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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My first Mothers’ Day: in NICU

Second in our special series of Mothers’ Day blogs, Becca Hilton tells The Smallest Things why her first Mothers’ Day as a mum will stay with her forever

I was expecting my first Mothers’ Day as a mum to be full of love, comfort and joy. Yet the harsh reality was very different. Yes, I did feel the love but I was somewhat lacking in the comfort and joy as my darling little boy Max was in NICU [Neonatal Intensive Care Unit].

The day was not only emotional because it was Mothers’ Day, but it was also my birthday!

2016 was the first year my birthday had fallen on Mothers’ Day and that did make me wonder… Maybe Max had come early for that very reason, so that I could spend those two very special occasions with him?

Not how it was meant to be

Waking up on that morning I felt excited but also disappointed. I couldn’t wait to go and see my little soldier but I couldn’t hold back the sorrow knowing that it wasn’t how it was meant to be. My husband had organised dinner for us that evening but it didn’t feel right. I didn’t feel like celebrating either occasion.

When I arrived at the hospital that morning it felt like just another day but when I saw Max he was in an open incubator for the first time! Previously he had been in a closed incubator with two portholes I had to open to touch him or change his nappy. It was the best Mothers’ Day/birthday gift I could have asked for. Taped to his incubator was a lovely poster one of the nurses had made. It had Max’s face inside a flower wishing me a ‘Happy Mothers’ Day’. My heart melted.

A day of mixed emotions

All I wanted to do was give Max a big squeeze but of course I couldn’t – he was too delicate. Experiencing Mothers’ Day while your child is in NICU is a strange feeling. It’s hard to describe as I had so many mixed emotions.

On this day I spent my usual seven hours or so with Max; soaking up every minute with him. Every smile, every cuddle and even all the windy pops (he’s always been rather gassy!). I didn’t want to go home, I didn’t want to leave him.. on that day more so than ever.

Overall I was just so glad and felt blessed that Max was here at all and my first Mothers’ Day/birthday with him was the most special time and will stay with me forever.

So as I approach my second Mothers’ Day I reflect back on and remember my first… and look forward to many, many more! I hope that yours is filled with everything that you expect and more.

My First Mothers Day: ‘Seeing’ my Baby in NICU

Kicking off our special series of Mothers’ Day blogs, Serena Di Murro tells The Smallest Things about the day she saw her daughter Elysia properly for the first time.

My first Mothers’ Day was 6 March 2016 and it is one I shall never forget. It was truly bittersweet! I gave birth to my daughter Elysia, weighing 885g, at just 25+2 weeks on 31 January 2016. Mothers’ Day last year was exactly five weeks later when she was 30 weeks gestational age. I shouldn’t have even been a mother by then – I should still have been 30 weeks’ pregnant. It was certainly not how I ever imagined my very first Mothers’ Day to be. Elyisa had been intubated [on a ventilator] on the first day and I hadn’t really looked at her properly as I was too much in shock and there was a lot of tape obscuring her face. On Day 2 she transitioned to CPAP [Continuous Positive Airway Pressure] and spent the next five weeks on that.

Struggling to connect

CPAP involves a breathing mask and hat that completely covers a baby’s face. Elysia also had a feeding tube so I had absolutely no idea what she looked like for that whole month. I had held her for the first time when she was two weeks old on Valentines Day but struggled to connect with her because she was so tiny and drowned in all the equipment. I held her every day for skin-to-skin contact, but the fact I didn’t really know what her face looked like was surreal and meant I never felt like a mum at all. Every day I would go in and hold this tiny fragile being and struggle to ‘feel’ something, but it felt like I was just going through the motions.

‘Seeing’ my baby for the first time

However, when I arrived at the NICU [Neonatal Intensive Care Unit] on Mothers’ Day last year the CPAP was gone! In its place was a small nasal cannula and at long last I could see Elysia’s face. I noticed she looked so like her dad and for the first time I saw this little person and not just a sick, fragile baby. I will never ever forget that day’s Kangaroo Care… she looked right into my eyes and I got a sense that she could ‘see’ me just as I ‘saw’ her for the first time. It was like she too felt more connected to me now that the big mask, which had been such a barrier between us, was gone.

Serena ‘seeing’ her daughter properly for the first time on Mothers’ Day last year

Tears slid down my cheeks as I looked at her tiny little face. I have a video of this moment that my partner made and now, over a year later, I still cry every time I watch it. There are no words to explain it. On Mothers’ Day 2016 I finally became, and most importantly felt like, a mother after five long weeks of cuddling a baby hidden behind a mask. I treasure that moment and am so happy we caught it on video.

Elysia now weighs over 18lb (8.2kg) and is thriving. Looking back, last Mothers’ Day was a defining moment in our journey and shows that there can be beautiful moments in the NICU when we least expect it. This Mothers’ Day I will reflect on our time in hospital and spend all day looking at Elysia’s sweet, now very chubby face… just because I can 🙂

Today, aged one, Serena is healthy and happy

 

 

Normality After Neonatal Care

There is normality after NICU I promise… 

I know, because I’m sat writing this to you whilst in bed with my now massive baby asleep on my chest. I hope my story helps just one person going through that hard journey to realise it’s just a small part of your babies whole life.

Guest Post

We went for a routine growth scan at 28 weeks pregnant, filled with excitement we would get to see the little man again… but also because it was at 1.30pm and we’d we got afternoon off work. We were planning where to go for food, little did we know that we would not be leaving the hospital that afternoon.

Having the scan everything started normally. The picture of the baby on the screen wasn’t quite as clear as our last scan and I was gutted as we’d hoped for another picture. The lady scanning us was quiet apart from asking me to change positions several times as her face becoming more and more serious. She then explained to us that he was measuring a little small at about 25-26 weeks. She wanted to do a doppler scan just to be sure everything was ok so she did but then explained she wasn’t getting a good reading. I was sent off to the waiting room and told I’d be called back in soon for further checks.

After around 20 minutes a midwife came to find me. She explained I needed to go for monitoring to check on my baby, so off we went. She didn’t lead us through to the day unit though and all of a sudden we were in the delivery suite and people started telling me all about an injection to make sure babies lungs didn’t stick together. Still by this point we had no idea what was going on, until eventually someone explained that my baby would be being delivered at latest the end of the week – it was now Monday.  

They stuck a heart monitor on my tummy, wouldn’t let me eat or drink and kept taking bloods, doing blood pressures and waffling on about more injections… I should mention I am the biggest needle phobe you could ever meet – I am in floods of tears and shaking just at the mention of a needle so I really wasn’t coping well.

At around 6pm everything seemed to go calm and they even started discussing moving me upstairs to be monitored over night. Finally I dared to dream that things were going to be ok. That feeling didn’t last long though as the consultant came running in about an hour later telling the midwives that we had to move now and were going to theatre immediately. 

I can promise you now I have never been more scared of anything in my whole life.  

A massive needle going in my spine, surgery and a baby arriving 12 weeks before he should.  

Surgery was not as bad as I’d anticipated – felt like the surgeon was doing the washing up in my stomach – weird I know,but if you’ve had a section you will know exactly what I mean! 

Then out he came. Rushed off into an incubator, I didn’t even see him. 

He weighed just 752 grams. My placenta had basically died and a few more days and I probably wouldn’t be writing you this happy little tale.

I didn’t see my baby until the next day when I was wheeled down to the unit in a wheelchair. The poor little thing was just a bit bigger than my hand, lying under the light therapy lights… I’m very pale and ginger and he was jet black under those lights so was a shock to say the least!

It was 5 days before I could hold him for the first time. He was so tiny I thought he was going to break. We could only have him out of his incubator for 30 mins once a day in the beginning as he really was too small and not well at all. 

But.. he did start to grow. 

A few weeks in we could put him in a premature baby vest for babies up to 3lb – it absolutely drowned him but it was one of the best moments. That for all those 10 seconds felt normal. 

We carried on our journey through NICU and SCBU with set backs, but that’s a normal neonatal journey. Hs was in his cot for about a week in SCBU and one day we ended up back in an incubator  back on optiflow and back in NICU. One step forward and 2 steps back is like the prem baby motto I’m sure! 

Things change so quickly in there.  You have absolutely no control over anything, not your life and not your baby. And it’s ok to feel lost or isolated. It’s definitely ok to sob while you sit at home trying to express milk into those awful machines. Feeling like the worst person in the world when you only manage 30ml. 

Expressing milk was the worst part for me. I’d always planned on formula feeding my baby, so when they told me that formula wasn’t an option and I would either have to express milk or he would have donated milk it broke me. I hated every single second on that machine and I cried every time.

The other part that you can’t prepare for and doesn’t get easier is when people who are only being nice actually say things that leave you feeling a thousand times worse. It’s ok to cry when someone says to you ‘well at least you missed the third trimester’ – you think to yourself that you’d cut your leg off with a blunt knife for that third trimester where your baby could be safe in your tummy and not hooked up to machines.  Or someone telling you how easy it must be not having those nights with a baby waking you up all the time… I mean do they really think that you are sleeping well while your baby is in hospital and not with you?!

The premature baby journey is terrifying, but you get to realise just how strong your baby is. 

We spent 70 days in NICU and SCBU and eventually got discharged homs on Christmas day. Walking out those doors was the best feeling in the world, but was almost as scary as the first time we walked through them.

I sit here with a 6lb4 baby cuddling me, who looks at me with his big eyes with such love. I barely remember what it was like driving to that hospital 3 times a day and not even knowing what day it was. At the end of it all you walk out of there with your baby and eventually the trauma and heartache fade.

Oh one last thing… please don’t think you will be able to go to sleep in the quiet. These babies are used to noise and beeping and talking at all hours. Silence confused my baby more than anything!

Just keep going. You are stronger than you think. Eventually it will all get better and it will become a distant memory.

If you have a story you’d to share, please get in touch with Catriona at smallestthings@yahoo.com 

Our Miracle Story

On November 28th 2015 I found out I was pregnant. My fiancé (at the time) and I had just bought our first house and moved in September. We were also planning our wedding and had everything booked for the 23rd of July 2016. Little did we know our plans were set to change!

November 28th brought all the emotions from happiness and excitement to shock and panic! After telling Chris about the pregnancy test and seeing how excited he was, I knew I had nothing to worry about. So the following Monday I made all the phone calls to bring the wedding forward. I knew I wanted it brought forward rather than push it back as everything was organised and I thought it made more sense. Something in my gut really wanted it brought forward instead of backwards and I’m glad we did it that way round. So, on March 25th 2016 Chris and I got married while I was almost 5 months pregnant. 

It was the most amazing day and I’m glad our little bump was a part of it. We had found out we were having a little girl and announced this on our wedding day. We couldn’t believe we had managed to keep it a secret from everyone until then!

On Tuesday May 24th I went to bed as normal; only it wasn’t a normal night because at 1am my waters broke! I could not believe it. I think I was in shock as I was kind of giggling about it as I woke my husband up. We rang the maternity unit and went straight in. I didn’t have any contractions until 6am and was given the steroid injections in preparation incase our little girl was coming imminently.

After a few hours the contractions died down and I was told I’d probably be able to go home. However, that night the contractions ramped up again and quite tremendously. By morning the doctors wanted to deliver our little girl by c section as her heart rate was dropping, but as I was being prepped I suddenly had 3 very strong contractions. The doctors examined me and I was now 9cm dilated – I was going to deliver naturally!

So, on no sleep and no food I managed to deliver our little girl at 4.38pm on Thursday 26th May 2016. She weighed 2lbs11oz and was whisked away by the NICU team to be looked after. I then had trouble delivering my placenta and needed to go into surgery. I didn’t get to see my baby girl until 8.30pm that night when the nurses wheeled me into the NICU, right to her bedside. 

There she was. Mia Rose Hibbs. Our beautiful daughter was here and she was ready to prove what a fighter she was. 

From oxygen to cpap, having a long line, a hole in the heart, regular meds, being on a billy blanket and so on. Every challenge they set her, she accepted and did so tremendously. She proved that she was ready to be on this earth and she wanted to come home and be with us as a family. 

On day 4 I finally had my first cuddle. It happened to coincide with my 33rd birthday so this was the best gift ever! I finally got to hold my baby girl and tell her how proud I was of her and how much I loved her. With all the wires and tubes that sat between us I didn’t care, I was finally holding the most precious thing to me.

The next 6 weeks now seem like they went by quickly, but I know that each day took its time. I wanted to get her home and to feel like a mummy. So when that day came on the 6th of July I couldn’t believe it! She was coming home. Our little girl was coming home. I was elated and scared all at the same time. I had become so used to being told what to do by the nicu nurses and how structured our day was, I had no idea how to do this by myself. With the added worry of taking home such a small baby and the complications she had early on, I was terrified. But this was the day I had been waiting for. I could do this. She had fought so hard to be here and I could learn how to be a mummy. And so our journey as a family began at home.

I would like to thank the amazing nicu team at the RUH in Bath. They were fantastic and looked after all of us so well. I would also like to thank our friends and family that supported us. Most of all, I would like to thank my rock. My husband Chris was my absolute rock throughout all of this. I know now that he was scared but he never showed it. He knew he had to be strong for me. He is amazing, I know where my daughter gets it from now.

Thanks for taking the time to read my story. I hope I can inspire other families to persevere through those tough times.

With special thanks to Sara Hibbs for sharing her story. 

Mia loves her food! All the tube feeding seems like a distant memory!

Sara

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Mum writes story for her Premature Baby 

Nicholas Charles Johnson – This is Your Story

Every time I look at our baby I am amazed we got so lucky. It didn’t feel like that 51 weeks ago though. It was the most terrified I had ever been. Our story is probably similar to so many out there, but it is only reading other’s blogs on the Smallest Things that I have accepted our reactions as ‘normal’ in a very ‘not normal’ situation. I wanted to write this for Nicholas and it could be a book, with many chapters, with highs and lows, but this is in essence his story. 

I had an ordinary pregnancy right up until 28 weeks when I had sudden bleeding and both of us were terrified I was miscarrying – we were so scared. After a trip to the hospital where they couldn’t locate a cause for the bleeding we were sent home and told to carry on as normal. I had another 3 bleeds over the next 3 days, each one resulting in a trip to the hospital and being sent home again until they realised I might have a low lying placenta. I was scanned and diagnosed with Placenta Previa and told I couldn’t go home until I had stopped bleeding, if at all. I was so frustrated – we have an older son who needed me and a job to sort out for maternity leave. I didn’t really understand the implications for our baby at that point. 

I made it home twice before being sent back in again with more bleeding. 12 days later I felt strange with contracting pains but it didn’t feel like labour so I went to bed in an attempt to stay at home again for one more night. By 11.30pm I was woken up with pain and we rushed to hospital, both trying to convince each other I wasn’t in labour and it was a mistake as the pain intensified and on arrival they thought I was in labour. I was given the steroids for the lungs and injected with Magnesium which was horrible. After 15 hours of ‘contractions’ (which turned out to be the placenta abrupting) they decided we were too much at risk and our baby boy was delivered by emergency c-section weighing 3lb 4.5oz. At the time that seemed so very tiny but we learnt later that his weight was really good for being born at 30+5.

It is so hard remembering back to that day. Partly because I was so tired and drugged up. Partly because we were so scared. I couldn’t hold my baby, like I had my eldest, I couldn’t do skin to skin after he was born, I couldn’t be with him, my husband couldn’t be both with me and with him, we couldn’t be with our eldest explaining everything and we didn’t know it would be ok. We were in complete all consuming shock; both physically and emotionally.

He spent a day in ICU and then into HDU where he was for 12 days. The alarms were so scary. Every tiny movement was interpreted by us as something major and we kept preparing ourselves for the worst. After 9 long days we agreed on his name. There were so many unspoken conversations between my husband and I. We were both too scared to say things aloud. I was terrified he would die nameless – and it was then I realised I had also missed out on all the things you get to do in the last 10 weeks of pregnancy, such as leisurely playing around with names.

We both felt completely powerless. We tried so hard to learn the NICU language, to understand the alarms, to ask useful questions at the morning consultant meetings we insisted we were present for. There was literally nothing we could do to help and that felt so alien to us when we had been our eldest’s sole carers right from the start. 

We remember the constant hand washing (the only outward sign of the only thing we could do to keep our tiny baby safe) and the resulting cracked painful hands which somehow seemed to me to be my way of feeling just a tiny bit of what Nicholas was with all the blood tests and lack of cuddles. I remember feeling numb as a way of protecting myself and the pain from my hands breaking through that numbness. Every twist and turn our story took I had to pick myself up again and find more strength and resilience.

We used to call the NICU every morning at 6am (having learnt the nurses shift patterns and when we could ensure the phone would be answered) to avoid any shock when we arrived at the unit. So every morning started with an adrenalin rush while we braced ourselves for the news of more braddies or reflux and we just hoped someone had cuddled him when we couldn’t.

While we sat with Nicholas tucked up inside our tops, every day and every evening, for 6 long weeks in LDU, watching the alarms go off, learning about reflux, about reading a preemies body language and development, and holes in heart valves, researching every scan and test so we could feel that bit involved in his care, and so much more, our family were doing our nesting; building furniture and washing his tiny clothes. We were so determined to get him home but so cautious it would be when he was ready. Leaving him every night was torture. We were both so torn – we needed to be at home for our eldest son but Nicholas needed us too. We felt guilty getting some sleep when we could be cuddling him and leaving him every night to go home and express breastmilk in the middle of the night without him is a pain only other NICU mums will understand. 

But Nicholas is a stubborn little one and so determined and he made it home at 36 weeks. That was another scary step. We both felt so unqualified to take him home and were cautious in a way we hadn’t been before. We tried to read every sign and watch his every breath scared we might miss something. We slowly relaxed over the 2 weeks but unfortunately it didn’t last. 2 weeks later, I was cuddling him to sleep when I noticed strange breathing patterns and he became floppy and blue. 

We called 999 and an ambulance rushed us to A&E. I can honestly say I have never been so scared.

The medical team were amazing, but couldn’t reassure us he would survive. Two weeks before he was even meant to be here, his swollen face was intubated and we sat with him again for a week, expressing milk and willing him to survive pneumonia and suspected meningitis.

Again, we got lucky and one week later he bounced back and we bought him home!

1 year later, after countless hospital check ups, weight gain concerns, tongue tie challenges and procedures, appointments and more weight checks, over reacting at every cold (one week I got the doctors to listen to his chest 4 times!) and assuming the worst with every change in breathing patterns; with the help of the amazing support team from the NICU we are celebrating our little boys first birthday – and, apart from his size, it’s like it never happened. And we are amazed, how lucky we are. 

With special thanks to Jenny Johnson for sharing Nicholas’s story. 

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Why we Should Make #TimeToTalk Following Premature Birth 

Today, 2nd February, is #TimeToTalk Day – a day where people are encouraged to break the silence and to speak out about mental health. 


It can be difficult to know where to start when talking about mental health following neonatal intensive care…. there’s so much to say and often so many conflicting emotions. 

So, perhaps it’s best to start by shining a light on the world of neonatal care. After all, NICU remains a mysterious and unknown place to those who have had no reason to be there. 

The neonatal unit is a place of worry and uncertainly. Things can change day-to-day, hour-by-hour, sometimes minute-by-minute. Treatment plans or daily cares can be changed overnight and there is a panic that strikes to your very core when the unit telephones or if your baby is not in their incubator space when you arrive. 

The neonatal unit is not somewhere you can plan or prepare for. It is a medical world where control is taken away from you and helpless parents watch their babies from behind the incubator walls. 

It is a world of ups and downs; lines and wires, monitors and alarms. A hospital ward full of tiny lives, where the emotions of hope and fear, joy and guilt go hand in hand. 


At times the heat of the unit can leave you feeling trapped as nurses wisper and hurriedly attend to the sickest babies. There is the constant hum of breathing machines as dinging alarms interrupt without warning – the noise becomes your soundtrack to neonatal care. 

There are security buzzers at the entrance  to the unit – “it’s Samuels mum” I would say over the intercom. I felt distant, certainly not like a mum. I’d not held my baby, I hadn’t fed him or clothed him. I hadn’t even really seen his face. How could I be his mum? I was lost. 

Feeling watched you attend to the simplest of cares such as changing a nappy. Are you doing it right? Why is the monitor flashing, was that line meant to go there? Limbs so tiny that the weight of them doesn’t register in your hands and  skin so fragile your terrified you’ll break them. 

The feelings of emptiness and loss are so great that you hurt physically. My chest ached where my baby should have laid his head and my body cried for the baby who should have still been inside.  

Feelings so raw you can’t make sense of what has happened. Feelings so conflicting and powerful that they last long after bringing your baby home. 

And the NICU soundtrack? The ding ding ding of monitors? Yep – they send me right back to where it all started. 

So today, on #TimeToTalk Day, I write about neonatal intensive care and the trauma of premature birth to start a conversation. To explain why 2 in 5 mothers of premature babies experience mental health difficulties – and to say “you are not alone”. 

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