Premature Birth Education Survey

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

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

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

My Top 5 Pieces of Advice for Other NICU Dads

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

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

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

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

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

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

Written by James Farina

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

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

25 Weeks Gestation – Our Beautiful Little Lady

Two years ago I woke early with period type pains.

I was 25+5 weeks pregnant.

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

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

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

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

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

A tiny baby, far away from home

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

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

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

Kangaroo Cuddles and our Extended Family

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

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

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

The worry of being at home

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

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

Isla Rose

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

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

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

Neonatal Care: Shattered Dreams and Precious Moments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Read Government Minister Margot James’ statement below:

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

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

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

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

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

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

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

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

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

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

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

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

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

End .

A very different Mother’s Day

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

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

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

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

And now he was there, fighting for his life.

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

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

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

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

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

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

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

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

 

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

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

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

Would like to help The Smallest Things raise awareness of neonatal care? Like what you’ve read? The please use the Facebook and Twitter buttons to SHARE this post!

 

 

 

 

My first Mothers’ Day: in NICU

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

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

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

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

Not how it was meant to be

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

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

A day of mixed emotions

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

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

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

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

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

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

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

Struggling to connect

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

‘Seeing’ my baby for the first time

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

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

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

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

Today, aged one, Serena is healthy and happy

 

 

Normality After Neonatal Care

There is normality after NICU I promise… 

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

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

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

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

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

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

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

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

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

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

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

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

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

But.. he did start to grow. 

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

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

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

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

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

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

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

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

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

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

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

Our Miracle Story

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

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

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

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

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

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

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

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

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

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

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

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

With special thanks to Sara Hibbs for sharing her story. 

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

Sara

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Mum writes story for her Premature Baby 

Nicholas Charles Johnson – This is Your Story

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Why we Should Make #TimeToTalk Following Premature Birth 

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


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

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

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

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

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


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

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

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

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

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

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

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

Please hit the Facebook and Twitter buttons to SHARE and help start a conversation today. 

Twin to Twin Transfusion Syndrome – The Most Traumatic Experience of my Life

Lynsay got in touch with The Smallest Things after her twin boys were born premature following Twin to Twin Transfusion Syndrome (TTTS). 

“I’ve spent a long time wondering how I can raise some awareness, I really want to get something positive out this horrendous experience. That is why I want to share our story….”

Lynsay starts by telling us a bit about her pregnancy:

Unfortunately, I didn’t have a very good pregnancy. Initially, other than being extremely tired and showing quite early everything was fine. We went for our first scan at 11 + 3 and it was there we found out the shocking news we were expecting twins! After the scan we announced our pregnancy to everyone but that same night at around 3am I woke up bleeding.

An ambulance took me to hospital where I was monitored for a few hours. We were told that if I was having a miscarriage there was nothing they could do. I was heartbroken. It was New Year’s Day and I couldn’t get a scan until the Monday. It was the worst few days of my life. Luckily the babies were fine, but I continued to bleed on and off until 16 weeks. As you can imagine it was incredibly stressful. 

Twin to Twin Transfusion:

At 20 weeks we were diagnosed with stage 1 twin to twin transfusion syndrome. Not many people know what TTTS is, I have to admit I didn’t. TTTS is a disease of the placenta that affects around 10% of identical twin pregnancies. There is a donor twin (Noah) and a recipient twin (Harley). The transfusion causes the donor twin to have decreased blood volume. This in turn leads to slower growth and little to no amniotic fluid. 

Initially I thought this meant that only the donor twin was at risk but actually the condition can be fatal for both twins. The recipient twin becomes overloaded with blood which then puts a strain on their heart and can lead to heart failure. There are 5 stages of TTTS, stage 3 and upwards are the danger points with stage 5 being the death of one or both babies. It’s a truly awful disease that takes many babies.  

Weekly Scans:

From being diagnosed we were scanned weekly and at 23 weeks we were given the news we had been dreading – it was now at stage 3.

We had a few options; we could wait it out, do sacrificial treatment or be referred to another hospital for laser treatment. After a lot of agonising and research we decided to go with laser. We travelled the 200 miles to Birmingham hospital where I was told it wasn’t stage 3, it was only stage 1 and they couldn’t do laser anyway because of the position of my placenta. We left feeling elated, but I was still anxious. 

Our consultant back home though still believed it was stage 3 and offered sacrificial treatment again, we refused. The best we could hope for was I’d make it to 28 weeks when I would have a planned c section. 

“… the most traumatic experience of my life”

Unfortunately, at 27 + 3 I discovered blood when I went to the toilet. I was also leaking what I believe to be my waters. I went to hospital where they monitored me over night. The next afternoon I was taken for a scan and they discovered the bigger twin was in distress. I was rushed straight to theatre for an emergency c-section and it was the most traumatic experience of my life.


On the 21st April Harley was born weighing 2lb 2 and his twin Noah followed a minute later weighing 1lb 6. There were no cries. They worked on them for around 5 minutes (felt like forever) before we were told they were alive but they had both been resuscitated.

I like to think Harley saved his brothers life; although it was him showing distress that caused them to give me the emcs, Noah would not of survived much longer inside of me.

Neonatal Intensive Care:

“I can’t explain what that’s like, to not even remember the first time you saw the babies you so desperately wanted and loved.”


The boys were whisked off to NICU while I was being stitched up and taken to the recovery room. Josh went with the boys which I was pleased about. I wanted with every part of me to get up and go and see my babies, but obviously I couldn’t. I can’t even say how long it was until Josh came back with an update, but it felt like an age.

It was around 5 hours before I finally got to see them and to be honest I don’t even remember it – shock, the drugs or maybe a combination of the two? I know I was wheeled there in my bed, but that’s pretty much it. I can’t explain what that’s like, to not even remember the first time you saw the babies you so desperately wanted and loved.

The true extent of how bad it was didn’t hit me until the next day, which also happened to be my birthday. It was when I saw the boys for the first time whilst standing up out of my wheelchair. Looking down on them in their incubators it hit me how small they were and all I could think was how will they ever survive this? Noah’s eyes weren’t even open yet, still fused together.  

The consultant came to my room and told us that Noah would most probably die, his lungs just couldn’t sustain his tiny body. In that moment my heart broke into a million pieces. I had twins, I had given birth to two babies, I loved them, I had to leave that hospital with both of them. I found out much later that Josh had actually gone to their consultant and begged him not to let Noah die on my birthday. It reduces me to tears every time I think of that.

A Rocky Road:

It was a very difficult journey and a rocky road but Harley did extremely well and came home from NICU after 7 weeks. Noah was in hospital for more than 6 months mainly due to his lungs along with a few other issues.


We had always been told if he survived he would come home on oxygen but he defied all the odds and on the 29th October 2016 came home and without any oxygen! He had been dependant on some kind of breathing support right up until a week before discharge. 

Blessed – A Family of Four:

I know we are so incredibly blessed that they made it and we are now a family of FOUR.


On the whole the boys are doing well; obviously they are still affected by their prematurity and the TTTS, and Noah is even further behind in milestones due to his long hospital stay – but I want our story to give hope other families. 

TTTS can be a devastating and traumatic diagnosis, with the huge amount of uncertainty that comes with it. I hope through our story we can raise awareness and offer hope and support to other families. 

Lynsay 

With thanks to Lynsay Fletcher for sharing her story – if you have a story to share contact The Smallest Things at smallestthings@yahoo.org 

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The Highs and Lows of Neonatal Care: The Story of Twins Felicity & Scarlett

We found out we were expecting identical twins at our first scan. We were sat down in the hospital and told all about how twin pregnancies, especially identical twins, are much higher risk, and how I’d deliver around 36 weeks. I was scanned every two weeks during the pregnancy, and seen by a consultant at those appointments too. Around 23/24 weeks, I had a pre-eclampsia scare and spent 7 hours on the delivery suite getting my blood pressure down as well as steroid injections to help the babies lungs in case delivery was needed. 

Around the same time it was noticed that Twin 2 had Absent EDF (End Diastolic Flow) through her umbilical cord. We went onto monitoring every other day and I was told to pack my hospital bag, just in case…

On 15th April 2016, I was booked in to have a Glucose Tolerance Test (GTT), as well as one of my regular scans. I was 26 weeks and 1 day pregnant.

After the scan the sonographer said she was popping to see the consultant as per usual and I went back to the midwives to get my blood pressure checked. Instead of the midwife though, one of the registrars came to see me. She explained that Twin 2’s Absent EDF had now reversed, meaning that there was an issue with the flow of blood through my placenta.  It’s classed as a very severe condition and can often result in fatalities.

The registrar explained that they needed to deliver the babies as soon as possible, because they couldn’t be sure that the twins would survive if the blood flow was compromised. The next few hours flew past in a blur. I rang my husband at work and ask him to come to the hospital, but because of the twins gestation I couldn’t deliver at my local hospital. Instead the hospital had to find us two intensive care incubators at a level 3 NICUs in the North West. Luckily, there were 2 incubators free at Royal Preston Hospital, which was about 17 miles away. I was transferred by ambulance, blues and twos screeching through the town and down the motorway.

I was booked in to have a c-section that evening. An obstetrician came to see us to let us know that we didn’t have to deliver that day, that I could stay in hospital for the weekend, be monitored and to give the babies a few more days. However, it was a very distinct possibility that we could lose Twin 2, or even both twins over the weekend. We were completely unprepared for this news – how could we wait to see if one, or both, of our girls passed away? We decided to go ahead with delivery. 

The girls were so small and poorly, I didn’t get to hold them when they were born. They were put in small plastic bags to conserve heat and skin moisture, then intubated in theatre. All I saw was a glimpse of a tiny face swaddled in blankets as the travel incubator whizzed past me. I didn’t even see Twin 2 being taken up to the unit. We didn’t see the girls for around 7 hours after that. They were very poorly and the NICU staff needed time to stabilise them.


When we did see the girls, I was wheeled up on my hospital bed into the Intensive Care section of the NICU. There they were! Tiny little scraps in huge incubators, with shiny, almost translucent skin, and their eyelids still fused together. Tiny little nappies on, which were still too big, and huge ventilator tubes in their mouths. They had tubes going into their umbilical cords (UAC), as well as PICC lines. Their incubators were next to banks of syringe drivers and monitors. 
Twin 1 – Felicity Rose, weighed 1lb 11.5oz; and Twin 2 – Scarlett Grace, weighed 1lb 7oz. Felicity was very, very white and pale – she was having lots of blood transfusions, as she had low haemoglobin. Scarlett had an excess of haemoglobin, stolen from Felicity, and was dark red. She was under special blue lights, to help her body process and break down the excess haemoglobin. 


Because they were so early, their lungs weren’t formed enough or strong enough to breathe for themselves. They had been given several doses of a drug to help their lungs work and were being mechanically ventilated, on high levels of oxygen. They were on morphine, special liquid nutrition, antibiotics, diuretics, blood thinners and more.

They were too poorly to be held, too poorly for milk and had very little body fat. Their incubators were hot and humid – condensation dripping down the sides. They had a nurse each to look after them – skilled and compassionate, who made up their little doughnut-shaped beds with infinite care, picking the softest sheets; and apologised to the babies every time they took blood or had to move them. Nurses who handed me tissue after tissue to mop my tears up once I’d changed their first nappy through the incubator ports. Nurses who explained the technical things to us, and encouraged us to talk to the girls through the incubators; who chivvied us to eat properly and take a break from the darkened rooms. 

When we were told that Scarlett was just too poorly and was probably not going to make it the nurses were there for us. They were at our sides when we started to give the girls my expressed breastmilk – 0.5ml at a time. We got to hold Felicity after 2 weeks and Scarlett after 3 weeks, the nurses gently put the girls down my vest and arranged the ventilator tubes. They were the ones who called us at 4am to ask us to come in because the girls had taken a downturn, or had needed reintubation. When Scarlett had a pneumothorax, they explained it in terms we could understand; when she needed a different type of ventilation (oscillation), they told us encouraging stories of survival. They engineered our first double cuddles – we held a tiny twin each, and then a few weeks later, I held both girls together for the first time since they had been born.


We spent 16 weeks in NICU (my ‘full pay’ part of maternity pay finished before the girls were classed as ‘term’ and before we got to take them home) – each day spending 10 to 12 hours in hospital, to do nappy changes and tube feeds, to have the girls weighed, to wait for doctors rounds. For 12 of those 16 weeks, I expressed milk every 3 hours of every single day. I’d set alarms for midnight, 3am, 6am to wake up and express; taking my milk into the unit in a coolbag. I’d express by the incubators or in the ‘expressing room’ with other mums, all of us with our own stories. You could tell who was a new mum on the unit – unsure, shy, confused by the equipment, worried that she’d only pumped 20ml. For us long-termers, we joked about expressing – no shyness for us! We asked about each other’s babies – were they off ventilation? Taking more milk? Had they put weight on? It was like a mum and baby group, but with no babies. We left the unit every night with empty arms, trying to avoid the normal families taking home normal babies.

I remember driving home and thinking “This isn’t how maternity leave should be. I should be going to baby massage and sensory groups, not waiting for doctor’s rounds and researching the use of steroids on pre-term babies.”

The girls made slow progression. It was often one step forward and two back. Weight gain was paramount, and we celebrated every gram gained. They needed 2 courses of steroids to assist their breathing, to help transition them to the lower levels of breathing support. They were fully ventilated for 4 weeks. At 8 weeks old, Felicity got an infection and almost ended up back on the ventilator. Both girls tested positive for MRSA and we spent weeks in an isolation room on the unit, so that it wasn’t passed to other babies. We hit their due date when they were 97 days old; and on their 100th day in NICU, the nurses brought us a cake and we had a little party.

In August 2016, (16 weeks old, 2 corrected) the girls were moved to the Paediatric Unit of our local hospital for transitional care. They were around 3kg each. We had to have oxygen installed at home for them both before we could bring them home, and they had to be weaned off the steroids, diuretics and the sodium that they were still on. At 18 weeks old (4 weeks corrected) we were finally able to bring the girls home. 


We still see the Neonatal Outreach Team twice a week at home to help wean the girls off their oxygen. We have appointments at 3 different hospitals to deal with various issues they have.

They are still tiny. At 9 months old (6 months corrected) they are not quite 12lbs yet. They are in 0-3 month baby clothes and are on the 0.4th percentile of weight for their corrected age.


I’m now faced with thinking about returning to work after their first birthday, when it’s the last thing I want to do. By April, they should be off oxygen (by a few weeks), but will still be small – around the 14/15lb mark. Whilst technically they’ll be a year old, developmentally it’ll be closer to 8/9 months. 

I feel like I’ve been robbed of my time with them. I spent the first quarter of their lives in hospital with them, and now  home I spend so much of my time doing medical related things for them, like checking and weaning oxygen, giving medication, attending appointments, or having visits at home from various teams. A NICU start is just that, the start – our journey continues….

With thanks to mum Shelley Watson for sharing her story. 

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Premature Birth – Through an Obstetricians Eyes

Shocked, she can’t believe it. “I am only 26 weeks pregnant” she pleads. The husband is sitting beside her, their hands gripped together. He asks if anything can be done to stop the labour. No. Tears. Sad tears and fear.A busy flurry of activity continues outside the room. The midwife draws up the drugs; steroids, atosiban, benzyl penicillin, magnesium sulphate.

Phone calls are made, everyone is aware and ready. If there is no cot space in NICU, a doctor would call every neonatal unit. The search would start local and then extend across the country. The baby today will be lucky, there is a cot waiting for him upstairs, he won’t need to be transferred to another hospital.

A grey cannula goes into her hand. The drugs are explained but mums’ mind is elsewhere. Do anything, she thinks, just save my baby.

The neonatal team arrive on the ward. There are hushed conversations outside the room. Steroids? How many weeks? What’s the weight? The team then enter and speak to the couple..50%, 10%, 25%..Her mind still isn’t there, she can’t get her head around it all. Then they mention cerebral palsy.  

The labour becomes more established and delivery seems imminent. The doctor is at the bottom of the bed. Waiting. The neonatal team are poised in the corner of the room.


The baby arrives and delivered into a plastic bag to keep him warm. His tiny body fills just one hand as he is passed to the neonatal team. The clock is switched on, they are working against it now. Get an airway, keep his heart going. Surrounding his tiny body they work together to save him. His destiny if born a term baby is no more. His new future as a prem hangs.

Behind them are the couple. They haven’t seen him yet, their son. They don’t want to ask any questions yet. It might be too distracting. It might be bad news.
The incubator arrives to take their son to NICU. Covered in lines and breathing tubes they catch a glimpse of him before he is wheeled away.

The room turns from hectic swarm to empty quietness. The couple are too shocked to cry. What just happened?

A knock on the door disturbs the silence.

A trolley noisily is thrust into the room. A big smile on her face.

“Tea and toast Mummy?”

Preterm birth affects 10% of pregnancies and can happen to anyone. This could have been your story but in fact its mine.


I am an obstetrician and a prem mum, our son was born at 26 weeks.

It was a harrowing experience that continues long after the birth. We have been very lucky. Our son is now 4 years old, loves school and being a big brother.
Going back to work in obstetrics after mat leave, I became increasingly frustrated when mums presented in preterm labour as there is nothing we can do to stop the inevitable, a prem baby. I therefore decided to get involved with research as without progress in this field, mums will continue to have babies born early.


For the last 18 months I have swapped my scrubs for a lab coat and working towards a PhD in preterm birth. Hopefully with continued progress in this area, scientists and doctors will be able to discover what causes preterm birth and we can prevent it.


The Smallest Things campaign has been incredible; the following it has gained and the awareness it has created about premature birth is truly inspiring. It makes me really believe that together we can all really make a difference.

I would like to come from a different angle and wanted to let you know ways in which it is possible to help in the world of prematurity research. There are many ways in which you can help:

– Join a preterm birth PPI group (patient/parent group that advise scientists and clinicians on future and current research projects) http://www.ptbnetwork.co.uk/ppi/ has contact details for three groups but there are more all around UK.

– If you do decide to get pregnant again, join a preterm birth research study if offered

– Continue to raise awareness of preterm birth by talking about your experiences and sharing your stories

– Support a charity that funds preterm birth research eg Tommys, Borne or Genesis Research Trust.

I am doing the London Marathon for Genesis Research Trust. This is a very worthy charity that supports preterm birth research carried by Imperial College which is one of the UK’s leading groups in this field. If you could sponsor me that would be very gratefully appreciated!

#26milesfor26weeks


 

 

Father of Premature Twins Says Mums Need Their Support Too

As I entered the neonatal unit on December 12 2015 for the first time, I was numb.


My children – Isabelle and Jack – had just been born at 27+5 weeks and the sense of urgency within the room was clear. Doctors, nurses and other medical staff crowded around them, performing all the necessary tests to gage what was going on within their tiny bodies.

I just wanted to do something to help – anything at all – but I was helpless and stood back as X-Rays were taken and lines were fed in to get vital medicines into them.

My mind was focussed purely on them but I was forgetting someone just as important – my partner.

On November 1 at just 21+6 weeks pregnant the waters to the bottom baby (Isabelle) ruptured and she was rushed into hospital and placed on a ward.

Everybody expected her to give birth to two still born babies within hours but somehow she defied huge odds and kept them safe inside for almost 6 weeks – a time when doctors could step in and try to save them.

At 9.15am on December 12 everything was fine but by 9.35am she had delivered. A cord prolapse on the ward led to a full scale medical emergency. Rushed to theatre by a huge team, she was given a general anaesthetic and the twins were delivered.

Once she came round, I can only imagine the pain she was in after such a traumatic ordeal.

But there I was, thinking only of the twins and somehow unable to grasp on to her pain.

Looking back I feel full of guilt that I didn’t spend more time with her on the day of their birth, instead flitting between the neonatal unit and recovery.

In truth my mind was in pieces – there was no logical thought process going on but as the days progressed we both began to get hold of our emotions a little and take stock of the situation.

For me, it was all about concentrating on getting these little miracles well and out of hospital.


In the background, my partner was struggling with the physical and mental effects of the ordeal and in hindsight, I didn’t pay enough attention to that. All I needed to do was give her a hug, go for a drink in the café away from the immediate chaos or something to take her mind elsewhere for five minutes every now and then.

Once the twins were home in late February, I hoped we could start normal family life. I went back to work and my partner was at home on maternity leave. Having been surrounded by monitors giving us every medical stat in an instant, it was a frightening prospect having to go it alone without the technology, but I didn’t realise just how terrifying it was for her being home alone.

At times she struggled and seemed on the edge mentally. I felt more mentally intact but then again, I was back at work, getting normality back – she was doing anything other than getting normality.

Her mum would be a regular visitor and that support helped but a little friction built with my annoyance that the mother-in-law to be was almost living with us. She was a great help and did absolutely nothing wrong but I wanted it to be our family home.

Again, in hindsight I realise she needed that support and sure enough within a few months she was standing on her own two feet and going it alone during the day.

I guess what my story maybe shows is that men just aren’t fully in touch with their partners after a premature birth. Yes, we all feel the emotional side but men don’t feel or experience the physical trauma and that understandably leaves memories that are hard to banish.

There’s also the guilt that mothers can feel. The feeling that their bodies let their babies down. We all know that isn’t the case and that nature just handed out one of its harshest cards but it’s something that us men have to try and get our heads around.


If I was to speak to myself back then I would say ‘take a bullet’ more often. On days when she said things that maybe sounded irrational to me, go with it and genuinely take her points on board.
Whenever she needed a little support, try and put it in place where possible. Whether that is by having the odd day of leave from work, getting a relative or friend over or looking for a group where she could liaise with other mums.

It’s not easy being the dad of a premature baby, but I think we have to remember that mum has been through the mill in many other ways and they deserve just as much love and attention as our precious little ones.

With special thanks for to Tony for sharing his story. 

 

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Meal Time with a Premature Baby – Weaning, Seating & Spoons! 

Feeding a preemie baby doesn’t stop being a bit different when you leave hospital. Weaning is one of the few things (immunisations are another) that are done on actual rather than corrected age. So, despite only having been home with my 24 weeker for about 6 weeks, and only really just feeling like we were finding some semblance of routine, we were advised to start her on solids.


First problem, what on earth was she going to sit in? 

Unlike a lot of other 6 month old babies, she wasn’t even trying to sit up, let alone be ‘high chair ready’. The answer for us was a good old fashioned bouncy chair, with occasional 5 minute sessions in a Mamas and Papas Snug seat wedged in with a blanket!

Then came the spoon problem, most weaning spoons were just huge compared to Sophie’s tiny little mouth! Fortunately, I had some Boots ones that I’d used for my son 4 years earlier that were just about small enough.

Eating out was an experience – both in logistics and in being on public display. People seemed to think it was fine to remark on how come such a small baby was having solids, usually to whoever they were with, but once actually to me. To be honest, I got a bit used to that. 

Sophie is on home oxygen therapy and the tubes were very often a talking point for complete strangers. On the plus side I think that the tubes prevented a lot of the unwanted touching that preemie mummies often struggle with. As for the logistics, I found that a fabric highchair that ties over the back of a chair was good when it wasn’t possible to feed her in her car seat. Once she was in the buggy, I could feed her in there, but when we started weaning she still fitted in the carrycot and I was getting my monies worth!

Lumps….don’t even think too hard about baby led weaning a preemie! Whilst her tummy was ready for solids, her throat and chewing couldn’t cope with even the smallest lump. Fortunately, I’d previously weaned my son born at 34 weeks, (yes, I am a NICU repeat customer), so I was ready for pureeing everything! 

I found it hard not being able to give her some finger foods to buy me 5 minutes while I got her meal ready, but I just got more efficient with the freezer and defrosting ice cubes of puree. 

Sophie is one now and coping with lumps nicely, she managed a finger of toast last week!


When I was told that I had to wean at Sophie’s chronological rather than corrected age it felt like another loss of a baby stage. It was one of the times I really felt the loss of those first months in hospital, (going back to work was another) which is why The Smallest Things campaign is so important. That said, preemie babies need to grow and food is the best thing for that!

With special thanks to Sarah for sharing her experiences of feeding a premature baby – part of our “Feeding a baby born too soon” 2017 series 9-15th January. 

If you like Sarah’s blog and would like to help us raise awareness then please hit the Facebook and Twitter buttons to SHARE!


Expressing for Baby Noah in Neonatal Intensive Care

Our baby boy, Noah was born on 10th November 2015 weighing 3lb 4oz at 29 weeks. It was a complete shock having our baby born prematurely after a normal pregnancy.


I always planned to breastfeed my baby, but when your baby is born early, it seems everything is taken out of your hands. You have to put every bit of faith into the wonderful Doctors and Nursing staff looking after your precious baby. One thing that I could do to help right from the beginning was express my milk. I remember being delighted when I expressed 0.3ml for the first time. I was very strict to myself, making sure Noah could have these tiny amounts of colostrum every hour. The more I expressed, the more I produced. The nurses were brilliant at giving me encouragement and I felt I was doing something to help our little Noah. 


When Noah was 10 days old I was able to have skin to skin for the first time. Each day I would have kangaroo (skin to skin) cuddles with Noah, I loved having him tucked into my top, often, I used to express the most milk after having these cuddles. Leaving Noah in hospital was one of the hardest things I have ever done, broke my heart each day when I had to say good night to him, wishing I could just take him home. Once we had left the hospital each night, I would try and think positively about the next day and being able to see him again.


During Noah’s stay in hospital, I made sure I expressed 8-9 times per day, throughout the day and night. Setting my alarm twice at night. There is something very lonely about pumping on your own especially in the middle of the night when all you wish for is your baby to be with you. I used to ring the hospital for an update, my heart used to pound until they would tell me Noah was ok and if he wasn’t, I felt so tense, then I would start to worry that the tension would reduce my milk production. Some nights, I couldn’t express anything because I was tense, I would cuddle a warm wheat bag in bed along with Noah’s cuddly toy and blanket to try and get the milk production working again. These things always helped. I put a lot of pressure on myself but I was determined to make it work. 


Noah first breastfed at 33 weeks, he fed for a few minutes and I remember being so surprised that my tiny little boy had the strength to be able to feed. I was thrilled. Of course, for some time after this, some days he would feed and others he couldn’t as he didn’t have the energy and was tube fed instead. Noah’s feeding tube stayed in up until we ‘roomed in’ prior to discharge where we began to establish breastfeeding.

Altogether, I expressed my milk for 8 weeks until the day Noah came home. It was hard work, at the beginning my pump was like my best friend, I wouldn’t go anywhere without it. Towards the end I hated it, I just wanted my baby to be able to breastfeed. I put every ounce of energy and determination into making it work and I am pleased to say I have been able to breastfeed my baby exclusively and we are still going today! 


It’s been one of the biggest challenges of my life having a premature baby and breastfeeding him with the constant worries surrounding weight gain and reflux. There have been many days/ weeks where I have felt completely out of my depth wondering how I was going to make this happen, but I did and I am so proud of our little Noah. 
With thanks to Sarah Weatherhead for sharing her story as part of our ‘Feeding a baby born too soon’ 2017 series 9-15th January. 


If you liked reading Sarah’s’ story and would like to help us raise awareness, please use the Facebook and Twitter buttons to SHARE!

Premature Babies Recognised in Parenting Blog Awards

What an exciting way to start 2017 – The Smallest Things is down to the final 8 in the UK Blogging Awards, recognised in the parenting category!


Alongside parenting blogs The Smallest Things stands out as being different, or as I like to say – unique! Parents of premature babies face very different challenges and their journey into parenthood could almost be described as extreme. 

My baby was eight weeks old when I  brought him home from hospital. I’d been a mother for two months and yet I’d struggled to become a mum to my tiny baby as he remained in neonatal intensive care. I waited 6 long days to be able to hold him for the first time and I was filled with fear. Lines and wires tangled around his limbs and his ventilator mask obscured his face. As I held him in my arms monitors flashed red and alarm bells rang – this was a very ‘unique’ introduction to parenting. 


Writing as part of The Smallest Things blog I have described a journey that does not end when you leave the NICU doors. The memories of neonatal intensive care do fade over time, but the needs of a baby born too soon often continue and the traumatic start to parenthood shapes who you are as a parent. 

This difficult start and the ongoing journey is one thousands of parents will embark on each year – and yet parenting after premature birth is seldom spoken about. 

The Smallest Things has been trying to change that, which is why it is so fantastic to see this website recognised alongside other parenting blogs in the 2017 Blogging Awards. 
Thank you to everyone who voted for the site and we look forward to celebrating with the other parenting finalists later in the year. 

Parenting Under Pressure: Becoming a Mum in Neonatal Intensive Care

When you are expecting your first baby you begin to imagine how your life might be; you think about holding your baby for the first time, dressing them in their baby grow, caring for them and nurturing them. You think about introducing them to the wider family, of the celebrations you will have and of the new ‘mummy’ friends you will make.

Sometimes though, things don’t always go to plan.

When a baby is born with complications, or like my first son, born prematurely, everything you had imagined and dreamed of is shattered in a matter of moments. 


The moment I gave birth to my tiny son he was whisked away. He was resuscitated on a table beside me for over six minutes as my husband was torn between caring for me and helplessly looking over at the medical team desperately trying to ventilate and stabilise our baby.

I had become a mother for the first time, yet I did not have a baby in my arms. Arriving 10 weeks early and with little warning I was in shock.

We had landed in the world of neonatal intensive care; a world of medical devises and babies housed in perspex boxes. 

I remember leaving my baby for the first time. He was only a few hours old. I held his tiny fingers through the incubator portholes and whispered ‘see you soon’. 


That night I climbed into bed at home and an overwhelming sense of emptiness consumed me. I was numb and grieving for the baby who I had left behind. 

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 kept in the safety and warmth of his incubator, my baby was not really mine.

For weeks I would ask permission to hold him, as nurses helped me take him and his host of lines and wires from his incubator. Nappy changes were done on a strict timetable and feeding was scheduled around charts and numbers. I would watch as my pumped breast milk dropped through a syringe, flowing through a nasogastric tune into his tiny tummy. 


The unit where he slept was behind security doors and rigorous hand washing became the norm. Hours were spent beside his incubator, yet I was not able to do those seemingly basic mummy tasks of cuddling, consoling, feeding, bathing and dressing him. I cared for him as best I knew, but he did not feel like mine and I did not feel like a mother.

I still remember the nurse who helped me to become a mum in NICU. She not only showed me how to change a tiny nappy, she understood how nervous I was. She got how scary it was to move your babies stick thin limbs, and how the sound of alarms and buzzers terrified me as I contend with tangle of wires and tubes.

I remember the nurse who asked if I’d like to dress my baby for the first time; how she helped me to manoeuvre him limbs and lines into tiny sleeves. He started to look like my baby, dressed in an outfit I had chosen.


Becoming a mum in neonatal intensive care takes parenting to the very edge of extreme. Becoming a mum, but without your baby to hold. Becoming a mum, but left to care for your baby via incubator portholes. Becoming a mum, but saying goodbye to your baby each day. 

To say neonatal intensive care is tough is an understatement, but it is a NICU nurse who can give you hope. A NICU nurse who can provide reassurance, and a NICU nurse who can give you meaning in a world that at times can seem so unreal.

So thank you to the neonatal nurses, who not only care for our tiny babies, but who help us to be the parents we so desperately want to be. 
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