Tag Archives: Preemie

You’re not being silly, if you’re worried get checked out – Guest Blog

One thing I never knew when I was pregnant was that I could have a premature baby.

It just wasn’t something that I knew about and it wasn’t something that I knew happened to people…. until now.

I was 30 weeks pregnant and I had been experiencing a pain under my rib cage on the right side of my body. It was about 1:30am and I got up, took some painkillers and tried to go back to sleep. I was still experiencing some pain, but it wasn’t excruciatingly sore, more like a dull pain, so I just got on with it. I thought it was maybe just the baby kicking me in the ribs.

Throughout the morning it was much the same, just a dull pain, nothing more. By lunch time it was still there and got a little more intense, but nothing that I was crippling over in pain. I decided to call the midwives at my local hospital for some advise. Due to my gestation they asked if I could come in just to get checked over.

When we arrived I was hooked up to a machine to measure my contractions. Whenever I was experiencing the pain it wasn’t showing as a contraction and I felt a bit silly being there at that point. As they didn’t really know the cause of the problem the midwife called for a doctor. He examined me and told me that I was 3cm dilated!

Time was a blur from then on.

No one can ever prepare you for the mix of emotions that you experience at that point. Sadness, worry, fear, confusion.

The doctor was trying to arrange transport, either an ambulance or a helicopter to transfer me to a hospital with better facilities for a premature baby.

My waters decided to break though and we no longer had the option of being transferred. I was to deliver where I was.

A doctor came and explained that there could be a chance the baby might not survive, particularly as they didn’t know the reason to why I was delivering early, and we would be best to prepare ourselves for that.

A few hours later, my baby was born weighing 3lbs 9oz.

I got to look at him for about 10 seconds before he was put in an incubator and taken away. He was perfect, just tiny.

He was born at 7:30pm, but we weren’t allowed to go and see him until 11:00pm.

It was the longest wait of our lives. We were just in a room not knowing what was going on. Was he okay? Was he going to survive?

When we got to go and see him it was very difficult to watch. A doctor was stood over his incubator manually pumping air into his mouth to help him regulate his breathing.

Our son got transferred to another hospital at 1am and we were discharged the following morning and headed up to be with him.

He progressed every single day, and amazed us all. He moved onto a C-PAP within a couple of days and started off by taking 1ml of milk per hour! He had episodes of jaundice, but they didn’t last very long before he was back to normal.

It was hard to look at your baby lying in an incubator with the tiniest nappy I’d ever seen, with all sorts of wires going into him.

I’ll also never forget the beeping from the machines around him, I can sometimes still hear them.

The nurses were amazing, and really are a credit to the hospitals. I actually don’t think they get as much credit as they should. And I will never forget when our son stopped breathing for around 20 seconds…. (but it felt like a lifetime for us.) My partner and I were panicking and not knowing what to do, the nurse on the other hand was so calm and just held him, talked to him and tickled his feet and he started breathing again! I couldn’t believe it, I was so amazed. I think this was the moment when we knew he was going to be cheeky!

One thing that I never got to experience was the moment you get to hold your baby straight after giving birth. It was so difficult, you kind of feel disconnected to your newborn in a way. We had to wait 6 days before we could actually hold our son.

The moment was amazing, and I will remember it forever, but I just wish it could have been different. We had to be so careful with him and could only hold him sitting right next to the incubator as he was attached to so many different machines.

I would say that one of the hardest parts of having a premature baby is when you had to leave them in the hospital and drive home without them. I would look over my shoulder into the back seats and just wish he was there. It just felt unreal, or that your baby didn’t exist, because he should be with you wherever you were.

It annoys me when someone says “you’re lucky, at least your birth was easy and that you didn’t have to push out a 10lb baby!”

Trust me, I was not lucky. I would much rather of pushed out a 10lb healthy baby than have a traumatic birth and an ill baby.

So, I just want to raise awareness that if you’re in doubt about anything, go and get you and your baby checked over to prevent delivering early. I think back to that day all the time… what if I just got through the pain and stayed at home, what if I gave birth in the car on the way to the hospital… the list is endless.

I actually experienced the same pain under my rib cage about a week after giving birth. This time it was a very excruciating pain that wouldn’t go away. I went to A&E and I had pancreatitis, brought on by gallstones so I had to have my gallbladder removed. We think this was the reason why our son was born early as the doctors couldn’t find any other reason.

Our son spent a total of 6 weeks in hospital and is now a healthy 20 month old who is meeting all his milestones, apart from he has a delay with his speech. He is an amazing little boy and we are so thankful to have him in our lives.

Guest post by Robyn McIntyre

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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

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.

A very different Mother’s Day

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

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

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

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

And now he was there, fighting for his life.

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

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

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

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

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

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

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

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

 

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

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

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

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My first Mothers’ Day: in NICU

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

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

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

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

Not how it was meant to be

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

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

A day of mixed emotions

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

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

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

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

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

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

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

Struggling to connect

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

‘Seeing’ my baby for the first time

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

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

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

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

Today, aged one, Serena is healthy and happy

 

 

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!

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.

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

 

 

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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World Prematurity Month – November 2016

World Prematurity Month, a time for charities, health professionals, families and organisations around the world to come together to raise awareness of the 15 million babies born premature each year.

For me, a mother of two small boys born too soon, World Prematurity Month is an opportunity to reflect upon and highlight the realities of neonatal intensive care; a chance to shine a light on a hidden world and a journey that lasts long after bringing your baby home from hospital.

As expectant parents you make plans, you allow yourself to dream and imagine.. the first hold, the first baby grown, the first feed…. but for parents of premature babies all plans and dreams are shattered as the trauma of neonatal intensive care kicks in. You don’t recognise the world around you find yourself grieving for a baby take from you too soon and placed within the protective walls of an incubator – “A womb with a view” as a friend once said.

Smallest Things

On leaving neonatal care, full of conflicting emotions, you think that your NICU time is done… only there are new challenges to face.

Incubators, life support machines and monitors are behind you, but the memories and worries last. One day you feel brave enough to leave the house. You might visit a mum and baby group – and that’s when then it comes, the dreaded question…

“How old is your baby”?

I know I’m not alone in rounding down my baby’s age and even then I would see the quizzical. I would tell them that my baby was 6 months old, although developing according to his corrected age he looked and acted like a 3 month old.  Next comes the dilemma; either explain that he was born premature and risk being asked often insensitive and upsetting questions or endure the inevitable developmental comparisons. I didn’t like the feeling I was making excuses for my baby – ‘he’s six months old, but really he’s only three months’ I would hear myself saying.

With the benefit of hindsight (and a bit of preemie mum strength), I might now tell those mums that my baby hadn’t quite mastered sitting independently yet, but what he had mastered in those six months was to teach himself to breath, to learn to co-ordinate sucking and swallowing, to regulate his own heartrate and that he trebled his birth weight – pretty impressive milestones I would say!

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Unless you’ve had a baby in neonatal care, or a close relative in that position, you have no reason to know about life in NICU, so I tried to brushed remarks like ‘I could never have left my baby alone in hospital’ or ‘is he normal now?’ aside, but they hurt and I felt alone.

Not only was it the mum and baby groups I began to avoid though, community health professionals, who I thought would be there to support me, also seemed to lack awareness. I lost count of the number of times I was asked if he was smiling yet. Each time I gave the same response – ‘he hasn’t reached his due date yet’! I was forever asking that his weight be plotted according to his corrected age and the six week check was laughable. I felt like putting a big sticker on the front of his read book saying “remember I’m a premature baby!” (Which is why, years later I developed the “Preemie Proud” Red Book stickers!)

I launched The Smallest Things blog two years ago, writing about my own experiences to raise awareness of premature birth and the challenges faced by families following neonatal care. This World Prematurity Month I will continue to write, as well as sharing guest blogs, about a journey that does not end at the hospital doors.

Raising Awareness really does help to make the Smallest Things matter – even if only to help with the dreaded “how old is your baby?” question!

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Don’t forget to follow The Smallest Things on our Facebook Page for all the latest stories and news for World Prematurity Month!

 

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

My day as a NICU Mummy

Guest post by Becca Hilton, Mum of Max, as Part of World Prematurity Month 2016

Waking up from what feels like a continuous bad dream, the house is filled with silence yet I have a crib next to my bed and bottles on the side.

I switch on the television for some company and begin to express milk ready to take with me to the hospital. Doing this brings me some sort of comfort and helps me to feel closer to my son.

I arrive at the hospital, my tummy fills with butterflies and I cannot race quickly enough to the door. Lovely nurses buzz me in and welcome me with a smile and a chirpy, “hello mummy”! My heart races as I walk over to him, so perfect laying there calm but with a maze of wires surrounding him. I gaze over at his chart to check his weight and to see which nurse will be caring for him today. I wash my hands and warm them up ready to let my son know that I am there.

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I stroke his ear and watch a small smirk raise from the side of his mouth, he knows his mummy is with him. The nurses always encourage me to be ‘hands on’ with him and help do the baby duties whilst I am there. This makes me feel so happy; I feel like I am finally bonding with him, I now feel like his mummy.

First things first its temperature check time, then nappy change (I can never cover him in time and he wees all over himself ha-ha, typical boy!) As I change his nappy, rearranging the wires around him I can’t help but think how delicate hi is and it’s amazing that something so small can be so strong and fight so hard, a true hero.

Sounds of beeps fill the room and alarms flash and glow bright, what a surreal situation, I can’t believe I’m here. I look around and see familiar faces, some of joy and some of heartache, who would have known that some of them have become friends for life and we share a bond like not many people do.

It’s feed time! I get excited at the thought of helping. At this point max is too small to be bottle or breast fed so he is fed through a tube. I watch the milk slowly go down as I hold the syringe, he lays there so peaceful, oblivious to the chaos around him, my little sleeping beauty.

How exciting, it’s time for Max’s first bath! I’m giddy with excitement. I start to undress Max and the nurse wraps him up in his towel, its hair wash time first. He wriggles as the water drips down the side of his face. We dry his hair and lower him into the water; being careful to keep the wires over the side of the bath. Max kicks his legs out and makes a small slash, tears fill my eyes, I couldn’t feel more proud to be his mum. I wrap the towel around him and embrace him in my arms, at this point I don’t want to let him go.

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All cosy and snug, he keeps warm in his little nest that’s in the incubator. He stretches his legs out and lets out a little sigh and a yawn, he looks so content. I sit back and look around and think what an amazing place this actually is. If it wasn’t for the love, care and support that we have received as a family I don’t know what we would do.

Looking at the clock, it’s nearly time to say goodbye, dread fills my entire being. One last cuddle, I smell his hair and stroke his cheek and whisper I love you. I put him back and say god bless and goodbye, mummy will see you in the morning!

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As I walk to the carpark to be picked up I feel sad and withdrawn, but this is normal right? I don’t know any different. But with reassurance from my husband he reminds me that when the time is right he will be home and he’s in the best place for now.

Early night for me, dreaming of what tomorrow will bring? We will have to wait and see as it’s all a mystery, a day in the life of a NICU mummy. No two days are the same, there may be ups and downs, but they are all part of your journey – be proud! I know I am.

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If you’d like to share a story to raise awareness through World Prematurity Month, please email Catriona at 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

Small but Mighty!

Making a Difference!

Sometimes it really is the little things that can make a difference… and for the parents of premature babies we hope that our new “Preemie Proud” stickers will make a BIG difference.

Acting as a visible reminder, our Smallest Things Preemie Proud stickers are there to alert health care professionals to a babies NICU history. The support for the stickers has been amazing, with extremely positive feedback; and we offer our sincere thanks to all our Smallest Things mums who have contributed to their design.

Preemie Proud!

Used to personalise a baby’s red books, parents can choose from a series of stickers all of which are designed to meet the particular needs of NICU babies and their families.

Our “Preemie Proud” stickers are designed to –

  • Raise awareness of premature birth
  • Prompt a conversation between health professional and parent about their neonatal care journey
  • Engage health professionals in learning more about the realities of neonatal care
  • Highlight the extra support parents of premature babies may need
  • Increase awareness that parents following neonatal intensive care are at greater risk of developing postnatal depression, anxiety and PTSD
  • Offer a gentle reminder to use a babies corrected age when plotting their weight on a growth chart
  • … and to say how amazing our tiny babies are!

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Small but Mighty!

A sticker; it’s only a small and a simple idea, but it could make a dramatic difference to the lives of thousands NICU families.

Each year 80,000 babies are born requiring specialist neonatal care in the UK, with 20,000 of them spending a prolonged period in hospital…. and it is our aim that “Preemie Proud” sticker packs are available to each and every one of them.

Help make the Smallest Things matter!

It’s a big task, so we are excited to have begun our Crowdfunding drive, fundraising for the launch of the Preemie Proud sticker campaign.

If you would like to see Preemie Proud stickers available in all UK NICUs and to all parents of premature babies them please do consider donating a small sum to the campaign below.

images (1)http://www.justgiving.com/crowdfunding/Smallest-Things

 

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.

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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.

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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