Normality After Neonatal Care

There is normality after NICU I promise… 

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

Guest Post

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

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

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

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

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

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

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

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

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

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

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

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

But.. he did start to grow. 

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

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

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

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

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

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

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

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

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

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

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

Our Miracle Story

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

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

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

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

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

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

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

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

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

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

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

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

With special thanks to Sara Hibbs for sharing her story. 

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

Sara

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Mum writes story for her Premature Baby 

Nicholas Charles Johnson – This is Your Story

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Why not help us raise awareness – Share Nicholas’s journey right now by pressing the Facebook and Twitter buttons!

Why we Should Make #TimeToTalk Following Premature Birth 

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


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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

Lynsay starts by telling us a bit about her pregnancy:

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

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

Twin to Twin Transfusion:

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

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

Weekly Scans:

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

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

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

“… the most traumatic experience of my life”

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


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

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

Neonatal Intensive Care:

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


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

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

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

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

A Rocky Road:

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


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

Blessed – A Family of Four:

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


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

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

Lynsay 

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

If you’d like to help Lynsay raise awareness of TTTS then don’t forget, sharing is caring! Hit the Facebook and Twitter buttons now to SHARE! 

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

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

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

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

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

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

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

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


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


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

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

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


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

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

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

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


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

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


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

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

With thanks to mum Shelley Watson for sharing her story. 

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Premature Birth – Through an Obstetricians Eyes

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

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

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

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

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


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

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

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

A knock on the door disturbs the silence.

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

“Tea and toast Mummy?”

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


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

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


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


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

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

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

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

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

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

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

#26milesfor26weeks


 

 

Father of Premature Twins Says Mums Need Their Support Too

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


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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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


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

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

With special thanks for to Tony for sharing his story. 

 

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

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


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

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

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

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

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

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

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

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


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

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

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


Expressing for Baby Noah in Neonatal Intensive Care

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


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


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


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


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

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


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


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Premature Babies Recognised in Parenting Blog Awards

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


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

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


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

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

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

Parenting Under Pressure: Becoming a Mum in Neonatal Intensive Care

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

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

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


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

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

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

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


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

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

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


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

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

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


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

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

So thank you to the neonatal nurses, who not only care for our tiny babies, but who help us to be the parents we so desperately want to be. 
If you like this post and would like to help raise awareness of life after premature birth then please use the Facebook & Twitter buttons to SHARE!

Top 5 Preemie Blogs 2016!

This year we’ve published blogs on just about all aspects of having a premature baby in neonatal intensive care – take a look at our most read blogs this year!

5. TOP TEN! | What not to say to a preemie mum 

At least you can go home and get a good night sleep” – firstly, you don’t want to go home; going home means you have to leave your baby. Secondly – a good night sleep! Mothers of premature babies express milk every three hours to enable their babies to have breast milk via a naso-gastric feeding tube. The expressing routine is akin to the routine of feeding a new born baby, only you don’t have your baby with you, no babies cry at night to wake you to feed, just your alarm telling you its time to get up and express again. [Read full post here]

4. Why Don’t We Speak About Premature Birth?

How do you share these experiences with other new mums? There really is no comparrion in our journeys. When you do describe some of your time in neonatal care that invariably leads to questions; sometimes well-meaning, but often insensitive questions – “Is your baby normal now?” is a question that has stayed with me as well as the assistant in a well know department store who shouted across the shop, beckoning her colleague to “come and have a look at this preemie baby!”… [Read full post here]

3. Look but Don’t Touch – Life After Neonatal Care

From the day I felt more confident to take Luca out (around his due date), I’ve faced a constant stream of people trying to touch my baby or asking personal questions. For some reason, a teeny baby seems to be public property. [Read full post here]

2. My Missing Trimester

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

1. Lost – No time to decorate the nursery

2. I hadn’t even thought about packing a hospital bag…. [Read full post here]


And the most read post in 2016…
1. PTSD: The Hidden Cost of NICU 

NICU remains a mysterious and unknown place to those who have not lived it and for that reason perhaps it isn’t immediately obvious to see a link between time in NICU and PTSD. Raising awareness and speaking honestly about our experience and the true realities of neonatal care is therefore crucial:

Of the uncertainly and unknown. The panic that sets in when your baby is not in their incubator space when you arrive, have they been moved – is the news good of bad?

Of the physical pain at having to leave your new born everyday. The feelings of emptiness and loss.

Of the ups and downs; the lines, wires, monitors and alarms.

Of the hot, close, claustrophobic environment.

The security buzzers at the entrance and of the constant rigorous hand washing.

Feeling watched as you attend to the simplest of cares such as changing a nappy – of struggling with the simplest of cares such as changing a nappy!

And the feelings of guilt, jealousy, grief and loss that go hand-in-hand and in stark contrast to the feelings of joy, anticipation and hope.

I will always be a NICU mum; and PTSD will always be lurking around the corner.

PTSD: The Hidden Cost of NICU [Read the full post here]

Like the posts you’ve read? Would like to help us raise awareness of premature birth and beyond? Then use the Facebook and Twitter buttons to SHARE! 

Top Ten! | Smallest Things 2016 Moments 

It’s been quite a year for The Smallest Things – Check out our Top Ten Moments!

  1. 126,000 signatures! Our petition to extend maternity leave for mothers of babies born premature has received overwhelming support this year and has now been handed into Minister Margot James MP.
  2. In the News! In recent months The Smallest Things campaign to extend leave for parents of premature babies has rarely been out of the news! Covered by Sky News, BBC News, Victoria Derbyshire, ITV News, Channel 5 News, BBC Radio 4, BBC Radio 5 Live, BBC Radio London, Heart FM, Smooth FM, The Times, The Mirror, The Sun, The Daily Record…. it really has been incredible! 
  3. Launch of our Preemie Proud Red Book Stickers! In September we launched our Preemie Proud Red Book stickers. Used to personalise a baby’s read book health records, the stickers act as a clear reminder to health professional of a babies NICU history. The stickers have been hugely popular and we will be able to offer them to parents again in the New Year. 
  4. Maternity and Paternity (Premature Birth) Bill. On 16 October 2016 Steve Reed MP introduced the #PrematurityBill to the House of Commons, calling for a change in current parental leave legislation. Receiving cross-party support, the Bill will now have its second reading on the 24 March 2017. 
  5. Meeting with the Minister! Meeting with Margot James MP really was a top moment of 2016! We had been trying to secure a meeting with the business minister for over a year, so to be able to finally sit down with the minister to discus our maternity leave campaign was a huge step.
  6. Mumsnet Best Campaigner Award! In November, The Smallest Things Founder Catriona Ogilvy collected the Mumsnest Best Campaigner Award at the prestigious blogging awards. 
  7. Guest Posts In 2016 we have published more parent stories on our Facebook page and website. This have been really successful, offering families support through sharing of experiences and raising awareness of the neonatal journey.
  8. Maternal Mental Health: 2 in 5 mothers experience mental health difficulties following premature birth and in 2016 we have been raising awareness. Smallest Things supporters have bravely shared their stories of PTSD following premature birth in the national press and our Preemie Proud stickers reminds health visitors that preemie mums may need more support. 
  9. World Prematurity Month and the #NotMatLeave campaign! Throughout November we joined other organisations and volunteers to celebrate World Prematurity Month. We launched our #NotMatLeave campaign, sharing pictures portraying why time spent in neonatal intensive care is not maternity leave.
  10. Scottish Parliament Debate The Smallest Things campaign! And lastly, 2016 ended with The Smallest Things campaign to extend maternity and paternity leave being debated by MSP’s in The Scottish parliament!

Why we support the #NotMatLeave Campaign for Premature Babies – Jack’s Story

On World Prematurity Day 2015, I found myself launched into this new world of prematurity as I sat in the High Dependancy Unit of Royal Derby Hospital. I had been for my routine midwife appointment that morning and my blood pressure was slightly elevated and there was protein in my urine.

“Just pop to the hospital and get monitored and see me in a week” she’d said. 

And yet there I was hooked up to 4 drips being told that my baby would be delivered within the next 24 hours. Pre-eclampsia and HELLP they said.

Jack made his dramatic entrance into the world on 18th November 2015 at 1:41am by c-section with a very surprised “Oh! Oh!” as if he was a little miffed at his eviction. He was just 28 weeks and 6 days gestation but hearing his voice was reassuring. And then he was whisked away, all 2 lb 6 oz of him. I was empty and lost.


I didn’t get to see my boy again until he was 20 hours old. I hadn’t written a birth plan but I knew I’d wanted kangaroo care immediately after birth. I had to wait a week for that first precious hold, because we had to wait until he was off the ventilator, but it was glorious. His head fit in one hand and his body fit in the other. 

We were told that Jack would most likely be in the NICU until his original due date or thereabouts. I started to get upset. 

Gone were my dreams of a taking a healthy baby home for unlimited cuddles, learning how to breastfeed, going for walks in the pram round our neighbourhood, visitors coming over and cooing.

Instead I was sent home without my baby, sobbing hysterically as I spotted other people leaving with theirs bundled up in the car seat. I woke up at least twice a night to nourish my child with breast milk but with an alarm and a breast pump instead of having him there.


In the NICU I waited for permission to hold my child. My husband learned how to tube-feed. We watched and waited as Jack progressed through ventilation, bipap, cpap, highflow, low flow, back to cpap after his 8 week jabs set him back a bit, back to high flow then low flow.

Jack struggled to breast feed so he learned to take a bottle and finally after 89 days, he was discharged with home oxygen of 0.2 litres on Valentines Day 2016!

I’d lost 3 months of my precious maternity leave and originally I’d only intended to take the 9 months that are paid. But, once Jack was home, I developed severe anxiety and PTSD and made the decision that I’d have to take the full year, even though the last 3 months are unpaid. It seemed so unfair that we’d lost precious time not even properly parenting and my husband had to take 2 weeks annual leave to be there when Jack first came home because the law states the father takes his paternity within 8 weeks of the child’s birth.

So this is why I support the #NotMatLeave campaign to extend leave for premmie families. 
As well as losing 3 months of my maternity leave going to and fro from the NICU everyday, Jack was on oxygen until he was 7.5 months old. He is developmentally 3 months behind his peers and how could I possibly go back to work when he’s only just off oxygen and not even sitting yet? When we’re still having regular hospital appointments that are a direct result of his prematurity? He still needs to have a hernia repair operation at the start of next year.


Jack is now a year old and completely and utterly wonderful. You can follow our story at http://www.beyondthenicu.com or follow our journey on Facebook.   

He can now sit unaided and is starting to eat proper food after a lot of feeding and weight gain issues when he first came home. And me, I feel like I am progressing a little bit past my anxiety and PTSD.

So please, support The Smallest Things campaign for extended maternity leave for premmie parents. It’s just so important.

If you haven’t signed the petition, you can sign it here – Extend maternity leave for mothers of premature babies
 

Premature Twins: Together for Christmas!

My identical twins Sonny and Freddie were born at 28 weeks on 27th September 2015.
I had had a very complicated pregnancy. 

After being diagnosed with Twin to Twin Transfusion Syndrome at 17 weeks I needed emergency surgery to split my placenta. The surgery would allow my babies to get equal amounts from my placenta, which because it wasn’t working properly my twins would not have survived unless I allowed the risky surgery to happen. 

Following the surgery I was told the babies may come early as I had a premature rupture of my waters, but I was not prepared when at 28 weeks I was diagnosed with an infection and within 2 hours the c-section was happening!

The boys were born, Sonny weighing 1lb 13oz and Freddie weighing 1lb 5oz. From the beginning they were fighting to stay with us.

After 64 days Sonny was discharged home weighing just 4lb 12os and on constant oxygen – we had our first boy home! 

Freddie suffered from NEC, a life threatening bowel condition, and underwent emergency surgery at six weeks, followed by further surgery a week after. The week before Christmas we were dealt the blow that he wouldn’t be coming home and in fact could be still in hospital for Spring as they couldn’t be sure when his reversal surgery would be.

Christmas Day 2015 – we woke up at home with Sonny. From there we spent the day in NICU with Freddie. We were able to get some pictures of them together, but leaving Freddie behind at the hospital on Christmas Day still goes down as one of the hardest things I have ever done.


Fast forward a year and it’s a whole different story! 

Freddie had his reversal and closure surgery on 6th January and after 126 days was finally discharged home to be with us all on 30th January.

Finally home together


I now have two healthy active lovely boys and cannot wait to spend our first Christmas as a family of four!


To anyone going through a stay in NICU this year,just try to stay positive and hopeful that by next Christmas you will be in a totally different place. Our little babies are such fighters and a lot of the time are so much stronger than we can ever realise. 

I wish you all a merry Christmas. 


With thanks to Nicola for sharing her Christmas NICU Journey 

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

Like what you’ve read? Would like to help us raise awareness of premature birth? Then use the Facebook & Twitter buttons to SHARE this post. 

Born Premature: A Families Momentous Christmas 

Christmas Day 2013 was pretty momentous for us. Our son Samuel was born at 2pm, 12 weeks early, weighing 2lbs 3oz.

I was not expecting to be on an operating table delivering our son at the time most people are tucking into their Christmas dinner!
The week before Christmas, at 27 weeks pregnant, I ended up in hospital after feeling unwell in the night with a sharp pain in my ribs. I had a general feeling of something being wrong. The doctors conducted tests and concluded it was preeclampsia. They told me it was a serious condition elevating blood pressure, requiring bed rest, restricting the babys growth, and that the only way to cure it was to deliver our baby.


To cut a long story short, I was admitted to hospital indefinitely.

On Christmas Eve I was transferred to another hospital where they had more specialist care and more beds available in the neonatal intensive care unit.

And then on Christmas morning I was told that I was too sick to keep going. They had to perform an emergency c-section to save me and my baby.

The most unforgettable moment for me was when they sent a pediatrician to tell us all about the risks the baby would face being born so prematurely. It felt as though he stood there for an age, listing condition after condition that we had never heard of, that could potentially kill our child.

The operation went well and our Christmas miracle arrived. It was fitting that he was born to the Bon Jovi song ‘Livin’ on a Prayer!’

We had asked friends and family for prayers and believed that is what pulled us through! We briefly saw him being held up and making a little cry before he was rushed off to NNU. I didn’t even get to hold my baby.

Later on I was able to go and see my son. I feel sad to say I barely remember it. I was on a lot of medication and still recovering. I remember having to scrub my hands with hospital soap and lots of scary looking machines everywhere. It was overwhelming, and honestly, frightening. I looked at this tiny little thing in the incubator and thought ‘that’s my baby.’

We were congratulated by everyone on our arrival, but I felt that this was inappropriate when we didn’t even know if our son would survive.


Boxing day was the worst for me. The medication was wearing off and the reality was sinking in. A doctor came to take some bloods from him. It was the first time I heard my son cry properly. I couldn’t hold him and comfort him. I felt useless. I had a mental break that night after my family left. I was on the observation unit still, surrounded by new mums with their babies. There was one mother who refused to pick up and hold her crying baby. That broke me. I would have given anything to hold my baby, but he was fighting for his life, in another ward.

Samuel had a few more scares over the next few days. At one point they thought he had NEC because he didn’t produce a poo for a few days. I can honestly say I’ve never been more overjoyed to hear news of someone doing a poo! There was also talk of a blood transfusion, luckily he didn’t need that, and he was actually off his ventilator within 2 days, which was miraculous.

I got to hold Samuel on New Years Eve. It was the most magical thing I have ever experienced. There aren’t words that can accurately describe the range of emotions I felt at that moment.


Eventually Samuel stabilised enough so that on the 6th January he was able to be transferred by ambulance to our local hospital. He had a few more scares with infections and breathing issues, but eventually he was able to come home a week before his due date on March 10th.

Looking at my happy healthy (almost!) 3 year old now, I can hardly believe he came through all that. I am so proud of him and this experience has changed my life in many ways. I appreciate life so much more, I don’t take things for granted as much!


We celebrate every milestone, and achievement no matter how small. I don’t know if we will have any more children in future because of the risks, but for now, I can say I am blessed and happy with my Christmas miracle.


Christmas will never be the same for us again that’s for sure! For anyone going through Christmas in NNU, I just want to say celebrate the tiniest of achievements and never doubt how strong you and your baby are. Having a premamture baby has been the most miraculous experience of my life.

Born at 27 weeks: Harrison’s First Christmas at Home

Hello my name is Laura, mother of my 27 weeker Harrison who was born on the 13th December 2015 weighing just 1lb 8oz. 


I had been admitted to hospital on the 2nd of December when I was 25 weeks gestation. I was told they would have to deliver the baby the next day due to severe IUGR. It turned out that I have a blood disorder called Hughes Syndrome which only occurs in pregnancy. It basically stops the blood flow to the baby and stops them from growing. 

I had to leave work that day and started my maternity leave. After spending 2 weeks in the hospital away from my family and my 4 year old, Harrison was delivered by emergency c section. He was delivered in his sac and he came out crying. It was the best thing I’ve ever heard!

Then he was rushed off to the neonatal intensive care unit. 


It was going to be our first Christmas in our new home. Being excited by our first Christmas and the anticipation of a new baby I’d put up the tree on the 1st! Now I waited Days in hospital before I was finally discharged – without my baby. 

I had to come home to a house full of Christmas, but it just didn’t feel like it. It’s the time of year for joy and happiness and to be with your family… and I just didn’t feel any of it. I wanted my baby home. I wanted our first Christmas to be perfect… after all he wasn’t due until March! 

I got re-admitted to hospital due to an infection. I hoped and prayed I’d be discharged in time, but this was literally just days before Christmas and I was too poorly. The thought of not being able to see Harrison absolutely killed me, so when we all opened our presents on Christmas morning I had to put on a brave face. I tried to enjoy it but it was so heartbreaking. I rang the unit to see how Harrison was, he was doing fine which made me feel a little bit better.  My mum, dad and partner spent Christmas evening at the hospital with him, I didn’t want him being on his own on Christmas day. 

They sent me some pictures. Harrison had a little Christmas hat on and Christmas blankets in his incubator. He had got a little goody bag and the nurses had made a bauble for me with his hand and foot print on it. It was such a nice thought and I’ll keep it forever.

Having a baby on the unit at Christmas is hard to deal with, but it’s even worse when you physically can’t go and see them. 

This Christmas is going to be extra special. I know it’s not his first Christmas, but to me it is and he’s going to be at home. It’s going to be the best Christmas ever!!


I can enjoy it this year. I’m already excited and in the Christmas spirit 😊  

If you enjoyed reading Laura’s story and would like to help us raise awareness of babies in NICU this Christmas, then please click on the Facebook and Twitter buttons to SHARE! 

The #NotMatLeave Camapign: Mums of Premature Babies Meet with Minister Margot James MP

On Dec 6 representatives from The Smallest Things, Catriona Ogilvy and Sarah Miles, together with Bliss CEO Caroline Davey and MP Steve Reed met with Business Minister Margot James MP. Responsible, amongst other things, for parental leave, Ms James discussed our campaign to extend maternity and paternity leave for families affected by premature birth.


The minister congratulated Steve on bringing such an important issue before MPs and for raising awareness of the #NotMatLeave campaign. We shared our stories, describing the hidden world of neonatal intensive care and the specific needs of premature babies and their families. We spoke about the emotional impact, with 2 in 5 mothers experiencing mental health difficulties following NICU, as well as the financial pressures we know are placed upon families during this traumatic time. We discussed the need for mothers and their babies to have the vital time to bond following discharge home from hospital; time for babies to develop, to grow and to be ready for the next stage in childhood development. And spoke about the mums who have no option but to leave the work force.

Steve Reed MP, Margot James MP, Catriona Ogilvy, Sarah Miles, Caroline Davey

Speaking after the event, Smallest Things founder Catriona Ogilvy said, “Ms James spent a considerable amount of time talking, listening and taking a genuine interest in our campaign. It is only the first step towards making a change, but meeting with the Minister was a necessary and important step and we are thankful to Ms James and her staff for taking the time to meet with us.”

Ms James MP engaged with our stories, eager for more information. She told us that we had a compelling argument for the approximately 30,000 babies born too soon in the UK each year and although it is far too soon for us to be hopeful, the meeting was extremely positive! 

We look forward to hearing back from the Minister in the New Year….


You can still sign the petition, calling upon the Government to Extend Maternity Leave for Mothers of Premature Babies!

You may like – Longer Mat Leave for Preemie Mums: 5 Reasons Why!


The Twelve Days of NICU

The Twelve Days of NICU

🎶 On the 1st Day of NICU, the hospital gave to me…. 🎶

A Tiny, Little, Early baby!

On the 2nd Day of NICU, the hospital gave to me…. 2 Tiny Feet and a Tiny, Little, Early Baby!

On the 3rd Day of NICU, the hospital gave to me…. 3 Incubators, 2 Tiny Feet and a Tiny, Little, Early Baby!

On the 4th Day of NICU, the hospital gave to me…. 4 Breathing Tubes, 3 Incubators, 2 Tiny Feet and a Tiny, Little, Early Baby!

On the 5th Day of NICU, the hospital gave to me…. 5 FIRST HOLDS!!!! 4 Breathing Tubes, 3 Incubators, 2 Tiny Feet and a Tiny, Little, Early Baby!

On the 6th Day of NICU, the hospital gave to me…. 6 Jaundice Lights, 5 FIRST HOLDS!!!! 4 Breathing Tubes, 3 Incubators, 2 Tiny Feet and a Tiny, Little, Early Baby!

On the 7th Day of NICU, the hospital gave to me…. 7 Kangaroo Cuddles,6 Jaundice Lights, 5 FIRST HOLDS!!!! 4 Breathing Tubes, 3 Incubators, 2 Tiny Feet and a Tiny, Little, Early Baby!

On the 8th Day of NICU, the hospital gave to me…. 8 Mums Expressing, 7 Kangaroo Cuddles, 6 Jaundice Lights, 5 FIRST HOLDS!!!! 4 Breathing Tubes, 3 Incubators, 2 Tiny Feet and a Tiny, Little, Early Baby!

On the 9th Day of NICU, the hospital gave to me…. 9 Monitors Beeping, 8 Mums Expressing, 7 Kangaroo Cuddles, 6 Jaundice Lights, 5 FIRST HOLDS!!!! 4 Breathing Tubes, 3 Incubators, 2 Tiny Feet and a Tiny, Little, Early Baby!

On the 10th Day of NICU, the hospital gave to me…. 10 weeks early, 9 Monitors Beeping, 8 Mums Expressing, 7 Kangaroo Cuddles, 6 Jaundice Lights, 5 FIRST HOLDS!!!! 4 Breathing Tubes, 3 Incubators, 2 Tiny Feet and a Tiny, Little, Early Baby!

On the 11th Day of NICUthe hospital gave to me…. 11 NICU Nurses, 10 weeks early, 9 Monitors Beeping, 8 Mums Expressing, 7 Kangaroo Cuddles, 6 Jaundice Lights, 5 FIRST HOLDS!!!! 4 Breathing Tubes, 3 Incubators, 2 Tiny Feet and a Tiny, Little, Early Baby!
On the 12th Day of NICU, the hospital gave to me…. 12 Micro Nappies, 11 NICU Nurses, 10 weeks early, 9 Monitors Beeping, 8 Mums Expressing, 7 Kangaroo Cuddles, 6 Jaundice Lights, 5 FIRST HOLDS!!! 4 Breathing Tubes, 3 Incubators, 2 Tiny Feet and a Tiny, Little, Early Baby!

🎶🎶🎶🎶🎶🎶🎶🎶

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