Tag Archives: premature babies

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

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

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

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

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

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

He was so brave, yet so fragile.


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

I felt robbed of my pregancy. 

Robbed from everything I should have expericed. 

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

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

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

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


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

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


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

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

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


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

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

That’s not the case. 

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


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

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


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

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

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

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

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

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

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

Louie on the day he was born


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

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

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

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

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

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

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

Louie aged 14 months


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

Louise Harrison 

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

My Tiny Warrior, Off to School

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


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


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

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


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

Ellie Hepburn 

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

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115,218 Voices go to Parliament

This week Smallest Things supporters and volunteers handed in 115, 218 signatures to the Dept. for Business, Energy and Industrial Strategy. The petition is for the attention of Minister Margot James MP who, among many other things, is responsible for parental leave policy.

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Until now the minister has declined our requests to meet with parents affected by premature birth…but we now have a glimpse of hope that our 115,218 voices will be heard!

No dates have been offered yet, but an intention to arrange a time to meet with families has been made. Watch this Space….

Thank you to everyone who shared #NotMatLeave pictures of their time in NICU on Facebook and Twitter – together we can raise awareness and make change happen!

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If you haven’t signed the petition yet, the link is still open and can be signed here.

Look but Don’t Touch – Life After Neonatal Care

As I prepared to be discharged from hospital with my tiny 30 weeker, I kept getting told by the staff to avoid supermarkets. I was completely baffled – were supermarkets really such an awful breeding ground for germs?! I solemnly promised the consultant that I wouldn’t go near supermarkets until Luca’s due date. Once we were home, I asked the outreach nurse about the rationale for supermarket avoidance. She said people in supermarkets have a tendency to touch small babies in their prams. I laughed – why would anyone pay attention to me pushing a pram around with a screaming baby?!
Oh how wrong I was.
From the day I felt more confident to take Luca out (around his due date), I’ve faced a constant stream of people trying to touch my baby or asking personal questions. For some reason, a teeny baby seems to be public property. After spending weeks of religiously sanitising hands before touching your baby, the sight of anyone putting their hands near Luca was enough to send me into a rage. Some people just don’t seem to have any concept of a mum and baby’s personal space. I’ve had family members and friends visit us in NICU, longing for a cuddle but knowing I was the only one allowed to hold my baby.
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I didn’t let anyone hold Luca until his due date arrived. He was only 4lb when I took him home. So the very last thing I wanted was strange hands all over his little body in the pram. There have been times where I have rushed around the supermarket close to tears, praying for Luca to stop crying too so I can avoid taking him out of the pram for comfort. My reaction to unwanted contact has been a firm ‘don’t touch my baby – he’s premature’ has had mixed results. Usually, people appear mortified and apologise. But no baby deserves unsolicited contact, premature or term. On other occasions, I’ve received some sharp advice. I should put a blanket over my baby’s pram if I don’t want people to touch. Why am I taking such a young baby outside anyway?! (He was 3 months old at this point). Silly me, for wanting some normality after the horrors of NICU for 6 weeks. Not that I had much choice; as a single parent, if I didn’t run errands, they wouldn’t get done at all.
As the months have passed, it hasn’t got any easier. Luca is now nearly 6 months and has finally tipped over the 10lb mark on the scales. But I’m still stopped regularly by people who want to admire my ‘new baby’. The only thing new about him is his smile, finally! I’ve developed a thicker skin and a few coping mechanisms since discharge:
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– Get a sign to alert people to your baby’s special status. Luca’s ‘don’t touch’ sign has mainly positive results, but there is still the odd oblivious person who thinks THEY are allowed to touch. It also has the unintended benefit of attracting other preemie relatives for a chat. I got our sign from Etsy and another preemie parent has also produced a badge to keep unwanted hands away.
– Wear your baby in a sling. I’ve yet to encounter someone rude enough to put their hands down my top – but never say never!
– Use your raincovers as a barrier. I have looked slightly odd on sunny days but I will use my raincovers in crowded places such as surgery waiting rooms if we’re in a confined space.
– Be firm. I will wheel Luca’s pram out of people’s reach and tell them (abruptly) not to touch my baby.
After the NICU rollercoaster, being rude to someone risking my baby’s health is the least of my worries.
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Guest post by Carla, mum to Luca born at 30+6 (emergency c-section for absent end diastolic flow and IUGR)

How can health visitors support families after NNU?

Hello, my name is Charlie. I’m a health visitor and practice teacher. I’m also an IVF mummy to a 32 weeker (who is now 5).

I remember my daughter’s delivery as if it was yesterday. My waters began to go whilst I was doing our local child health clinic. I was admitted to hospital and five days later I gave birth to our beautiful little girl, Emma. I was 32+1 and Emma weighed 3lbs, 4oz. Emma and I are very close, she is my little buddy. One thing which still upsets me still, is that Emma was taken from me at delivery and taken to NNU. This was absolutely the right thing for her, but as a new mother, it is very traumatising. Having your baby taken from your arms by her paediatricians was something I wouldn’t wish on anyone.

I had my placenta manually removed in theatre whilst I haemorrhaged four pints of blood. Whilst I desperately tried not to faint, I could see my husband’s face getting paler and paler. He later described the scene as a ‘blood bath’ and that he was worried he would lose me. I knew I would be ok, but from my husband’s point of view, it probably was a bit scary. I could not fault the care that I received. In some ways, it was a blessing having Emma in NNU as it gave me the time to recover and regain my strength.

Emma spent three weeks in NNU. The staff are amazing. They supported me in breast feeding her and were nothing but kind and caring. However, as a mummy, it can be a really boring place to be. Emma slept loads. So other than expressing milk and writing thank you cards, I did not have much to do. As Emma moved through the unit towards discharge, I remember craving to be normal. hv-blog

Finally we were discharged home. I had no experience as a mother, so reverted back to what I knew, my job. So Emma and I went to the child health clinic I used to run. It felt so familiar, but so different. Many of the other mums came over to speak to me. Those who I did not know made comments on how they had never seen such a small baby before. I just wanted to run away. My baby was not something out of a circus show, she was mine and she was beautiful and strong. This familiar, safe place I had been too had let me down. I felt uncomfortable and isolated.

What this has taught me as a health visitor, is that is does not matter what you do for a living, when you are a preemie mummy, you are a preemie mummy. It is ok to grieve for the loss of ‘normal’. It is ok to feel sad that the paediatrician took your baby away and it is ok to feel like you don’t belong and that your baby is different. I am also very mindful of how daddies feel, we cannot forget that they might also grieve and that they too can feel traumatised. Unfortunately we do not see fathers often, but they are a vital part of the family and cannot be forgotten.

We deliver the Healthy Child Programme to all families, but when you’ve delivered early, you might have missed out on the antenatal. We have good relationships with our NNU’s and often visit families in hospital. I know the mothers I have met have been pleased of the company if nothing else. When baby come home, your health visitor will visit you and your baby for your new birth visit. This is an opportunity to explore your feelings and you can discuss with your HV how best she/he can support you. Postnatal depression (PND) affect 1:10 women, but you are statistically more likely to suffer PND if you have had IVF or suffered a traumatic event, including delivering early. HV’s can support you through listening visits and signposting. Please do not feel afraid to speak honestly to your HV. She/he will not judge or criticise. We are just here to support you in being the best parent you can be for you baby. I have put several preemie mothers in contact in my area and they have found great support in each other. If you are keen to meet another preemie mummy, ask you HV is she knows anyone who has a similar story to you. The chances are they do.

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Preemie mummies and daddies are amazing and preterm babies are gorgeous and special. I’m a very proud mother of my preterm and it is true what they say, “Only special people deliver a preterm baby.” 

 

With special thanks to Charlie Woodley, preemie mum and health visitor, offering important words of advice.

Like what you’ve read? Would like to help us raise awareness? Then click the sharing Facebook and Twitter buttons and make The Smallest Things Matter.

Got a story you’d like to share?  email Catriona at smallestthings@yahoo.com

 

 

Mason & Teegan-Mae: Our NICU Journey

Guest blog post by mum of two, Sophie Willis, raising awareness as part of World Prematurity Month

I always dreamed of having a perfect pregnancy with a complication free birth and having immediate skin to skin with my new born.

At 35 weeks in July 2013 I was admitted to hospital with irregular contractions. I still had hope that I would make it to term – or as close to term as possible.
After a few days my waters broke and I went in to spontaneous labour. 2 hours and 51 minutes later I delivered a perfect little girl called Teegan-Mae. She weighed 1.990kg and was beautiful.

She was took to SCBU and stayed for 10 days with feeding difficulties, temperature control and jaundice.

Immediately after Teegan’s birth, I still longed for the perfect pregnancy and delivery. My partner and I always wanted more than one child so we decided to start trying right away.

Eventually with the help of fertility drugs due to secondary infertility, we found out I was pregnant in April 2015. My partner and I were over the moon, and was so excited for Teegan to become a big sister.

Despite having awful morning sickness, my pregnancy was perfect.

At 24 weeks I started to have contractions and went to my local hospital. I was examined immediately and given steroids – Ouch! I was transferred from Swindon to Oxford to be in a hospital with a better equipped NICU. Fortunately, the contractions had stopped and I returned home.

“I was worried sick, I felt like I was suffering a loss, I knew my pregnancy was going to end very soon. My partner, daughter and little bump was the only things keeping me going.”

At 28 weeks, I was admitted to hospital with contractions again. This time I was 2cm dilated and I knew this was it.
A few days passed, contractions still present and I had an awful feeling in my gut…
My waters broke and baby was in distress. I was prepped for a cesarian section where my gorgeous little boy Mason-George was born. He weighed 1.348kg and was born crying! Mason was transferred to NICU, where he was put on CPAP.

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The first week after Mason was born was my worst nightmare. He was very distressed and needed to be ventilated. He also had a blood transfusion, returned to CPAP and then went on high flow. We also learned Mason had a PDA and a hole on his heart. He also had an inguinal hernia.

“I felt awful leaving Mason every night, and also felt just as bad leaving Teegan during the day.”

The unit became our second home. I always thought my body failed him, so I wasn’t going to fail him now. I provided all his cares, belongings and spent hours at his cot side expressing for him.

I learnt so much about my little boy, he had many apnoeas, desaturations and bradycardias. He had multiple blood gasses, blood tests, transfusions and cannulas for antibiotics or IV fluids. He had medication daily, and I was able to feed him breastmilk via NG tube and attempt breastfeeding when he was big enough – although he took a long time to coordinate himself!

 

Mason required an operation for his hernia and his immunisations which we’re little set backs for him. His PDA shut without intervention which was a huge positive!

After 88 days in NICU, Halloween, bonfire night, Christmas, Daddy’s birthday and New Year – Mason came home 9 days after his due date.

The transition home was hard, no monitors, temperature checks, charting feeds or nurses for additional support. But we quickly adapted and found a routine which worked for us all.

During our stay in the NICU, I learned to take each day at a time. Each small set back made room for a leap in the right direction. As little as these premature babies are, they have courage, fight and strength like no other.

The nurses who looked after Mason while I could not be there hold a special place in my heart. Keeping my baby comforted, fed and warm when he should be tucked up in my stomach. They are present during the darkest time of many families life’s, but also the greatest times too. Such amazing people.

We have made life long friends while in the NICU, we could support and advise each other as we have that one thing in common!

I now have 2 happy and healthy NICU graduates. My little miracles.

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Raising awareness for prematurity holds a massive place in my heart. I knew nothing about prematurity until it happened to us.

Will you share Sophie’s story to raise awareness?

Have you got a story to share? Email Catriona at smallestthings@yahoo.com

A Roller Coaster Journey: Told by a NICU Dad

From the start…

Nic’s pregnancy didn’t seem to be anything out of the ordinary.  Apart from the sunstroke whilst on our first holiday in Turkey and the extreme vomiting that is.  All appeared normal until that 1st scan, 12 weeks in.  “There’s 1 heartbeat, and there’s the other. Congratulations your having twins’’ was what we thought we heard from the sonographer.  There couldn’t be, this hadn’t even cross our minds as there was no history of twins in either side of the family.  But that’s what we had heard, two of them were there on the screen and the scan didn’t fib!  That was at the QE in Gateshead on 10/07/2013.  We were sent for a more detailed scan 2 days later at the RVI in Newcastle as they were specialists when it came to twins.  So a few days later, while I was away with work, Nic attended the RVI for further scans and tests which all seemed fine.  Sure enough it was twins, and they had a present for daddy from within the womb – a personalized message on the scan picture!

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What happened next?

The 20 week scan confirmed we were expecting twin boys, which we nicknamed Blip & Blop.  Shortly after, 6pm on a Thursday night, I went to help Nic in with bags and stuff from the car from her finishing work.  She was complaining of stomach pains and didn’t feel quite right.  However, by 9pm they had stopped and so assumed they were Braxton Hicks which come earlier in the pregnancy when expecting twins.

We didn’t think any more of it; As I was about to leave for work the next morning I still wasn’t concerned when Nic told me she’d “had a show” as she got out of the shower.  We rang the maternity assessment department at the RVI and they advised we should call in so Nic could be assessed just to be on the safe side.  So at 8am we set off and the way there we joked about how it would be a nightmare if she was to go into labour and we had to make this journey in rush hour traffic, as we were doing now.  Little did we know, until we got to the hospital, that Nic was actually in labour, and she was 3cm dilated.  We were only at 23 weeks and 5 days; we were told to expect the worst.  The next few hours passed in a daze as Nic was admitted onto the delivery suite. She was given a steroid injection to help develop the babies lungs and another shot had to be done 24 hours later. Everything was done to try and stop or delay the labour, and fingers crossed it seemed to be working, Nic got the second steroid injection 24 hours later and everything appeared to have calmed down.

“Expect the worst” to me meant that they were on their way, I never thought they meant there was little chance of survival.  Even in the delivery suite, when the ‘baby doctor’ came to visit and explained the likelihood of survival was extremely slim and to try and prepare us for what was about to happen, there was a stubbornness in me that said “you’re wasting your breath”.

And then it happened

Around 2pm on the Saturday afternoon it happened and Nic’s Waters broke, or rather trickled.  The midwife explained that now there was no going back, this was it.  We had a list of names that we had been thinking about but now we had to decide. We couldn’t let them come into the world and have no names so there it is Jake & Kyle’s journey was about to begin. The ’Baby Doctors’ were put on standby, texts were sent letting people know.  Things seemed to drag, then rush, drag then rush. A few hours later and they decided Nic was to be put on a drip to now speed up the labour as they couldn’t let the boys get tired.  2 portable incubators were placed in the room, the midwife disappeared; where was she when we needed her; where were the baby doctors?

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Mild panic, no need to worry; everyone was in the right place at the right time, apart from the nurse who stood in the wrong place when Nic’s waters really did break, squirting across the room!!  Jake arrived at 9.51pm, the tiniest little thing you’ve ever seen no bigger than my hand, with skin like a baby bird.

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He was whisked across to the incubator where a team of 5 or 6 doctors and nurses turned their backs on us and concentrated solely on Jake getting him breathing.  After about 5 or 10 minutes but what seemed like forever he was held up to us for kisses, before being whisked away.  Where to?  We didn’t really know.  Then silence.  No contractions, no nothing.  Could twin number 2 hold on for days, weeks more?  It was possible, apparently and that’s what the consultants were hoping for. They explained that they would leave Jake’s placenta in and put stitches in and that would be it. That was until Nic started to lose blood, she didn’t know what was happening, but I could see that she was losing more and more. Suddenly, what we thought was a busy room began to get a whole lot busier and it became obvious emergency surgery was required.

It was Nic’s worst nightmare and had already expressed her fears, to give birth to one baby naturally and the other by emergency caesarean. But at that moment in time, she didn’t care; anything to get Kyle out ok.   Whisked off to theatre, where originally we were hoping I could be there and Nic could be awake to meet Kyle as we didn’t know what was going to happen. However, once in there it became apparent Nic lost more blood than they thought and time was against us. She had to be put to sleep. Pacing the floor outside theatre I had no idea how much time passed before they came to tell us Kyle had been born at 11.52pm. By this point the newly Granda and Nana had arrived at the RVI for the second time and we were all invited to see Kyle – in the corridor -before he too was whisked away.

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The baby doctors were breathing for him, but still had time for us to pay that brief visit.  Nic came round in the recovery room several hours later, and she was still groggy when we were told Kyle was off to Middlesbrough as there was “no room at the inn RVI”. We prayed and hoped he would survive the journey but they couldn’t guarantee anything.

Welcome to the world…

So our 2 boys were here, Jake born weighing 1lb 6oz, Kyle 1lb 7oz.  Good weights for their gestation apparently, especially for twins.  Nic had cooked them well although she didn’t feel like that. Jake got the last available bed at the RVI, Kyle was 30 miles down the A19 at James Cook Hospital on Teesside.

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So from expecting a quick check-up and discharge, a whirlwind few hours had changed things dramatically.

…The world of SCBU

Not many people experience the workings of a SCBU, or Special Care Baby Unit.  We got to experience 2 SCBUs for a short time – shorter than expected thankfully.  Initially told it could be 3-4 weeks before Kyle was strong enough to be transferred back to Newcastle, it was actually only 6 days before he was taking his 2nd ambulance trip.  Nic had only just managed to visit Kyle on that very day, having been unable to visit initially due to having her caesarean and been admitted in the RVI but then suffering from sickness & diahorrea she wasn’t allowed in.  Thankfully she was able to visit James Cook hospital and take a thank you card to the nurses there for looking after Kyle during his crucial first days. I was grateful for this as Nic needed to see where Kyle had spent his first week.

Those early days were unreal; looking back it seems like a lifetime ago, yet so vivid despite everything that was going on.  Everything was alien to us, we had never even imagined that there was a unit in the hospital to care for premature babies – so many premature babies.  Experiencing 2 neonatal units was interesting, completely different layouts and methods.  At the RVI, Jake was in a small room, bay 7, in the red area of SCBU which only had 4 beds in the room, while Kyle was in the first incubator we saw, in a larger room with around 8 other babies.  Both looked tiny in their incubators, yet perfectly formed with little fingers and toes.

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Thankfully Kyle was able to return to the RVI quickly, and he took up residence in the same bay as his brother, so we had half of the bay to ourselves.  We didn’t realize at the time how long we would be in there, many other babies came and went from the 2 other spaces in the room while we were in there.

Everyone talks about the SCBU journey being a rollercoaster, and it really is the best way to describe it.  12 days in, Kyle opened his eyes for the first time, then the next day we had a massive downturn…

At only 13 days old Jake needed an operation on his stomach, the doctors weren’t sure what was wrong but his tummy swelled up and there was clearly something going on.  To be told by the doctors that he had a 50:50 chance of surviving the operation but wouldn’t make it without it was the worst feeling ever. We had to wait on blood being delivered from Leeds before the op could go ahead.  We followed him along the corridor in his travel incubator as he went to theatre then had to wait for what seemed to be an eternity for news. We were told not to go far in case we needed to be called into theatre. 3 long, long hours later we saw the nurses going to collect him, great news he’d made it. Then we got a message that the surgeon wanted to see us, which brought us right back down wondering what was wrong; why did he need to see us, Jake was here.  Thankfully he wanted to let us know that the operation had been a success; that all was good and we had the best possible outcome! However, Jake had returned with a stoma, he’d had NEC (necrotizing enterocolitis), a perforated bowel.  The next couple of days were ropey to say the least, morphine keeping Jake sedated while all we could do as parents was watch his sats monitor. Beep. Beep, Beep.  Kyle was doing ‘ok’ but we were told to take it hour by hour not day by day for now.

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After 2 weeks paternity leave I was due to return to work, but there was too much going on to even consider it.  Thankfully work were understanding and told me that the boys were my priority, they understood the seriousness of the situation.  I did make it back for half a day but then Nic took ill with a cellulitis infection and was readmitted to hospital.  When I did see friends & colleagues it was clear that some people didn’t really know what to say, were congratulations in order as with most babies, or not.

3 weeks in and we got to understand what a stoma was; we learnt to empty the stoma bags that were attached to Jake’s stomach to catch the poo, a nice pleasant experience!  His skin though was so soft and transparent that the bags didn’t like to stick, and needed changing regularly due to leakage.

Reading to the boys gave us some more interaction with them rather than just changing nappies and cleaning faces for 10 minutes twice a day. That was all we were allowed.

Day 25 was another hurdle to overcome, an early start led to a trip to the Freeman Hospital for a heart operation for Kyle.  All babies have a duct in the heart that usually closes at birth.  However premature babies’ ducts can remain open as they’re not ready to close yet, meaning that surgery is the only option. Without it, it’s unlikely that he would breathe without the ventilator keeping him alive.  Consenting to allow a surgeon to operate on a heart so small is not the easiest thing to do, however there was no alternative.  Thankfully all went well and Kyle was back at the RVI by lunchtime.  The next couple of days were again more worrying, as Kyle took longer to come off the morphine than Jake had after his bowel op.  Every time they tried to bring him round he was fighting against the machines so they had to keep him sedated while his body learned to pump blood through the heart the right way. They say every baby is different but you can’t help but compare.  6 days later and Jake had the same heart op, different surgeon but the same result, a metal clip to close up the duct.

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From here on in it was all about growing and getting both boys breathing on their own and feeding of course. Well when I say on their own I mean not the ventilator taking breathes for them, them doing it on their own but still with oxygen support.  From ventilator to Bi-Pap, Bi-Pap to C-Pap, C-Pap to Humicare, humicare to Low Flow Oxygen.  Massive steps along the journey and not steps that were taken easily and sometimes steps that had to be taken backwards as well as forwards.

When Jake came off the ventilator on day 75 I got a massive surprise – it was the middle of ward round when it was pointed out to me that he’d made the big step and seemed to be doing well – so happy the tears flowed!

Along the way though we managed happy times: On day 39 it was Halloween and we decorated the incubators with blankets and pumpkins, day 42 and we finally got to hold both boys at the same time! That moment had been a long time coming but fantastic when it happened.

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Other milestones were reached; joining the 1 kilo club was a massive achievement, first baths after more than 60 days of topping and tailing, progress with feeding too, going from continuous feeds via a tube to syringe feeding to bottles.  All big steps for little boys.

During the journey the boys also had to have numerous blood transfusions and Jake had to receive platelets too. This was scary the first time but then you get used to it.

Growth was a big thing.  “The bigger they get, the stronger they are”, said one of the consultants.  Granda described them perfectly as “massive tiny babies” as they grew well. Kyle more quickly than Jake due to his stoma. He was having problems gaining weight which seen a lot of doctors have input to what fat/calories he was to have through the TPN.

ROP (Retinopathy of prematurity) is a common problem in prem babies.  Both Jake and Kyle had regular checkups to gauge how and when action was required. This wasn’t pleasant as their tiny eyes are clamped open.  Jake’s eyes were the worst and his only option was to have Avastin injections (which weren’t even licensed in the UK) after 67 days, Kyle’s not as bad and was given laser surgery 2 weeks later.

Christmas in SCBU can feel like a lonely place and not something that you look forward to.  All you want is for your babies to be at home with you, but you know the best place for them is in hospital.

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However, getting involved is important.  The nurses and doctors painted and decorated the unit in the lead-up to Christmas and we joined in, painting a reindeer and a present.  We bought the boys their first advent calendars to put beside their cots and we spent Christmas Eve on the ward and waited until after midnight to ensure we were there at the strike of Christmas Day.  The boys had festive blankets and Xmas babygrows (although Jake couldn’t wear his as he wasn’t well enough). That’s another story, Jake going for his reversal of his stoma! Santa even arrived at SCBU and all of the babies received stockings and presents.

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Just before Christmas we paid a visit to family in Cumbria, delivering presents (the first time we had been back since the boys had been born).  It was difficult travelling so far from the hospital, worrying in case anything happened to the boys.  As it happened, is was us that we needed to worry about, as we got stuck in floods and had to travel a long way round to get back.  We just had to visit the hospital on the way back though, even though it was around 1am when we made it.

So Jake and his stoma reversal just before Christmas… This had to be done earlier than planned as at this point we were struggling with his weight and his skin had started to break down from all the leaks of the bags.

Following the operation he was re-ventilated and back in the intensive care area. Something that me and Nic feared as Jake had needed steroids to come off the ventilator originally which have their own risks. It felt like a big backward step being back in the “Red” area after progressing round onto the ‘’Blue’’ area and Kyle been a ‘’Green’’ baby, but we needed that stoma reversed as he wasn’t growing.  They were rocky days over Christmas as it looked like the reversal hadn’t worked and his scar was leaking. Jake was back on the morphine again keeping him pain free, we feared he would have to be rushed back to theatre while his surgeon was on holiday. But eventually things started to pick up and on New Years’ Eve he was out of the incubator and into a babytherm, a heated cot – and yes DRESSED!

After 108 days in hospital, on 8th January 2014, we took the first true step towards bringing a baby home.  We got to spend the night alone with Kyle in 1 of the hospital ‘flats’, rooms on the ward dedicated for parents of premature babies getting ready to face the big wide world.

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We had to get used to changing his oxygen cannulas on our own, bathe him and finally look after him like we should have been able to do all those weeks ago. Knowing that we were on our own with Kyle was scary, but helped  knowing the nurses were just outside if we needed anything.  And Jake was just round the corner too!  2 days later and the time came that we’d been waiting for.  Most parents get to take their babies home within a day or 2 of them being born; for parents of premature babies this sadly isn’t the case.  Therefore, to finally get the chance to leave the hospital with a baby is such an emotional time and tears flowed.  Sad that Jake wasn’t quite ready to join us, but overwhelming knowing we had Kyle with us and he was allowed to leave!

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Kyle visited his brother in hospital every day and the nurses kept a cot handy for him to use.  The boys regularly had “twin time”, sharing a cot and getting close to each other.  To see them together was a magical experience.  Jake’s scar healed and stopped leaking, he started putting weight on and medicine requirements dropped pretty quickly, as if he knew his brother had gone home.  Things progressed very quickly after Kyle came home, Jake took to bottle feeding without a problem even missed a few stages and on day 123 it was time to Go!!  23rd January 2014 and Jake left a message for the nurses before he & Kyle were united at home for the first time.

The end of a true rollercoaster ride as predicted, but the start of many adventures for two amazing boys who defied the odds to survive and thrive.  As I complete this story (it’s taken a few months), Jake has just come off oxygen completely, rounding off our SCBU journey nicely.  We will be back on the unit at Christmas to take in chocolates for the nurses and snacks for the parents who find themselves in the same position we did last year.  The fact that I am able to still know the details of our journey this far on is thanks to Nic keeping a diary.  A very personal diary, detailing not only practical things like weight gain and oxygen requirements, but also the emotions we experienced as we went from hour to hour, day to day, week to week.  A diary that we almost lost nearly 80 days in, but that’s another story…

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With thanks to Colin French for sharing his story.

If you have a story you’d like to share, please contact Catriona at The Smallest Things – smallestthings@yahoo.com

How NICU Mums Are Chosen

NICU mums are tough: We may not feel like we are tough, indeed we often feel like we’re only just holding on, as if we could slip at any moment. As preemie parents we all need support, of that I am certain, but within us there is a strength, perhaps found in the love and courage of our little ones.

Even years later, I find myself digging deep to find that strength. When I comfort my youngest as he coughs a cough I’ve heard too many time before. A sound that fills me with dread and sets my heart racing – will we be going to hospital tonight?

I don’t believe I was ‘chosen’ to be a preemie mum, it’s just one of those things. But when times get tough and I struggle to find the strength I remember the poem by Erma Bombeck….

How Preemie Moms Are Chosen
by Erma Bombeck

Did you ever wonder how the mothers of premature babies are chosen?

Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.

”Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint…give her Gerard. He’s used to profanity.”

Finally, he passes a name to an angel and smiles. “Give her a preemie.”

The angel is curious. “Why this one, God? She’s so happy.”

“Exactly,” smiles God. “Could I give a premature baby a mother who knows no laughter? That would be cruel.”

“But does she have the patience?” asks the angel.

“I don’t want her to have too much patience, or she’ll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I’m going to give her has a world of its own. She has to make it live in her world, and that’s not going to be easy.”

“But Lord, I don’t think she even believes in you.”

God smiles. “No matter, I can fix that. This one is perfect She has just the right amount of selfishness.”

The angel gasps, “Selfishness?! Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see— ignorance, cruelty, prejudice— and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her Patron Saint?” asks the angel, his pen poised in the air.

God smiles. “A mirror will suffice.”

November is World Prematurity Month. Please share to raise awareness. A journey through neonatal care lasts long after bringing your baby home 💜

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My Life as a NICU Mummy

Guest Post by Vicky Jackson, for World Prematurity Month 2016
I remember the day like it was yesterday. I got into bed at 2350, and I couldn’t actually believe this was happening, my waters had broke. I was 32 weeks pregnant.
I went into auto pilot, called the hospital and they said to come in ASAP. My husband and I ran around packing everything we thought we would need including size 2 nappies and car seat (we laugh about this now, not expecting to go hunting around Mothercare in the weeks to come for micro nappies).
On route to the hospital I remember googling about having a baby at 32 weeks and starting to panic. I felt like I had let everyone down especially my baby. I still do blame myself for my little boy arriving so soon. ‘Why couldn’t I carry till full term? I feel guilty he had to spend the first 3 weeks of his life in hospital when he should have been in my womb or at home with me.
When we got to the hospital I wasn’t having any contractions so they said they would give me a steroid injection now and one 12hrs later to help babies lungs mature. Boy did that hurt! And there was a possibility my waters would refill and I could be discharged home the next day, being monitored for the rest of my pregnancy. This made me a lot calmer.
But by 2pm it was another story. My contractions had started!
4pm came and it was time to push, I was scared ‘was my baby going to be ok?’ I had 10 doctors and nurses in the room with me to help my baby when he was born.

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1825 on Mother’s Day, Ethan was born at 4lbs 3, a good size for a 32 weeker. When I heard him cry it was the most amazing feeling ever, he is a fighter I just knew it.  They wrapped my baby up, I had just a quick glance and touch, then he was whisked off in an incubator. Daddy went with him. That was the hardest hour of my life as I couldn’t be with or see my baby.
After an hour I was able to go see my gorgeous boy. I was numb when I saw him, he had wires coming out of him and the beeps from the machines were so loud. Can he hear that? Will he be able to sleep with all that noise? All these thoughts and questions taking over my mind, I felt like I was in a bubble! All I wanted to do was pick him up, run and take him home! I felt lost and empty, my arms ached, I just wanted to hold my baby.
That next evening I was discharged.Leaving the hospital without your baby is the most unnatural thing to ever go through. It felt so wrong and so unbelievably painful. Every day I would get up early and get to the hospital as soon as I could. I would stay there all day.
My life as a NICU mummy was another world, in which I heard the same words daily – Hiflow, Loflow, long line, picline, CPAP, mummy have you expressed today? Making sure you had enough micro nappies,  endless trips to the expressing room,
washing your hands constantly until they were red raw, and wishing the consultant would say today’s the day you’re rooming in.
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Hours passing by I would sit there just looking at our strong gorgeous boy reading to him, singing to him, longing to hold him.  I never thought the first time I would hold my baby I’d be fighting the millions of wires, but that just became my life and the more I was getting Ethan in and out of his incubator the more I was becoming a pro!
We moved up to the ‘Nursery’ section in NICU after day 3 and the nurses like you to do your babies care while you’re there this includes nappy changes, mouth/eye care, temperature and feeds, getting you ready for going home.
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Our son was getting stronger and bigger by the day and eventually his tube came out and I could breastfeed him. He took to it like a pro. We roomed in for 2 days and he did amazing so they said we could go home. Those were the words we had longed for since the day he was born, but I was so scared to take him home. I even asked if I could take one of the machines with us and even looked at how much they were, those beeps were my life for 3 weeks.  Going home was the most amazing feeling ever!
Our son is doing amazing and is now 7 1/2 months and over 20lbs! He is a joy to be around and is meeting all expectations, we are so overly proud of him. I have met some amazing mummies from NICU and I know we will be life time friends as we have one thing in common.
Our sons are NICU graduates!
If you have a story to share like Vicky, please get in touch with Catriona e. smallestthings@yahoo.com

The NICU Roller-Coaster

Jaxon was to be my third child. My precious two pregnancies and labours were as straight forward as can be. My midwife this time was encouraging me to have a home birth! I never felt quite right during this pregnancy, I was catching coughs and colds very easily and felt ill constantly. All Jaxons movements were very low compared to my last two pregnancies, but my midwife said it was “because your stomach muscles are not what they used to be”.

At exactly 24 weeks I had pains constantly all day – I even googled if it was too early for Brixton hicks! Then in the evening I started to bleed so my husband and I went to the hospital.

I was adamant that I was having a miscarriage and repeatedly kept apologising to my husband for losing our boy. The thought that he was trying to come early did not even enter my mind until the Dr said I needed steroid injections to boost the baby’s lungs before he arrived!

Over the next couple of days I remained in hospital; I continued to have pains that would come and go and I continued to bleed which would stop and start. On day 3 I was having much stronger pains which felt very much like strong contractions. By 8pm I literally had to beg for someone to examine me because at this point I was having strong pains every 15 minutes. At 10pm a doctor finally arrived and examined me, she couldn’t hide her shock – I was 6cm dilated. I was rushed to the delivery suite and was frantically worried, how was this happening?

A doctor from the NICU visited me and explained that my son had 40% chance of survival and that the hospital wasn’t equipped to care for 24 weekers. He said my son would be made stable and would then be sent to another hospital. As if someone flicked a switch, my contractions just stopped!

By 10am the next morning they had completely stopped and the doctors decided it would be best for the baby if I was transferred to another hospital before the birth… but the only hospital available was 60 miles away!

I didn’t care, I would go absolutely anywhere if it gave my baby a chance. Two hours after arriving in Sheffield Jaxon was born. He was taken straight to NICU. A couple of hours later we were allowed to visit him. I didn’t know what to expect but despite all the tubes and wires I could tell instantly that he looked like his big brother.

When Jaxon was only hours old we were called to speak to the doctor. Jaxon had suffered from a grade 4 and grade 3 bleed in his brain. He had not responded to treatment for over an hour and his stats were only in the sixties despite being on 100% ventilation. The doctor felt that Jaxon was not going to make it through the night and didn’t want him to die without us holding him. We were advised that the best thing for Jaxon would be to switch the machines off and spend time alone with him in the quiet room until he passed away. I will never forget the sound of my husband’s cries during this time. The most heart-breaking sound I have ever heard.

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We both wanted Jaxon christened before so we waited with Jaxon for the priest to arrive. I spent that time stroking his head, repeatedly begging him to make it saying “come on baby don’t give up”. My husband nudged me – Jaxons stats were rising!

I did not dare to hope. He was christened as planned and afterwards the medical team were amazed that he had started to respond and we were told that for now his machines would not be turned off.

The next few days involved a lot of discussions of what level of disability we would ‘accept’ as Jaxons bleeds were so severe. There was no question for me, this was my boy and if Jaxson surviving involved moulded wheelchairs and hoists I didn’t care. I just wanted my baby to survive.

He continued to improve slowly each day, but it was a long and slow journey. At 5 weeks old we were told that he had hydrocephalus as a result of the bleed and he would need a shunt inserted. The operation date was planned and involved Jaxon being transferred to a children’s hospital in Sheffield. On the day of the operation Jaxon reacted to the sedative used to transport him and the operation was cancelled as it was now too risky. Instead they removed the fluid manually and monitored his head circumference, all the time trying to delay surgery until he was stronger.

He remained ventilated till 8 weeks old and needed steroids to get him off the ventilator. It was like he was a different baby; in just 24 hours he went onto CPAP and then off CPAP and onto highflow. He was allowed the top off his incubator and was transferred into high dependency. We were told that he was now strong enough to be transferred to a hospital closer to home. I had spent the whole 8 weeks in Sheffield away from home – including Christmas.

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Jaxon was transferred to a hospital an hour from home where he remained for the next 8 weeks. His head circumference was slowly increasing yet they still felt he was not strong enough for surgery. His lungs were proving the biggest problem; we were told that we needed to get him onto low flow oxygen so he could have the surgery. His new doctor was not positive at all for Jaxon’s future. He told us that he would definitely have a severe disability; that he wouldn’t go to a mainstream school, that he wouldn’t be able to orally feed and that he had the worst case of chronic lung disease he’d ever seen.

The news hit me like a train.

Once I calmed my tears I took great pleasure in telling the doctor that Jaxon had in fact consumed 6 bottles within the last 24 hours!

At 37 weeks gestation he was finally able to be on low flow oxygen and three days before his due date he was transferred to another hospital for surgery.

We spent the next few days having tests and MRIs. His head circumference was growing very rapidly now and later that week he had a shunt inserted. Afterwards we were transferred back to his previous hospital while oxygen was arranged for going home.

At exactly 4 months old Jaxon came home!

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We were so happy to finally have him home; but he wasn’t quite right though. He was very grumpy and unsettled with his sleep and his feeds. I put it down to having his injections the day before, but 6 days later it became apparent what was truly wrong.

He developed a lump on his head where his shunt was, so I took him straight to our local A&E department. They told me they thought his shunt was either infected or broken and we were blue lighted back to the hospital where he’d had his shunt inserted.

The next few hours were more and more tests and we were told that Jaxons shunt was severely infected. He needed emergency surgery to remove the shunt and he would need two weeks of strong antibiotics via a long line before having a new shunt inserted.

I felt so angry – when was our poor boy going to be given a break from all of this!

He began having seizures and I was told it was due to the infection being so severe. It took a few days to find the right antibiotics to fight the infection but once they did Jaxon responded quickly. Two weeks later he had a new shunt and after another 4 days he was finally home again.

Over the 4 months since Jaxon has been home he has gone from strength to strength and he has been off home oxygen for the last three weeks! He is doing everything he should be doing for his corrected age and is such a happy, cheeky, little boy. His pediatrician and physiotherapist are delighted with his progress.

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There is no roller coaster like NICU, but ALWAYS believe in your baby; they are stronger than anyone could ever imagine!

Aimee Davis

Mumsnet 2016 Best Campaigner Award – Shortlisted!

I am thrilled and so very proud to announce that The Smallest Things have been shortlisted for the Mumsnet 2016 Best Campaigner Award!

It was a wonderful and very unexpected surprise when I received the notification yesterday evening; and it is a huge honour to be included alongside 5 other inspirational women who have all shared their own experiences to help others.

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The recognition of our campaign now is particularly timely – our PETITION to extend maternity leave for mothers of babies born too soon nears 20,000 signatures and it comes just days before the launch of our NEW  Smallest Things red book Preemie Proud stickers.

Although The Smallest Things, launched in September 2014, campaigns for better care for parents following a NICU stay and for extended maternity leave for parents of premature babies, our site also offers hope and support to parents.

“Your site helped me to understand what we had been through…..unless you have lived it, no one truly understands x”

“I had PND and even now 6 years down the track I panic when I hear a baby cry- I thought it might be PTSD but was unsure. Your article has helped me to know that I am not alone.”

Just been reading your blog & it’s so reassuring to know that a lot of the thoughts & feelings I had whilst baby was in special are common amongst prem baby mums! Hated my thought train at times but now know it’s not just me!”

The three finalists will be chosen through a public votes; so please, if you’d like to help make The Smallest Things matter, VOTE for The Smallest Things in the Best Campaigner category.  click here and VOTE NOW!

Why not share the link with your friends and family too?

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NEW! – “Preemie Proud” Red Book Stickers

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

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

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

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

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

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

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

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

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

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

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

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

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

Smallest Things

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

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

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

 

 

 

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Life After NICU – 5 Years on

It’s been five years since my world turned upside down; five years since the shock and the uncertainty of neonatal intensive care.

The birth of my baby boy at just 30 weeks gestation happened quickly and with little warning. I was numb and the process felt surreal – it happened in a blur, yet I still remember those moments as if they were only yesterday.

My baby was whisked away to neonatal intensive. I had become a first time mum, but I had no baby to hold.

I went home later that evening, lost and empty, my baby left in the care of the neonatal staff.

Smallest Things

Like many parents, our journey through NICU was one of ups and downs; one step forward, two steps back. I quickly got into the routine of the unit, visiting each day and attending to cares where I could. I had a baby, but I did not feel like a mum.

 

Five years on – I am happy to say I feel like a mum!

This didn’t happen overnight though; it can take a long time to recover from the trauma of NICU, time to put the fears and worries behind you and precious time needed to bond.

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At home I felt so alone in my feelings of grief, loss, jealousy and anger. There was a place on my chest that ached, where I longing to have had my baby placed straight after birth. A special place where he should have laid his head and where I should have held him tight.

I was alone in my feelings of sadness and worry. I couldn’t relate to the stories or day-to-day concerns of other new mothers who I met.

And most of all… I dreaded the question – “How old is your baby?”

 

Five years on, the memories of NICU are still there;

I think that they will always be….

….but over time they have faded and don’t seem quite so raw now.

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We have made so many more memories together as a family and knowing that my feelings following NICU are shared by others who have experienced the same journey has helped me enormously.

I no longer feel alone in the feelings of grief and loss, feelings that I felt so acutely after coming home. I know now that those feelings were entirely normal and am thankful to all the mothers who have gone before me and who have shared stories of their own.

Five years on, yes the worry and uncertainty continues… but those emotions are manageable now, becoming part of our every-day life rather than ruling it. Yes, I worry about coughs and colds, the ones that have landed us back in hospital, but I try to take a pragmatic approach, we have got through it before, we have been through worse, and we’ll get through it again.

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Five years on I have an amazing little boy who has been making me proud since day one.

His strength and determination has always been an inspiration to me and as I watch him grow and develop the days of NICU seem further and further behind us.

 

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

My Superhero Preemie Powers

Tomorrow my eldest son will turn five.

He has been busy planning his Superhero themed party with great excitement!

And this year’s theme seems pretty apt for my Samuel Superstar.

 

I was 29 weeks pregnant this time exactly five years ago.

I was just starting to think about cots and buggies, cribs and baby grows.

I’d booked onto my antenatal classes, still weeks away, and was yet to confirm my last day at work.

 

This time exactly 5 years ago I felt a sudden panic – I wasn’t ready!

‘You’ve still got 10 weeks to go’ my colleagues told me as I began to fret about baby grows and nappies.

Yet I still felt a sense of urgency – perhaps my nesting instincts kicked in.

Despite this, I could have no idea what was to happen the very next day.

 

Having a premature baby sends you into a wild journey of uncertainty, shock and disbelief.

My son was born just hours after my waters had broken at home.

It didn’t seem real.

 

The room was filled with doctors, nurses and midwives as they attempted to resuscitate our tiny baby for six long minutes.

An alien looking capsule was bought into the room and our son was whisked away.

I was numb.

Just as quickly as the room had filled with people, quite suddenly we were alone.

I’d become a mum for the very first time,

but there were no cries of joy, no words of congratulations and I had no baby to hold.

 

This is how I became a mother, 5 years ago.

 

Becoming a parent to a baby born too soon;

having your baby taken away to neonatal intensive care, is one the hardest things a parent will ever have to do.

Saying goodbye to your tiny baby, leaving them alone in their incubator as you head home empty is perhaps even harder.

 

The NICU journey is tough, the effects of which cannot be underestimated and stay with you long after bringing your baby home.

But the NICU journey can also be special….

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I witnessed my superstar as he took his first breaths without the support of a ventilator, and I was overcome with pride.

I watched in wonder as he learned how to co-ordinate the feeding reflex, (usually learnt within the womb) and saw as his micro nappies began to fit his tiny body.

We spent hours and hours together in kangaroo cuddles as I tried to block out the sounds around me,

And his strength for someone so tiny amazed me every day.

 

Now, five years on, I remember just how far we have come.

He is desperate to be a real superhero, asking me every day how he can get special powers like Superman or Spider-man.

Ideally he would like to be able to swing on webs or fly through the sky,

But to me he is Samuel Superstar, and I think he’s pretty amazing already!

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

Premmie Mum: Things I Want you to Know

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

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

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

Smallest Things

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

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

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

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

Like what you’ve read? Then click the symbols to share on Twitter and Facebook!

#FlamingJune – Taking Action for NICU Mums

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

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

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

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

radio 5 live reception

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

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

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

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Just a Little Longer Please: Time After NICU

10 weeks early, my little baby, is with us far too soon.

I’d like to keep you safe inside,

Just a little longer please.

 

The nurse showed me your tiny face, wrapped in a blanket tight.

I reached out to touch your cheek, a mothers instinct strong.

I couldn’t touch you as you couldn’t stay, intensive care was needed.

I longed to shout as I watched the team whisked you away,

“just a little longer, please!”

Your little eyes were open, when we met in neonatal care.

Terrified I reached inside the incubator walls;

a tangled mess of tubes and wires, stick thin limbs so small.

Your tiny hand gripped my finger tight.

I prayed – fight my baby, fight.

 

How could I leave my baby?

I am empty now inside.

Emotion overwhelmed me, consumed with grief and loss.

How can I leave my baby – just a little longer please.

 

6 long days I waited, to hold you in my arms.

Lines and tubes obscured your face, the monitor alarmed.

Ding, ding, ding the ringing went, our time together up.

I whispered to my baby – “just a little longer please.”

3 hours became a golden rule, expressing on the clock.

Now we’re allowed kangaroo cuddles, time just for you and me.

But once again, three hours are up, is it really pumping time?!

I’d hold you close and feel your warmth, sometimes our only cuddle of the day.

I look to the nurse, she looks to the clock – “just a little longer please”.

 

Weeks and months in neonatal care, our journey has been immense.

You’ve grown and you are stronger, but my baby you’re still so small.

Home we go at eight weeks old, your due date still not reached.

 

At home we can be together, no monitors or alarms.

For the first time in forever I begin to be your mum.

I feel the pain we’ve been through, I stop to take a breath.

I realise now, what other NICU mums will know, my journey has just begun.

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More hospital trips and appointments,

Corrected age explained.

Coughs and colds take their toll on little preemie lungs.

 

My boss has started calling, return to work is near.

My maternity leave is over, but please it’s just too soon.

We’re only now just bonding and my nerves are much too frail.

It can’t be time to say goodbye, please just a little longer.

Just a little longer please.


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

Like what you’ve read? Then click the symbols to share on Twitter and Facebook!

More time for mums and their premature babies

It’s quite simple really, when your baby is born prematurely you miss out on weeks, often months of maternity leave.

Thousands of people have now signed to extend maternity leave for mothers of babies born too soon and this is what we are asking the government to do….

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.

Not yet signed the petition to give mums more time with their premature babies – SIGN NOW! 

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.