Category Archives: SCBU

A journey through neonatal care

Alexa was born at 25 + 2, weighing 588g on February 19th 2014 delivered by emergency C-section due to severe early onset preeclampsia.

I read those phrases so many times; in Alexa’s notes and on whiteboards and I repeated it so often when we were in hospital. It was what defined her and defined me. In writing it now I realise that it no longer matters. No-one asks me that anymore and I rarely think about it. And what a relief that is.

alexa_Feb

Before she was born

I was diagnosed with early onset preeclampsia when I was almost 24 weeks pregnant. Like many other premature baby stories, it was a routine GP appointment that ended at hospital.  My normally unflappable GP looked concerned when she took a urine sample and my blood pressure. Then she called the hospital to say I was on my way and told me to go home and pack my bag. She told me to hurry because I was at risk of a stroke. The next morning the consultants were saying I wouldn’t leave the hospital before the baby was born. I remember thinking ‘but it is February what am I going to do in this bed until June?’  What they meant was that the baby was going to be delivered early.

Eight days later I started violently vomiting every 15 minutes, I had heartburn and I kept going to the loo. My blood pressure soared to 220/I can’t remember the bottom number when someone declared an emergency C-section. Nurses were panicking about cannulas and not being able to find veins. Someone waved a consent form urgently for me to sign. I remember my husband’s gorgeous and somehow calm face in a set of scrubs. I was surprised to hear a radio in the operating room. I fell in love with Amy the anesthetist. And then it was over. My husband saw our daughter. I was wheeled away. I was at risk of a fit and because of this I had to stay in hospital for ten days post-delivery.

A labour ward is hellish when your baby isn’t by your bed. There are happy joyous parents everywhere with healthy full term babies. I was terrified, disorientated and really upset.  I remember a kind of solidarity with the other neonatal unit mums, we would acknowledge each other shuffling baby-less from the labour ward to the neonatal unit and back and someone even managed to joke that the bouncing full term babies on the labour ward looked like seven year olds to us.

Being discharged

I wanted to leave the torture of the labour ward. I just wanted to go home. And once I got the all clear I rushed to pack up my room and got ready to go. But we left the maternity ward without a baby in a car seat. Just me, my husband and my suitcase. And it was too sad. I came home not pregnant anymore but there was no baby. We came home dropped my bags and went straight back to the hospital.

The early days

Alexa was tiny and skinny with dark brown skin. She didn’t look like the cuddly chubby babies we are programmed to expect. She looked weak and frail and was surrounded by a lot of unfamiliar equipment. I was shocked and frightened when I first saw her. At the start I was really confused and didn’t recognise her as my baby, I was afraid to touch her and I even panicked when some weeks later it was suggested I hold her. And I felt such a heavy burden of guilt that I had done this to her; my body had failed her. I had let her down already, before we had even started.

The (incredible) neonatal team at UCLH helped me move passed this and many other crazy and difficult thoughts and helped me find a routine. I would spend my intensive care days by her incubator, watching her, talking to her, singing to her, holding the tiny syringes of milk (she had 1 ml every hour), changing her miniature nappies and loving every tiny inch of her.

Medically

Alexa’s lungs were not good. We were in intensive care for 10 weeks not including a bounce back from a high dependency ward. She was on every breathing machine on the unit. The team tried to take her off the ventilator five times. With the help of steroids she went from the ventilator to lo-flow and then when the steroids finished she went right back to ventilator.

And in March 2014 she got really sick twice. Both times she was paralysed and sedated on an oscillator.  I will never forget how calmly and diligently the consultant led the team on both days, how steadily and respectfully everyone worked to understand what was happening. No-one one raised their voice or lost their temper or apportioned blame. People fetched us stools so we could sit and told us when to eat. I think of both of these days quite often. Primarily with relief, love, joy and gratitude to the team who saved our daughter but I also am still taken aback by how gracefully they managed such impossible pressure, stress and responsibility.

Alexa had Retinopathy of Prematurity and needed laser surgery at Great Ormond Street to prevent blindness.

She got stuck on continuous CPAP for months. There was talk of a tracheostomy. CPAP is really noisy and it blocked her vision, I thought how on earth is she going to develop with this on her face and I was convinced it was going to damage her nose.  It didn’t impact her, her development sessions are always a joy and her nose is perfect.

Alexa June

Emotionally

I would love to say that we handled it gracefully, that we were so strong and composed. But my husband and I were both a mess. I cried and cried and cried. It’s a strange twilight/ no-mans land when you have a premature baby: a) you’re supposed to be pregnant but then b) you are on maternity leave but then c) your baby doesn’t live with you. You wait and wait and wait for life to begin. I think I was jealous of women everywhere; pregnant women, women pushing prams, women with children, women going to work.. I went from being a confident and friendly person to a jittery and scared one who second guessed herself and constantly washed her hands.

People in the hospital used to say that mothers of premature babies go through a grieving process. I dismissed this at the time because Alexa was alive I told myself. And then I read Joan Didion’s ‘The Year of Magical Thinking’ about the death of her husband. She quoted Gerard Manly Hopkins:

‘I wake and feel the fell of dark not day’.

That was exactly how I woke up in those early days. It is a type of grief.

We were in hospital for seven and a half months and over this long course of time the shock, disorientation (and grief) of having a premature baby was replaced by the worry and sadness of being the mum of a sick baby. As she got bigger leaving her every evening got harder and harder. Maternal instinct is visceral and separation from your child is intense. Every night I woke up several times panicked soaked in sweat asking my husband where the baby was. Every night he would calmly say the same thing ‘It’s ok love she’s in Nursery 4, ‘XX’ is the nurse we called before bed and she’s fine’. This night-time ritual made me feel crazy.

And it didn’t stop until about a month after she came home.

The Expressing Room

The ‘expressing room’ was three plain blue chairs lined up in front of three blue expressing machines. It had bright florescent lights, no TV or radio and no privacy. And it saved my sanity. I poured my heart out to women in there and they to me. It was a counselling and therapy room where we willed each other on and told each other we could manage it.

The expressing itself was awful and amazing. A whole world of strangers talk about your ‘milk production’; nurses, consultants, feeding experts, they all talk about it to you, to your husband and to each other. You get over the embarrassment of it pretty quickly. There is not enough milk. Can you make more milk? She has no milk. She has so much milk. And if the milk is pouring out of you it’s a lovely way to focus and feel useful. But if it’s not then the whole thing becomes a very unique type of torture. Every 2-3 hours you hunch over the hideous expressing machine with an empty bottle not filling up. And the babies so desperately need mum’s milk to survive and fight on. There were a lot of tears. I ate everything anyone mentioned might help. I think I drank over 4 litres of water one day (this hurts your bladder A LOT). One Caribbean mum gave me a potion made in homes in Ghana that she got in Brixton and we cooked it up in our Hampstead kitchen. Eventually after 6 weeks of this, I got a prescription – and low and behold ‘mum’s milk’ came pouring out. We filled up our freezer for her.

Through it all the solidarity and strength of the mums in the expressing room kept me going. The support and the laughs. If I listed the jokes they wouldn’t be funny but there were tears of laughter on some days. And other days there were big wet tears of sadness and fear and frustration.

Family life on a neonatal unit

We were in hospital so long we had a lot of the usual baby ‘firsts’ with the neonatal team; a bath, sitting in a bouncer, tummy time,  tasting puree, a walk with Alexa in a pram.  It could have been awkward or strange but the Neonatal team made these moments fun and full of hope that we were able to do them.

Alexa July

I would spend hours with her sleeping on my chest. We read ‘The Wind in the Willows’ and ‘The Velveteen Rabbit’. We sang country songs (the poor nurses..). The hospital play specialist would come and see Alexa and me on Friday afternoons. To quote her, she would help me ‘bring the world to Alexa’. I loved our chats. Amidst the worry and heaviness of having a child in a high dependency unit, she reminded me of the joy of being a parent whose job it is to explain and explore the world with my daughter.

Nurses, consultants and registrars all became an extension of our little family of three. There was so much love in that ward, my heart still stops a bit when I think of it.

Leaving the Neonatal unit

While we were in hospital I developed an unhinged relationship with a pamphlet called ‘the pathway to home’. We never seemed to have it nor were people even mentioning it and the hallways of the hospital seemed lined with smiling parents reading it.  We had been in hospital for six months when it arrived at Alexa’s cot. And then suddenly we were planning for home, what we needed to do, what the hospital needed to do, who was involved, how to get ready. We had a discharge planning meeting with about 14 people giving input. Oxygen was installed in our flat (what?!) and friends sent me baby lists.

We finally left UCLH on a Friday night with our baby (and her oxygen tank) in a car seat. We had made the same journey twice a day for seven and half months to visit her and now she was making the journey with us. The cab driver went via Camden. I remember looking from gorgeous little Alexa and her oxygen tank to the Camden Friday night partyers and being jolted by the juxtaposition of it. I wanted to stick my head out of the cab and shout ‘Have Champagne!!! We’ve been in hospital for SEVEN AND A HALF MONTHS AND WE ARE FINALLY GOING HOME!!!

Early days at home

Champagne on the streets of Camden or no, we were not prepared for what it was like to bring Alexa home. We had become completely institutionalised and used to having a team of nurses and consultants around to help us and answer our questions and concerns. Alexa came home on a feeding tube, on oxygen, and I don’t know how many permutations of her medicine schedule we tried in order to line everything up correctly so that we gave the right gaps for the right medication and had some time for both of us to lie down. The seriousness and responsibility of it was terrifying. Her reflux meant that within 20 minutes of being home she vomited all over our cream carpet in the lounge. (I still smile fondly at that stain).

The winter was hard. We had to be really careful to avoid coughs and colds. And you can’t go to ‘Mini Mozart’ with an oxygen tank. It was lonely. And like any other working woman who has a baby I found it strange being at home a lot. But she was IN OUR FLAT! The joy of having her cot at the bottom of our bed and waking up with her in our room never got tired. And life got easier. The feeding tube came out quite quickly. The medicine reduced and then stopped. Home oxygen can be annoying and things take longer but it is manageable and before I knew it I was slipping the O2 tank onto my back and off to the park answering (with a pained smile..) for the millionth time the nosiness of a stranger who wants to know what happened to the baby.

And then they weaned the oxygen. The first time we took her off for 30 minutes; my husband starting skipping round the flat from room to room with her laughing and shouting ‘look at this, look at this’. It was so easy to move her without the wires and the portable tanks. And we saw those gorgeous little cheeks and face tube free! It was a slow slow wean and when she caught an inevitable bad cold (twice) we went to A&E and back to full time oxygen. But in May 2015 after a sleep study, she came off oxygen completely.

Now

Alexa is now a happy, chubby, curious, joyous toddler. And so we are a happy joyous family of three. Our life is happy and it is healthy.  We do normal things. We go to the playground, she plays with her friends and she sings and dances at bilingual beats on Wednesday afternoons. I have even returned to work.

alexa 2016

And every now and then when I see Alexa doing something ordinary and every day my heart bursts with relief and happiness at the normalness of it and the recognition that the pain and worry of our start is behind us. I look at her and I realise that we made it, the three of us, we have everything and we are happier than I ever thought we could be.

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With the support of her local MP Tulip Siddiq, Lauren is working to change the current UK legislation to make maternity leave longer for mothers of premature babies. 

SIGN NOW!  If you would like to support the campaign to give mothers more time with their premature babies, please SIGN the Smallest Things petition calling upon the Government to  “Extend Maternity Leave for Mothers of Premature Babies”

My missing trimester

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

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

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

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13,000!

13,000 signatures!

13,000 people; mums, dads, grandparents, uncles, aunts, friends and relatives.

13,000 people; enough to fill a premiership rugby club stadium!

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PETITION!

“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.”

Click here to SIGN NOW!

Extending maternity leave for mothers of babies born too soon matters; but don’t just take my word for it. Here are just a few examples of why people have been signing this important petition.

My daughter was also born 10 weeks premature. My maternity pay at full rate ended whilst my daughter was still in the NICU. As the highest waged parent I was forced to return to work sooner than i would have liked; our daughter was still ill, this led to a 8 month bout of postnatal depression for me and bonding issues with my daughter. I would have given anything to have spent more time at home with Martha getting her well, and getting to know her – I spent the first few months not letting myself get overly attached in case we lost her. We barely got her home when I had to return to work – emotionally i wasn’t ready!!

My son was born at 25 weeks and spent nearly 6 months in intensive care. It is important to allow extended leave so as to enable parents to spend more time with their preemie and to ensure that returning to work too soon is not another worry to add to the list of the many, many worries you have with a premature baby.

My daughter was born at 30 weeks and spent her first 6 weeks in hospital. Even when a premature baby is brought home the first few months (at least) are not “normal”. Anxiety- ridden days and nights watching for episodes of apnea and often return visits to hospital are par for the course. It would be amazing if you could at least have the weeks back that the baby was spent in hospital. These babies, given the traumatic start they’ve had, need even more care and time for bonding than term babies; anything that would prolong time for this would be a good thing.

My twins were 11 weeks premature and stayed in Nicu for 9 weeks. I’ve had to take a career break from work as no option to extend maternity leave or reduce my hours.

As a neonatal nurse I see every day the long term health and financial hardships families suffer when a baby is born too early. Extending maternity pay and leave would go some way to relieving the pressures these families face and help improve the quality of life of these fragile babies during their first months.

I also had a premature baby who was born at 33 weeks. I was hospitalised before I had her and have another child at home so my maternity leave has consisted of sitting next to an incubator after major surgery for days on end. Traveling over 2 hours to see my very sick baby suffering physical and emotional pain every day being told shear not make it over and over. Maternity leave should be extended to start when the baby was due or when they leave hospital at least for parents whose babies come too soon! When a baby comes home the emotional trauma and binding issues coupled with the anxiety and medical issues have such a huge impact that parents need time to deal with everything without worrying about going back to work with considerably less time off than other “full term” parents.

This one petition calls for extended leave for mothers of premature babies, focusing on the bond between mother and baby, mums mental health and a mothers ability to return to work. Many mothers are forced to return to work much earlier than they are ready to and others simply have no choice but to leave their career altogether. Whilst this petition specifically focuses upon the needs of the NICU mother, NICU dad’s matter too and we will continue to raise awareness of the realities of NICU and life beyond for all the family.

Next stop 15,000! ….

Daisy Daisy

Daisy Daisy – my friend at university used to call me that, because she said I looked like the comedian Daisy Donovan and had similar facial expressions. As a care free 20 year old I had no idea that one day I’d be called that again, instead because I’d be milking myself several times a day.

I’d had no breastfeeding versus formula feeding ideals when I was pregnant. I felt quite relaxed about the whole feeding thing. As a formula fed baby myself I knew that it wasn’t this big evil devil food that it is made out to be – I had turned out OK! But I was quite open to giving breastfeeding a go, although I’d had a strict word with myself to never get stressed over it. I’d had so many friends who had been truly miserable during those first few weeks, battling with breastfeeding and an inconsolable baby. I was not going to be like that. I was not going to be stressing about milk production. Not me. No way. And then I had a premature baby.

Emma NICU

Less than an hour after my 29 weeker was born, having been resuscitated and rushed off to the neonatal unit, me laying on the theatre table amongst this aftermath of chaos, my poor sliced up womb now out on my belly being sewn back together, the neonatal sister burst in; ‘Michelle, were you planning to breastfeed? We need to know for the care plan.’ My husband and I just looked at each other in bewilderment, each looking to the other for the answer to the question. It was my husband that answered, ‘Erm, we think we were going to do a bit of both?’ I had no idea at that point the direction that my breastfeeding journey was heading, instead I had images of a tiny baby suckling at my breast the next day!

It starts with the hand expressing. I was shown this technique by about three different midwives until I was shown the correct technique. I managed to get my first lot of colostrum on the second night, 0.5ml if I remember rightly. I felt like a superstar. I still at that point, had no idea about the pump. I had signed the consent for donor milk, which you don’t even think twice about, because by this point you know how vital it is that your tiny baby has breast milk. It is only now I sit and think about the donor milk that I feel upset that my baby had another woman’s milk in her first few days of life. That was certainly not part of my ‘relaxed about feeding’ plan. I carried on with the hand expressing for two more days when the neonatal sister mentioned the pump. Because I was so tired from all the medication I was taking, as well as my three litre blood loss, she said she would show me the following day.

The following day we arrived to discover that Emma had moved from ITU to HDU. Although just two doors down it was like a different world. Different nurses, different babies, different noises and beeps. I felt immediately on edge, as we had just started to settle in to NICU life, and now our routine had changed. I should have felt elated really, Emma wasn’t sick enough for ITU! But now it was all different. I know now that the sullen and stressed nurse who showed me the pump was brand new herself. It was five minutes of ‘this is how this goes together, use this setting, turn it up as far as you can manage.’ And that was it. I just didn’t know better at the time, I really thought that was it, so I just got on with it. I will never ‘blame’ the nurse for it, but I really think that was one of the main reasons why I always struggled. My milk had ‘come in’ that day. I think I got about 10 or 20 mls. I was told that was brilliant, and so I just carried on. It was so painful that first few times, feeling my wounded insides contracting with every pump, I’d often be in tears in the express room.

Expressing every 3 hours, 8 times a day and during the night is really, really hard work. In the early days I didn’t really take notice of the amounts, I just expressed, almost in a robotic fashion. It wasn’t until I was out of that initial NICU ‘two week fog’ that I started to take notice of what I was actually doing, and also what everyone else was doing, and that’s when the ‘express stress’ began.

The stress starts when you notice the amounts other mums are getting, and then you compare it to your piddly amount in the bottom of the smallest pot. I saw mums with the super duper large pots full to the brim. I also noticed the freezer, jam packed full of milk from the other mums. Why wasn’t I getting these amounts? ‘Because you are anaemic. Are you eating enough? Are you drinking enough? Are you stressed?’ Of course I was stressed, I delivered my baby at 29 weeks, nearly lost her, and now we have to exist in this neonatal unit………Of course I was stressed, and not eating enough, and not drinking enough. I was also hugely jealous of my husband, who got much longer cuddles and much longer quality time with Emma, while I was always rushing off to the expressing room.

I started carrying a huge bottle of water around everywhere I went, eating flapjack like it was going out of fashion, smelling like curry due to my intake of fenugreek tablets, and turned the pump up as far as I could possibly manage. Bad move. Doing that results in horrendously cracked and painful nipples, and eventually, mastitis. This meant that when we started encouraging Emma to latch, it was eye wateringly painful for me. I looked at picture of her while expressing, I expressed by the incubator, I sniffed her blanket like I was told to, I ate a box of ‘lactation cookies’ sent to me by my lovely friend, but nothing worked.

breast feed

Twice a week we would get so excited for weigh day, but that excitement then always turned in to anxiety for me. Emma was doing so well, gaining weight like a trooper, but with every weigh day came an increase in milk requirements, meaning I needed to express more and more, and I was still struggling. My ‘personal best’ at this point was around 50mL, I was still on the small pot, and it was really upsetting me. My friends talked of a ‘let down’, of feeling full and empty, but I felt none of these things, and therefore I felt like I must have been doing something wrong.

We continued with the breastfeeding as well as the expressing. Emma did so well breastfeeding and I was starting to enjoy it, until she decided one day to stop breathing while feeding from me – enough to put a halt to the most successful of breast feeding journeys! I decided then to just concentrate on expressing what I could, and we introduced Emma to taking the expressed milk from a bottle. She took to it like a dream, and I managed to just about keep up with her milk requirements. I would still put her to the breast occasionally, and I loved it, but was petrified she would stop breathing again.

nicu

Once home, and having battled with mastitis twice, nearly resulting in an admission for intravenous antibiotics, I decided to stop expressing. At the time I was excited to stop and feel freedom from the pump, but once stopped I felt really sad. I missed seeing her latched on to me, her little face looking up to mine. But I knew that I couldn’t be ill again and look after her, especially now my husband was returning to work. She had breast milk exclusively for nearly 8 weeks, and although I was sad to stop, it is more than I ever imagined I would do when I was pregnant, and for that I’m pretty proud of myself.

This expressing and breastfeeding battle is one felt by many mums of premature babies. Your body isn’t expecting to start producing milk so soon, that’s the first battle. And then you don’t feel all those lovely baby hormones they tell you about, as you have very limited skin to skin time with your tiny baby, and they very rarely latch straight away, so you don’t get that natural increase in milk production. You are stressed, confused, bewildered, guilt ridden, tired, and terrified that your baby may not survive. Is it any wonder that so many have difficulties expressing?

I look back and wish I hadn’t felt so stressed over expressing, as it seemed to dominate most of my time and thinking during the days in NICU. I also look back and laugh a little, knowing that I went against everything I had felt so strongly about, but how can any best laid plans come to fruition when your baby decides to make an early appearance?!

 

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

Tommy’s Awards Nomination – a HUGE thank you

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

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

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

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

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

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

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

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

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

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

Winnie the Pooh – the day I became a mother

 

Winnie-the-pooh_the-smallest-things

The first time you leave your baby can be a big moment for new mothers; this little person, a new life you have carried, part of you in someone else’s care.

I remember leaving my baby for the first time.

The memories, although hazy through shock and disbelief, are still ever present.

He was only a few hours old and I did not leave him with a trusted family member of friend.

I did not cuddle or kiss him goodbye, knowing that I’d only be gone a short while.

Instead I would be gone until morning time.

 

I held his tiny fingers through the incubator portholes and whispered ‘see you soon’.

I had not held him in my arms and my body ached from labour.

I would leave my tiny baby, born too soon, in the care of strangers, not knowing what the morning would bring.

NICU day 3 | Lines & Wires

I was empty and without my baby to hold.

I was numb and grieving for the baby I had left behind.

 

Neonatal intensive care, a world of medical devises and babies housed in boxes. A place of uncertainty and of up and downs. An environment where you are tested to the limit as you watch your baby fight and grow.

In neonatal intensive care I cared and tried to provide for my baby. Expressing became ingrained as part of my new life and pumped breast milk became like liquid gold.

When the time came I was able to hold him in my arms, but tubes and wires obscured his face and prevented me from holding him close.

I longed to kiss him, to whisper ‘I love you’. My heart ached for the baby I so desperately wanted to hold tight to my chest.

He was in the care of an exceptional medical team and wonderful nurses cared for him 24 hours a day as if he were their own. Their kindness made leaving him a little more bearable each day, but behind the safety and warmth of his incubator I was a mother, but he was not really mine.

For weeks I would ask permission to hold my own baby; on occasions I would be told I was holding him too much.

Nappy changes were done on a strict timetable and feeding was scheduled around charts and numbers.

The unit where my baby slept was behind security doors and rigorous hand washing became the norm.

I cared for my baby in hospital, but he did not feel like mine and I did not feel like a mother.

 

We were unsure of how to celebrate his fragile birth. Cards of congratulations trickled in slowly as we tentatively announced his early arrival.

Finally, we were at home, that first magical night together. I’d been a mother for months, yet now I was on my own!

We held a naming ceremony some weeks later, a way to celebrate a new life, to introduce him to the family and to say ‘He’s here!’

I searched high and low for a quote that would sum up our journey and the way we felt about early starter. I eventually found it –

“Sometimes” said Pooh, “the smallest things take up the most room in our hearts”….

I had become a mother.

smallest things 

 

From one NICU mum to another…

Hello, I’m Francesca, and my little boy is Harry-this is our NICU feeding story:

Harry was born at 28w4d whilst I was on holiday in France, weighing in at 2lb13oz. He had no sucking reflex due to his prematurity, so was enteral tube fed via his mouth on a continuous pump (standard for prems in France) for the first few weeks of his life. When we were transferred to a UK hospital, when he was transferred to a NG tube and was syringe fed every few hours.

harry NICU

During the tube feeding, I expressed using the hospital pumps. This was something I hadn’t really thought about, and something I had to “learn on the job” thanks to language barriers, and a slightly different approach than nurses here would have! In addition to my milk, during our time in France he was also fed on donated breastmilk. This was because the hospital would not accept milk I’d expressed outside of the hospital. Unfortunately due to Harry’s prematurity, he was in a high-dependency hospital over an hour from where I was staying, so there were points I was expressing at night whilst away from Harry, and sadly had to dispose of the milk- very demoralising!

Harry was NG fed until he was ready to be fully established on breastfeeding, which was around five weeks before his due date. We had three full days of breastfeeding at the neonatal unit, to ensure he had completely got the hang of feeding – only then was his NG tube removed. Although I was exclusively breastfeeding, our neonatal department wanted to ensure he could also take a bottle, to ensure we could administer medications that were mixed into expressed milk – we found this less stressful for Harry, rather than syringe administration of medication.

Francesca and Harry

Unfortunately, due to further medical complications, Harry needed to be transferred solely onto a premature baby formula about 6 weeks after leaving neonatal, so our breastfeeding finished rather abruptly. I was quite upset by this and did worry about our bonding, but thanks to all the skin-to-skin care we’d had during our neonatal journey, this was not a problem.

Due to the traumatic birth we had, I suffered PTSD (Post Traumatic Stress Disorder), and have since undergone CBT (Cognitive Behavioural Therapy) and surgery, but thankfully Harry will have no recollection of his interesting start to life. But we will explain his incredible journey to him when he’s older, as we are so proud of our little fighter that we nearly lost. Harry is now a happy, healthy 18 month baby, who loves his food and is completely “normal” in his feeding.

Harry - Feeding

NICU and the neonatal journey is a tough one, and phrases as “you’re lucky you got to meet your baby early” do not help! But from one Mum who has come out of the other side, please hang in there. Be kind to yourself, and make time to recharge wherever you can. You are doing a fantastic job, and you’ve got a strength that keeps you going, that you didn’t even know you possess!

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If you’d like to share your NICU story with The Smallest Things, just drop us a line! Contact Catriona at e. smallestthings@yahoo.com

Feeding – that time of year again!

It’s that time of year again when perhaps our waist bands are feeling a little tighter and when New Year resolutions sounding food and drink are made and broken.

CYXlNzmWcAARASiAnd… it’s that time of year again when The Smallest Things will be discussing all things surrounding feeding a premature baby in NICU. From expressing to NG feeding; mls and hours; suck reflex and breast feeding – we’ll be looking at everything!

Did you know – a baby develops their suck reflex in the womb at around 34 week’s gestation?

So, for babies born before 34 weeks gestation many are feed via a nasogatric (NG) tube (a fine tube passed through the nose and into a baby’s tummy).

Did you know – mothers express for their babies in NICU on a 3 hourly cycle? Neonatal units have ‘expressing rooms’ where mothers gather to pump milk for their babies and sterilise expressing equipment. Some mothers have a plentiful supply of milk, whilst other mothers can find establishing milk supply difficult – often due to the stress and environment of the neonatal unit or recovery following birth trauma.

Expressed milk can be given to babies via their NG tubes and many mothers remember the first time they see their baby having their expressed breast milk.

Did you know – Expressing mothers set their alarm at night to continue expressing on a 3 hourly cycle; getting up throughout the night to feed a baby who is not with them and perhaps they have not yet held.

Establishing feeding – breast, bottle, expressed or formula in neonatal care can be a difficult journey and through our stories and experiences we hope to shine a light on the NICU world and offer hope to those embarking on this journey.

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

 

Our Top Ten New Year Resolutions!

  1. smallest thingsMore guest blogs! We love hearing your stories and sharing experiences is a great way to
    raise awareness and support other NICU parents. If you’d like to share any part of your story please do get in touch with Catriona at smallestthing@yahoo.com
  2. In 2016 we’ll be focusing on support for parents following neonatal care.
  3. 15,000! Before we hand in our petition in the spring we’re aiming to reach an amazing 15,000 signatures – with your help we can do it! If you haven’t already signed our petition to extend parental leave for families affected by premature birth please do and don’t forget to encourage friends and family to sign too!
  4. To shout about the Smallest Things, raising awareness of a journey that does not end at the NICU door, speaking to hundreds and thousands of people.
  5. Dads Do NICU too! In 2016 we’ll be including 11351121_1605702686352890_8034685534623854660_n (2)more stories about fathers of premature babies and their journeys through neonatal care.
  6. To provide a community space for Smallest Things supporters, professionals and parents on our Facebook page. Our Facebook profile is growing everyday and we hope to continue posting news, stories and information all with the aim of raising awareness.
  7. To take our petition to Parliament!
  8. To speak with health visiting teams, discussing corrected age and the psychological needs of families post NICU.
  9. More MPs! We’ll be speaking to many more MPs this year, asking them to champion the Smallest Things and needs of NICU parents in Parliament.
  10. To set up a national network of volunteers! 2015 was a great year for the Smallest Things, but to make 2016 even bigger we need your help! We will be launching our volunteer’s network in February… watch this space.

ST reception

Fading memories: A NICU World

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

smallest things

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

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

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

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

Smallest Things in 2015!

As we begin to set out our plans for 2016, make our New Year resolutions and look forward to what this year will bring, we reflect for a moment on what a year 2015 has been!

2015

Launched in June, our petition to extend statuary maternity leave has reached more than 11,000 signatures and has received national press coverage both in the papers and on the radio!

Our Facebook page has continued to be a hub for all things Smallest Things, with over three and a half thousand supporters reaching a wide audience every day – lets keep reaching thousands more in 2016!

On the blog, ‘Dads Do NICU’ was one of my personal favourites; highlighting the journeys taken by fathers and bringing to the foreground their caring role in NICU. Kangaroo cuddles and skin-to-skin with dads are some of my favourite pictures of 2015 and are worth another look!

Our most read piece, and by quite some way, continues to be ‘PTSD: The hidden cost of NICU’. If raising awareness of the lasting emotional impact of a premature birth is one of our aims, then this article is certainly helping to achieve that. Recent comments on our Facebook page, left by mothers years following premature birth, are a real eye-opener and sum up the vital need to raise awareness and the urgent need for more support for parents of premature babies. You can read their words and add your own here.

ST reception

Taking The Smallest Things to Parliament! In September Croydon North MP Steve Reed visited the Croydon University Hospital neonatal unit and is now championing the needs of premature parents in parliament. Speaking in a Westminster Hall debate for World Prematurity Day, Mr Reed raised The Smallest Things campaign to extend paid parental leave and highlight our 5 reasons why this change is needed. We were delighted when Health Minister Ben Gummer MP stated he would look into this very issue. Mr Reed also hosted a Smallest Things reception in Parliament and it was a great pleasure to meet many of you there. Mothers Ije and Sarah spoke movingly about their own experiences of premature birth and their ability to return to work once they were home. Sarah spoke moving about her twin girls Eva and Charlotte and their story remains a powerful reminder of why this campaign is so important.

The end of 2015 has ended on a high! With great surprise I was humbled to find myself alongside other amazing women long listed for the 2016 Tommy’s Baby Charity Mums Voice of the Year Award. It is a fantastic recognition of what The Smallest Things aims to do; giving parents a voice, an opportunity to share our experiences and to say loudly that the NICU journey does not end at the NICU door.

Saving perhaps the best til last! On the 30th December we had an opportunity to speak to millions of Radio 5 Live listeners as Sarah spoke about her beautiful daughters Eva and Charlotte and I explained the need to give families of babies born too soon more time through extended parental leave.

With your help and support we have made The Smallest Things matter in 2015 – thank you!

Catriona

radio 5 live

Sarah Miles and Catriona Ogilvy Radio 5 Live

 

Tommy’s Charity Awards 2016: Mum’s Voice Award

MumsVoiceAward

This afternoon I received an unexpected email with a lovely surprise… Tommy’s, the baby charity, had got in touch to tell me I have been longlisted for the 2016 Seraphine Mum’s Voice Award!

The Mum’s Voice Award celebrates mothers who have spoken out about their own experiences  and have given hope to others; and I am honoured (and truly surprised!) to be included alongside so many other remarkable and amazing voices.

The neonatal world can often feel small to parents, an isolating experience where conflicting emotions last long after NICU. Through my own story I have been raising awareness of a journey that does not end at the NICU door, highlighting the ongoing needs of parents, writing openly about Post Traumatic Stress Disorder and campaigning for a change to statutory maternity leave for mothers of babies born too soon.

I have been overwhelmed by the response to my Smallest Things site, not only when mothers tell me they no longer feel alone with their thoughts of loss, grief or guilt, but by the amazing response to my petition calling on Government to extend statuary maternity leave for preemie mums, which now has over 11,000 signatures (Please do sign if you haven’t done so already!!)

Being shortlisted for the Tommy’s Mums Voice Award would be an incredible opportunity to raise the profile of The Smallest Things further, to raise awareness of life after neonatal care and to push further for the changes needed.

If you would like to help me reach the shortlist, all you need to do is send an email to mumsvoice@tommys.org, with the subject line Smallest Things, along with a couple of sentences or so on why you think I should be shortlisted.

The closing date for emails is Wednesday December 23th, so please do spare a minute or two in amongst the Christmas wrapping to help the Smallest Things reach the Tommy’s Award Ceremony in March!

 

 

Top 10 of 2015!

top tenA huge thank you to everyone who has written, contributed, shared and read; each and everyone helping us to raise awareness in 2015!

So, here goes…. Our Top Ten most read posts of the last 12 months!

At 10. Our Story “In those first few days I was lost and empty; the emotional impact of leaving hospital without a baby in your arms is hard to describe…..” 

9. Starting School a year too soon “He continues to meet all his milestones, keeps up with his peers and fills me with pride – yet he will still start school a whole academic year too soon. He’s ready and he’s not ready.”

8. 30ml Mum  “Everything revolved around expressing. Was I doing something wrong? Why couldn’t I produce more? Other mums would enter the expressing room and fill bottle after bottle – I couldn’t even get half way.”

7. Too soon, Too early: This Family needs more time  “I felt conflicted and confused. I was grateful that she was well enough to come home, but I couldn’t help feeling cheated out of time and then felt guilty for feeling that way.”

6. Extend Maternity Leave for mothers of premature babies “…more than a quarter of my maternity leave was spent visiting my baby in hospital and according to Bliss, like me, 60 per cent of mothers felt their maternity leave was too short.”

5. Eva & Charlotte’s Story “While NCT groups up and down the country are meeting for coffee and talking about pooing and breastfeeding, NICU mums gather in expressing rooms to discuss breathing support, surgery and methods of tube-feeding. It’s like an alternative reality where life-or-death moments are discussed in the same way as nap routines.”

4. Shock, Trauma & Hope: A life changing journey through neonatal care “…This is the mark of a premmie mum. From nowhere, I was signed up and given lifelong membership to a club I never wanted to join, nor even imagined existed.”

3. Top Ten! | What not to say “At least you got to miss that really big stage”.

2. Longer mat leave for preemie mums: 5 Reasons Why “Mothers of babies born too soon face the agonising journey of leaving hospital without their baby day after day. Any NICU mum will tell you, there is a lot of watching and waiting in neonatal care – waiting for that first precious hold, usually days, sometimes weeks after their baby is born.”

smallest things

and finally, our most read post of 2015….

  1. Time to Talk: PTSD the hidden cost of NICU “Nothing can prepare you for parenthood, but you allow yourself to imagine the arrival of your baby; those first precious holds, taking them home to meet loved ones, the time together to grow and bond – and then suddenly everything you imagined is dramatically replaced with the alien and uncertain world of neonatal intensive care.”

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guest blogIf you’d like to write for The Smallest Things or share your story in 2016, then get in touch! Just email Catriona or send in your story (approx. 650 words) to smallestthings@yahoo.com

 

Notice! It’s not quite the end of 2015, and our Top Ten is subject to change as we near the New Year…Check back on midday 31st December 2015 for our final count down!

Home for Christmas

Evie was born early, 7 weeks to be exact. She was born with sepsis, it very nearly took her from us. Suddenly the new diagnoses of Down Syndrome didn’t matter, it didn’t scare me, I just wanted my baby to live.
Walking into NICU to meet my little girl two days after Evie was born, I felt like the earth was moving under me and that  time had suddenly slowed down; just beeps and my own heartbeat was all my ears were absorbing. I knew the nurse was speaking to me because I could see her, I just couldn’t work out what she was saying. We had already been taken into a room and told how sick she was; told that she was very critical and that we needed to prepare ourselves – what does that even mean? Time slowed after that!
Evie 1
There she was, the biggest girl in the room, all 5lb9oz of her (mainly fluid as she was really oedematous). I thought that meant she was the healthiest, I was wrong. In fact she was the poorliest child in the room, but something happened when I saw her, I refused to believe she wouldn’t get better, I had to be strong, so I was.
Evie had recieved a diagnoses of Down Syndrome, something that had the potential to send fear and uncertainty down the spine of even the strongest of person, not me. I just wanted her alive and healthy, she would have a great life, I would make sure of it. I believed that me, my husband and our children were the perfect candidates to ensure her future happiness and for us Down Syndrome would never define her, it would just be a part of her.
Evie
Beep beep beep… 13 months down the line I still hear those noises. The sound of reassurance mixed with the sound of fear.
NICU is an amazing place filled with amazing people. It’s tiring and draining and the amount of learning achieved is phenomenal; about the machines, about conditions, your baby, the staff…everyday was like attending a conference, medical ward rounds every morning where we felt valued, where we were asked for input and made to feel involved in a process that was so scary, when it could have been so easy to feel out of control.
Evie
On day 4, Evie came off her ventilator, she was breathing on her own. On day 6 there was a marked difference in her CRP levels (infection markers), they were coming down. The antibiotics were working, she was getting better. It was hard work and continuous care where I never left my daughters side. She went on to have a further diagnoses of a heart condition that would require surgery, but Evie came home after six weeks in hospital. She was on a home feeding tube and oxygen, but she came home, the day before Christmas eve, and she went from strength to strength.
Evie
Evie had open heart surgery at 4 and a half months old, another scary time but it worked and her heart was fixed. She came off the oxygen and came off the feeding tube and continued to grow stronger. We are doing our best to give her the amazing life we promised and the amazing life our amazing girl deserves.
Nothing could have prepared me for being a NICU mum; the noises, the emotions and the feelings will stay in my memory for ever.
I would like to thank the staff who helped keep Evie alive, the most awe inspiring and wonderful people I have ever had the pleasure of meeting. You gave us hope, you gave us inspiration and most importantly you gave us Evie.
xx Beating heartxx
Evie   Evie

The hidden cost of NICU | Write to your MP today!

On Wednesday 9th December MPs will take part in an opposition day debate in the House of Commons to discuss Mental Health.

The Smallest Things campaigns regularly for more awareness and better access to psychological support following the premature birth of a baby and we know how important this issue is to our supporters.

I have written to my local MP, asking them to attend to take part in the debate and hope you will do the same.

Please feel free to use any part of the letter below.

You can find how to contact your local MP by clicking and entering your Postcode here.

 Dear Mr Reed MP,

I am writing to ask you to attend the forthcoming opposition day debate on mental health with regards to PTSD, the hidden cost of NICU.

When my son was born we weren’t ready. He wasn’t ready.

Born 10 weeks early, he spent an anxious 8 weeks in neonatal intensive care; a stressful environment where parents following the traumatic birth of their babies watch over incubators day-by-day. It is an uncertain and alien world full of breathing machines and beeping monitors. It is a medical and clinical world where you find life at its most fragile.

Not surprisingly mothers of babies born too soon there is a greater risk of post natal depression, with as many as 70% report symptoms of post traumatic stress and anxiety in the aftermath of a premature birth.

Yet in their 2015 baby report, Bliss reveal that 41% of neonatal units have no access to a trained mental health worker and that nearly a third of units offer no psychological support at all.

Parents of some of the smallest and fragile babies need more support, not only during their hospital stay, but also in the months and years that follow.

I, and parents like me, would be grateful if you could highlight the very specific, but often unmet needs of families of premature babies in the forthcoming opposition day debate on Mental Health – Wednesday 9th December.

For more information, please see PTSD: The Hidden Cost of NICU

With best wishes,

Catriona

ST reception

 

Eva & Charlotte’s story

GetAttachmentOn Monday 30th November at our Westminster Reception, Sarah Miles, mum to Eva and Charlotte, spoke bravely about their journey through neonatal care. Her words were powerful and moving and captured the reasons why parents of babies born too soon need more time.

Sarah shares her words with us here….

The Smallest Things reception – Eva & Charlotte’s story

“Hello. I’m here as a supporter of the campaign to extend maternity leave and as a mum. And probably the best way to explain why I’m supporting this campaign is to tell you the story of two VERY little girls.

In 2011 I found out I was pregnant. It wasn’t a surprise because, like most things in my life, it was carefully planned. Working in the media there’s not a great deal of job security and I’d strategically manoeuvred myself into a permanent role after years of freelancing in order to get some paid maternity leave and – most importantly for me – a job to return to.

Yet life doesn’t always follow your best-laid plans, as many of us in this room can attest. At our 12-week scan we were speechless yet delighted to find out we were expecting identical twins. And, with the benefit of hindsight, naive to all the issues this can bring. We were scanned fortnightly and at 22 weeks were told I had too much amniotic fluid. At 25 weeks I had bleeding and was admitted for 10 days’ observation. At 28 weeks, the day before I was due to have amnio drainage and 12 weeks early, my waters broke and I gave birth to two beautiful girls by emergency c-section. Eva weighed 980g (2lb 2oz) and Charlotte tipped the scales at 1.1kg (2lb 8oz). They cried as they emerged – a good sign – but neither could breathe by themselves, let alone feed orally, maintain their own body temperatures or fight off infection and they were resuscitated before being whisked away in incubators to the neonatal unit seconds after delivery.

And so began our adventure through NICU. While in recovery, we were told that Eva had a condition called TOF/OA – trachea-oesophageal fistula/oesophageal atresia – which basically meant her mouth wasn’t connected to her stomach and she couldn’t swallow. Suddenly my excess amniotic fluid made sense. And life-threateningly, her oesophagus was connected to her trachea so fluid could enter her lungs. She was transferred from Queen Charlotte’s Hospital in Hammersmith to Chelsea & Westminster Hospital for immediate surgery, while I stayed behind with Charlotte in NICU for five excruciating days. Eva was given a 50/50 chance of surviving the operation.  That was the first – and certainly not the last – time I begged, pleaded and bargained with the universe to let her survive. There’s a lot of that in neonatal units: willing, wishing and wanting your baby to make it, yet having no power to affect the outcome. It’s torturous.

But she made it. And on day 5 Charlotte was transferred to the same hospital – but never the same ward – to make our lives just about bearable. Expressing eight times a day, reading medical papers, hanging around in corridors for separate ward rounds (and hoping the two didn’t coincide), sitting by incubators, watching numbers on screens, reading obs charts, listening to bleeping machinery….. all this quickly became our normal daily routine. Learning to change a nappy through the portholes of an incubator, gingerly holding twig-like legs up without disturbing wires…. we learnt how to do our babies’ “cares” in a way that was far from normal. It was two weeks before I could have my first precious cuddle with Eva, and even then I was terrified and spent the whole time staring at the numbers on the monitor. How could this tiny baby the size of her daddy’s hand survive and grow?

Sarah Miles

Within a week my partner was back at work and this new routine was one I did alone. Dashing between intensive care, high-dependency and the expressing room – experiencing the highs of a wonderful cuddles and the lows of infections, blood transfusions, cannulas and backwards steps to ventilation. For most new mums, the sound of their baby crying is cause for concern, for NICU mums it’s a sign of positivity – growing lungs, healthy reactions.  With your baby in a plastic box, or as somebody wonderfully called it “a womb with a view”, you’re denied the simple pleasures of new parenthood. Picking your baby up, changing their nappy, feeding them when they’re hungry – all of these things are done to a schedule dictated by a doctor and implemented by a nurse who you have to ask permission from. You’re robbed of those precious new first experiences while in a constant state of fear your baby might die. I was desperate to hold my girls but terrified it might hurt them or cause distress.  ‘It doesn’t matter,’ you tell yourself, ‘As long as they get better and grow. They’ll come home and then we will start properly. Like it should have been. This is just a nightmare to get through and then we can start again at the beginning.’

When Charlotte and Eva were allowed to start wearing clothes, it was another baby step towards ‘normality’. Us NICU mums crave normality – we’d roll our eyes and hold our noses at explosive pooey nappies and yet ANOTHER outfit change yet inwardly delight and revel in it. This is what normal newborns do! We’re getting closer. And when Charlotte was moved from an incubator to an open cot I was literally walking on air. ‘You mean I can just lean over and touch her? Without asking?’  While in the next room Eva was being put on yet more antibiotics for a suspected bowel infection and I wasn’t allowed to touch her because she was too unstable. Being told you can’t touch your baby is one of the worst things you can say to a parent. But of course you want what’s best, and if that means depriving yourself of bonding hugs, then so be it.

It was the nurses and other mums on the unit that got me through the day-to-day of NICU life. We called Eva and Charlotte’s nurses her ‘aunties’ (as none of their real aunties were able to visit) and the friendships I made with the other mums will last a lifetime. We supported each other through bad times and celebrated the good times – the baby steps forwards – and when it was finally time for a baby to go home we would all celebrate. While NCT groups up and down the country are meeting for coffee and talking about pooing and breastfeeding, NICU mums gather in expressing rooms to discuss breathing support, surgery and methods of tube-feeding. It’s like an alternative reality where life-or-death moments are discussed in the same way as nap routines. Put simply: normal mums worry about their baby sleeping through the night, NICU mums worry about their baby surviving the night.

DSCF3478

After 79 long days, 5 days before my due date, Charlotte finally came home, weighing 2.6kg (5lbs 5oz) and behaving pretty much like a newborn. But at the same time Eva was struggling to recover from a failed operation to fix her oesophagus. Ecstasy and agony simultaneously. Despite having one daughter at home my life got harder, rather than easier because infection policy dictated that I couldn’t bring Charlotte back onto the unit. So I was forced to leave my fragile ‘newborn’ baby every day, who I had worked so hard to breastfeed, to visit my arguably more fragile baby in hospital. It was unbearable. I hired a nanny to look after Charlotte, my mum helped out and my partner Dave swapped his working Friday for a working Saturday so that friends could take over. Dave took one week of paternity leave when Charlotte came home and one week of holiday. Because we had to divide ourselves between home and hospital we rarely saw each other and when we did we were too exhausted to communicate. There were no shared joys of our new babies – just handovers of information.

Eva needed to reach a certain weight before they’d operate again so we were in it for the long-haul. But she was thriving and her smile when I arrived every day made it all worthwhile. She loved watching the jungle animals rotate on her mobile and listening to music from toys. Along with the nurses we devised a daily routine that included sitting up in her bouncy chair watching what was going on.

In total Eva was in hospital for 197 days before she came home to die, having suffered brain damage during her final operation. She died on 23 February, Day 201, aged six and a half months. Her hospital stay had been one day longer than my pregnancy.

I don’t have the words to describe the time that followed, apart from to say that Charlotte gave me a reason to keep going. She was, and still is, my salvation.

Three and a bit months later my boss took me out for dinner and asked if I was planning to return in August, when my year’s maternity was up. I’d had six weeks of 90percent pay and then statutory pay until nine months. I knew I wasn’t emotionally ready so I asked for more time – unpaid leave – but they said no and sent me a letter to sign saying I was resigning. As I signed that letter part of me knew that I was signing away the career I’d spent 15 years working hard to build up.

A couple of months later my partner Dave was made redundant. We knew we were going to have to do some significant belt-tightening to live on one salary but to live on nothing? So I accepted a month’s project work at my old company for around £20K per year less than the job I’d just resigned from. Thankfully he found another job and I didn’t stay on. When Charlotte was 18 months old I started doing a little bit of self-employed freelance work from home while she went to nursery two mornings a week. Well I say, every week but I’d guess she was off about half the time with chest infections so I wasn’t able to commit to much work.

Fast forward through my second pregnancy (which I wish I could) – this time a full-term healthy girl called Iris – and self-employed mat leave to today, and I’m still sporadically freelancing from home, which doesn’t really work with childcare commitments and school runs. So I’m looking for a part-time permanent job but having no luck. Part-time editors are few and far between, and often are only those that have negotiated hours when they returned from maternity leave. Something I was very aware of before I got pregnant. But as I said before, the best-laid plans don’t always pan out…

If I’d have had more time after Charlotte came home and Eva died, I might have felt strong enough to negotiate a return to work on my terms and not be in this position four years later. But because I felt I had no choice but to resign, here I am. And while we’re by no means queuing at the food bank just yet, it has had a huge effect on our family and so far has prevented us from buying our first home together.

Time spent in NICU is simply not maternity leave. It’s a nightmarish version of ‘what should have been’ where doctors are trying to replicate the conditions of your womb because your baby or babies should still be in there. Every year, we celebrate Charlotte’s Homecoming Day – 79 days after my twins were born and five days before they were due, because this is the day she truly became ‘ours’. The first day we looked after her independently, the first day she slept in her own moses basket, the first day she was breastfed on our sofa, the first day her nappy was changed on her changing mat. It was, in many ways, the day she was born. Yet it was three months after my maternity leave had started and three months before her sister would leave the hospital.  And that’s simply not fair.”

 

If like Sarah you believe that familes of babies born too soon need more time, please do sign our PETITION to extend parental leave for parents of premature babies – SIGN NOW!

More time; my maternity leave

Even years later the unfairness can still hurt, often catching me by surprise.

The what ifs?
What if we’d had more time; more time to establish breastfeeding?
What if we’d had more time; more time to protect his little lungs from the bugs and colds of childcare.
What if we’d had more time; more time together, more time to bond, more time to feel like a mother.
What if our family had had more time; more time to recover from the trauma of neonatal intensive care.
What if I’d had more time; more time to realise that I needed more time.

For many parents of premature babies there is little warning of the chaotic and uncertain world they suddenly find themselves in, and overnight statutory maternity leave has begun.
Parents to a precious baby, perhaps a ‘miracle’ or ‘fighter’, mothers and fathers grapple with what lies before and ahead of them. Parents, but parents to a baby they can not hold. Parents, but parents to a baby who will spend weeks, if not months, in hospital. Parents, but each day parents to a baby to whom they must whisper goodbye.

Maternity leave: a time for mothering and nurturing. A time for mother and baby to grow and develop. A time for mothers to support each other through sleepless nights, first smiles, feeding and weaning. A time to be and to become ‘mum’.

Neonatal intensive care: watching, waiting, breathing machines and monitors. Expressing rooms, uncertainly, hope and prayers. The torture and heartbreak of leaving such a fragile, tiny baby each day – and yet, this is your maternity leave.

Neonatal intensive care: wires, alarms, tiny and smaller. Fragile, life, loss and grief. The trauma and guilt at leaving such a fragile, tiny baby each day – and yet, this is your maternity leave.

Yes, even years later the unfairness can still hurt, often catching me by surprise.
Weeks and months in neonatal intensive care – that was my maternity leave.

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The Smallest Things campaigns for longer maternity for mothers of premature babies. If you agree, please SIGN our PETITION now!