Tag Archives: Neonatal intensive care unit

An incubator holds my baby

An incubator holds my baby; a baby I am no longer with.

I long to feel just one more kick, to feel and see my belly move one last time.

I promise I won’t complain about my aching back, the tiny feet that push at my rib cage or the baby that bounces on my ever weakening bladder. 

I miss my baby; I miss my baby bump.

An incubator holds my baby; a baby I am no longer with.

Inside I feel so empty and outside I feel numb.

I do not recognise this person the NICU nurses are calling ‘mum’.

Through the incubator, I’m almost too scared to touch, my tiny little person who has arrived here far too soon.

My baby isn’t ready, in fact nor am I! And now he’s here, my heart breaks every time I say goodbye.

Smallest Things

An incubator holds my baby; the incubator that has taken my place…

and here I stand, desperate to shout – ‘it’s me, I should be the one keeping him safe’.

Inside I feel so empty and outside I feel numb.

I do not recognise this person the NICU nurses are calling ‘mum’

cuddles

Mothers of premature babies wait days, if not weeks to hold their baby for the first time. The uncertainty of neonatal care and the journey from birth to discharge home can last months – this is why the Smallest Things are campaigning for NICU mums to have more time with their babies.

If, like us, you think paid maternity leave should be extended for mothers of premature babies, please SIGN our PETITION!

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”

NICU mum I salute you | for mothers day

NICU mum I salute you!

NICU mum, yes you.

Sitting beside the incubator, there are things you ought know.

 

You are someone very special, someone immensely strong.

You may not know it straight away, but NICU mum it’s true.

There are times you may feel helpless, times you may seem lost.

NICU is a world away from where from where you thought you’d be.

 

NICU mum you’re special, NICU mum you’re strong.

You may not know it straight away, but I’m telling you it’s true.

Your baby is amazing; tiny fingers, nose and toes.

Not many parents get to say – I see you as you grow.

 

Watching and waiting day after day takes courage, you must know.

Forward steps and backward steps, the NICU road is tough.

Each day you accomplish the hardest; how to say goodbye.

Going home, emptied armed – it’s okay to cry.

 

NICU mum I see you, battling brave and strong,

Even on your darkest days I know you’ll carry on.

Your journey’s not for the faintest of hearts,

Shock, uncertainty, grief and loss – and that is just the start.

Your baby shows you courage, you follow in their lead.

Nappy changes, stick thin legs, wire and tubes and feeds.

How strong you are in what you do,

– a mother in NICU.

 

 

NICU mum I salute you!

NICU mum, yes you.

You are someone very special, someone immensely strong.

Know this now and in the years that come, you’re one amazing mum!

 

smallest things

Premature Birth: What it’s really like series

Smallest Things Founder Catriona Ogilvy spoke to Talya Stone as part of her ‘What it’s really like’ series.

You can read the original article on ‘Motherhood Real Deal’  here:

  1. Can you share a little with us about you and your family?

I’m a children’s occupational therapist and have worked in the NHS for fifteen years. I live with my husband and our two young boys in south London. Samuel, who is four, started school in September and loves it! Jack his younger brother goes to nursery two days a week and is a very happy cheeky two year old!

  1. Can you share a little bit about how and when your baby came into this world?

Samuel was born 10 weeks early at 29+6 weeks. I’d had no complications during my pregnancy and no indication at all that he may come early. It was a Friday morning when my waters broke as I got out of bed; I couldn’t really believe what was happening! I calmly called a taxi, threw a few things into my hand bag (10 weeks early I hadn’t even thought about packing a hospital bag) and made my way to the hospital.

Despite the midwives hoping my labour may not progress, Samuel was born a few hours later. The room flooded with doctors and nurses as he came into the world and it was six long minutes before he would take his first breath. I remember the midwife showing me a tiny little face wrapped in a towel. I reached out to touch him, but my hand was gently moved away and in the flash of a second he was whisked away to neonatal intensive care.

  1. Having previously spent time working in a large neonatal unit, did you ever really think that your own baby could be born too soon? And did that do anything to prepare you for the challenges you faced?

Samuel was taken to the neonatal unit where I had worked a few years before. When my GP had asked me where I’d like to have my baby my only thought was of Kings College Hospital. Having worked there I knew how good their neonatal unit was and I remember thinking that if anything went wrong that is the place I would want to be. I don’t think I ever really thought that my baby could be born early, (I wasn’t planning on starting maternity leave unit 38 weeks), and I’m not sure it prepared me for the challenges we would face. In a strange way it made being mum to a tiny fragile baby more difficult as I could hit ‘medical mode’ and detach myself more from the emotions of a traumatic birth. I also think more was expected of me as I should be used to handling babies through incubator port holes with numerous lines and tubes covering them, but being my own baby I was terrified.

As an occupational therapist, part of my role was to help parents to be parents; to hold and to care for their babies. I thought I knew what being in neonatal care was like, but I soon discovered that I had had no idea. I’d never truly appreciated the trauma that parents go through, the emotional roller-coaster and the host of conflicting feelings.

  1. Did your baby suffer any of the complications associated with being born too so (please elaborate and if yes, how that translates to your child at this present time)?

Like many babies born early, Samuel has had ongoing respiratory difficulties with simple coughs and colds in danger of landing us in hospital. As he gets older his lungs continue to develop and get stronger, but it is always a worry for us. He has always met or been ahead of his developmental milestones according to his corrected age (the age according to his due date rather than birth date) and is doing so well at school. At just turned four though he is one of the youngest in his class and as a direct result of his prematurity has gone to school a year too soon. Born in early August, but not due until mid October, he literally was born into the wrong academic year!

  1. Becoming a parent is a life-changing event as it is, but does having a baby who was born too soon take things to an entirely different level?

Nothing can really prepare you for becoming a parent, but what I always say is that for parents of premature babies all the planning and anticipation is dramatically and very suddenly interrupted. You have ideas about holding your baby for the first time; of about bringing them home to meet the family. You have their room decorated, your hospital bag packed, an empty crib ready and waiting and their first outfit chosen. I had nothing ready. No hospital bag, no car seat, no baby grows or crib. I waited six days to be able to hold my baby and changed my first nappy holding tiny legs resembling sticks through holes in an incubator. It does take things to an entirely different level, but I am also mindful that everyone’s birthing experience is different and everyone has their own journey when starting out as a new parent.

image

  1. Being born too soon still seems a little talked about subject – given the number of babies who are born too soon in the UK, why do you think that is?

The neonatal intensive care unit isn’t the sort of place you’d stumble across and I think people can be afraid of the unknown. Seeing the smallest of babies hooked up to tubes and wires, some at the very edge of life, is not for the feint hearted and TV documentaries like ‘Miracle Babies’ last year really helps to shine a light on the subject.  As a parent of a premature baby it can be difficult to explain or re-live your journey through neonatal care and where there is a lack of understanding it can feel safer to stay silent. I think this is why mothers can describe their journey as being quite isolating and why I initially set up my Smallest Things blog.

  1. What are people’s reactions towards having a baby born too soon, and what is the most frustrating thing you have encountered?

I found that people thought my baby was just a smaller version of a term baby. Perhaps well meaning comments such as ‘Labour must have been easy for you’ or ‘at least you got to miss that really big stage’ were in fact quite hurtful. I don’t think people really realised how scary giving birth 10 weeks early can be, what difficulties premature babies can face or what it is like to go home every day without your baby.

  1. There must be so many challenges to overcome a parents of a premature baby, but for you, which was the single greatest one?

It may sound strange, but there is a great sense of loss and grief when your baby is born prematurely. I was discharged from hospital the day my son was born and had to go home that evening without him. I was empty and I was without a baby to hold. Although my baby was alive I grieved for the baby I was missing. This also caused a great deal of guilt; feelings that I must be selfish to feel this way when others really are grieving for their lost babies. You feel a sense of loss – loss of that first precious hold after birth, loss of your final months/weeks of pregnancy, time to plan, buy, decorate and prepare. Loss of the celebration of a new birth as you welcome your new baby into the world with caution and anxiety. For a long time I ached for the baby I wasn’t able to hold and that is one of the greatest challenges I have had to overcome.

  1. You’re currently campaigning to extend parental leave for mothers of babies born too soon – can you tell us a little about that?

I had no idea when my baby was born prematurely that my maternity leave would begin the very next day; days before I would first be able to hold him and months before I would be able to bring him home. I had planned to take 9 months maternity leave, so by the time I bought my son home I had already used nearly a quarter of my leave visiting him daily in hospital. And rather than returning to work when my son was 9 months old, developmentally at his corrected age he was only 6 months old, not able to sit independently and not yet weaned. It was too soon for him and too soon for me. I needed more time to recover from the trauma of time in NICU and more time to bond with my baby, and he needed more time to grow and develop.

So, I started a petition calling on government to extend statutory paid parental leave for those with premature babies – the petition now has over 11,000 signatures! My local MP Steve Reed is championing the petition in parliament and it was even discussed by MPs as part of a Westminster Hall debate… so watch this space!

  1. If there is one thing you wish people would understand about having a premature baby it is….

That the journey through neonatal care doesn’t end when you leave the neonatal unit.

I remember someone once saying to me ‘well at least it’s all over now’, but your journey and the memories of NICU stay with you. For us we have had subsequent admissions to hospital with respiratory illnesses and regular follow up appointments. There are the anxieties of reaching milestones, worries about lasting affects and of course time needed for you to recover mentally and physically. More than half of mothers are said to experience anxiety and signs of post traumatic stress disorder following a premature birth and more awareness is needed of the lasting effects of neonatal care on families.

smallest things

  1. Anything else you would like to add?

Two things; firstly my thanks to the wonderful NHS staff who have not only supported us through neonatal care but beyond, they are all amazing; and secondly to say to other parents of premature babies that they are not alone and by speaking about our experiences together we can raise awareness.

 

Feeding – that time of year again!

It’s that time of year again when perhaps our waist bands are feeling a little tighter and when New Year resolutions sounding food and drink are made and broken.

CYXlNzmWcAARASiAnd… it’s that time of year again when The Smallest Things will be discussing all things surrounding feeding a premature baby in NICU. From expressing to NG feeding; mls and hours; suck reflex and breast feeding – we’ll be looking at everything!

Did you know – a baby develops their suck reflex in the womb at around 34 week’s gestation?

So, for babies born before 34 weeks gestation many are feed via a nasogatric (NG) tube (a fine tube passed through the nose and into a baby’s tummy).

Did you know – mothers express for their babies in NICU on a 3 hourly cycle? Neonatal units have ‘expressing rooms’ where mothers gather to pump milk for their babies and sterilise expressing equipment. Some mothers have a plentiful supply of milk, whilst other mothers can find establishing milk supply difficult – often due to the stress and environment of the neonatal unit or recovery following birth trauma.

Expressed milk can be given to babies via their NG tubes and many mothers remember the first time they see their baby having their expressed breast milk.

Did you know – Expressing mothers set their alarm at night to continue expressing on a 3 hourly cycle; getting up throughout the night to feed a baby who is not with them and perhaps they have not yet held.

Establishing feeding – breast, bottle, expressed or formula in neonatal care can be a difficult journey and through our stories and experiences we hope to shine a light on the NICU world and offer hope to those embarking on this journey.

If you have a story to share please contact Catriona at 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

 

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.”

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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!

Home for Christmas

Evie was born early, 7 weeks to be exact. She was born with sepsis, it very nearly took her from us. Suddenly the new diagnoses of Down Syndrome didn’t matter, it didn’t scare me, I just wanted my baby to live.
Walking into NICU to meet my little girl two days after Evie was born, I felt like the earth was moving under me and that  time had suddenly slowed down; just beeps and my own heartbeat was all my ears were absorbing. I knew the nurse was speaking to me because I could see her, I just couldn’t work out what she was saying. We had already been taken into a room and told how sick she was; told that she was very critical and that we needed to prepare ourselves – what does that even mean? Time slowed after that!
Evie 1
There she was, the biggest girl in the room, all 5lb9oz of her (mainly fluid as she was really oedematous). I thought that meant she was the healthiest, I was wrong. In fact she was the poorliest child in the room, but something happened when I saw her, I refused to believe she wouldn’t get better, I had to be strong, so I was.
Evie had recieved a diagnoses of Down Syndrome, something that had the potential to send fear and uncertainty down the spine of even the strongest of person, not me. I just wanted her alive and healthy, she would have a great life, I would make sure of it. I believed that me, my husband and our children were the perfect candidates to ensure her future happiness and for us Down Syndrome would never define her, it would just be a part of her.
Evie
Beep beep beep… 13 months down the line I still hear those noises. The sound of reassurance mixed with the sound of fear.
NICU is an amazing place filled with amazing people. It’s tiring and draining and the amount of learning achieved is phenomenal; about the machines, about conditions, your baby, the staff…everyday was like attending a conference, medical ward rounds every morning where we felt valued, where we were asked for input and made to feel involved in a process that was so scary, when it could have been so easy to feel out of control.
Evie
On day 4, Evie came off her ventilator, she was breathing on her own. On day 6 there was a marked difference in her CRP levels (infection markers), they were coming down. The antibiotics were working, she was getting better. It was hard work and continuous care where I never left my daughters side. She went on to have a further diagnoses of a heart condition that would require surgery, but Evie came home after six weeks in hospital. She was on a home feeding tube and oxygen, but she came home, the day before Christmas eve, and she went from strength to strength.
Evie
Evie had open heart surgery at 4 and a half months old, another scary time but it worked and her heart was fixed. She came off the oxygen and came off the feeding tube and continued to grow stronger. We are doing our best to give her the amazing life we promised and the amazing life our amazing girl deserves.
Nothing could have prepared me for being a NICU mum; the noises, the emotions and the feelings will stay in my memory for ever.
I would like to thank the staff who helped keep Evie alive, the most awe inspiring and wonderful people I have ever had the pleasure of meeting. You gave us hope, you gave us inspiration and most importantly you gave us Evie.
xx Beating heartxx
Evie   Evie

The hidden cost of NICU | Write to your MP today!

On Wednesday 9th December MPs will take part in an opposition day debate in the House of Commons to discuss Mental Health.

The Smallest Things campaigns regularly for more awareness and better access to psychological support following the premature birth of a baby and we know how important this issue is to our supporters.

I have written to my local MP, asking them to attend to take part in the debate and hope you will do the same.

Please feel free to use any part of the letter below.

You can find how to contact your local MP by clicking and entering your Postcode here.

 Dear Mr Reed MP,

I am writing to ask you to attend the forthcoming opposition day debate on mental health with regards to PTSD, the hidden cost of NICU.

When my son was born we weren’t ready. He wasn’t ready.

Born 10 weeks early, he spent an anxious 8 weeks in neonatal intensive care; a stressful environment where parents following the traumatic birth of their babies watch over incubators day-by-day. It is an uncertain and alien world full of breathing machines and beeping monitors. It is a medical and clinical world where you find life at its most fragile.

Not surprisingly mothers of babies born too soon there is a greater risk of post natal depression, with as many as 70% report symptoms of post traumatic stress and anxiety in the aftermath of a premature birth.

Yet in their 2015 baby report, Bliss reveal that 41% of neonatal units have no access to a trained mental health worker and that nearly a third of units offer no psychological support at all.

Parents of some of the smallest and fragile babies need more support, not only during their hospital stay, but also in the months and years that follow.

I, and parents like me, would be grateful if you could highlight the very specific, but often unmet needs of families of premature babies in the forthcoming opposition day debate on Mental Health – Wednesday 9th December.

For more information, please see PTSD: The Hidden Cost of NICU

With best wishes,

Catriona

ST reception

 

The parental leave loophole

Mark and Sarah had their premature baby, Sophie, nearly three years ago. This is their story and why they are supporting the campaign.

Sophie iiFollowing a final ‘babymoon’, Sarah had a 32 week scan as part of a research project. Having had a normal pregnancy, we turned up for our scan excited to get a ‘good picture’ of what our little one looked like. There was silence as the sonographer scanned our baby and then disappeared from the room. A foray of consultants arrived speaking in hushed voices.  There was excess fluid in our baby’s abdomen and no one knew whether it was a sign of a severe infection or a chromosomal abnormality.  Tests were performed and we were sent home to wait for the results 48 hours later – but not before termination was suggested to us as a possibility.

The next day Sarah did not feel the baby move and decided to get our baby checked at the hospital’s Maternal Assessment Unit.

Our baby’s heartbeat was irregular so Sarah was admitted immediately to Labour ward while staff tried to delay delivery for 48 hours to allow time for steroids to be given to help our baby’s lungs develop.   A few hours later, shortly after Mark arrived, with the baby’s heart rate plummeting, Sarah was rushed for an emergency caesarean and Sophie was born fighting for her life.

Sophie had to be resuscitated in the delivery room and was immediately rushed to intensive care without us having any chance to hold her. At 32 weeks, she weighed 4lbs 8oz – ‘a good size’ we were repeatedly told and ‘it’s lucky she’s a girl as they’re fighters’. That evening we asked one question: “Will our baby live?”.  There was a long silence. “We don’t know. She is very sick.”

Sophie iThe next 48 hours were critical as the amazing neonatal team worked to stabilise Sophie and identify what was making her so unwell.  After 72 hours, Sophie stabilised and was diagnosed with listeria.  Sarah had not been ill but had clearly passed it on to her; which was something she struggled with. Sophie spent a total of six weeks on the neonatal unit, slowly getting stronger and gradually we were able to hold her for short periods rather than just touch her through an incubator.

Mark took his paternity leave at once and was the main person at Sophie’s bedside whilst Sarah recovered from the caesarean. Sarah stayed in hospital for 5 days following which she spent six weeks travelling every day to be by Sophie’s side. It was one of the longest periods of our lives and both of us were emotional wrecks. We both cried daily until she came home. After only two short weeks Mark had to return to work as his paternity leave was finished.

The day Sophie came home was exciting but daunting as we now had sole charge of this little person with none of the monitors and support we had been used to over the last six weeks. Around that time Mark’s work sent him to Ireland for a few weeks. He had no paternity leave left and had used his vacation. There was no option for him to stay at home with Sarah. As a result, Sarah was left on her own looking after a premature baby and felt unprepared, exhausted and alone. When they sent us home Sophie was now a relatively normal new born baby – needed constant feeding and changing. Yet we felt as if we had fallen into a parental leave loophole.

As we raised Sophie we were incredibly conscious of every milestone. No one could tell us if our child would have developmental difficulties. In fact, there were some indications from brain scans that she might – but we would not know for sure until a MRI scan at 12 months. Suddenly, those first months seemed every more important so that we could give Sophie every chance of recovery. Midwives were telling us that breast was best for as long as possible. Every book was telling us to engage in every way with our child to help her develop. The health visitors at the hospital had told us that we needed to give her extra affection to compensate for the weeks in an incubator. All good advice. All impossible to achieve when you are back at work and unable to be with your child for the full maternity leave because you had to start it early but could do little more than peer through the incubator glass. Like so many parents, because Sarah’s maternity leave began at actual birth, not at corrected birth, we were unable to spend as much time with her in that six to twelve month period as other mothers. Even though every medical professional was telling us that our child probably needed support even more than others.

We also noticed great variability in support for parents of premature babies. In the hospital we always found excellent clinical care. But we also found that some staff simply ignored Mark when updating us. The expressing room in the hospital had clearly seen better days and served to depress Sarah’s spirits even further at times – not what was needed when breast milk is so important for premature babies. When we were out of hospital in the community we found an excellent health visitor who came frequently to support us. But we also found health visitors unable to calculate corrected age and insistent as they clearly incorrectly plotted weight versus age. In short, we felt there was a range of improvements needed for premature babies relating to better technical training for community staff, better understanding of the role of fathers and general improvement in empathy for the emotional journey that parents are on.

Thankfully Sophie had a clear brain scan at 12 months. All she has been left with is a squint – not bad for someone who nearly died and it was suggested we terminate.

We are supporting the smallest things campaign as we want to make things easier for other families who find themselves in the same situation in future.

Mark and Sarah are supporting the Smallest Things petition to extend maternity leave for mothers of babies born too soon. If you agree, please support and SIGN our petition too – SIGN NOW!

Sophie ii

 

 

 

 

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!