons. To quote her, she would help me ‘bring the world to Alexa’. I loved our chats. Amidst the worry and heaviness of having a child in a high dependency unit, she reminded me of the joy of being a parent whose job it is to explain and explore the world with my daughter.

Nurses, consultants and registrars all became an extension of our little family of three. There was so much love in that ward, my heart still stops a bit when I think of it.

Leaving the Neonatal unit

While we were in hospital I developed an unhinged relationship with a pamphlet called ‘the pathway to home’. We never seemed to have it nor were people even mentioning it and the hallways of the hospital seemed lined with smiling parents reading it.  We had been in hospital for six months when it arrived at Alexa’s cot. And then suddenly we were planning for home, what we needed to do, what the hospital needed to do, who was involved, how to get ready. We had a discharge planning meeting with about 14 people giving input. Oxygen was installed in our flat (what?!) and friends sent me baby lists.

We finally left UCLH on a Friday night with our baby (and her oxygen tank) in a car seat. We had made the same journey twice a day for seven and half months to visit her and now she was making the journey with us. The cab driver went via Camden. I remember looking from gorgeous little Alexa and her oxygen tank to the Camden Friday night partyers and being jolted by the juxtaposition of it. I wanted to stick my head out of the cab and shout ‘Have Champagne!!! We’ve been in hospital for SEVEN AND A HALF MONTHS AND WE ARE FINALLY GOING HOME!!!

Early days at home

Champagne on the streets of Camden or no, we were not prepared for what it was like to bring Alexa home. We had become completely institutionalised and used to having a team of nurses and consultants around to help us and answer our questions and concerns. Alexa came home on a feeding tube, on oxygen, and I don’t know how many permutations of her medicine schedule we tried in order to line everything up correctly so that we gave the right gaps for the right medication and had some time for both of us to lie down. The seriousness and responsibility of it was terrifying. Her reflux meant that within 20 minutes of being home she vomited all over our cream carpet in the lounge. (I still smile fondly at that stain).

The winter was hard. We had to be really careful to avoid coughs and colds. And you can’t go to ‘Mini Mozart’ with an oxygen tank. It was lonely. And like any other working woman who has a baby I found it strange being at home a lot. But she was IN OUR FLAT! The joy of having her cot at the bottom of our bed and waking up with her in our room never got tired. And life got easier. The feeding tube came out quite quickly. The medicine reduced and then stopped. Home oxygen can be annoying and things take longer but it is manageable and before I knew it I was slipping the O2 tank onto my back and off to the park answering (with a pained smile..) for the millionth time the nosiness of a stranger who wants to know what happened to the baby.

And then they weaned the oxygen. The first time we took her off for 30 minutes; my husband starting skipping round the flat from room to room with her laughing and shouting ‘look at this, look at this’. It was so easy to move her without the wires and the portable tanks. And we saw those gorgeous little cheeks and face tube free! It was a slow slow wean and when she caught an inevitable bad cold (twice) we went to A&E and back to full time oxygen. But in May 2015 after a sleep study, she came off oxygen completely.

Now

Alexa is now a happy, chubby, curious, joyous toddler. And so we are a happy joyous family of three. Our life is happy and it is healthy.  We do normal things. We go to the playground, she plays with her friends and she sings and dances at bilingual beats on Wednesday afternoons. I have even returned to work.

alexa 2016

And every now and then when I see Alexa doing something ordinary and every day my heart bursts with relief and happiness at the normalness of it and the recognition that the pain and worry of our start is behind us. I look at her and I realise that we made it, the three of us, we have everything and we are happier than I ever thought we could be.

____

With the support of her local MP Tulip Siddiq, Lauren is working to change the current UK legislation to make maternity leave longer for mothers of premature babies. 

SIGN NOW!  If you would like to support the campaign to give mothers more time with their premature babies, please SIGN the Smallest Things petition calling upon the Government to  “Extend Maternity Leave for Mothers of Premature Babies”

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.

Emma NICU

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 Emma 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, Emma 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 Emma, 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 Emma 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.

breast feed

Twice a week we would get so excited for weigh day, but that excitement then always turned in to anxiety for me. Emma 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. Emma 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 Emma 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.

nicu

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 Power of Storytelling

Each and every one of us has our own personal story. Our stories of course may be quite different and our experiences unique, but for parents of premature babies our journey into parenthood will overlap and our experiences may be reassuringly similar.

For the last year I have shared my own story of premature birth and of a journey that does not end at the NICU door. I have written about first holds, kangaroo cuddles, grief and loss. I have written about the sudden interruption of pregnancy, the uncertainty of the unit and the sights and sounds of neonatal care that stay with you long after you leave. I write to raise awareness; but I also write because of those who have been before. For the parents who have already shared their own experiences of NICU, whose stories I found when I needed them the most. Yes, each story of neonatal care will be different, but the similarities are often striking and this discovery can bring great relief.

beautiful

Storytelling can be an extraordinarily powerful tool – with stories that offer hope, humour, those that make us think or give us courage. Stories which help us to negotiate challenging times, to give us strength and to shine a light on the way ahead. Stories can bring us comfort and let us know that we are not alone. They can educate and reveal a hidden world. They can raise awareness and offer support.

Have you read a story that has helped given you comfort or hope? Have you got a story to share?

We are always on the lookout for stories of premature birth, neonatal care or life beyond (approximately 550-800 words) and we invite you to share yours.

Email Catriona at smallestthings@yahoo.com

The Phantom Kick

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 investigations………day 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 head butt, 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 Emma 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!

Emma NICU

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

Emma with mum and dad

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 Emma 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!

Emma

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.

Michelle

______________

If you like to help raise awareness and support other families through neonatal care please do share Michelle’s story – Facebook, Twitter……

If you have your own story to share, contact Catriona at e. smallestthings@yahoo.com

Winnie the Pooh – the day I became a mother

 

Winnie-the-pooh_the-smallest-things

The first time you leave your baby can be a big moment for new mothers; this little person, a new life you have carried, part of you in someone else’s care.

I remember leaving my baby for the first time.

The memories, although hazy through shock and disbelief, are still ever present.

He was only a few hours old and I did not leave him with a trusted family member of friend.

I did not cuddle or kiss him goodbye, knowing that I’d only be gone a short while.

Instead I would be gone until morning time.

 

I held his tiny fingers through the incubator portholes and whispered ‘see you soon’.

I had not held him in my arms and my body ached from labour.

I would leave my tiny baby, born too soon, in the care of strangers, not knowing what the morning would bring.

NICU day 3 | Lines & Wires

I was empty and without my baby to hold.

I was numb and grieving for the baby I had left behind.

 

Neonatal intensive care, a world of medical devises and babies housed in boxes. A place of uncertainty and of up and downs. An environment where you are tested to the limit as you watch your baby fight and grow.

In neonatal intensive care I cared and tried to provide for my baby. Expressing became ingrained as part of my new life and pumped breast milk became like liquid gold.

When the time came I was able to hold him in my arms, but tubes and wires obscured his face and prevented me from holding him close.

I longed to kiss him, to whisper ‘I love you’. My heart ached for the baby I so desperately wanted to hold tight to my chest.

He was in the care of an exceptional medical team and wonderful nurses cared for him 24 hours a day as if he were their own. Their kindness made leaving him a little more bearable each day, but behind the safety and warmth of his incubator I was a mother, but he was not really mine.

For weeks I would ask permission to hold my own baby; on occasions I would be told I was holding him too much.

Nappy changes were done on a strict timetable and feeding was scheduled around charts and numbers.

The unit where my baby slept was behind security doors and rigorous hand washing became the norm.

I cared for my baby in hospital, but he did not feel like mine and I did not feel like a mother.

 

We were unsure of how to celebrate his fragile birth. Cards of congratulations trickled in slowly as we tentatively announced his early arrival.

Finally, we were at home, that first magical night together. I’d been a mother for months, yet now I was on my own!

We held a naming ceremony some weeks later, a way to celebrate a new life, to introduce him to the family and to say ‘He’s here!’

I searched high and low for a quote that would sum up our journey and the way we felt about early starter. I eventually found it –

“Sometimes” said Pooh, “the smallest things take up the most room in our hearts”….

I had become a mother.

smallest things 

 

From one NICU mum to another…

Hello, I’m Francesca, and my little boy is Harry-this is our NICU feeding story:

Harry was born at 28w4d whilst I was on holiday in France, weighing in at 2lb13oz. He had no sucking reflex due to his prematurity, so was enteral tube fed via his mouth on a continuous pump (standard for prems in France) for the first few weeks of his life. When we were transferred to a UK hospital, when he was transferred to a NG tube and was syringe fed every few hours.

harry NICU

During the tube feeding, I expressed using the hospital pumps. This was something I hadn’t really thought about, and something I had to “learn on the job” thanks to language barriers, and a slightly different approach than nurses here would have! In addition to my milk, during our time in France he was also fed on donated breastmilk. This was because the hospital would not accept milk I’d expressed outside of the hospital. Unfortunately due to Harry’s prematurity, he was in a high-dependency hospital over an hour from where I was staying, so there were points I was expressing at night whilst away from Harry, and sadly had to dispose of the milk- very demoralising!

Harry was NG fed until he was ready to be fully established on breastfeeding, which was around five weeks before his due date. We had three full days of breastfeeding at the neonatal unit, to ensure he had completely got the hang of feeding – only then was his NG tube removed. Although I was exclusively breastfeeding, our neonatal department wanted to ensure he could also take a bottle, to ensure we could administer medications that were mixed into expressed milk – we found this less stressful for Harry, rather than syringe administration of medication.

Francesca and Harry

Unfortunately, due to further medical complications, Harry needed to be transferred solely onto a premature baby formula about 6 weeks after leaving neonatal, so our breastfeeding finished rather abruptly. I was quite upset by this and did worry about our bonding, but thanks to all the skin-to-skin care we’d had during our neonatal journey, this was not a problem.

Due to the traumatic birth we had, I suffered PTSD (Post Traumatic Stress Disorder), and have since undergone CBT (Cognitive Behavioural Therapy) and surgery, but thankfully Harry will have no recollection of his interesting start to life. But we will explain his incredible journey to him when he’s older, as we are so proud of our little fighter that we nearly lost. Harry is now a happy, healthy 18 month baby, who loves his food and is completely “normal” in his feeding.

Harry - Feeding

NICU and the neonatal journey is a tough one, and phrases as “you’re lucky you got to meet your baby early” do not help! But from one Mum who has come out of the other side, please hang in there. Be kind to yourself, and make time to recharge wherever you can. You are doing a fantastic job, and you’ve got a strength that keeps you going, that you didn’t even know you possess!

_________________________________

CYXlNzmWcAARASi

If you’d like to share your NICU story with The Smallest Things, just drop us a line! Contact Catriona at e. smallestthings@yahoo.com

Our Top Ten New Year Resolutions!

  1. smallest thingsMore guest blogs! We love hearing your stories and sharing experiences is a great way to
    raise awareness and support other NICU parents. If you’d like to share any part of your story please do get in touch with Catriona at smallestthing@yahoo.com
  2. In 2016 we’ll be focusing on support for parents following neonatal care.
  3. 15,000! Before we hand in our petition in the spring we’re aiming to reach an amazing 15,000 signatures – with your help we can do it! If you haven’t already signed our petition to extend parental leave for families affected by premature birth please do and don’t forget to encourage friends and family to sign too!
  4. To shout about the Smallest Things, raising awareness of a journey that does not end at the NICU door, speaking to hundreds and thousands of people.
  5. Dads Do NICU too! In 2016 we’ll be including 11351121_1605702686352890_8034685534623854660_n (2)more stories about fathers of premature babies and their journeys through neonatal care.
  6. To provide a community space for Smallest Things supporters, professionals and parents on our Facebook page. Our Facebook profile is growing everyday and we hope to continue posting news, stories and information all with the aim of raising awareness.
  7. To take our petition to Parliament!
  8. To speak with health visiting teams, discussing corrected age and the psychological needs of families post NICU.
  9. More MPs! We’ll be speaking to many more MPs this year, asking them to champion the Smallest Things and needs of NICU parents in Parliament.
  10. To set up a national network of volunteers! 2015 was a great year for the Smallest Things, but to make 2016 even bigger we need your help! We will be launching our volunteer’s network in February… watch this space.

ST reception

Smallest Things in 2015!

As we begin to set out our plans for 2016, make our New Year resolutions and look forward to what this year will bring, we reflect for a moment on what a year 2015 has been!

2015

Launched in June, our petition to extend statuary maternity leave has reached more than 11,000 signatures and has received national press coverage both in the papers and on the radio!

Our Facebook page has continued to be a hub for all things Smallest Things, with over three and a half thousand supporters reaching a wide audience every day – lets keep reaching thousands more in 2016!

On the blog, ‘Dads Do NICU’ was one of my personal favourites; highlighting the journeys taken by fathers and bringing to the foreground their caring role in NICU. Kangaroo cuddles and skin-to-skin with dads are some of my favourite pictures of 2015 and are worth another look!

Our most read piece, and by quite some way, continues to be ‘PTSD: The hidden cost of NICU’. If raising awareness of the lasting emotional impact of a premature birth is one of our aims, then this article is certainly helping to achieve that. Recent comments on our Facebook page, left by mothers years following premature birth, are a real eye-opener and sum up the vital need to raise awareness and the urgent need for more support for parents of premature babies. You can read their words and add your own here.

ST reception

Taking The Smallest Things to Parliament! In September Croydon North MP Steve Reed visited the Croydon University Hospital neonatal unit and is now championing the needs of premature parents in parliament. Speaking in a Westminster Hall debate for World Prematurity Day, Mr Reed raised The Smallest Things campaign to extend paid parental leave and highlight our 5 reasons why this change is needed. We were delighted when Health Minister Ben Gummer MP stated he would look into this very issue. Mr Reed also hosted a Smallest Things reception in Parliament and it was a great pleasure to meet many of you there. Mothers Ije and Sarah spoke movingly about their own experiences of premature birth and their ability to return to work once they were home. Sarah spoke moving about her twin girls Eva and Charlotte and their story remains a powerful reminder of why this campaign is so important.

The end of 2015 has ended on a high! With great surprise I was humbled to find myself alongside other amazing women long listed for the 2016 Tommy’s Baby Charity Mums Voice of the Year Award. It is a fantastic recognition of what The Smallest Things aims to do; giving parents a voice, an opportunity to share our experiences and to say loudly that the NICU journey does not end at the NICU door.

Saving perhaps the best til last! On the 30th December we had an opportunity to speak to millions of Radio 5 Live listeners as Sarah spoke about her beautiful daughters Eva and Charlotte and I explained the need to give families of babies born too soon more time through extended parental leave.

With your help and support we have made The Smallest Things matter in 2015 – thank you!

Catriona

radio 5 live

Sarah Miles and Catriona Ogilvy Radio 5 Live

 

Tommy’s Charity Awards 2016: Mum’s Voice Award

MumsVoiceAward

This afternoon I received an unexpected email with a lovely surprise… Tommy’s, the baby charity, had got in touch to tell me I have been longlisted for the 2016 Seraphine Mum’s Voice Award!

The Mum’s Voice Award celebrates mothers who have spoken out about their own experiences  and have given hope to others; and I am honoured (and truly surprised!) to be included alongside so many other remarkable and amazing voices.

The neonatal world can often feel small to parents, an isolating experience where conflicting emotions last long after NICU. Through my own story I have been raising awareness of a journey that does not end at the NICU door, highlighting the ongoing needs of parents, writing openly about Post Traumatic Stress Disorder and campaigning for a change to statutory maternity leave for mothers of babies born too soon.

I have been overwhelmed by the response to my Smallest Things site, not only when mothers tell me they no longer feel alone with their thoughts of loss, grief or guilt, but by the amazing response to my petition calling on Government to extend statuary maternity leave for preemie mums, which now has over 11,000 signatures (Please do sign if you haven’t done so already!!)

Being shortlisted for the Tommy’s Mums Voice Award would be an incredible opportunity to raise the profile of The Smallest Things further, to raise awareness of life after neonatal care and to push further for the changes needed.

If you would like to help me reach the shortlist, all you need to do is send an email to mumsvoice@tommys.org, with the subject line Smallest Things, along with a couple of sentences or so on why you think I should be shortlisted.

The closing date for emails is Wednesday December 23th, so please do spare a minute or two in amongst the Christmas wrapping to help the Smallest Things reach the Tommy’s Award Ceremony in March!

 

 

Top 10 of 2015!

top tenA huge thank you to everyone who has written, contributed, shared and read; each and everyone helping us to raise awareness in 2015!

So, here goes…. Our Top Ten most read posts of the last 12 months!

At 10. Our Story “In those first few days I was lost and empty; the emotional impact of leaving hospital without a baby in your arms is hard to describe…..” 

9. Starting School a year too soon “He continues to meet all his milestones, keeps up with his peers and fills me with pride – yet he will still start school a whole academic year too soon. He’s ready and he’s not ready.”

8. 30ml Mum  “Everything revolved around expressing. Was I doing something wrong? Why couldn’t I produce more? Other mums would enter the expressing room and fill bottle after bottle – I couldn’t even get half way.”

7. Too soon, Too early: This Family needs more time  “I felt conflicted and confused. I was grateful that she was well enough to come home, but I couldn’t help feeling cheated out of time and then felt guilty for feeling that way.”

6. Extend Maternity Leave for mothers of premature babies “…more than a quarter of my maternity leave was spent visiting my baby in hospital and according to Bliss, like me, 60 per cent of mothers felt their maternity leave was too short.”

5. Eva & Charlotte’s Story “While NCT groups up and down the country are meeting for coffee and talking about pooing and breastfeeding, NICU mums gather in expressing rooms to discuss breathing support, surgery and methods of tube-feeding. It’s like an alternative reality where life-or-death moments are discussed in the same way as nap routines.”

4. Shock, Trauma & Hope: A life changing journey through neonatal care “…This is the mark of a premmie mum. From nowhere, I was signed up and given lifelong membership to a club I never wanted to join, nor even imagined existed.”

3. Top Ten! | What not to say “At least you got to miss that really big stage”.

2. Longer mat leave for preemie mums: 5 Reasons Why “Mothers of babies born too soon face the agonising journey of leaving hospital without their baby day after day. Any NICU mum will tell you, there is a lot of watching and waiting in neonatal care – waiting for that first precious hold, usually days, sometimes weeks after their baby is born.”

smallest things

and finally, our most read post of 2015….

  1. Time to Talk: PTSD the hidden cost of NICU “Nothing can prepare you for parenthood, but you allow yourself to imagine the arrival of your baby; those first precious holds, taking them home to meet loved ones, the time together to grow and bond – and then suddenly everything you imagined is dramatically replaced with the alien and uncertain world of neonatal intensive care.”

.

guest blogIf you’d like to write for The Smallest Things or share your story in 2016, then get in touch! Just email Catriona or send in your story (approx. 650 words) to smallestthings@yahoo.com

 

Notice! It’s not quite the end of 2015, and our Top Ten is subject to change as we near the New Year…Check back on midday 31st December 2015 for our final count down!

I’m signing because…. “Time is precious when you have such a little one.”

Thousands of you have been telling us why you are signing and supporting our petition to extend maternity leave for mother of babies born too soon. Here are just a few examples of why you are signing and why you think it is so important for mothers of premature babies to have more time. Please take a little time to read x

“Because 2 months sitting in a hospital isn’t maternity leave. Anyone who can’t afford to take a long time off work faces losing precious time at home with their children because they can’t afford to take more time and have spent the time they could afford sat next to an incubator, unable to hold or even touch their own baby for large parts of that time.”

“I have had a premature baby i feel robbed as I cannot get to see him daily and my pregnancy was cut short so returning to work early would just be extra heartache!”

“My son was born at 25 weeks (15 weeks premature). We spent 5 months in hospital before we could bring him home. Even since he’s been home he has needed multiple operations and we have been restricted on what we can do due to lowered immunity. He is still oxygen dependant and I have suffered from anxiety disorder as a result of everything. I have to return to work due to financial strain as my husband is self employed. To have a longer maternity leave would mean I could spend the time with my son I never got for the first 5 months. A time which isn’t dictated around hospital stays/visits. To just be a normal mum.”

“My baby was 16 weeks early and have to travel 60 miles to Nottingham to see him we have been there 115 days and still waiting to get closer to home this has been the most stressful journey and mums who have prem babies need extra time off as their journey of being a mum hadn’t begun until they get home.”

“My son was born 11 weeks early..as well as worry about my son..extra worry about finances was awful.”

“We had a baby born 11 weeks early and it crippled us i lost my job because of the time i had taken off. We racked up huge debts on credit cards and 9 months on still struggling immensely to keep a roof over our heads. Something needs to be done to help other familues going through such a traumatic time.”

“I had a premature baby, the time spent in scbu is not the quality time other mothers spend at home with their children. Our time at home doesn’t start for weeks, even months later- we have been sitting next to incubators willing our babies to get better while babies born to term are being cooed over in their prams. Our babies often have health issues that continue after they leave hospital which means poorly spells and hospital visits which all eat into our precious maternity leave. Let’s make this fair!!!”

smallest things“I’ve seen at first hand the impact of having a prem baby as I work in a neonatal unit. The real bonding process only starts properly once the baby goes home.”

I’m signing because, “Time is precious when you have such a little one.”

If you agree please sign and share our PETITION to extend maternity leave for mothers of premature babies – SIGN NOW!

Too soon, too early – this family needs more time

Zara family

My husband always said I planned my pregnancy like a military operation. We got married in May 2014, got pregnant a couple of months later and our baby was due in April.

We knew what were going to call our baby from before I even fell pregnant. I did everything right, watched my diet, got my husband to give up smoking, took his and hers vitamins and joined the gym.  When I got pregnant I convinced my husband and we moved from our flat into a house. I have 14 baby apps on my phone and joined numerous baby and pregnancy groups on Facebook!

I draw up a timeline and planned what to buy and when. My husband and mother were going to be my birthing partners and we were going to attend parent craft classes. I was proactive in planning my maternity leave. I’d set deadlines to wrap up projects and had the date set for my mother to arrive from Nigeria to help.

I’d planned my maternity leave based on what we could manage financially. I was the main earner and luckily through my work would receive 6 months full pay as statutory maternity pay alone wouldn’t cover the bills. The plan was to go back once my 6 months full pay was exhausted and my husband, who was on a zero hour contract, would have more flexibility to work part time to look after the baby and save on childcare costs.

My pregnancy was not stress free. I had nausea throughout and felt very tired; but despite that I revelled in the fact I was going to be a mother, loved the cravings and enjoyed the weird and wonderful things that came with being pregnant. It was tough, but I wanted to feel pregnant.

I was 24 weeks and everything was going well, I just felt tired. I saw my GP who signed me off work to “catch my breath”. Apparently the stress of moving house and the Christmas hype had got to me.

On the Thursday and Friday night (1st and 2nd of January), I’d woken up feeling more nauseous than usual and with a bad headache. My husband insisted I saw my nurse. I dismissed it, but he’d been reading his “Pregnancy for Dummies” book and this is the post I put up in one of my pregnancy Facebook groups:

“My husband, who is definitely not a doctor has diagnosed me with pre eclampsia. I’m literally being dragged to the walk-in centre now. I’ve had a bit of a fever and sickness and diarrhoea for a couple of days. I’ve told him it could be something I’ve eaten and not baby related. But noooo! ! He is checking that we have enough stuff in the delivery bag, pads, comfy clothes etc. If I wasn’t so cold and felt so ill I’d be laughing – 27 weeks pregnant. Talk about over reacting!”

Two hours later, this was my post to the same group:

“Hubby was right. Baby will be here early apparently. They say I have pre eclampsia. I’m in shock obviously, done all the crying. The only way to cure pre eclampsia is to deliver the baby. Please pray for me.”

zara iiSo that was it, my baby was born at 27 weeks gestation.

That was not in my plan.

It was not on my spreadsheet.

Chizara Maya was born on the 5th of January weighing just 1lb 13oz.

A lot of what happened after that is still a blur. I went into auto-pilot and I’m not sure I have come to terms with it yet. I still cannot believe what happened. We spent 9 weeks in hospital and before I knew it my mother had abandoned her job and arrived in the UK, but my husband had no choice, he had to keep working because of his zero-hour contract.

We finally bought our daughter home after 9 weeks in hospital. I’d barely lived in this house and now I had a baby at home with me. We weren’t prepared. I wasn’t ready. We somehow managed to sort out a cot, the pram, the car seat, and all the other baby things you need before coming home. It was not how I’d planned.

zara and mumZara came home on oxygen. We had nurses coming to the house twice a week at first, as well as the health visitor and Physiotherapist. I made sure she was fully breastfed by the time we came home, but there was a lot to grapple with. I was suddenly very anxious. Zara was now home and not in hospital where she was solely in their care. I couldn’t sleep. What if she stopped breathing? What if something went wrong? The fear was palpable. I had no idea what I was doing. We didn’t get a chance to go to parent craft classes. I had no idea what to expect. I didn’t even know how old to tell people she was. Surely by 10 weeks of age she should be able to hold her head without support, she should be able to roll over by 12 weeks of age… but at this time, my child was not even meant to be born. I felt conflicted and confused. I was grateful that she was well enough to come home, but I couldn’t help feeling cheated out of time and then felt guilty for feeling that way.

I finally learned to relate to my daughter based on her corrected age. I had to recondition my mind entirely. Only then did I begin to relax and allow myself to watch her grow and almost enjoy the stage we were at. She had smiled at us, she was holding her head up and things were getting better in my head. I could actually see that my child was thriving.

Zara

Imagine my shock then when she was about 11 – 12 weeks and I started to hear from work about returning! I had made my original plans thinking my baby would 6 months old, not a tiny 12 week old. It dawned on me that even though my child was medically and developmentally 12 weeks old, she was born 6 months ago. I was torn. How could I leave my 12 week old baby? I was in no state mentally to go back to work. But we have bills to pay. I wasn’t sure what to do. I didn’t want to miss those small but mighty milestones in my baby’s life and I was only just beginning to sleep again. She is a breastfed baby and if I go back to work now would I have to start weaning her off breast milk? Would she take a bottle? She is still on oxygen at home…she still needs me.

Here come all the feelings of being cheated again and that old friend anxiety. What do I do?

I have decided to stay off work until Zara and I are ready.

How will we pay the bills? I don’t know.

My husband has been working non-stop since Zara was born, but I was the main earner and we need my income.

We will have to come up with something. I’m not ready, Zara’s not ready. It’s too soon.

With thanks to Ije McDougall for sharing her story

If you think that statutory parental leave should be extended for mothers of babies born too soon, please sign our petition – SIGN NOW!

Zara and dad Zara iiii Zara iii Zara i

All planned out – why NICU mums need more time

I had it all planned out; I would wind down work slowly, finishing Christmas Eve.

I was beginning to feel relaxed and confident in my pregnancy, daring to think about what life would be like once the baby was here. I had finally agreed a date with my friends for a baby shower, totally unaware that a week later I would go into labour.

One morning I decided to go to hospital after experiencing a few pains through the night, with a show of blood. Shortly after arriving I was told that my placenta was hanging on by a thread and I was 6cm dilated. My husband and I were told that we would be delivering the baby that day, 14 weeks early.

My son Lewis was born that evening, the 2nd October 9.32pm at exactly 26 weeks; weighing 1lb 12.

The survival rate for the first 72 hours was 50:50.

My maternity leave kicked in the very next day and for the next 93 days my husband and I lived and breathed the Neonatal Intensive Care Unit (NICU). We were in limbo; we were parents, but we could not take our baby home.

Lewis - day one

Lewis – day one

My last trimester of pregnancy was spent watching our little boy grow inside an incubator. I had never experienced anything like it, emotions ranging from sheer grief and helplessness to absolute admiration for this little boy fighting every step of the way. It was an extremely traumatic and stressful time for us all.

With hindsight I can look back on Lewis’ time in the hospital with a fondness. Knowing that I experienced something very special, seeing him achieve milestones that full term parents would never see. I always saw myself as being tough, someone who rolls with the punches, but seeing your baby battle to stay alive with the constant set backs, takes its toll. One step forward, two steps back was considered the norm.

Lewis finally came home 31st December 2014 and the reality began to set in that we had our baby boy home. To begin with, it took us a long time to feel confident in our parenting abilities. We had been ‘institutionalised’ – a direct consequence of being in hospital for 93 days. Knowing that we had the support of doctors and nurses if anything were to happen. Suddenly that support was gone and we were on our own, responsible. Our first night home was absolutely terrifying.

Lewis aged  9.5 months - 7.5 months old corrected

Lewis aged 9.5 months – 7.5 months old corrected

Initially I didn’t think of the impact that Lewis prematurity would have upon my maternity leave. The plan was to return to work in a years time. As time went on, I started to think of the implications of returning work in October 2015 and I began to fret at the thought of having to leave Lewis – I didn’t feel ready at all. All I kept thinking was, what about Lewis, he’s not ready and what about me, I’m definitely not ready.

So what if the maternity leave was extended to allow for the time lost in hospital?

It would have given me time to process the trauma of Lewis being born so early. As that time spent in the hospital unearthed some extremely raw emotions and 10 months on I continue to have reoccurring nightmares. This is my brain coming to terms and processing what has happened.

Time for Lewis. It would allow me to continue to support my son’s 3.5 month delayed development, which should eventually subside by 2 years old. It would allow for extra time that we lost together in hospital, time to reflect and time to embrace what we have.

Extended financial support through the extension of Statutory Maternity pay. Giving mothers of premature babies a choice, not feeling pressurised to return to work, or indeed having to give up work because of the financial implications.

Fortunately my company has allowed me to take a 4 month unpaid career break, giving me this extra time, however financially we will be worse off. This additional time is important to me and important for my son, but this option is not widely available and may not be possible financially for many families. This is why I believe in the extension of maternity leave for families in neonatal intensive care, taking into account individual circumstances and giving time and the financial support to take that extra time if needed.

Guest Blog by – Jessica Hayler

If you agree, please sign our petition to extend parental leave for families in neonatal intensive care – SIGN NOW!

2014 in review – Thank you!

The WordPress.com stats helper monkeys have prepared a 2014 annual report for the Smallest Things site! | Launched on the 20th September 2014 our ‘annual report’ is made up from the stats of the last 3 months –

“A New York City subway train holds 1,200 people. This blog was viewed about7,500 times in 2014. If it were a NYC subway train, it would take about 6 trips to carry that many people.” 

Click here to see the complete report.

We would like to say a huge THANK YOU to everyone who has supported us in reaching such a wide audience in just a few months. We look forward to continuing our work in 2015 and with your support reaching ever more people to raise awareness.

 

NICU Journey Cloud – WPD 2014

This World Prematurity Day you have helped The Smallest Things to raise awareness of the difficulties and emotions faced by parents of babies born too soon.  So many of you shared with us the three words that best describe your journey through neonatal care. Here they are as part of our NICU journey cloud.WPD2014

Please do share the picture that you helped to create as an example of just how conflicting emotions can be for parents of premature babies.