The Smallest Things & Pampers celebrate World Prematurity Day for 17 November 2017

Sponsored post

#PrematurityIs…

So much of the ‘normal’ birth experience is stolen from parents of premature babies. On World Prematurity Day we’ve teamed up with Pampers to raise awareness of the different journey through NICU

#PrematurityIs…

…fear. One of the overwhelming emotions you’ve told us you feel. Seeing your baby for the first time in an incubator, covered in wires, surrounded by bleeping machines, face covered by breathing apparatus… this isn’t how it’s supposed to be. What happened to the birth plan? For me, like many parents of premature babies, I watched my babies being whisked away to be resuscitated in the neonatal unit.

…finding a new hero. Watching my babies struggle and fight to put on weight, get over infections, breathe, grow, and eventually thrive filled me with awe and respect for their strength. They really are my heroes.

…a rollercoaster ride. As parents on the unit we’d often say it was one step forwards then two steps back. One day you’re celebrating your baby coming off oxygen and the next she’s back on CPAP because of an infection. The ups and downs are emotionally gruelling.

…changing your first-ever nappy through portholes. One of the most wonderful times in NICU was changing my daughters’ nappies and doing their ‘cares’ as it made me feel like a real mum. Six years ago I bought the smallest nappies available – Pampers size 0 – yet even they needed folding over and reached up to their armpits. I was really pleased to hear that Pampers has created a new range for babies weighing less than 1.8lb (800g) called the Pampers Preemie Protection Range and pledged to donate 3 million nappies to neonatal units around the UK & Ireland.

Since the launch of Pampers Preemie nappies, 61 of the 208 neonatal units have received their packs, with over 100,000 free nappies donated to neonatal units across the UK and Ireland.

…learning a new language. You quickly learn to ‘speak’ NICU and get your head around the acronyms. From NGT to CPAP via NEC, PDA, EBM and ROP, I can still remember them all six years on. To this day, I get asked if I’m a medic when I take my daughters to appointments. Nope, I’m a NICU mum and I know too much.

…celebrating the baby steps. In NICU it’s the small stuff that matters. I waited two weeks before I could have my first cuddle with my youngest daughter and I will forever cherish that moment. I remember the first day they were able to wear clothes, how every gram gained felt like a huge success, and going up a nappy size deserved a fanfare. Reaching these premature milestones meant they were one step closer to coming home and becoming mine properly. Here at The Smallest Things we love these cards created by Pampers and Bliss, which will be distributed for free to neonatal units across the UK .

…#NotMatLeave I found out weeks later that my maternity leave had started the day after I gave birth three months early. So those 197 excruciating days spent on the NICU all counted towards my maternity leave, meaning I had very little time at home before I was expected to return to work.

…having two ages. The innocently asked playgroup/bus-stop/passing-time-in-a-queue question I learned to dread: how old is she? No simple answer without a long story. She has a birth age and a corrected age. It’s complicated.

…Not over when you walk out of the NICU doors. Shortly after the euphoria of finally leaving the hospital and going home, comes the realisation that it’s not really over. Frequent medical appointments, hospital readmissions, and uncertain long-term outcomes are the reality for many NICU parents. It’s unsurprising that 63% of mums experience anxiety after being discharged from the neonatal unit. Almost half of premature babies have ongoing medical difficulties after leaving hospital.

In support of Bliss’ social media campaign, tell us what #PrematurityIs to you below or on Facebook, Twitter or Instagram using the hashtag #PrematurityIs and tagging Pampers. For every story shared, Pampers will donate £1 to our friends at Bliss!

Pampers has donated the fee for this post to The Smallest Things.

World Prematurity Day – It’s Never Too Late To Speak Out

What can only be described as what should have been one of the best chapters of our lives started off as one of the scariest time of our lives.

It’s something you think could never happen to you. 

Delivering your precious baby 8 weeks and 4 days early. Completely unexpected, the baby you’ve been carrying, getting excited about, your new life ahead…. 

Then the doctors tell you ‘he’s a tiny 2.13lb’. 

They take him straight off you, they recusiate him, they put him straight into an incubator with a oxygen mask on. 

He was so brave, yet so fragile.


It’s the complete opposite, directly at odds with the feeling you had been expecting. 

I felt robbed of my pregancy. 

Robbed from everything I should have expericed. 

I felt like I didn’t get the chance to be and to feel like a new mum. 

Every day Ted was in the hospital we didn’t quite know what to expect or what we would be told on the ward round each morning. 

Ted was just 1 week old when the doctors called us aside to tell us he’d had a bleed on the brain. 

As young parents we couldn’t quite grasp everything at once, everything that was happening. 


He was struggling with his feeding, struggling to gain weight and he was so up and down. He then had the bleed on the brain, fluid on the brain and everyday was so different and daunting. 

We stayed in the Ronald Macdonald Suite in Arrowe Park hospital for around 5-6 weeks while Ted was cared for in the Neonatal Unit. They told us he would probably be kept in until at least his due date unless anything improved and it seemed so far away.


My partner Chris went back to work and I just continued to in the hospital, counting down the days. It was the most bizare time of our lives. We joked it was like living in the ‘big brother house’, but the atmosphere was so quiet and lonely. We knew everyone there were going through one of the toughest times of their lives and we didn’t really want to engage in one another, not knowing what news they had just recieved downstairs. 

The staff in Ronald Macdonald really couldn’t have been any more comforting and welcoming, and the doctors and nurses in the neonatal unit we can’t thank enough. We owe them so much, without all the help they put in daily we wouldn’t be where we are today. 

Weeks passed and Ted was jumping rooms from Intensive care to High Depenacy and finally into the last room ‘The Nursery’. 


The feeding tubes slowly came out and the hot cot was introduced. He finally started to look like what some people would describe ‘a normal’ baby, ones without wires or tubes all over there bodys, ones you aren’t scared to hold or touch. 

People think that once you leave the hospital it stops there, that everything goes away and it’s all happy. 

That’s not the case. 

I couldn’t shake the feeling from my stomach that someone was going to take my baby away from me. I guess a little bit of me still can’t now and that is where 8 months in it hit me like a ton of bricks. I suffered hugely with anixety, another thing I never really knew about before. 


Ted was one and we finally got discharged from the hospital all together. That meant no more appointments and we could put some of the memorys to the back of our heads now we weren’t going back to the hospital and being reminded. Being told they was more than happy with his progess and he could be discharged was another one of the happiest days of my life, we joke but Ted actually clapped when the doctor told us, right on cue! 

Here is Ted-Joseph our hero 2 years & 4 months on. 


A little man who walks into the room and lights it up – cheeky, happy and full of mischief!

I feel as a prem mum that it is NEVER too late to speak out about how you are feeling and you’re never alone. So many other people have been or going through the journey others have been on. Together we are strong. 

It’s NEVER too late to raise awareness for these tiny precious little miracles, the ones who pull through, and the ones who are taken too soon.

World Prematuirty Day is on November 17th – will you share Teds story and help raise awareness?

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

Remembering Eva: Babyloss Awareness Week and Wave of Light 2017

On Sunday evening, at 7pm, thousands of candles will be lit around the world to remember all the babies who have died. As Babyloss Awareness Week culminates in the Global Wave of Light, bereaved parents, friends and family come together to remember. Each flickering flame represents a tiny soul no longer here, a story of hope that ended in pain, a life not lived, enduring love translated as grief.

Eva Sophia Boyle

Eva Sophia Boyle

My own flickering flame will burn in memory of Eva, my daughter who died on 23 February 2012 aged six months following surgical complications and 197 long days in NICU. There will always be one missing from my family and there are days when living without watching Eva grow up feels like a life sentence. But I must go on. For my living children, and for Eva. She didn’t get a chance at life so I owe it to her to live mine to the full and to seek out the joy.

Ways to remember
For us bereaved parents, remembering our babies is all we have. So we find ways to commemorate our babies, to make sure their memories live on. We let off balloons on anniversaries, engrave plaques and pebbles, stitch quilts, hang stars on trees, make cakes, tell others, share stories, write blogs and light candles.

And it helps. It has helped me. Eva has inspired me to climb mountains, raise funds, start running, become a befriender, speak out and try to improve care. She’s doing amazing things despite not being here. Eva has introduced me to a wonderful, supportive community of similarly heartbroken parents. There is comfort in coming together with others who have lost babies. It’s a club nobody wants to join but when you find yourself sleepwalking through its doors, you’re so grateful it’s not empty and you’re not alone.

So on Sunday I invite you to light a candle at 7pm and let it burn for an hour, in memory of all the lost babies and also to show hurting parents they’re not alone. Please share your photos and tell us the names of babies you’re remembering.

Eva Sophia Boyle, this blog is for you.

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Eva’s sisters, Iris & Charlotte #WaveofLight

This post is also dedicated to Gia, Noah, Seamus, Laura, Charlie & Joshua, Heidi, Abigail, Bobby & Ryan, Sam, Jacob & George, Ethan and all the babies gone too soon. Always loved, always remembered.

#saytheirname
#babyloss
#babylossawarenessweek
#waveoflight
#breakthesilence

iPhone5 697
https://babyloss-awareness.org/about-us/
 

Written by Sarah Miles

 

Supporting Parents of Premature Babies – New Guidance for Employers 

Each year 95,000 babies in the UK require specialist neonatal care. Worry and uncertainty form part of the daily routine, and all the while mothers spend this time, their maternity leave, visiting their fragile baby in hospital. 

Returning to work is far from their mind. 


New ACAS guidance published today aims to;

  • support working parents with premature or sick babies 
  • help employers to support staff who have given birth to premature or ill babies

Business Minister Margot James MP said:

“Working parents deserve support at work, and those who have premature babies should expect nothing less than total backing from their employers at what can be an exceptionally difficult and worrying time. 

Most employers already treat their staff with compassion and flexibility. This guidance removes any doubt for parents about what their rights are and lets employers know how best to provide support.”

The Smallest Things met with Minister Margot James and Steve Reed MP to discuss the #NotMatLeave Campaign – Dec 2016

The Smallest Things helped to shape the guidelines, working closely with Acas to ensure that the realities of neonatal care as well as the ongoing difficulties faced by parents were included. 

Welcoming the new guidance, The Smallest Things Founder and Chair Catriona Ogilvy said;

“The Smallest Things has been campaigning for better employment rights for parents of premature babies for a number of years. The publication of the ACAS guidance is a big step, recognising for the first time the unique needs faced by parents following premature birth.

While we welcome the guidance, support must be available for all families affected by premature birth. We particularly welcome therefore the Ministers commitment to reviewing the guidance, including taking future additional steps if needed, such as legislative changes.”

——————–

The Smallest Things has campaigned for an extension in paid statutory maternity leave for mothers following premature birth. 

Recognising the significant emotional and financial cost of time spent in neonatal intensive care, extended leave would give a mother 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.

Last year a change.org petition calling upon Minister Margot James to extend maternity leave for mothers of premature babies gained nearly 130,000 signatures. 

In a Mumsnet Editorial Minister Margot James said;

“I am confident businesses will welcome these new guidelines and act on our advice, but I will of course keep progress under review, and do not rule out legislating in the future if our advice is not heeded.”

Too Small, Too Soon – I Couldn’t go Back to Work 

My son Louie was born in July 2016, 12 weeks premature. He spent 116 days in neonatal intensive care, nearly 4 months, and came home on at the end of October. It was the second best day of my life, the first being the day he was born – even though that was an emotional rollercoaster! 

Louie on the day he was born


Louie went through a lot during his stay in NICU; breathing problems, chronic lung disease, NEC, suspected meningitis, metabolic bone disorder, growth problems and a hernia repair. 

He came home on home oxygen as well as lots of medications. How could I possibly leave my baby after only 2 months of having him home?

I could have taken the rest of my years entitlement, then it would have been 9 months that Louie would have been home; but I still didn’t feel as if I could go back so soon. 

I couldn’t trust anyone else, apart from my partner who worked full time, to give Louie his meds and to check his breathing, making sure his oxygen was ok. And what about all his appointments and check ups -how could I take all this time off work? So I decided that I couldn’t go back….

I am currently a full time stay at home mum and even though it is hard financially it has to be done. 

Louie is now 14 months old and he’s still so tiny, weighing just over 14lbs. He isn’t sitting on his own just yet, although he thinks he can! His mind wants to do things but he’s just isn’t physically able. 

Would more time have helped? I think so. Longer maternity leave may have prevented me from handing in my notice. I could have used that time to adjust, to have found care for Louie, someone I could trust. Any mum will always do what is best for their baby and at the time and looking back I knew I was doing the best thing for Louie and for me. 

Louie aged 14 months


I really hope the government will look again into this matter. No one wants their baby to be born early and with medical problems. How can it be right that we are denied time with our babies or forced to give up work? Having a premature baby is nowhere near the same as being the mother of a healthy full term baby – our circumstances are totally different and our maternity leave entitlements should be too. 

Louise Harrison 

If you agree with Louise, please sign The Smallest Things petition to extend maternity leave for mothers of premature babies. 

My Tiny Warrior, Off to School

My little one Harry is starting school this September. He was born at 29 weeks, weighing in at an impressive 4lb 4oz (some of the weight was due to him carrying extra fluid because of a kidney disorder). He spent over two months in NICU. 


I look at Harry today and I never cease to be amazed at the remarkable little boy who stands before me. I think back to the beginning of his journey, and how we weren’t sure he would even survive. The most vivid memories are of times spent next to the incubator, putting my hand through the plastic porthole and placing my finger gently in the palm of Harry’s hand. Those tiny fingers would grip my finger firmly. It felt almost as if Harry were trying to convey to me that he was hanging on, he was fighting and I shouldn’t worry so much. The tiny fingers which were almost translucent, little nails barely formed, the skin red because his body hadn’t matured enough to cope with life outside of the womb. I remember when he would open his eyes and look around. These big, beautiful eyes which seemed so knowing. Harry looked (to me) like a wise little owl.  


When I took Harry for his last day at nursery in the summer, I held that little hand in mine. The hand that used to be so very tiny, so fragile, now gripped my hand squeezed it before he ran off after his little sister, laughing as they splashed through puddles. My tiny warrior. It struck me then how far he had come.

And now to school. I am worried about that first day, how am I supposed to keep it together? I will have to try and shut off my reality that I have watched my boy fight for his life. I have watched him get very sick over the past four and a half years, and I have watched him get well again. A constant cycle of normality and terrible fear. I have held Harry in NICU as his face turned grey and he stopped breathing. I have held Harry as he has battled infections and sepsis over the past few years. I most recently held him as he battled through low potassium levels, fever and dehydration (he has Bartter Syndrome, a rare genetic kidney disorder). To watch him go to school, there will be a huge amount of pride, but also the fear of wondering how he will cope. Given the battles he has already overcome, school should be no problem (says my rational side).


So, I will try my best as he goes to class. I will let go of that not so little hand. I will smile and wave and tell him to have a good day, and that I will see him at home time. And as I walk away, I may allow myself to feel the enormity of it and give in to tears. My tiny warrior, off to school!

Ellie Hepburn 

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

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Bedrest – the Stuggle to Hold on to Tiny Life

My bedrest experience began in Jan 2015. I was 19 weeks pregnant with my 3rd child and was attending a follow up check at St Thomas’ Hospital in London, having had a stitch placed at 9 weeks in my cervix to prevent it opening early. An internal scan to check the stitch was doing it’s job yielded the worst possible news, my cervix had changed, I was 2cm dilated. 

I was distraught, the reason I had needed the stitch in the first place was because just 8 months earlier I had given birth to my second daughter at just 22 weeks and 6 days. With her my waters had broken at just 18 weeks, as a result of my cervix opening early. My daughter, Maya, lived for just 20 minutes. In my mind history was about to repeat itself, it seemed so unfair.

The team decided to place a further stitch, which they were able to do later that day and I stayed in hospital for a week. This was to be my first taste of hospital bedrest, the early days were a mix of sheer terror and boredom, forbidden to do anything except go to the toilet and have a quick sit down shower. Thankfully I got talking to fellow patients, some of whom were in a similar situation, there were bursts of conversation, the topics varied greatly, although a common theme was what to choose from the menu! Mealtimes helped break up the day, as did the ward rounds.


At 20 weeks I was discharged home. The feeling was that if anything would occur labour wise, little could be done to help the baby as she was under 24 weeks, so the plan was that if I made it to 24 weeks I would be re-admitted, and that way if baby did arrive she could be helped immediately.

Leaving hospital was difficult, although I desperately wanted to go home, I craved the reassurance of knowing staff were available if anything happened. At home my mind ran riot. Everyday was a challenge not to think the worst was going to happen, every trip to the toilet became a session of paranoid pad checking. Equally difficult was the challenge of staying on bedrest whilst everybody was running around doing the jobs I was meant to be doing; tending to my 6 year old, the school run, housework, cooking. Occasionally I would try to help my stressed husband, who was working full time by getting our daughter breakfast, or washing up, only to spend the rest of the day fretting that I had overdone it, panicking that those new twinges meant I caused further damage. Not knowing what was happening inside was torture.


At 24 weeks I returned to St Thomas’, although I was elated we had come this far I was also despondent about the situation ahead. St Thomas’ isn’t our local hospital, it is over 90 mins away from our home by train. For reasons I won’t include here I was unable to get the care I needed locally, so had sought a second opinion and that had taken me to St Thomas’ and their preterm surveillance clinic. It was the best place to be, but it meant only being able to see my husband and our 6 year old daughter Anjali on Saturdays. It broke my heart being separated. 

Whilst I was in hospital in London my husband continued to work fulltime. Anjali went to school then had to go into afterschool club. We had to hire a cleaner once a week and my friends between them helped cook meals and plug the gaps.

Whilst life continued in a different way at home I was left pondering the fate of our baby, who was growing bigger by the day. Each week on a Wednesday morning I was taken downstairs to the prem clinic, each scan revealed that slowly my cervix was dilating, the pain I had become accustomed to over the last few weeks was in fact the stitches slicing into my cervix as they struggled against the growing weight of the baby. The only thing slowing the whole process down was bedrest. From 25 weeks onwards my reality was that I would be having a premature baby, not if but when. I struggled to come to terms with this and found myself with the hours to kill becoming increasingly angry with the whole situation.

Prior to bedrest, prior to difficult pregnancies I had often joked how lovely it would be to be able to lay in bed and do nothing! As many of us with busy lives have, but the reality was nothing like the dream. Physically you ache all over after time, it’s difficult to get comfortable, I had to have daily injections to reduce risk of blood clots, then there was the surgical stockings…

Days were spent trying to keep grips on a sense of routine, trying to fend off boredom. The urge to sleep was enormous, but that meant being awake all night, and things always seem worse at night. The staff were lovely, chatting with them as they whisked about their day helped immensely. I would find myself asking them all kinds of questions, desperate for any light hearted conversation that could distract me from the thoughts of preterm labour. At times the atmosphere on the ward was incredibly tense, woman would come in early labour waiting for a bed on delivery, others would come for induction, some like me were waiting, praying for nothing to happen. During my time I became extremely close to several other patients who I remain in touch with today. We shared our fears, laughed together, listened quietly whilst we took it in turns to cry. Sadly one lady delivered her baby sleeping, we were all devastated, that little angel holds a place in my heart forever, as does her mother.

Time moved on, and at 28 weeks I was transferred back to my local hospital. I was delighted to be back nearer home, and had hoped that there may be a possibility that I could be discharged, however that hope was quickly dashed as I was nearly 6 cm dilated. Seeing my daughter and husband every day was the best thing ever, however here I had been placed alone in a side room and now the prospect of staying in hospital until delivery seemed even harder. The frustration of the past few weeks bubbled up and I became increasingly tearful. Although I didn’t want to deliver a premature baby the thought of another 8 or so weeks on bedrest in hospital seemed unbearable.

Wednesday 25th March I was exactly 29 weeks pregnant, it was the 1st anniversary of when my waters had broken with my second child Maya, and exactly 11 months since her birth. I felt increasingly agitated as the day progressed, not helped by the fact that the Consultant on duty was the same one present at Maya’s birth, nor that I found myself lying in the room directly below where she had been born. It felt like the universe was having a laugh at my expense and the sense of unease continued to rise. I was convinced that if my waters broke today, my baby would die. Isolated in a side room it was a real battle. The day passed without incident however, and that night, exhausted I fell into a deep sleep.

Thursday 26th March, at 5.20 I woke up feeling something was wrong. Upon moving to call the buzzer I immediately felt a warm gush, my waters had broken. Panicked I rang the buzzer and staff were in the room almost immediately. I had been on bedrest for 10 weeks, and now it would be coming to end, I wasn’t ready! Suddenly the prospect of further bedrest was what I wanted more than anything, as the reality that my baby could soon be delivered dawned.

I was taken to delivery and from there things moved pretty fast. After weeks of inactivity I was surrounded by medical staff. A scan showed the baby was transverse, there was real concern of cord prolapse and so the decision was made to deliver by c section. Neonatal staff came and briefly introduced themselves, theatre staff, so many questions. Then baby decided she’d had enough, her heart rate showed she wasn’t happy so the questions stopped and we were on our way to theatre, and at 9.53, Priya was born weighing 2lb 15 oz.


After 10 weeks of bedrest I was free to move about again, but it came at a cost. Priya was now for the time being confined to an incubator, her tiny body hidden in a tangle of wires and the guilt was incredible. I felt like I had achieved nothing. Being on bedrest is a real feat of physical and mental endurance, when you start it you have no idea when it will end, you hope to keep pregnant for as long as possible, complaining about it’s discomfort is immediately followed by a sense of guilt, at times it is simply impossible. That said, many of us do it, we enter it without thought, sacrifice our bodies and minds in our desperate bid to protect our unborn babies, we are mothers before our babies are born.


Now when I reflect upon that period, I can do so with a sense of pride too. I faced losing Priya at 19 weeks, I never dreamt I could hold on for as long as I did. There are days when I simply can’t believe I did it, not only me but my family too. The whole experience turned our lives upside down, our routines had become transient, subject to change at any moment, yet somehow we muddled through.

As my bedrest journey came to an end, Priya’s neonatal journey was just beginning, it would last 67 days and was a real rollercoaster that saw her fight for life at just 8 days old due to NEC and a perforated bowel. She came through and today is 26 months old. 


Her story continues, and as it does the value of those 10 weeks of bedrest becomes more and more evident. For those on bedrest now, I would simply say this – nothing lasts forever, bedrest will come to an end, just take each day as it comes, and keep on cooking!

Catherine Jayaram

Matthew and Thomas: 23 weeks – Born Too Soon 

Up until May 2016 we had the youngest surviving 23 weeker twins in the U.K. That’s quite a fact isn’t it? 

Maybe some would be proud of this and others, like me, fearing the prospect of unwanted media made us feel somewhat, isolated. Regardless, the fact my twins were born so early has to have been one of the most frightening times of mine, my husband and step daughter, Lucy’s life.


I gave birth to Matthew and Thomas on two separate days, 27 hours apart on 1st and 2nd October 2015. They were born at 23+2 and 23+3 week gestation. They weighed a tiny 520g and 560g and were only the size of my hands. 

Labour itself was traumatising. Because viability is such a controversial debate with the consensus believing that intervening with sustaining life should be from 24 weeks onwards (well, government and medical professionals anyway!)

The fear my husband and I faced during the 103 hours of active labour petrified us … my consultant wanted to save the boys and had me on magnesium sulphate, diamorphine, entonox…. everything possible to steer contractions away. But then shift changes at hospital and we were faced with several different doctors – some of differing views and some who would give us the harrowing facts that actually, these boys wouldn’t make it. 

However – their strong heart rate and no sign of distress told everyone otherwise.


They both arrived breathing, Matthew first – crying! He arrived making a sound!… Thomas, was a little more difficult as I had become so gravely unwell. 

It had been a matter of life and death for me. 

But they arrived and their journey began!

They spent 5 months in SCBU and defied medical history with fighting for their lives with NEC, infections, Pneumothorax, PDA, countless blood transfusions, chronic lung disease with home oxygen and ROP.

Thomas came home first and 4 days after, Matthew did.

These short days at home were the most craved for moments we will cherish for the rest of our lives… no doctors, no beeping of machines, no specific care times, cuddling in for as long as we wanted, dressing them how we wanted. It was amazing, but sadly short lived. 

They were 5 months old (1 month corrected).

On the day of Matthew’s home coming, Thomas had spent 4 glorious days at home with me before sadly, he became acutely unwell and struggled with breathing. 

He went into respiritory distress and I had to resuscitate him. I’m a nurse and you’d think something like this would come as second nature. But my “mummy” head just felt so frightened, both my husband and I went into “fight or flight” mode and then the next thing we knew, we were in PICU, Thomas intubated with saturations of only 34% and an initial diagnosis of bronchiolitis. 

Secretions sent and returned with positive of H1N1 influenza type A (swine flu). He was oscillated for weeks with an unknown prognosis. 

During this time Matthew continued to grow at home, without his twin. 

We spent long hours each day with visiting Thomas, some days Matthew wasn’t allowed to be with him due to cross infection. It was really such a testing time… back on that rollercoaster we all knew in scbu. I felt I had to tear myself into several different people. I started to become robotic in my approaches in order to make sure BOTH boys had their mummy.

After treatment from swine flu, Thomas eventually came off the oscillator and back onto the conventional ventilator. 
We thought there was progress however, each time they tried to extubate him, he would desaturate… as low as 17. He just couldn’t cope without the pressures and support the ventilator would give.

Eventually, we agreed a tracheostomy would be the way forward. Thomas seemed to thrive following this – as of it was the best thing to help him turn a corner.

Dad and I did some intense tracheostomy training, resus training and started to plan discharge. 

Matthew was allowed to spend more twin time with Thomas and we eventually roomed in after almost 3 months of utter turmoil. 


During our rooming in, Thomas became very quickly, acutely unwell. 

Too many secretions with 5 minute interval suctioning. He brewed an infection and became a PICU patient again. 

He progressively got worse and pressures were at the highest they could be with 100% oxygen requirements. 

He slowly started to desaturate. As a mother to watch the monitors show deterioration as your son smiles at you and sucks his dummy, you just can’t comprehend that he was getting worse.

But he did and the consultant asked to talk with me.

The worst news was given and Thomas was losing his battle. He was almost 8 months old.

We had to withdraw care and make that harrowing decision that no parent wants to face and that was to turn off his life support.

He passed away peacefully in our arms on 11th May 2016 with his twin, Matthew close by.

It’s been just over a year now. It’s been an excruciating, raw and sad time for us a family. Their big sister, lucy who was 11 at the time still attended to her exams because she wanted to do her little brother proud and didn’t want to take too much time off school.

My husband had to return to work because we needed an income – he suffered but “got on with it” as many of you all would agree, dad’s just do. He became my only solid rock – because he was the other person to witness and go through it. He is such a brave and strong man. We call him our hero because he just tried his best to look after us all and protect us from the sadness.

Matthew – continued to grow. He’s 20 months old (16 corrected) and for a baby that was given a poor prognosis due to his grade 3/4 right sided PVL… he’s now crawling, pulling himself up and enjoying nursery.



Me? … I was diagnosed with PTSD. A learning disability/mental health nurse with a mental health problem?!… it’s a stigma and it happens. I’m human and trauma can affect us in so many ways.


I spent months having horrendous flashbacks, triggers, grief disorder, isolation, losing friends because of my grief, completely shutting down. 

I couldn’t go to Asda without simple triggers and bumping into people who would ask “how’s the boys?”… whilst dealing with the ongoing additional medical needs of Matthew who needed me, needed me to be his mummy. 

I was scared of seeing people, I was scared of groups of people and petrified to interact and socialise. It was always safer to simply, stay at home. Because, this way, Matthew won’t get poorly and end up like his brother.

I agreed to have intense psychological therapy, along with pharmaceutical intervention (medication) I slowly started to open up and I blogged about the boys’ story and my PTSD in order to build awareness. To share with people the positive and negative affects it has to be parents of premature babies. To express immensely about viability. Blogging became a huge part of therapy for me. 

What has me “Just Surviving Somehow” is that I still have one of my two miracle of baby’s – he’s here, he’s happy and he’s thriving. 

Importantly, I needed to share awareness of PTSD. Over 60% of mothers going through a SCBU journey and loss of a child will experience post traumatic symptoms. Other post-partrum illnesses are on the rise and often, mum’s feel too afraid to speak out or seek help.

I feel able to share openly our journey as a family now. I’m in a bit of a better place to share it.

I’ve recently gained the courage to go back to work. It was such a hard decision considering I never thought I’d ever return to employment, when institutionalised in a hospital environment was almost 8 months, all day every day, feeling helpless and becoming overly obsessed with hygiene, I never thought I could ever return to nursing.

It’s a slow and progressive process but I’m getting there.

We miss Thomas so much. Not a minute goes by where we don’t think of him. Our home is covered with memories of Thomas and I talk about him all of the time.

Both our boys are truly amazing. The resilience in our preemie babies is breath taking. Their fight, their bravery …. they truly are angels of earth!


I’ll always remind Matthew of his brother, of both their fight, of their strong will to survive. 

I’m so proud to be Matthew and Thomas’s mummy. 

Once an NICU Mum, Always an NICU Mum 

As a little girl all I ever dreamt of was being a mum. I never dreamt of my career, I just dreamt of having my own family around me. Never in my wildest dreams did I think our journey would be so difficult.

In March 2013 my husband and I got married. We knew we wanted to start trying for children straight away and of course I thought it would happen quickly. Oh how wrong I was! 

I was soon sitting in the fertility clinic, being diagnosed with PCOS and prescribed Clomid. After a couple of rounds we got pregnant and we were elated! Our joy soon disappeared though as I miscarried. It was hard to take, but we picked ourselves up and plodded on. The consultant suspected I had a bicornuate uterus and thought he may be able to operate to give us a better chance at carrying a healthy pregnancy. I went down to theatre to get ‘fixed’ and remember waking up from the anaesthetic and asking the nurse next to my bed ‘am I fixed?’ She told me ‘no’, the consultant couldn’t operate and I broke down. The consultant came to see us and told me something I didn’t even know was possible. ‘You have something called Uterus Didelphys’. I looked at him like he had just told me I have two heads…. I was close – TWO WOMBS. Yes two wombs and two cervix!!

I fell pregnant for a second time in December 2014, but sadly miscarried. While I was waiting for a new cycle to start to take my Clomid I fell pregnant again! This time my consultant stepped in and prescribed me progesterone pessaries to use everyday and low dose aspirin to help the lining of my womb and the blood flow. It worked!

7 weeks came and went, 8 weeks, 9, 10…. When I got to 12 weeks I couldn’t believe it, I was starting to have hope this could really be it. I had a couple of scares with bleeding etc but all was fine. 

The risk of me being pregnant with uterus didelphys however was premature birth because my womb is half the size of a normal womb. I got to 26 weeks without a hitch and then I noticed that my baby boys movements had slowed right down.  I was admitted into hospital where I was given steroids injections and monitored every 4 hours. After two nights I was discharged home and was able to celebrate my birthday. 10 days later though, when I was attending my 28 week growth scan, they weren’t happy with babys size – yet again I was admitted to the maternity ward and monitored. 

My husband left the hospital to go home at 11pm and by 1am he was called back as they weren’t happy with babies trace. I was rushed down to theatre for an emergency Csection, delivering my baby boy at 28 weeks! 12 weeks early! I had no idea what to expect but it was my worst nightmare. A very poorly baby boy.


The first time i got to see my son I was called down because he had stopped breathing and they couldn’t get the ventilator into his lungs. 

I walked into a world I never knew existed. The beeps, the smells, the constant hand washing and antibacterial gel. Seeing my poor little human covered in wires and surrounded by nurses and doctors in a panic. It’s a sight I will never forget. The first time I met my son he was moments away from death. 

Thankfully they got his breathing under control and I was able to sit with him and start to examine this little man that we had made. He was beautiful, so tiny, but all ours.

The first two weeks is a blur, I remember feeling numb. I never dreamt it would be like this, giving birth to your child who is then snatched away, put in a glass house plugged in to 15 plus machines needed to give him life saving medicine. I was a spectator, I had lost out on that chance to be a Mummy. 

I was still mourning the loss of my third trimester – this isn’t how I should have been spending the last 12 weeks of my pregnancy, in a stuffy intensive care unit in the middle of summer, watching my child fight for every breath. 


Paralysed from medicine to help him get stronger. His face and body were so swollen. The staff used to come into work wondering if he would still be there. Sickest baby on the unit are given 40% chance of survival. That is not how I should have been spending that time. My missing trimester.

Being an NICU mum there isn’t a lot you can do for your baby, so the few things you can do you grab with two hands. Expressing is key for a premature baby, so anything I could do to give him the upper hand I was willing to do. Everything revolved around expressing, but it was a struggle. Why couldn’t I produce more? What is wrong with me? Why could I only fill half a bottle when I see other mums coming down with multiple! It was heartbreaking. Just call me the 30ml mum. In the end, due to surgery while my son was still in SCBU, my milk completely stopped so we had to move to formula. I had tried my best and as much as it broke me I knew I had given him everything I could.


Being an NICU Mum is lonely. Although you have all of these other people around you, you are cut off from the outside world… Cut off from reality. If you’re lucky, which I believe I am, you can find some special friendships while riding the rollercoaster of SCBU.


After a lot of ups and downs we FINALLY got to take our precious boy home! Bags packed and oxygen in tow we were leaving the NICU, our home for the past 97 days. It was scary, but we were so ready. Ready to start our life as a family of 3.


Our not so little boy is 22 months now. He has a lot ahead of him but we are so proud of how far he has come. The NICU will always be a part of our lives and even after not being there for over 18 months our minds always wander back there. Christmas, NYE, Easter any occasion we will always think of NICU and the families past and present. Each journey in the NICU can be so different but there’s one thing which will always stay the same ‘ONCE AN NICU MUM, ALWAYS A NICU MUM’.


With special thanks to Sophie for sharing her story through pregnancy and premature birth. 

If you’d like to help The Smallest Things continue to raise awareness, please SHARE Sophie’s story – it’s easy, just hit the Twitter and Facebook buttons now!

Got your own story of NICU and premature birth to share? Email Catriona at smallestthings@yahoo.com

New Report on Life After Neonatal Care

Today The Smallest Things published their 2017 ‘Life After Neonatal Care Report. Read the full Life After NICU Report 2017 here and see below for the executive summary.

EXECUTIVE SUMMARY

The Smallest Things Life after Neonatal Care Report shares the findings of more than 1,600 mothers and is thought to be the largest survey of the needs of children and parents following premature birth in the UK. The report, which includes first-hand accounts from parents, demonstrates the complex nature and often interlinking difficulties families face following premature birth. From maternal mental health, family life, ongoing medical needs, re-admission to hospital and special educational needs, the results clearly outline a lasting journey through which parents struggle to find support.

 

Maternal Mental Health

  • 63% of mothers report experiencing anxiety following discharge from neonatal care
  • One third of mothers reported feeling isolated following neonatal care.
  • 44% of mothers had flashbacks to their time in neonatal care.
  • 61% of mothers reported feelings of guilt following premature birth.
  • 26% felt that their health visitor understood theirs or their baby’s needs

Ongoing Medical Needs

  • 48% of premature babies were re-admitted to hospital following discharge home from neonatal care.
  • 46% of children have ongoing medical difficulties following premature birth.
  • More than half of parents worried about the long-term outcomes for their child.

 Family Life

  • Only 35% of mums were able to attend mum and baby groups.
  • Nearly half (49%) reported that having a premature baby affected their financial circumstances.
  • 1 in 3 struggled to keep up with social friendships following neonatal care.
  • 14% of mothers were unable to return to work as a result of their child’s health needs.

Special Educational Needs

  • 44% reported that their school age child had additional learning needs.
  • More than half of those had, or were applying for an Education, Health, Care Plan

Conclusions and Recommendations

The report concludes that there is an urgent need for continuity of care from hospital to home and that additional training must be made available to community practitioners in order to identify and support the specific needs of premature babies and their parents. A running theme throughout the report is the lack of awareness of the lasting journey of prematurity and the far reaching impact upon maternal mental health and family life.

Key recommendations include that all NICU parents must have access to timely and tailored psychological support, addressing the often complex mental health needs following discharge from neonatal care. In addition, parents should be encouraged to inform early years and primary school teaching staff of their child’s pre-term birth, supporting early identification of additional learning needs.

 

The Ups & Downs and Twists & Turns of NICU

I went into labour at 23 weeks + 2 days with my identical twin boys. It has truly been a roller-coaster ride of ups and down, twists and turns – and our story isn’t over…

Throughout the pregnancy everything was fine. I attended regular check ups and scans, and both boys were developing really well. Then, on the 15th October, I went into spontaneous labour. At 8.36pm twin 1 was born, followed by twin 2 at 8.42pm. Both weighing just 580 grams each.

It was the most terrifying moment of my life. Not knowing if they were going to survive was heart breaking.

 

Jace Eli Twin 1.jpg

Eli Jace – Twin 1 weighed just 580g

 

Both boys were rushed off to intensive care where the doctors and nurses worked round the clock to help them to survive. When I saw both boys my heart ached for them. I just cried. Seeing them struggling to adapt to the outside world was hard and we couldn’t do anything except watch, wait and cry. Sadly 6 days later twin 1, Jace Eli, passed away. He really struggled with the transition from womb to world and his tiny lungs were just too immature.

Emergency Surgery

Twin 2 Kellen Jace was the weaker twin, having been given a hour to live after birth, but he was fighting to live. As days passed Kellen had so much stuff to fight – various infections, high blood pressure, a grade 2 bleed on his brain, chronic lung disease – he needed numerous blood transfusions and at 4 weeks old Kellen developed Necrotizing Enterocolitis (NEC). He had to have emergency surgery to remove part of his bowel and needed a stoma. It was touch and go if he was going to make it through the surgeryE.

 

Kellen

Kellen – Twin 2, weighing just 580g

I got my first hold 55 days after he was born. It was truly magical. Kellen was ventilated for the first 13 weeks of his life, he had been given steroids to help wean him off the ventilator and 2 days before Christmas he was put on BiPAP. He was slowly making progress.

Dad had his first hold on Christmas Day which was the best present ever!

Laser Eye Surgery

Over the weeks Kellen became stronger and was weaned on to CPAP, but then in early January 2017 he was diagnosed with stage 3 Retinopathy of Prematurity (ROP). He needed laser eye surgery. Thankfully the surgery was a success and he didn’t require any more laser surgery, but due to Kellen being cannulated so many times the doctors were beginning to struggle to access him to give him his nutrition (TPN) and medicines. So, he needed to go back to theatre. They fitted a broviac line so doctors were able to have better access, however Kellen took a turn for the worst  a few days later. He developed an e-coli infection for the 2nd time and ended up back on the ventilator.

The doctors were worried he would struggle to get back off it. His lungs collapsed and they were badly affected so he was given a second course of steroids. Kellen started to make progress a few weeks later and was put back on to BiPAP where he was weaned again onto CPAP and then high flow. He was making progress again and was determined to fight this nasty infection. Kellen managed to get onto low flow and continued to do well.

kellen .jpg

Kellen spent 138 days on NICU in the Jessops hospital in Sheffield before being transferred to Sheffield Children’s hospital on 2nd March. He was doing well, we were hopeful, but a week later he developed 2 infections – 1 in the broviac line and a chest infection. For such a tiny baby it knocked him sideways, really struggling with his breathing and needing to be put back on high flow.

Surgery… again…

Recovering from both infections with the help of strong antibiotics, Kellen then needed yet more surgery. The broviac line he had had fitted in January stopped working and as his veins were still so weak the doctors had to fit another line to keep access. The surgeon carrying out the surgery also managed to reconnect his bowel back together at the same time. Which was a massive relief as it meant only one additional surgery instead of two.

A Little Super Star

Since the surgery took place on 11th April 2017 Kellen has done amazingly well! He is still in hospital after 6 and a half months, but he is on the right road. He is gaining weight, now weighing 5.4kg (11lb 14oz) and  has recently started bottle feeding. The nurses are looking to train me and dad up for his oxygen and tube feeding at home and although we haven’t got a date of when we can bring him home we are just so glad he has been able to fight through everything that has been thrown at him.

kellen 6 mths

Kellen at 6 and a half months old, although just 11 weeks corrected age

He truly is our little super star. 

Ganelle

The Smallest Ever Nappy for The Smallest Things

Sponsored post

The Smallest Things introduces… the smallest nappy!

My baby was three days old when I first changed his nappy. He was tiny, a life-support machine helped him to breathe and lines and wires covered his body. I’d not yet held Samuel and as I placed my hands through the incubator portholes I was terrified! His legs were so small that I couldn’t feel any weight as I lifted them, manoeuvering them amid a host of tangled wires into a ‘micro’ nappy that swamped his fragile body.

This first extraordinary nappy change is a reality for thousands of parents of premature babies, and one of the reasons why The Smallest Things was delighted when Pampers asked us to help spread the word about the launch of their smallest nappy ever!

The Smallest Nappy for The Smallest Things, fits in the palm of your hand

Fitting in the palm of your hand, the Pampers Preemie Protection P3 nappy is three times smaller than a regular newborn nappy and designed to meet the needs of the tiniest babies in neonatal care. I remember longing to be able to ‘see’ my baby. Nearly every inch of him was covered; breathing tubes across his face, a mask to protect his eyes from the ultra violet lights, wires and lines over each limb… and his body, swamped in an over-sized nappy! We had to turn down the nappy at the top and even then it reached up to his armpits. Looking at it now it seems tiny and is a lasting reminder of just how small our little fighter was.

Precious moments

Pampers will be donating approximately 3 million nappies from its new Preemie Protection range to neonatal units across the county – this alone will make a huge difference to families journeying through neonatal care. Just the other day I was standing outside a baby shop, which at the time of my pre-term birth was the only place I could buy ‘micro’ nappies. I shuddered as I remember how hard it was, planning an extra trip out in between three-hourly expressing sessions, when all I wanted to do was be at the hospital. Instead I was standing at the tills with heavily pregnant women, grieving for the baby bump I should still have. As I watched families plan their nursery, choose their cots and first newborn clothes, I thought of my own interrupted planning and my empty moses basket at home. The nappies donated by Pampers will enable parents to spend more precious moments with their baby on the neonatal unit and take away the pain of queueing alongside ‘normal’ mums.

#PowerofBabies

Pampers has teamed up with our friends at Bliss to ask parents to share photos on social media of their little ones with their fists pumping to celebrate the amazing fighting spirit that premature babies show every day. For every picture shared using the hashtag #powerofbabies Pampers will donate £1 to Bliss – we can’t wait to see the internet filled with your little fighters!

Tell us what you think

The Smallest Things is a registered charity, promoting the good health of premature babies and their families. We’d love to hear about your first nappy change and what you think of the new Pampers Preemie Protection range – tell us in the comments below!

 

Pampers has donated the fee for this sponsored post to The Smallest Things charity.

 

 

 

Defying the Odds in NICU – A Father’s Belief

The day our children were born prematurely felt like the worst day of my life.

As my partner clocked up the weeks of pregnancy, the excitement of becoming a first time parent grew but all those warm and fuzzy emotions were dashed as Isabelle and Jack were delivered by emergency C-section at just 27+5 weeks.

I remember vividly being given the all clear to visit them for the first time and was escorted from the delivery floor to neonatal by a nurse.

Upon entering the unit I was guided to where my children were. Doctors, nurses, consultants and other medical experts were crowded around them, carrying out various duties to further stabilise them.

Jack in his incubator

Jack started life well – ventilated but on minimal oxygen with a nurse overseeing his progress as lines were fed into his stomach to get the vital fluids and drugs in.

Isabelle on the other hand was facing an uphill battle. No matter how much oxygen they piled into her tiny body her faltering lungs just couldn’t kick in with her sats sitting in the 60s and 70s.

The consultant’s first words to me were – ‘it’s touch and go’.

For some reason I almost instantly resigned myself to the fact that she wouldn’t make it, while hoping Jack would carry on as he started.

Each time we visited the unit over the next 48 hours there was no real progress. The sats had increased with the help of more sophisticated ventilation but on the whole, things remained bleak.

It felt easier to sit with Jack initially – you didn’t need to be an expert to see he was doing better – but we eventually said to each other ‘let’s have no regrets’ and split our time equally with Isabelle and Jack.

Days four and five were somewhat remarkable. The treatment they had given Isabelle to get her lungs going worked and she was slowly weaned off the ventilator and was placed on CPAP on day five. Doctors seemed amazed that she had made such a rapid turnaround but warned us that she could step back at any moment.

The glum look on our face lifted a little – but only briefly. In the same breath that the consultant had told us of her encouraging progress we were also informed that the latest brain scan had found a serious bleed.

“Touch and go” – Isabelle develops Hydrocephalus

A grade 3 IVH meant blood had spread throughout the ventricles and was putting pressure on the brain itself. We were informed that it could leave her with long term problems – so bad that she might not even walk if the worst was to happen.

Over the three months in neonatal I held strong for our family, but that night I had my one and only break down. The thought of one of our children being severely disabled hit me like a ton of bricks and I crumbled for a night.

It took a couple of days but I got myself back together, determined to try and solider on. Jack was still defying the odds and needing very little support having gone over to CPAP less than 24 hours after birth.

Each week Isabelle would have a brain scan to see if the bleed was spreading or whether hydrocephalous – water on the brain – had started to become a problem.

It was 50/50 whether hydrocephalous would become a problem. If the blood clot had created a blockage then the fluid that our brain creates would have nowhere to go and her head would swell at a rapid rate.

Sadly we fell on the wrong side of that coin being clipped and her head began to grow abnormally.

Another tough conversation told us that drawing fluid from the spine could sort the problem. If they removed fluid and it didn’t grow again it was likely they’d got on top of it.

If they removed fluid but it continued to grow, the only option in the long term would be a shunt – tubing from the brain to the abdomen to drain it. Something that would be lifelong and require surgery at various stages of her life to amend the length of tubing and remove damage or blockages.

The drain was done and for days on end we sat there, hoping that the fluid build-up didn’t reoccur but feared the worst.

A week passed and the next scan and head measurement was taken – no growth. Yet another sigh of relief. This trend continued and it looked like the drain had worked and stopped the problem.

Meanwhile, Jack was still working his own miracles – the nurses looking after him were almost made redundant as a result of the lack of major intervention needed!

Once home, we watched them like a hawk looking at progression. Jack took the lead and worry once again set in that Isabelle’s potential problems were kicking in early. The health visitor made her regular visits and said everything looked fine at that stage – as did the neonatologist consultant.

Isabella, defying the odds

Fast forward to the current day and I am stuck for the words – Isabelle is sitting, crawling, talking baby language, pulling to a stand and cruising the furniture. She can’t stop smiling and the consultants haven’t done a single thing except monitor since we left.

The same applies for Jack. He is doing great – but like a typical boy, he is doing it a little slower at his own pace but is still a huge credit to us and our miracle boy.

We’ve learnt to worry less as the days have passed, concentrating on the hundreds of mini (and some not so mini!) milestones we have witnessed.

Jack “a typical boy”

So what is the point of all of the above? I’ve lost count of the amount of times we lost hope. We gave in to the fact that one or both of our babies was going to have huge difficulties – that was if they even survived.

But now we are in a place which is simply incredible. Could there be problems in the future? Of course, but our babies are thriving now and a lot of the worst things that prematurity could have done to them hasn’t happened.

So no matter how bad things look for you, have belief in your premature baby. Whether you are on day one and facing an uncertain future or one year on and watching like a hawk, have hope and believe that they can defy the odds.

You’ll never stop worrying – that’s what parents do, but celebrate every achievement – no matter how small, try to bury the worries further back and enjoy the miracle that is your premature baby.

Anthony Grigorjevs

With thanks to NICU Dad Antony Grigorjevs for sharing his time through neonatal care and words of advice to “believe that they can defy the odds”.

Please help The Smallest Things to raise awareness of premature birth and life through NICU – it’s easy, just hit the Twitter and Facebook buttons to SHARE NOW!

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

 

From The Bottom of our Hearts – Thank You

Olli has come home!

Mum to premature baby, born at just 28 weeks, has written a letter to the neonatal nurses and doctors who cared for her premature baby at Burnley General Hospital. Lynsey, who spent every day of their 82 day journey through neonatal care visiting her tiny son, has shared with The Smallest Things her moving letter to the professionals involved in their special care.

Dear NICU Nurses and Doctors,

You have no idea how much you mean to us, or how you will always hold a very special place in our hearts. The love, respect, and admiration that we have for you can compete with no one.
You took care of our baby, when we, his parents didn’t know how. We didn’t know how to change his nappy without moving his lines. We didn’t know how to pick him up to change his bedding. We didn’t know what medication went where, or how to run the machines that were keeping him alive.

We tried our best, we really did. But he was so sick, and we were so scared. We were thrust into the NICU hours after his surprise early delivery. The first time we saw our baby he was in an incubator, and hooked up to more machines than we could count. You told us how we could touch him without stimulating him too much. You had tissues ready because you knew that we would cry. You encouraged us to interact with him even though you knew we were frightened too, you let us bath him, you let us change his nappy and didn’t get mad when we fumbled through three nappies and bed sheets because our little boy kept peeing before we could get the new nappy on. You let us change his nose cannula stickers, even though we both knew you could do it 10 times faster. We never felt more like his parents than at those times. You let us take home NICU souvenirs like his heart monitor leads and his first tiny dummy. When he opened his eyes you helped us get a picture of them. You answered every single phone call we made. You listened to us asking the same questions over and over and made us feel welcome being by his bedside day after day. You comforted us while we cried and encouraged us to believe he would come home.


You gave him, and us, every piece of your strength, day in and day out, for weeks. You did everything in your power and more to keep him alive. We feel like ‘Thank You’ isn’t enough, but it’s all we have to give you. You’re amazing, and you do things no one else can. So from the bottom of our hearts, thank you.

Lots of Love
Lynsey and Daniel & his big brother Eli xxx

Premature Birth Education Survey

The Smallest Things will be publishing our “Life After Neontal Care” Report in the coming weeks. We would like to find out a little more about the ongoing needs of children born premature and any addiational support they may require at school.

All repsonses are sumbmitted anonomously and results will be shared as part of The Smallest Things “Life After Neonatal Care” Report due to be published on the 11th May 2017.

Do you have a child born premature in school? Then take our poll!

My Top 5 Pieces of Advice for Other NICU Dads

“As a father of a baby born prematurely at only 25 weeks, my partner and I had a big challenge during the 95 days our daughter was in NICU. Read on for my top 5 pieces of advice for other NICU dads on making it the least stressful it can be.”

TIP 1:
The doctors and nurses are there to help so ask questions and try to be as helpful as possible. If there’s red lights flashing and they’re busy then don’t get in the way, but when it’s quiet ask as many questions as possible. Find out what all of the equipment does, what the readings mean on the monitor and what you can do to help. They’ll be happy to teach you.

TIP 2:
Be there for your baby as much as you can. You may not at the time feel that you are doing much good, especially during early days, but just being there and talking to your baby can have incredible benefits. You’ll learn all about your little one and eventually you’ll be able do a lot more like hold him/her, change and feed them and most importantly, bond.

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TIP 3:
Look after each other. We found there were often hugely stressful times and this made it very easy to get frustrated with your other half. Just remember, you’re both going through similar feelings and being there for each other and trying to keep a sense of humour is so important. My partner and I are now stronger than ever and this positivity can be passed onto our baby.

TIP 4:
Rely on friends and family, even if it’s just asking them to cook a meal or give you a lift. Finding time to cook when you’re at the hospital all day is very draining and you need to keep your strength up for your baby. Fortunately ours were there for us a lot. Our family members visited often which was lovely and they were all so supportive with us which is essential during tough times!

TIP 5:
Lastly but no means least; take tonnes of photos and videos! You’ll be able to look back on them every few days and see the differences. Having a baby in NICU is a challenge but look on the bright side; you’ll be able to see your baby evolve from a tiny human being into an amazing baby. Take photos every day, back them up on a hard drive and hopefully in a few years time you’ll be able to show your grown up son or daughter how they started their life on this planet.

Written by James Farina

You can read more about James’ journey through neonatal intensive care at his own website – A Dads NICU Journey 

Will you help raise awareness and share these great tips for other NICU dads? It’s easy, just hit the Twitter & Facebook buttons to SHARE now! 

25 Weeks Gestation – Our Beautiful Little Lady

Two years ago I woke early with period type pains.

I was 25+5 weeks pregnant.

I knew something was wrong, but wanted to dismiss it.

The thought of labour at this early stage was very, very scary.

For some reason, I thought the age of viability was 28 weeks. After realising the pains were more significant, more like contractions, I spoke to the maternity assessment unit. They told me to come straight in.

It was a Saturday, so I thought I’d leave dad at home with our 3.5 year old, and drive myself in. I was fully expecting to come home again later the same day. Sadly that wasn’t to be and our daughter was born by emergency section a few hours later.

Having been through an emergency section before with my son, though he wasn’t premature, I knew the drill. I tried to not think about whether or not our baby would survive. I did asked though, and was told she had a good chance. The operating theatre seemed to be jammed packed and noisy. But once it all began things became focused and hushed. The consultant told me my baby was a girl. I asked to see her so they lowered the screen; she looked at me through one opened eye and she looked so beautiful. I didn’t realise how small she was until later.

A tiny baby, far away from home

We were at a level 1 unit, but my new daughter needed to be in a level 3 unit. She was transferred as soon as a space was found, thankfully not too far, but still a two hour drive away. I was transferred the next day and got to saw her later that afternoon.

She was so tiny and hard to make out with all the wires and tubes. The next day I asked on the ward round what I could do to help and they said express milk. I didn’t think I’d have any yet, but after hard work, tears, determination and good support, I was lucky to get a good supply going. It really was the best thing for her and felt so good to be able to DO something. I was expressing far more milk than she was taking, so was able to donate to the milk bank. She luckily had very few problems on her journey through NICU, apart from giving us a big scare on April fool’s day. She was suspected of having Necrotising Enceterocolitis (NEC), but thankfully it didn’t develop. She was on and off antibiotics a lot and up and down with the amount of expressed milk she was taking – it was difficult, but we got there!

Our other difficulty was that I was discharged three days later; we were two hours from home, I didn’t know the area and could barely walk, never mind drive! There was little coordination between the maternity and the neonatal units. I was told there was an on-call room, but that it probably wouldn’t be available for more than two or three nights. Luckily, as it turned out, I managed to have it for the full six weeks of Isla’s stay, and the neonatal unit were brilliant at ensuring this. They also provided me with a daily meal ticket and ward breakfasts and lunches. It wasn’t possible for my son and partner to stay, but we were loaned a flat one weekend and they did day trips once or twice a week. It was very hard being separated, especially for my young son, but it was the only way to manage it. I felt I needed to be there 100% for my baby, so I knew I’d given her everything I could. I generally used the weekends to go home and have a much needed break, but it really is an area of neonatal care that needs improvement, as it’s not uncommon, especially in rural areas for mum and baby to be separated more than they should.

Kangaroo Cuddles and our Extended Family

I soon filled my week days with expressing, sitting by the incubator, and occasionally getting cuddles. The second most important thing, that I would advocate, is Kangaroo care. It has proven benefits for both and mum and baby, once baby is medically stable enough, and it was the best thing for me and Isla. It enabled us to regain some of the pregnancy closeness we’d been robbed of. Most days we would have one or two skin-to-skin cuddles. I have a vivid memory of a very alert tiny baby lying on my chest and looking up at me with the biggest eyes. It was so amazing, at only 30 weeks, and all the other neonatal midwives came to have a look. All the neonatal staff were great and I soon got to know the group of midwives who looked after her, and she was popular with them. Together with the other mums in the expressing room, they became our extended family.

After 6 weeks the day came when Isla was well enough to return to the local unit. From there she continued to make a steady recovery and I was able to have a much better home/hospital balance. I became more involved in her daily cares and once she was out of the incubator, gave her her first bath. The last thing to come was establishing breastfeeding, but that suck, swallow and maintaining breathing action is tricky for little ones!

Isla spent 8 weeks at our local hospital and came home two days before her due date. She was sort of breastfeeding and topped up with bottles and came home off oxygen. She weighed 5lbs and was still tiny, but at least she fitted in the tiny baby clothes range now.

The worry of being at home

Being at home was nerve wracking to start with, and seemed such a huge responsibility. I think you never stop worrying, and we had good aftercare. You somehow need to reclaim your baby and trust your maternal instincts – that comes with time. The thing I was least prepared for was the innocent question of ‘how old is your baby?’ Even now I find myself explaining our story and her two ages. She hasn’t caught up with her corrected age, never mind her actual, and as she reaches the age of two they will stop correcting her age.

She is our beautiful little lady, as she was nicknamed by the neonatal staff, and does amazingly well. She’s crawling and pulling up to standing but not yet walking. It’s a lesson in not comparing to friends babies and measuring her progress from where she started – a 2lb scrap of a thing that fitted into my cupped hands.

Isla Rose

She is a delight and such a happy thing. We held a fundraiser for the neonatal units to coincide with the first world prematurity day of her life, and have taken her back to both neonatal units. We are eternally grateful and can never thank them enough for their kind and compassionate care, who together with friends and family, made such a difficult journey bearable.

With special thanks to Beth Nightingale for sharing her story with The Smallest Things.

If you’d like to help The Smallest Things continue raising awareness of premature birth and the journey through and beyond NICU, then please press the Facebook and Twitter buttons to SHARE Isla Rose’ story.

Neonatal Care: Shattered Dreams and Precious Moments

Our journey started last April when our son Jake was born suddenly 10 weeks early. Nothing can prepare you for the journey that was about to start and we were lucky that he was a healthy 1.53kg – a good weight for a 30 week premie!

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The dreams you have of holding your baby when they are first born, the pictures capturing those first precious moments, are shattered. And instead you are filled with loss, longing to hold a fragile baby. With the tubes and wires, it’s not what you imagined, but the nurses help and support you with your first kangaroo care cuddle – and it’s worth the wait!

These small steps that most parents take for granted are celebrated along the rollercoster ride of neonatal care. There are bad days, when all you do is hope and pray that they pull through, the days without cuddles when all you can do is sit and wait, knowing you would give anything to swap places with your baby.

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What you can do is express your milk, but this was hard work and mother nature didn’t make the job any easier. While some mums filled bottle after bottle, I bearly made enough, expressing throughout the day and twice during the night, just to keep up. This will always be the bit I feel guilty about, Jake didn’t take to breastfeeding no matter how hard we tried. The nurses were amazing in supporting us, (I’d never had so many people see my boobs!), but no matter what it just wasn’t working and after a few days and 12h with no wet nappies we tried a bottle. He gulped it down! It’s not what we had planned, but none of this was. I cried loads and will always feel guilty that I didn’t breatfeed – but he is healthy and that’s the main thing .

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We were extreamly lucky and made a special bond with two other wordering familes. Going through something like this can bring people together and sometimes you have to take the positives of what life throws at you. The amazing team that works in SCBU are all angels and I could never repay the times they saved Jake’s life. The times they supported us – the hugs, the chats and the occasional light moment of laughter – we missed them hugely the firate few weeks we were at home.

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The journey doesn’t stop when you go home though and for us it seemed like the begining of weeks of obsessing about infections. Hand gel became my best friendnand no one was allowed in the house with the slightest sniffle. The first cold at home was hard and I spent the whole day scared he would end up back on a ventilator. It’s hard to admit, but it was terrifying bringing him home. At least when he was in hosital the staff could keep him safe and knew what to do if he had an infection. But with time this got easier.

By the time we were ready to go and meet ‘normal’ mums and babies I was half way through my mat leave.  This was my next challenge, of always feeling like I had to justify why Jake was slightly behind and in knowing how to explain his early start and corrected age. I’m so proud of my reslient, funny and sociable son and wouldn’t change a thing, but it was sometimes hard to hear other mums stories.

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It does get easier and I remind myself that I am one of the lucky ones. I am currently due to go back to work on friday to a job I love and Jake has settled into an amazing setting which he loves…

…..but I still feel cheated from my full maternity leave. Seven weeks in hospital and then by the time I was finally ready to fully embrace mummy life if feels as if half of it was gone already. It’s been a long, and at times uncertain, journey – and now together we’re about to embark on the next chapter!

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With special thanks to Claire Mountain for sharing her story with The Smallest Things.

If you’d like to help us raise awareness of life through neonatal care then please use the Twitter and Facebook buttons to SHARE Claire’s story. 

Government Makes ‘Mother’s Day Pledge’ for Premature Babies

The Smallest Things is delighted the Government have announced their Mothers Day Pledge today, to publish new guidelines on how employers can best support parents of premature babies. This is real recognition of the unique needs families of premature babies face during the weeks and months spent visiting their baby in neonatal intensive care. The Smallest Things has been working hard to highlight many of these difficulties and today’s announcement is a good start at addressing these.

Welcoming the announcement, Founder and Chair of The Smallest Things, Catriona Ogilvy said;

“This is wonderful news recognises the overwhelming support The Smallest Things campaign has received. This Mother’s Day weekend 7,000 mothers will have visited their baby in neonatal care, uncertain for the future. This guidance and recognition from the government as part their ‘Mothers Day Pledge’ of what is a highly stressful and difficult time will offer hope and reassurance to thousands of families beginning their journey through neonatal care each year.

The impact on families of a baby being born prematurely lasts for many, many years and The Smallest Things will keep on working to support and raise awareness of these needs.”

Making the announcement, the Minister, Margot James MP, who has championed this issue within government, made special mention of her meeting with The Smallest Things. This is a recognition that the governments ‘Mothers Day Pledge’ is down to all of you – the hundreds of people who have shared their very personal, often difficult stories with us, the 129,000 people who have signed our petition, and everyone who has read, ‘liked’ or shared our pages.  The support of several MPs from all parties, including Steve Reed MP who introduced his Bill on extending parental leave, has also been crucial.

Caroline Lee-Davey, Chief Executive of Bliss, said “At Bliss we have for many years championed the need for developing guidelines around handling requests for leave and flexibility from parents of premature and sick babies, and therefore welcome the government’s announcement today which recognises that mums of babies born premature ‘deserve respect and support from everyone’. In order to guarantee that support is available to parents, we will continue to campaign for changes to maternity leave legislation that better supports parents of premature and sick babies”.

The announcement of new guidance today is a huge step forward. But it is only that – a step. We now need to ensure that this becomes a reality in practice for all families of premature babies and continue to recognise that time spent visiting a baby in neonatal intensive care feels very far removed from what maternity leave should be for thousands of mother’s. We look forward to working with the government on developing the guidance and welcome Minister Margot James’ commitment to review progress on this including additional steps, such as changes to the law, if needed.

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Steve Reed MP, Minister Margot James MP, Catriona Ogilvy with Sarah Miles (Smallest Things) and Caroline Davey (Bliss)

Read Government Minister Margot James’ statement below:

Every year tens of thousands of new-born babies in the UK are taken into special care units, either because they have been born prematurely or are suffering from serious health problems.

Instead of enjoying those special first days as a new family at home, these parents and their babies often have to spend weeks – if not months – in unfamiliar hospital surroundings, frequently separated from each other as both recover.

At what is already an emotional time, this separation can be highly stressful for parents, with many mothers reportedly experiencing post-natal depression or even post-traumatic stress disorder. These early days are the first steps in a life-long journey, and we must do all we can to provide support.

It’s clear that these mothers deserve respect and support from everyone. That’s true of the partners and medical professionals who are involved from day one, but it’s also true of employers.

I’ve spent time with mothers like Catriona Ogilvy, introduced to me by Steve Reed, MP for Croydon North, who has been brave enough to speak out about her experiences, and charities Bliss and The Smallest Things to better understand how important it is for working mothers and fathers to feel secure in their work and supported by their employers at such a difficult time.

“The period after birth can be highly stressful for parents, with many mothers reportedly experiencing post-natal depression or even post-traumatic stress disorder”

While most employers do treat their staff with compassion and flexibility, we want to remove any doubt for mothers about what their rights are, and equip employers with the correct tools to provide support.

We already have one of the most generous maternity systems in the world, with all eligible mothers able to take up to 52 weeks leave and up to 39 weeks of pay. This Government is working hard to support them, with a number of measures in place designed to assist with childcare responsibilities like Shared Parental Leave and the right to ask for flexible working arrangements.

But I have heard the concerns of affected mothers who feel that appropriate support is not always available, and I am determined that all working parents should be aware of their rights and feel confident in talking to their employer about them.

That’s why I am announcing that we will be drawing up best practice guidelines for employers on how to support mothers with premature babies.

This guide will not only spell out measures available to parents, but also advise employers on how to handle requests for time off sympathetically, and how best to organise flexible working arrangements for their staff.

I am confident businesses will welcome these new guidelines and act on our advice, but I will of course keep progress under review, and do not rule out legislating in the future if our advice is not heeded.

Working mothers deserve our support, and those who give birth to premature babies should expect nothing less than total backing from their employers. It is my belief that this Government’s Mother’s Day pledge will make a real difference to the lives of thousands of mothers and babies, now and in the years to come.”

End .

A very different Mother’s Day

On Mother’s Day last year Susannah Tucker should have been 23 weeks’ pregnant. Instead, she was watching her son fight for his life in NICU, wondering if this would be the only Mother’s Day they spent together

Mother’s Day 2012: painful, following an early miscarriage the previous December.
Mother’s Day 2013: cautiously excited, as we made our way through the first trimester of our boy.

Mother’s Day 2014: a day with my husband and son, blue painted foot and hand prints, photo memories.
Mother’s Day 2015: starting to hope for a brother or sister for our eldest.
Mother’s Day 2016: our life turned upside down the day before.

On 5 March 2016 our little boy Alec was born at 23+5 weeks’ gestation, weighing 1lb 9oz (709g). Whisked away from us following his lengthy resuscitation, we had followed on after the ambulance who had transferred him to Addenbrooke’s.

And now he was there, fighting for his life.

Love and care 
During the early hours of March 6, Mother’s Day, I was wheeled around from the ward to see my tiny, tiny boy. I chatted with the nurse Felicity (who became a very favourite and special nurse) and she brought out a little bag and handed it to me. Inside were a few items selected especially for Mother’s Day – a notebook, hand cream, pen etc, and, most special of all, a small ceramic heart with some tiny footprints on it.

Susannah with her gift from Alec, aged one day, on Mother’s Day in NICU

‘Are these Alec’s footprints?’ I asked hesitantly, barely able to believe that they could be. Felicity replied that they were. Overwhelmed by the love and care of the NICU staff, to produce this special keepsake for all the mums that day, all I could think was how amazing it was that I’d had the opportunity to have the footprints at only a day old, not something I’d done with my older boy Evan. I was also acutely aware that this ceramic heart was going to be something I’d treasure forever, but potentially in a box of painful memories.

Alec’s footprints – a special Mother’s Day keepsake from the amazing nurses

Family time
Our older boy Evan (who was two and a half at the time) came to visit Alec for the first time that day and I had both my little boys together. Again, I couldn’t shake from my mind that this was likely to be my only Mother’s Day with both of them. It was a special special time and Evan was so interested in his little brother. Fast forward a year and they adore each other.

Some other special mothers came to see us and meet Alec that day too – both our mums (who didn’t get cards from us, sorry!) were seeing their new grandson, yet feeling overwhelmed with how to support us – it was happening to their children. My sister came to meet Alec, pregnant at roughly the same gestation (her son eventually born on Alec’s due date) – every time she visited I could see in her eyes the awareness that the baby growing inside her was a similar size and shape, and the overwhelming feeling of needing to keep him tucked up safely inside.

First feed
I couldn’t hold Alec. I couldn’t touch him or kiss him. I couldn’t look into his little eyes (they were still fused shut). I was too nervous to change his nappy. However, on that first Mother’s Day, I was able to feed him my milk through a tube for the first time. I was fulfilling something in my role as his mummy. A different Mother’s Day, but one I’ll remember forever.

Returning to ‘normal’
We recently celebrated Alec’s first birthday on the beach and it was a very special day. This year we’ll also be celebrating my mother-in-law’s 60th birthday on Mother’s Day and I’m looking forward to a relaxing, low-key day. After all the drama and fear of NICU, we’re craving some ‘normal’ family time, enjoying the simple pleasure of being together.

 

Susannah and Alec on the beach celebrating his first birthday earlier this month

With special thanks to Susannah for sharing her story for Mothers Day. 

You can read more about Susannah’s journey with Alec on her blog here

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