Tag Archives: neonatal care

Small but Mighty!

Making a Difference!

Sometimes it really is the little things that can make a difference… and for the parents of premature babies we hope that our new “Preemie Proud” stickers will make a BIG difference.

Acting as a visible reminder, our Smallest Things Preemie Proud stickers are there to alert health care professionals to a babies NICU history. The support for the stickers has been amazing, with extremely positive feedback; and we offer our sincere thanks to all our Smallest Things mums who have contributed to their design.

Preemie Proud!

Used to personalise a baby’s red books, parents can choose from a series of stickers all of which are designed to meet the particular needs of NICU babies and their families.

Our “Preemie Proud” stickers are designed to –

  • Raise awareness of premature birth
  • Prompt a conversation between health professional and parent about their neonatal care journey
  • Engage health professionals in learning more about the realities of neonatal care
  • Highlight the extra support parents of premature babies may need
  • Increase awareness that parents following neonatal intensive care are at greater risk of developing postnatal depression, anxiety and PTSD
  • Offer a gentle reminder to use a babies corrected age when plotting their weight on a growth chart
  • … and to say how amazing our tiny babies are!

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Small but Mighty!

A sticker; it’s only a small and a simple idea, but it could make a dramatic difference to the lives of thousands NICU families.

Each year 80,000 babies are born requiring specialist neonatal care in the UK, with 20,000 of them spending a prolonged period in hospital…. and it is our aim that “Preemie Proud” sticker packs are available to each and every one of them.

Help make the Smallest Things matter!

It’s a big task, so we are excited to have begun our Crowdfunding drive, fundraising for the launch of the Preemie Proud sticker campaign.

If you would like to see Preemie Proud stickers available in all UK NICUs and to all parents of premature babies them please do consider donating a small sum to the campaign below.

images (1)http://www.justgiving.com/crowdfunding/Smallest-Things

 

My Superhero Preemie Powers

Tomorrow my eldest son will turn five.

He has been busy planning his Superhero themed party with great excitement!

And this year’s theme seems pretty apt for my Samuel Superstar.

 

I was 29 weeks pregnant this time exactly five years ago.

I was just starting to think about cots and buggies, cribs and baby grows.

I’d booked onto my antenatal classes, still weeks away, and was yet to confirm my last day at work.

 

This time exactly 5 years ago I felt a sudden panic – I wasn’t ready!

‘You’ve still got 10 weeks to go’ my colleagues told me as I began to fret about baby grows and nappies.

Yet I still felt a sense of urgency – perhaps my nesting instincts kicked in.

Despite this, I could have no idea what was to happen the very next day.

 

Having a premature baby sends you into a wild journey of uncertainty, shock and disbelief.

My son was born just hours after my waters had broken at home.

It didn’t seem real.

 

The room was filled with doctors, nurses and midwives as they attempted to resuscitate our tiny baby for six long minutes.

An alien looking capsule was bought into the room and our son was whisked away.

I was numb.

Just as quickly as the room had filled with people, quite suddenly we were alone.

I’d become a mum for the very first time,

but there were no cries of joy, no words of congratulations and I had no baby to hold.

 

This is how I became a mother, 5 years ago.

 

Becoming a parent to a baby born too soon;

having your baby taken away to neonatal intensive care, is one the hardest things a parent will ever have to do.

Saying goodbye to your tiny baby, leaving them alone in their incubator as you head home empty is perhaps even harder.

 

The NICU journey is tough, the effects of which cannot be underestimated and stay with you long after bringing your baby home.

But the NICU journey can also be special….

beautiful

I witnessed my superstar as he took his first breaths without the support of a ventilator, and I was overcome with pride.

I watched in wonder as he learned how to co-ordinate the feeding reflex, (usually learnt within the womb) and saw as his micro nappies began to fit his tiny body.

We spent hours and hours together in kangaroo cuddles as I tried to block out the sounds around me,

And his strength for someone so tiny amazed me every day.

 

Now, five years on, I remember just how far we have come.

He is desperate to be a real superhero, asking me every day how he can get special powers like Superman or Spider-man.

Ideally he would like to be able to swing on webs or fly through the sky,

But to me he is Samuel Superstar, and I think he’s pretty amazing already!

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If you believe that mothers & premature babies need more time together after neonatal intensive care please SIGN 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

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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!

#FlamingJune – Taking Action for NICU Mums

One year ago a group of inspiring women pushed me into action. The women are those behind the MatExp campaign, a grassroots campaign, based in the Whose Shoes?® model, seeking to identify and share best practice across the nation’s maternity services.

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Last summer we were asked to take action, to seek to make change, as part of their #FlamingJune initiative to improve the maternity experience. I’d already been campaigning hard as part of The Smallest Things to raise awareness of premature birth and the journey faced by parents during and beyond neonatal care, but now was the time to take real action!

In #FlamingJune 2015 I began a change.org petition, calling upon the government to extend maternity leave for mothers of premature babies.

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The campaign has been debated on Radio 5 live, raised in Parliament during a Westminster Hall debate, featured in the national press and is supported by cross party MPs!  Right now the petition has just under 17,000 signatures – how amazing would it be to reach 20,000 before the end of June 2016?!

radio 5 live reception

This year 2016 may have felt more like wet June rather than #FlamingJune, but the fire to take action and make change still burns.

When my first son was born ten weeks early, I had no idea that maternity leave would begin the very next day, months before we would bring him home. Born too soon, the reality of life in neonatal care is very different from what a mother would usually expect from the early days of maternity leave. Lines, monitors, life support machines and recovery from what is often a traumatic birth. Mothers wait days, if not weeks to hold their babies for the first time and face the agonising journey home without their baby each day. The very real cost of premature birth is not only measured in terms of financial pressures placed on families, most recent studies suggest in excess of £2,000 for an average NICU stay, but also upon the long term health implications for the mother, her ability to return to work and her babies development. Extending statutory maternity leave and pay would give mothers the emotional and financial support needed at a time of great stress and trauma – in turn leading to better postnatal health, a more positive return to work and better outcomes for babies development. We call on the Rt Hon Savijd Javid MP and colleagues at the department for Business, Innovation and Skills to recognise the significant and unique needs of families with children born prematurely and to extend statutory leave accordingly.

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PETITION: Keep signing! – Extend maternity leave for mothers of premature babies

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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.


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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!

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’

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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!

15,000 people have signed!!!

15,000 people have signed because;

✒️… sitting beside an incubator is not be maternity leave
✒️…hooked up to a hospital grade breast pump is not maternity leave
✒️… waiting days, sometimes weeks to hold your baby is not maternity leave
✒️… 40% of NICU mums (compared to 5-10% full-term healthy delivery mums) experience post natal depression
✒️… more than 50% of NICU mums experience symptoms of anxiety and post traumatic stress disorder
✒️… NICU mums need support and time to recover
✒️… the average NICU stay costs families in excess of £2,500
✒️… premature babies develop according to their corrected age, based upon due not birth date
✒️… mothers and babies simply need time to bond together at home
✒️… premature babies are at increased risk of subsequent hospital admissions from otherwise harmless coughs and colds
✒️… mothers often have little choice but to leave the workplace due to premature birth
✒️… visiting your tiny baby everyday in hospital is not maternity leave
✒️… wires, monitors, breathing machines and intensive care is not maternity leave

Smallest Things

…have you signed??

Extending maternity leave for mothers of premature babies will make a difference to the lives of thousands of families and babies born too soon – SIGN NOW!!!  https://t.co/OQWaWZW4g3

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.

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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”

My missing trimester

People often speak about the things they miss through premature birth and describe a sense of loss. I grieved for my final trimester for a long time after birth and for all that entailed.

What did you miss? What would you add to our list?

  1. Lost – No time to decorate the nursery
  2. I hadn’t even thought about packing a hospital bag
  3. I didn’t get to finish at work, say goodbye to colleagues or begin my maternity leave properly
  4. Nursery furniture, moses baskets and bedding were all bought online; no time to plan, shop or ‘nest’.
  5. No antenatal classes, no NCT, no mummy friends or support.
  6. I missed getting big
  7. Stretch marks that are missing in places where they should have been
  8. Lost – weeks and months of watching my belly grow, feeling my baby move inside
  9. Maternity clothes, bought but never worn
  10. Preparing for the new arrival, no shopping or meals in the freezer
  11. Lost – my final trimester
  12. No chance to make a birthing plan
  13. Lost – my baby whisked away after birth
  14. Missed – a chance to hold him close
  15. I went home empty armed
  16. I was lost and empty
  17. I grieved for the baby that was no longer with me
  18. No congratulations on your new arrival cards
  19. No new born, first cuddles photos to share
  20. Lost – a chance to be a mummy from day one

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What makes a preemie parent angry?

What makes a preemie parent angry?

  • Sweeping statements and generalisation?
  • No accounting for parents views?
  • Misleading newspaper headlines?

Or perhaps all three?!

Today on the Smallest Things Facebook page we shared a newspaper article with the leading title “Premature children should be treated as ‘Special needs’ pupils”. We asked you for your thoughts, and in the main you were angry.

“I totally agree that Teachers should receive relevant training on Prematurity (as should a lot of Healthcare professionals for that matter!) but to class a child as special needs based on Prematurity alone seems ludicrous. Surely each child should be assessed on an individual basis.”

“All children learn at and in different ways, every child should have the right to the schooling needs as an individual, not because they were premature, my eldest was a premmie and she didn’t need extra help, my second was a preemie and she needed extra help. It all depends on being an individual instead of being institutionalised into one way of thinking”

“Surely every child deserves to have their needs assessed on an individual basis. This is such a generalisation!!!”

“Each child is different. Your child’s strengths and weaknesses become apparent as they grow and develop and labels are given too often these days.”

“No way! Only one of my three prems is behind in development. They should be assessed as individuals”

These are only a small selection of your comments; you can read all the responses we have received and add your own by clicking here.

In a statement, Bliss Chief Executive Caroline Davey has said:

“We know from previous research that children born prematurely are at greater risk of behavioural and learning difficulties, and we think it is absolutely essential that, as this research suggests, children born prematurely should have more support when starting school, and that teachers should be adequately trained to deal with these children’s needs. 

“However, we continue to believe that it is up to parents to decide if it is right for their child to delay starting school. Every child born prematurely has different needs based on a range of factors, and while one child may be ready to start school with their peers, another may not. Our evidence supports this, and we are confident that with the right care at birth and support throughout their development, children born premature can reach their full potential.”

It is encouraging to see that the response from the UK’s leading premature baby charity echo’s so many parents views and is testament to the work that they do in supporting families and facilitating parent choice.

BLISS

As a preemie parent and as a children’s occupational therapist I have my own personal views.

Firstly; misleading headlines cause confusion and upset (although they do of course sell newspapers!). That  “premature children should be treated as ‘special needs’ pupils by teachers” is not a recommendation and does not feature in the original research which can be read here. It is nothing more than a headline.

Secondly; as a parent I know my child, I know our family and I’d like to think I’d know what is best for my son born at 30 weeks…. but, I second guess myself, wonder about the ‘what if’s’, and crave the reassurance that I am doing the right thing. For these reasons I am so thankful for the work of organisations such as Bliss and Summer Born Children for the support and advice they offer to parents of babies born to soon.

PREM

 

And finally, as an Occupational Therapist I understand child development and neonatal care. I know how critical early intervention can be and recognise that every child is unique. I have advocated in my professional life for all children born prior to 32 weeks to be followed up in their infant years, each assessed as individuals and given appropriate support, if required, according to their own individual needs.

But you know what – premature babies are special!

I will leave you with my favourite response to today’s headline… 

“I’d like them to do an article on the resilience and determination of the premature child….Definitely worth reading about that. Mine is feisty, determined and makes me proud every day.”

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

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

Tommy’s Awards Nomination – a HUGE thank you

I was truly surprised and very honored when my Smallest Things blog was long listed for the Tommy’s Mums Voice Awards at the end of last year.

Although I did not made it onto the shortlist this time, just to be considered was a wonderful recognition for The Smallest Things campaign to raise awareness of premature birth and the needs of parents following a neonatal stay.

I would like to say a huge THANK YOU to everyone who took the time to write to Tommy’s in support of my nomination. I was sent some copies of the correspondence they received in support of my blog. Reading them made me very proud of everything The Smallest Things has achieved in such a short space of time.

“Catriona has worked tirelessly and passionately to bring the issues surrounding premature babies to the public’s attention. She writes from the heart, telling her own story and encouraging others to do the same, to help people understand that having a premature baby or babies is an ordeal that can have a profound effect long after the NICU discharge letter is signed. As a mum to premature twins myself, I’m grateful for the voice Catriona gives to all NICU parents out there, and her campaign to extend maternity leave has achieved incredible support and continues to gain momentum… if anyone can get the law changed, Catriona (and her 11,000+ supporters) can!”

“I feel that smallest things should be shortlisted for the mum’s voice award as it invaluable support for parents of premature babies. I found having a very premature baby to be quite a lonely and isolating experience as although friends and family were very kind they didn’t really understand the grief, guilt and loss that I was experiencing. To hear other people’s stories was very reassuring and raising the profile of the issues around having a premature baby e.g. Maternity leave, will be beneficial to future parents of premature babies.”

“As a grandparent to two beautiful girls who were born too soon I can identify with the message Smallest Things gives. I especially support the call for maternity leave to start when the baby leaves hospital as I witnessed how difficult it was for my daughter to go back to work and leave her two precious girls when they were still so tiny. .”

“I have only fairly recently discovered The Smallest Things. It is so wonderful being able to read the stories of other individuals who have been through the same journey as me….other individuals who write about the pain, the difficulties, sometimes heartbreak but also importantly the joy of having a preemie and experiencing life in NICU.”

smallest thingsThe award which “celebrates a mum who has spoken about her own experience and given hope to others” will be announced at a ceremony in March and I know that any one of the finalists would be very worthy winners for the simply outstanding work they all do.

For me personally it was a privilege to have been considered alongside these amazing women and I not only wish each of the finalists luck but look forward to working closely with many of them in the future in our on-going work to improve the experiences of others.

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

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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 

 

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

 

Fading memories: A NICU World

Parents of premature babies often describe themselves as being on a rollercoaster journey, lost in an environment they don’t recognise or even knew existed. Every birth is different, but the reality of having a baby to soon is very different to any other experience; a reality where the planning and anticipation is dramatically shattered by a sudden arrival and where a mother has to leave her baby everyday.

smallest things

Life inside a neonatal intensive care unit is unlike any other environment and is far removed from what could resemble anything like parenting a new born. Parents sit beside incubators housing tiny and fragile lives. Monitors flash and beep, whilst the sound of air fills tubes inflating the smallest of lungs. Mothers embark on three hourly cycles of expressing; feeding a baby they are not yet able to hold. Fathers split – caring for mothers recovering from often life threatening illnesses or surgery, caring for siblings at home, managing work commitments and spending precious time with their new born in NICU. Relatives are unsure of how to help; friends are unsure of how to celebrate a new but fragile life and parents are unsure of how to be mums and dads in this alien world.

The neonatal unit is a special place, a place where some say miracles happen. Yet it is a world hidden away, not one you could accidently stumble across and with little known about the environment unless you have lived it. For those who have journeyed from room to room, from NICU to SCBU, your experience can be a lonely one and the after care isolating. Whilst NCT groups discuss sleeping through the night, NICU mums worry about making it through the night.

The sounds, smells and even the feel of a neonatal unit are quite unique; a warm sterile environment where parents wait quietly while nurses hurry by. The background hum of buzzing machines fills the air until suddenly interrupted by the ding, ding, ding of a monitor alarming. Your heart begins to beat a little faster. The rigorous routine of hand washing and the smell of soap. The feel of a tiny nappy upon paper thin skin. The delicate wires that mingle with hard plastic tubing, and the feel of the Perspex incubator box. These are the sounds and smells of the neonatal unit. These are the sounds and smells you remember.

The days of neonatal care remain with you and in an instant you can be taken back. It is a journey that for many parents continues long after discharge until finally the NICU sounds and memories begin to fade

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.”

.

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