Tag Archives: Neonates

How can health visitors support families after NNU?

Hello, my name is Charlie. I’m a health visitor and practice teacher. I’m also an IVF mummy to a 32 weeker (who is now 5).

I remember my daughter’s delivery as if it was yesterday. My waters began to go whilst I was doing our local child health clinic. I was admitted to hospital and five days later I gave birth to our beautiful little girl, Emma. I was 32+1 and Emma weighed 3lbs, 4oz. Emma and I are very close, she is my little buddy. One thing which still upsets me still, is that Emma was taken from me at delivery and taken to NNU. This was absolutely the right thing for her, but as a new mother, it is very traumatising. Having your baby taken from your arms by her paediatricians was something I wouldn’t wish on anyone.

I had my placenta manually removed in theatre whilst I haemorrhaged four pints of blood. Whilst I desperately tried not to faint, I could see my husband’s face getting paler and paler. He later described the scene as a ‘blood bath’ and that he was worried he would lose me. I knew I would be ok, but from my husband’s point of view, it probably was a bit scary. I could not fault the care that I received. In some ways, it was a blessing having Emma in NNU as it gave me the time to recover and regain my strength.

Emma spent three weeks in NNU. The staff are amazing. They supported me in breast feeding her and were nothing but kind and caring. However, as a mummy, it can be a really boring place to be. Emma slept loads. So other than expressing milk and writing thank you cards, I did not have much to do. As Emma moved through the unit towards discharge, I remember craving to be normal. hv-blog

Finally we were discharged home. I had no experience as a mother, so reverted back to what I knew, my job. So Emma and I went to the child health clinic I used to run. It felt so familiar, but so different. Many of the other mums came over to speak to me. Those who I did not know made comments on how they had never seen such a small baby before. I just wanted to run away. My baby was not something out of a circus show, she was mine and she was beautiful and strong. This familiar, safe place I had been too had let me down. I felt uncomfortable and isolated.

What this has taught me as a health visitor, is that is does not matter what you do for a living, when you are a preemie mummy, you are a preemie mummy. It is ok to grieve for the loss of ‘normal’. It is ok to feel sad that the paediatrician took your baby away and it is ok to feel like you don’t belong and that your baby is different. I am also very mindful of how daddies feel, we cannot forget that they might also grieve and that they too can feel traumatised. Unfortunately we do not see fathers often, but they are a vital part of the family and cannot be forgotten.

We deliver the Healthy Child Programme to all families, but when you’ve delivered early, you might have missed out on the antenatal. We have good relationships with our NNU’s and often visit families in hospital. I know the mothers I have met have been pleased of the company if nothing else. When baby come home, your health visitor will visit you and your baby for your new birth visit. This is an opportunity to explore your feelings and you can discuss with your HV how best she/he can support you. Postnatal depression (PND) affect 1:10 women, but you are statistically more likely to suffer PND if you have had IVF or suffered a traumatic event, including delivering early. HV’s can support you through listening visits and signposting. Please do not feel afraid to speak honestly to your HV. She/he will not judge or criticise. We are just here to support you in being the best parent you can be for you baby. I have put several preemie mothers in contact in my area and they have found great support in each other. If you are keen to meet another preemie mummy, ask you HV is she knows anyone who has a similar story to you. The chances are they do.

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Preemie mummies and daddies are amazing and preterm babies are gorgeous and special. I’m a very proud mother of my preterm and it is true what they say, “Only special people deliver a preterm baby.” 

 

With special thanks to Charlie Woodley, preemie mum and health visitor, offering important words of advice.

Like what you’ve read? Would like to help us raise awareness? Then click the sharing Facebook and Twitter buttons and make The Smallest Things Matter.

Got a story you’d like to share?  email Catriona at smallestthings@yahoo.com

 

 

Through NICU: 2 becomes 5!

Jade’s triplets were born at 31 +6 by emergency c-section. Below is a poem she wrote to her babies telling them of their NICU story.

Kids before I’m thirty, is what I’d always said.

Kids before I’m thirty, was always in my head.

Lets just try to not try, and then who knows, we might.

Three weeks later pregnant like a bolt out of the night.

I remember waking up in bed, such pain all down one side.

Using Dr. Google left me scared so much I cried.

Seven weeks exactly we went for an early scan.

Sombre like a funeral home full of dreams not gone to plan.

In the room I shakily laid down upon the bed.

Thoughts of loving what I never had running through my head.

I held my breath, I clenched my fists, I kept my eyes low down.

The nurse went quiet all at once and wore a surly frown.

She turned the screen and pointed out three dots for me to see.

Three blinking lights, three little hearts beating inside of me.

I laughed, I cried, I was amazed, and Daddy turned to stone.

No longer would we ever be two people on our own.

“The pain”, she said, “is just your womb stretching out for size.

You need a lot of room in there for growing those little guys”.

And there we were, a family of five, full of wonder and of dread.

Who knew just growing you would leave me cooped up, trapped in bed.

I’m not going to lie to you and say it was all a dream.

Cooking up three buns in you is not as easy as it seems.

Mammy cried and Mammy tried to keep you safe and sound.

Growing day by day I was swollen, stretched and round.

Each little kick I felt from you was a miracle and a fright.

That I might not keep you safe inside was a worry every night.

There are no words to describe what we all went through.

The extra scans and hospital to put off meeting you.

And then far too early for us all water gushing out.

I gave a cry, a fearful gasp, and gave your Daddy a shout.

Dr said you were too early and they had no room,

to care for you three miracles who were coming far too soon.

Mammy taken all alone trying to hold on some more, 

to the Dr’s far away, by now my heart was full and sore.

Sore because I’d failed you and not kept you safe and tight.

Sore because I wasn’t ready for you to come this night.

I felt so guilty that I’d moaned at how my body ached.

That now you were all coming out my buns just partly baked.

But once again you amazed me and held on good and strong.

For three more days you stayed inside but I knew it wouldn’t be long.

My body hurt, my back was sore, nothing was quite right.

A few hours later, a little check, a head was full in sight.

To panic stations was where they went, and wheeled me to the room, 

where you would all be taken out for meeting all too soon.

The next part is not a part I remember very clear.

Too much blood and dropping stats and lots of gloom and fear.

I just recall being comfy and drifting quiet away.

Your Daddy trying to wake me, his memory to this day.

Twelve hours did they watch me and kept us all apart.

Daddy took your photos to hold close to my heart.

And then they wheeled me to you still strapped up in my bed.

To look at you through glass, so many tears I shed.

And that is where I met you, in NICU and in pain.

Knowing that my little life would never be the same.

So delicate and wrinkly, just like a little bird.

So small and perfect you all were, the first, the second, the third.

So many wires, so many beeps, so foreign to us all.

Too afraid to pick you up, scared you were so small.

Fed with a tube and not by breast but milk for you a must, 

Mammy expressing colostrum like actual golden dust. 

And one by one you began to breathe without any help at all, 

And every day became a waiting game for the transport call. 

One by one you were taken away to the Dr’s close to home, 

and once more I sat bereft, just a woman on her own. 

Finally I joined you out of glass and into beds, 

Still connected to the wires, tube fed and lots of meds. 

And so we struggled on and on the hardest time of life.

Leaving you every day alone, my heart hurt and full of strife. 

And finally at three weeks I learned what breastfeeding was all about, 

To hold you close to nurture you, so in love I had to shout. 

To shout about your wonder, shout about your strength, 

To shout about your courage, true fighters breadth and length. 

And eventually the day came when we could take you home, 

To start our new life together we’d never be alone. 

My three amigos, my little clan, my Musketeers so true, 

All for one and one for all, I’ll always be there for you. 

And even though we all came home it’s not plain sailing as they say

But I will be forever grateful every single day.

Grateful in the way you’ve changed me to my very core, 

Grateful that we made it with all that went before. 

I will never be the same, now I’ve met you three.

I never want to be the same, I want to be you plus me. 

And some days will be fantastic and some days we might all cry,

But I can promise you one thing, I will always try. 

I will always try to be the best I can for you, 

And some days I might mess it up and leave you feeling blue.

But I will always love you and keep you safe and sound, 

In a way I couldn’t do it when I carried you first time round. 

I will always try and smile when people point and stare, 

And teach you how to rise above and that you shouldn’t care. 

I worry about when you can understand the silly things they say, 

“Nightmare”, “trouble”, “chore”, “oh bless” a few times every day. 

But they will never understand just what we all went through,

Just to get you where we are a five, no more a two.

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NEW! – “Preemie Proud” Red Book Stickers

Every year 80,000 babies are born requiring specialist neonatal care services in the UK. Their parents face a turbulent journey, often physically and emotionally exhausting and for many it is a journey that will have a lasting impact. I have written about my own experiences as a preemie mum, raising awareness through The Smallest Things campaign about a journey that rarely ends at the NICU doors.

You find yourself waiting to see the health visitor, waiting to have your little bundle weighed.

Sitting in line, waiting your turn, you could be mistaken for any other new mum – a mum who has recently given birth, a mum holding their new baby close.

And yet you’re not a new mum; you gave birth months ago and your ‘new’ baby has already been around the block. You’re already a pro at changing nappies (albeit through incubator portholes) and you have had weeks and months more sleeplessness nights in the bag.

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You remind the health visitor that your baby was born early and as they go to chart their weight you gently remind them about plotting their weight according to their corrected age.

Your baby is 10 weeks old – “Are they smiling yet?” they ask. You shake your head, you’ve been asked this question before.

“He hasn’t reached his due date yet” you reply.

They may not be smiling yet, but your baby has just doubled their birth weight… that’s pretty awesome!

“How are you getting on?” they ask.
“Okay,” you reply quickly, afraid that if you linger on the subject you may break down and cry.

How can you explain that every time you pass a heavily pregnant woman you feel a pang of jealously?

How can you explain that you are still grieving for the loss of your third trimester, the loss of the first precious hold, the loss of a ‘normal birth’ and the loss of weeks, if not months, of your maternity leave?

Do you open up about the flash backs, the worry, the guilt and exhaustion?

How do you begin to explain the pain of having to leave your baby every day.

Smallest Things

As a sympathetic nod to the journey you have been on, a well-meaning health visitor notes that “NICU must have been hard, ….but you’re home now”.

This plays into the common misconception that once you are discharged home from neonatal care your NICU journey is behind you; but for parents of premature babies this is far from the truth.  For instance, we know that 40% of mothers who spend time in NICU experience post-natal depression, (compared to 5-10% of mothers who deliver with no complications at full term); and that more than half of mothers report symptoms of anxiety and post-traumatic stress disorder once their baby is home.

Health visitors, with their specific training, are in a unique position to support the families of babies born prematurely. That is why The Smallest Things are delighted to be launching our new “Preemie Proud” Red Book initiative; a series of stickers that families can use to personalise their baby’s red book. Stickers that will act as a gentle reminder that this mum has been through NICU and may need some more support. Stickers that provide a prompt to use a babies corrected age on their growth chat; and stickers that can form the basis of an initial conversation about the lasting needs following neonatal intensive care.

 

 

 

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Life After NICU – 5 Years on

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

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

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

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

Smallest Things

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

 

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

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

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

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

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

 

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

I think that they will always be….

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

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

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

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

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

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

 

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

A POEM – To all Those NICU First Time Dads

A POEM – To all those NICU first time dads

By Samuel Wilson

 

To all those NICU first time dads,

Your journey will be tough

You’ll cry and laugh and probably yell

‘why can’t I wake up from this hell?’

This nightmare I feel trapped inside…

This fear filled incubated ride.

 

Where life and death lock horns each day

Where you dread the words consultants say

Yet yearn to hear, you need to try

To understand, to reconcile.

‘Why her? Why him? Why us…WHY ME?

Why can’t this nightmare cease to be?’

Yet…

 

Despite the bleeping sounds and lights

Where fluorescent bulbs merge days and nights

In spite of vital readings dropping

And pale blue lips and small hearts stopping.

 

Even with the daily resuscitations

And crash teams sprinting from nurses stations

 

Even with the phototherapy and scans

And long lines, CPAP, feeding plans Through NG, NJ tubes so frail,

 

This tiny girl, her skin so pale

 

And hydrocephalus and drains

From in her spine to ease her pains

Of swelling brains, please stop…no more.

Those words: IVH Grade 4

 

To all those NICU first time dads:

 

Despite this, all of this you’ll smile

And find the strength to reconcile

Those darkest times with future hopes

Of climbing frames and skipping ropes

And realise that markers change

And joyous moments mean so much more,

Where cooing smiles and kicking limbs

Mean more than they ever would before.

 

She fought so hard

To be with you:

Shouldn’t you show the same fight too?

 

Dig deep and go the extra length

And find the will and find the strength

To show the care and love they crave

They’ve already shown how to be brave

 

Consider how your wife has been,

And how she’s fed and nursed and cleaned

Your little child through day and night

And pushed through fear and hurt and fright

 

Take courage from each other here

And share a laugh and share a tear

And soon perhaps just share a beer

And take a trip out to Ikea

And do those normal things each year

That new dads do without the fear

As the pain will pass, it fades away,

With every hour, with every day

Just the wonder of your child will stay.

 

Be strong, for both your child & wife

Enjoy your special, wondrous life.

 

Copyright 2016

Samuel Wilson

 

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Neonatal Intensive Care: A Fathers Journey

My little boy Cameron had to be delivered nearly 2 months early; he had fluid around his lungs and his movements had reduced. We would later come to know he had hydrops fetalis, a life threatening condition.
I wasn’t sure what to expect when I walked into the obstetric theatre, our daughter Beth had been born naturally and was full term and healthy. As well as the usual theatre staff there was a team of 7 from neonatal waiting to look after our boy. The theatre staff were great at keeping us calm and talking us through everything, but I will never forget the deafening silence when Cameron was born. There was no first cry, no tears of joy, no hugs or pictures, just a busy team working to save our son.

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I remember my wife Laura asking me if I could see him, but all I could see through a sea of scrubs was a cracking set of black sideburns – just like his dad!
Cameron couldn’t inflate his lungs so it took them a long time to stabilise him. He was intubated and had chest drains inserted, Laura was ready to go to recovery before Cameron was stable enough to move to NICU.

Walking into NICU that evening was terrifying. Cameron had tubes and wires covering every part of his tiny little body and his alarms were going off continually. The doctors were blunt in that many babies like Cameron don’t make it; he had no figures on survival rates, only that the coming days and weeks would be critical in seeing Cameron respond to treatment and see if the fluid reduced.

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The next day we introduced him to his big sister, it was a hard decision to make, he was so very ill but Beth had been so excited throughout the pregnancy, she needed to meet her brother. I underestimated how difficult it would be, it hit home how sick he was when I took her in. She gave him a little cuddly hedgehog and asked some questions, she took it all in but I struggled to hold it together. She would however become a regular visitor, reading her brother stories, singing him songs and using up all the hand gel! She was a complete ray of sunshine, she said it like it was and easily saw past all the medical equipment.

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I googled hydrops one day for more information, it was very grim reading and I was too scared to google it again so I started googling medical equipment and downloading the manuals, I needed to get a grasp of how they worked. I would take pictures of his ventilator setting every day and became obsessed with his fluid balance and chest drains!

Cameron had so many doctors looking after him, I was desperate for him to get the best care that I took to google again, this time googling his doctors to find out their specialities and expertise! Something that sticks in my mind is one particular doctor who we respected very much, (she saved his life one week!) telling us that Cameron had a fighting spirit in him, that he was most definitely here because he wanted to be. She was so right, Cameron went on to prove this in subsequent admissions to hospital.

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I can honestly say that I learned the true meaning of heartache in NICU. It is a pressure cooker of emotions, complete exhaustion and a constant battle to hold it together when you’re on the verge of completely losing it. But it’s not just about your own baby; you feel the pain of the other parents too. There was a baby next to Cameron that had become really unwell. I didn’t know his parents well but we had shared some chats while sitting by the incubators together. I gave his dad a hug that night and he told me that all they could do now was pray. I’m not religious but I told him that I’d say a prayer for him too. My heart sank the next morning when we saw an empty space where his incubator had been. I think I cried that whole day and night; it brought it home how fragile life is. I still think about that little boy and his family frequently.
I am thankful however for the other parents in the family room, they became such a support, family and friends struggled to understand what we were going through, these people got it without words even being spoken, they were on the rollercoaster too. There was always a chat and a laugh to be had no matter how rough a day you were having, it cheered my days up no end. We still keep in touch with many of the other parents and it’s great to see how our babies are getting on, especially as they all approach their first birthdays.

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I can’t describe the feeling of finally moving upstairs to SCBU. We knew that the next step would be home and we finally felt like parents to Cameron, able to hold him without having to ask, change him and dress him whenever we wanted to and most importantly just able to enjoy him. He was going to be okay, we were soon going to be able to take our boy home!!
Cameron has various health problems and requires future surgeries but he is the happiest wee guy around. He has taught us what life is all about and our family is definitely a much happier, kinder and thankful one for having Cameron in our world.

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With special thanks to NICU dad – Jason Smith, for sharing his journey through neonatal intensive care with The Smallest Things.

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

More time for mums and their premature babies

It’s quite simple really, when your baby is born prematurely you miss out on weeks, often months of maternity leave.

Thousands of people have now signed to extend maternity leave for mothers of babies born too soon and this is what we are asking the government to do….

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.

Not yet signed the petition to give mums more time with their premature babies – SIGN NOW! 

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

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.

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  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.

 

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

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 TEN! | Did you know….

untitled (4)That 1 in 9 babies require special neonatal care after birth?

images9J46MDT1Holding a premature baby close to your chest, skin-to-skin, can help them to regulate their breathing, temperature and heartbeat. This is referred to as Kangaroo Care and can also help with a mother’s milk production, facilitate breastfeeding, promote bonding and reduce stress.

imagesDIPRKXTBBabies born too soon are babies for longer, developing according to their corrected age (according to their due date) rather than their birth date.

imagesTB6KW868The suck reflex of a baby develops at approximately 34 weeks gestation, meaning that babies born too soon are tube fed until they are strong enough to develop and co-ordinate their suck, breath and swallow reflex. Sometimes premature babies will ‘practice’ and develop their suck with the aid of a micro, tiny dummy in their incubators!

imagesJV8WBVK2A mothers immunity is passed to her baby in the final months of pregnancy. Born too soon, a premature baby’s immune system will not be as strong as a full term baby’s as fewer antibodies will have passed between them.

imagesThe cause of premature birth is unknown in 40% of cases.

Premature baby listTo produce breast milk, mothers of babies born too soon will express on a 3-4 hourly cycle. This routine continues while baby is in hospital, including overnight, as mothers bring their expressed breast milk in from home.

untitled (4)Mothers who have spent time in neonatal intensive care are at increased risk of post natal depression, with a high number reporting symptoms of post traumatic stress disorder once they are at home.

images31X5N2ZQBabies born too soon may have lanugo, a soft, fine, downy hair, covering much of their body. This is usually shed between 33 to 36 weeks gestation.

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There is a financial cost to having a premature baby, with parents spending on average an extra £2,256 over the course of their hospital stay. These costs can continue with subsequent re-admissions and numerous follow-up appointments.

cuddles

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And one more – did you know, all premature babies and their parents are amazing!