Tag Archives: preemie club

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

NEW! – “Preemie Proud” Red Book Stickers

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

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

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

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

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

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

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

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

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

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

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

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

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

Smallest Things

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

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

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

 

 

 

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Premmie Mum: Things I Want you to Know

Preemie mum, there’s a lot I could tell you; so much I’d like you to know.

I’ve been there, a NICU mum; sat in a state of shock beside the incubator. So I know that the last thing you need is more information or ‘helpful’ advice when all you really want is answers…

Why did this happen? What could I have done? When will I hold my baby? Will my milk come in? Am in pumping enough? Will I bring my baby home? When will my baby leave hospital? Will they be okay?

Smallest Things

These  are the questions that fill your mind as you get to grips with the world of neonatal care, and as much as I’d like to, I simply cannot answer the most important ones and sadly the answers to some of those questions are never known.

What I can tell you though (and believe me when I say it’s just as important) is this –

  1. Take time to notice the little things; with emotions running high you can miss precious moments. Remember the feel of your babies hand as they grip your finger tightly or the shape of their tiny features.
  2. You are not alone. There is a community of parents who have been before you and will be ready to support and advise. Wonderful staff will help you through the most difficult days and your baby will become your strength.
  3. We are ALL mothers. To those who have lost babies we will always remember them and say their name.
  4. Please let others know how you’re feeling. It can be scary to share your emotions, but by letting friends and family know your thoughts they can empathise and better support you.
  5. Ask for practical help. People may ask ‘what can I do to help’ and you may like to share our top ten list of ways to help prem parents in hospital.
  6. Mum knows best. Yes, it’s true! You know your baby better than anyone. Never forget that or be afraid to speak up.
  7. Take time to rest. Yes, I know! It’s easier said than done, but really it is so important for both you and baby.
  8. Be preemie proud! Oh so proud! You will see your baby accomplish things that most parents will never experience. Your baby is learning to breath, learning to co-ordinate their suck reflex and is developing right in front of your eyes. How amazing is that?!beautiful
  9. Preemie mum, know this – you are amazing!
  10. Preemie mum, remember this – you are doing great x

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

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#FlamingJune – Taking Action for NICU Mums

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

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

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

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

radio 5 live reception

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

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

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

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Star Achiever Award!

I wrote recently about a preemie kind of proud.

Today I am simply proud!

My nearly five year old is receiving a Star Achievers Award at school this afternoon for working really hard with his learning.

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Just three weeks ago he spent 6 nights in hospital with respiratory difficulties.

Two days after coming home, he was back at school.

“He’s pretty tough”, I said to his teachers who were worried that he was going back too soon.

I am so proud of my little boy who doesn’t give up.

I am proud of my little boy – the youngest in his year; the one who should have started school this coming September, but instead was born into an academic year too soon.

I am so thankful to his teachers who give him extra support; who recognise the needs of a child born into the wrong academic year and who encourage him to be him – a four year old.

Like any parent I am proud of my Star Achiever.

My Star Achiever who keeps going; who takes everything in his stride…

My Super Star Samuel, who has been making me proud since day one.

NICU mum I salute you | for mothers day

NICU mum I salute you!

NICU mum, yes you.

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

 

You are someone very special, someone immensely strong.

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

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

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

 

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

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

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

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

 

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

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

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

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

 

NICU mum I see you, battling brave and strong,

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

Your journey’s not for the faintest of hearts,

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

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

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

How strong you are in what you do,

– a mother in NICU.

 

 

NICU mum I salute you!

NICU mum, yes you.

You are someone very special, someone immensely strong.

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

 

smallest things

The Power of Storytelling

Each and every one of us has our own personal story. Our stories of course may be quite different and our experiences unique, but for parents of premature babies our journey into parenthood will overlap and our experiences may be reassuringly similar.

For the last year I have shared my own story of premature birth and of a journey that does not end at the NICU door. I have written about first holds, kangaroo cuddles, grief and loss. I have written about the sudden interruption of pregnancy, the uncertainty of the unit and the sights and sounds of neonatal care that stay with you long after you leave. I write to raise awareness; but I also write because of those who have been before. For the parents who have already shared their own experiences of NICU, whose stories I found when I needed them the most. Yes, each story of neonatal care will be different, but the similarities are often striking and this discovery can bring great relief.

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Storytelling can be an extraordinarily powerful tool – with stories that offer hope, humour, those that make us think or give us courage. Stories which help us to negotiate challenging times, to give us strength and to shine a light on the way ahead. Stories can bring us comfort and let us know that we are not alone. They can educate and reveal a hidden world. They can raise awareness and offer support.

Have you read a story that has helped given you comfort or hope? Have you got a story to share?

We are always on the lookout for stories of premature birth, neonatal care or life beyond (approximately 550-800 words) and we invite you to share yours.

Email Catriona at smallestthings@yahoo.com

Premature Birth: What it’s really like series

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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  1. Anything else you would like to add?

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

 

The Phantom Kick

The phantom kick. Just when you start to have a good few days, days without flashbacks, days without tears, days believing you are a ‘normal’ family, and then it happens again. The phantom kick. People keep telling me it is wind. It’s not. I know what it is and it kills me every time.

I miss the movements so much because it was something I was never meant to experience – they are also the reason my little girl is alive today.

In November 2014, after 3 painful operations to remove severe endometriosis and a total of 25 sub mucosal fibroids we were told that due to the extreme scarring in my womb lining, along with the rapid regrowth of my fibroids the chances of a fertilised egg implanting were around 0.1% We hadn’t really considered or decided if we even wanted a baby until that point, and here we were being told that a surrogate would probably be the sensible choice. We were sent to an adhesion specialist to see what advice he could offer and whether IVF would be worth a shot. In January 2015 I was waiting for day 1 of my cycle so we could begin IVF investigations………day 1 never came! A determined little bunch of cells had made itself comfortable in my scarred lining! Although we were permanently on edge during most of the pregnancy, as well as on an abundance of drugs, as soon as those first movements started it was all so worth it. I could not wait to get snuggled on the sofa each evening, with my hands on my bump feeling and cherishing every head butt, kick and punch.

And so it seemed incredibly cruel that the universe was to bring my cherished pregnancy to an abrupt end. On the 28th July 2015 my baby was quiet. Breakfast, a coffee, lunch, cold water, fizzy drink and laying on my side did not wake her up. 40 minutes after walking through the doors of the hospital I was in theatre, and half an hour later my baby girl was born via crash section at 29+4weeks gestation. Luckily the skilled anaesthetist had managed an incredibly swift epidural while the theatre staff scrubbed in, so I stayed awake. We did not know at the time, but Emma did not breathe for 8 minutes and her pulse was incredibly low. Once she was stable we heard a small whimper, before she was whisked away to the NICU. It sounds crazy to me now, but once we knew she was alive, and once the atmosphere in the theatre changed to that of relief (the radio went on!), I really thought I’d be taking my baby home in the next few days! I had no idea the journey we were about to embark on, and this is coming from a nurse of 15 years!

Emma NICU

Nobody warns you about having a premature baby. As the last in my group of friends to have a baby (and having been a birth partner twice!) I knew all about nightmare births, forceps, meconium, stitches, c-section recovery, breast feeding troubles, yet I knew nothing about premature babies. Surprising really, given that two of my friends had walked their own NICU journey. One of the NICU nurses came in to ask if I had planned to breastfeed while I was still open with my insides showing on the theatre table! We didn’t know! We hadn’t even been to NCT class yet! And that was the beginning of the surreal NICU journey we had suddenly found ourselves on.

I can’t really remember the first time I saw my baby in the NICU, no matter how hard I try. I vaguely remember being told that all her initial scans were normal, and that she had 6 toes! She also had an incredibly swollen leg where they had struggled so much to get her out. It was thought for a small amount of time that she may lose the leg, we didn’t care, we just wanted her to survive. The strongest feeling I remember is that I just didn’t know her. I didn’t know who this tiny foetal like baby was. They kept telling me she was mine, but how could she be? My baby was still inside me. All of my expectations of that ‘huge rush of love’ were among many of my expectations which were now crushed. I felt nothing but shock, fear, guilt and that I had been robbed of my pregnancy. I could not understand why nobody seemed to understand me and how I felt. I kept getting told ‘yes but she’s here and she’s safe.’ I could also not understand why I kept getting cards through the door with ‘congratulations’ adorning the front, when in my head there was nothing to be rejoicing about

Emma with mum and dad

Once out of ITU and in to HDU, and having battled RDS, sepsis, reflux, apneas and bradycardias, we soon fell in to NICU life. Twelve hour NICU days soon became the daily routine of express, feed, cares, consultant round, feed, express, coffee break, feed, express, lunch break, afternoon visiting, express, and then try to go home without my baby yet again. This is perhaps one of the hardest things, to leave your baby in the hospital. It never got easier, not once in 46 days.

Bizarrely on the day we were due to take our baby home, the day we’d spent 7 weeks dreaming of, I was so upset! We had become institutionalised, and this NICU life was our new ‘norm’. The thought of going it alone at home was terrifying! Luckily Emma has made it incredibly easy for us. She is an amazing baby, and each day I am totally in awe of her, and everything she has battled through. I can’t bear it when people say in jest ‘it’s a hard life!’, when they see her sleeping peacefully with a tummy full of milk. Yes it was a hard life for her, and look how amazing she is!

Emma

I don’t think our NICU memory will fade just yet, we are currently battling through our first winter, terrified that she will get a cold bad enough that will hospitalise her, and every milestone reached sees us breathe a huge sigh of relief. I still have my own internal battles to fight too. The flashbacks and negative feelings have reduced slightly, but we still have a way to go. The hospital have been great, and have provided counselling for us so we can work through our feelings. And I hope that sometime soon those phantom kicks will disappear.

Since discovering ‘The Smallest Things’ things are a little easier. Reading the blogs has helped no end, and I love to see the great work that is being done. It makes me quite passionate about prematurity awareness and supporting other NICU mums as best as I can. A colleague of mine has recently had her baby at 23 weeks, and suddenly I knew I could turn my experience in to something positive, by supporting her as much as I can.

NICU makes you a different parent I think, all the small things are indeed small things, not worth getting stressed about. The fact that she breathes, eats, smiles and moves is good enough for us! If she cries through the night, so what?! We are incredibly lucky that she can. If she clings to me all day and won’t be put down, so what?! I have a lot of cuddles to make up for. We continue our life like we did in the NICU, one day at a time, each day is a new blessing and our house is full of love, kisses and incredible gratitude.

Michelle

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If you like to help raise awareness and support other families through neonatal care please do share Michelle’s story – Facebook, Twitter……

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

Fading memories: A NICU World

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

smallest things

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

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

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

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

We’re doing fine

We’re doing fine…

I often write about pulling back the curtain and shining a light on the mysterious world of neonatal care.

I often write about the importance of sharing stories and of speaking honestly about the reality of neonatal intensive care and life beyond so that awareness can be raised.

So why after a difficult few days of surgery and a hospital stay do I still find myself uttering the words ‘we’re doing fine’.

I hear myself saying – “the surgery went well” | “the surgeon was pleased with how it went” | “he’s doing okay” | “It’s good to be back home”.

I don’t find myself sharing how in the days leading up to the planned surgery I felt sick to the bottom of my stomach; how I was plagued with vivid flash backs from our time in NICU and other difficult hospital stays.

When well meaning people comment “at least that’s over” I don’t share my frustration or show my upset when I know our journey continues.

When people ask after him I tell them he’s doing well; I don’t share how he struggled after recovery, how we watched as his breathing deteriorated and how we stood by as doctors surrounded his cot. I don’t describe the panic that set in or describe the feeling of helplessness.

I don’t tell how I fought back tears as my husband left to collect our eldest son from nursery; how I had to dig deep to find the strength to advocate and care for him on my own. I don’t mention how much I missed our eldest son and the guilt of splitting our time between the two. 

People ask kindly after me.  I say we’re doing fine.

I might say I’m tired; really I mean I am exhausted. My head is full of worry and I can’t quite think straight. The flash backs still creep in.

I might say I’m glad to be back at home; but really I mean I’m glad we’ve made it through, but I’m already looking to the next stage of our journey – the worry never ends.

We’re doing fine – three little words: They don’t say a lot and they don’t raise awareness, but they get us through.

We’re doing fine. smallest things

TOP TEN! | Did you know….

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

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

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

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

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

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

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

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

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

untitled (5)

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

cuddles

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

A – Z of NICU!

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A – Amazing: All premature babies are quite amazing, as are their parents and the staff who care for them 24/7.b

B – Breast Feeding: Establishing breast feeding in the neonatal environment can be tough; but putting a baby born too soon to the breast is also a big moment for many NICU mums who wait days or weeks for the opportunity.

C – Corrected Age: A baby’s age calculated according to their due date rather than their birth date, the date at which milestones and weight should be measured against.d

D – Dates: Birth date, due date, leaving hospital date – dates can be significant for parents of children born prematurely. A birthday will always signify the day your baby arrived early and the lead up to celebrations can be a reflective time for parents.

E – Expressing:  The three hourly cycle of pumping to produce breast milk for your baby in neonatal care.f

F – Family & Friends: There to help and support you, but friends and family may feel helpless or left out. Ask them to help with practical things, such as buying micro-nappies, cooking a meal or helping with childcare. Take advantage of offers of help, but allow time for yourself.

G – Going Home: Sadly not all babies leave hospital, with some born too small or poorly to survive. They are always remembered.  For parents who do bring their babies home from NICU we know they face a host of mixed and often conflicting emotions…. relief, joy, anxious, scared.h The journey rarely ever ends at dischage.

H – How old is your Baby?  The question every parent of a baby born too soon dreads. “They’re six months… but they were born early…so really they are only 3 months”, you hurriedly explain.

I – Incubator: Your baby’s home, keeping them warm and safe from the outside world. A place where you will find a parent sitting, watching and waiting.

jJ – Jealousy: Suddenly there are heavily pregnant women everywhere you look. Proud fathers carefully carrying car seats are around every corner and your Facebook timeline is seemingly full of mums cuddling their newborns whilst you wait anxiously for your first hold.

K – Kangaroo Care:  The act of skin-to-skin care beneficial for both baby and mother.

l'L – Loss: Loss of pregnancy; that final trimester, the lost time to prepare. Loss of that first hold or touch as your baby is taken away to NICU. Loss of a baby to take home, the emptiness that fills you as you leave hospital without them. Lost maternity leave as the weeks are spent beside an incubator. And the loss of a child, for the babies born too soon or too small, who do not come home from NICU.

M – Milk: Those first ‘golden drops’ proudly presented to the NICU nurse in a syringe. Followed by an obsession with numbers – how many mls, how many minutes, how many hours between feeds and expresses.

nN – NICU: An acronym you probably hadn’t heard of before, but now you know every aspect of what the Neonatal Intensive Care Unit means.

O – Overwhelming: Nothing can quite prepare you for parenthood, but for parents of premature babies the planning and expectation of a new arrival is dramatically interrupted. You are thrown into a world of micro-nappies, beeping machines, breathing tubes, feeding tubes, expressing pumps, portholes, picc lines and rigorous hand washing. It is quite simply – overwhelming.

P – Preemie Club: A lifelong membership to a club you would never have wanted to join. Once a preemie parent, always a preemie parent, sharing experiences and feelings only other preemie parents will know.

qQ – Quiet: The neonatal unit is one long continuous wave of sound; bells and buzzers, alarms and machines. Take time outside the unit and outside the hospital to find a quiet space each day.

R – Reason: In 40% of cases there is no known reason for premature labour.

S – SCBU:  Another acronym and a step closer to home. The Special Care Baby Unitt

T – Trauma: The trauma associated with an abrupt end to pregnancy and admission to neonatal intensive care can not be underestimated. Thrown into a medical world of uncertainty and all that it entails has a lasting affect, with many parents desribing symptoms of post traumatic stress disorder after the event.

U – Universal Care: 15 million babies worldwide are born prematurely.

V – Ventilation: To give oxygen to your babies lungs, helping them to breath or taking over their breathing completely.w

W – Wires and Lines: The tangle of wires and lines that cover your tiny baby – cardiac monitors, respiratory monitors, breathing tubes, feeding tubes, peripheral, central and umbilical intravenous lines…

X – Xtra Special – Whatever your child goes onto do, it will always be that little bity more special.

Y – You – Look after yourself.

Z – Z zzzzz: “At least you can go home and get a good nights sleep”… one of the worst things to say to a preemie mum!

z

6 Months: Making the Smallest Things Matter

6 months: Time can be a strange concept to a parent of a premature baby.

Timescales sometimes don’t seem to apply to them.

Six months, the length of my pregnancy – that still sounds wrong.

It has been six months since the launch of the Smallest Things.

– Six months of raising awareness.

– Six months of sharing stories.

– Six months where we continue to say, more support for parents of premature babies please!

Setting up our campaign has been a humbling experience; not least through the overwhelming support we have received, but by the wonderful and often amazing people I am coming into contact with. Six months in I offer a huge heartfelt thank you to everyone who has supported us so far, to each and every one of you who have helped to make The Smallest Things what it has become in such a short space of time.

The solar eclipse took place earlier today behind the clouds and for a while darkness fell. As rays of light appeared and the darkness lifted I was reminded of the similar sense of hope felt by parents in NICU. The light at the end of the tunnel, the light as you edge closer to the NICU door and the light as you hope soon the NICU experience will become a distant memory. Sadly though not all babies survive their 1st picvery early start; born too small or too poorly – but mothers like Hugo’s mum Leigh inspire us through #HugosLegacy, becoming a ray of light for others surviving baby loss and reminding us how amazing ALL premmie babies are.

Of course we know that for many, despite the hope, NICU does not become a distant memory. Indeed the sounds, feelings and emotions can stay with parents of premature babies for years to come. Sarra Hoy describes beautifully her own journey in neonatal care and her membership into the ‘premmie mum club’; a life long membership for her, yet a determination that her son will not be defined by his early start.

smallest thingsFinding yourself to be part of ‘the premmie club’ has been a welcome discovery for some, with mothers visiting our site and for the first time recognising their own story in our words – “it’s so reassuring to know that a lot of the thoughts & feelings I had whilst baby was in special are common amongst prem baby mums!”.

There have been lots of positives to our campaign so far, like the politician who supports our campaign to extend maternity leave for mothers of very premature babies “In such a crucial time for families, it makes sense to support extended maternity leave for parents of very premature babies” or the hospital chief executive who has agreed to review their car parking charges and policies for parents of babies in NICU … but it is the smallest things that matter and if just one mother has found that her feelings of loss and grief are common and indeed a ‘normal’ part of the NICU process, or if just one mother recognises the symptoms and feelings of PTSD or anxiety and seeks help, then 6 months as the Smallest Things has made the small things matter.

Time can be a strange concept to a parent of a premature baby.

Launching on the 20th September, picked as a special date, the date on which we brought our first son home from hospital. Six months later, how old would he be?

– Eight months, his chronological age?

– Five Months, his corrected age?

How old is your baby – the question every prem parent dreads!

Parents of premature babies may also recognise our sigh of relief that we’ve made it through the winter – through the beautifulcough and cold season! With spring on our doorstep we now look forward to the next six months in anticipation.

– Six months of raising awareness.

– Six months of sharing stories.

– Six months where we continue to say, more support for parents of premature babies please!

 

Shock, Trauma & Hope: A Life changing journey through Neonatal Care

Callum Hoy born at 29 weeks

Callum Hoy born at 29 weeks

It has been 140 days since I heard the words “Oh this is not good, not good at all. This baby has to come out”. It’s been 139 days since my baby was born at 29 weeks by emergency c section, weighing 2lb 2oz, having stopped growing some weeks before.

For quite a while afterwards, whilst still in a state of shock, I would find myself telling anyone who would listen that I’d had a premature baby. I told bank tellers over the phone that I’d had preeclampsia; I told the dry cleaners I’d had a c section. I told delivery men who came with packages, that my baby was in intensive care. I found myself telling a stranger in the vegetable aisle about my little bean of a baby who was currently growing in an incubator rather than in me; an “artificial womb” if you will. A complete stranger!

Now, 140 days later and my baby is home and (dare I say it) …thriving. And yet even now I find it hard not to shout I’VE HAD A PREMATURE BABY at traffic wardens whilst in the supermarket car park.

This is the mark of a premmie mum. From nowhere, I was signed up and given lifelong membership to a club I never wanted to join, nor even imagined existed. I can now talk a good talk around an intensive care baby unit. I understand the transition from ICU to HDU.  I know all the different ways to store breast milk. I understand the loneliness of a breast pump at 3am; how devastating it is to have to try and trick your breasts into producing milk, when your body has barely realised it was pregnant, let alone known it has delivered a baby. I know about the intense feeling of loss, having had a pregnancy so rudely interrupted and ended. I will never know the satisfaction of growing and delivering my own baby.

And I also know about the brain scans, lung X-rays, heart monitors, countless blood tests, oxygen saturation levels, cpap machines and ventilators. I know what NEC, RSV and ROP stand for both literally and metaphorically. All things I was happy not knowing about, not least in relation to a baby; my baby.

We are so fortunate that our little miraculous bundle managed his ICU journey relatively uneventfully and with little fuss. He quietly made his way through the Neonatal unit, graduating 2 months later, when he was discharged and allowed home. What an incredible little human we have been gifted.

And even still, the mark of our NICU journey remains with me. I think about it all the time. It never leaves. Everyday I relive some of those 140 days, through vivid flashbacks and intrusive memories.

I am also reminded how lucky we are. There are also miraculous little fighters who didn’t manage to come home and whose journey began and ended in the NICU. I think of those wonderful babies whenever I see mine.

A few weeks ago a friend kindly suggested we should keep an eye out for our child, even throughout school, due to his prematurity. “You can tell the early ones” she helpfully observed. That may well be the case, but I’m determined that while my experience of pregnancy, birth and NICU has changed me, it will not define my child’s life. As soon as he is old enough to understand, I will stop talking about my experience. I don’t want him hearing adults discussing him or his early arrival. I don’t want him to hear all the reasons why he might not be as big as the other boys; why he might not be able to grasp things as quickly or why he struggles with some everyday tasks. My boy is a fighter and can accomplish amazing things. We know this because he’s done it already.

Whilst I might be a member of the premmie club, which brought me grief, sadness, worry and miracles in equal measure, these are all chapters of my story; I’m determined they won’t be part of his. He’s not a member of this club. He’s a strong, determined, ingenious little boy who held his mum’s hand and led the way, guiding me through a nightmare of a journey. This is what will define my little boy.

With thanks to Sarra Hoy  | @sarrahoy  | for sharing her story and writing for Smallest Things in our latest guest blog.

guest blogIf you have a story to share, please email Catriona at smallestthings@yahoo.com