Tag Archives: premature birth

Losing yourself after neonatal intensive care – Sophie’s story

It’s hard bringing a premature baby home from hospital. The journey and worries go on. I’m trying to be honest with myself, I am struggling. Last December my son Bertie was born prematurely at just 27 weeks gestation. I’d had a complex pregnancy with bleeding from 13 weeks and placenta problems. I’d had numerous hospital stays and each time came away with different reasons. To this day the reason why is still unknown, but essentially my placenta was riddled with infections and I contracted sepsis.

Bertie was born by emergency C section at Gloucester Royal Hospital at 17.18. Later that evening, he was transferred to Bristol St Michaels, and then back to GRH after 8 days. I’ve said it a million times, and I’ll say it a million more, the doctors and nurses who work at both these hospitals are wonderful, wonderful humans who ultimately saved Bertie’s life. We are forever grateful. 

Bertie spent a total of 120 days in hospital. It really was one step forward, two (or what felt like many more) steps back. This is something we were told right from the beginning and it really is true. He had countless procedures, blood tests, x rays, ultra sounds and blood transfusions. He contracted the dreaded cold in hospital, twice. Intubated, CPAP, high flow and low flow; all terms I knew nothing about before, but will now forever be etched in my mind. NICU nurses become your most trusted friends and make such an impact on your day, time spent on the unit and, this sounds corny, but the rest of your life! I will never forget them. Other mums are like angels. Speaking to mums who “get it” is the most comforting thing. All NICU journeys are different but there seems to be an unspoken understanding of what goes on behind those closed doors. I have made friends for life and I am eternally grateful for their support. I hope I helped them, the way they help me. 

We bought Bertie home on 8 April 2018. At last we could be together as a family of 4. Mike, Charlie, Bertie and me. I thought the stay in hospital was the hardest thing I’d ever done, juggling a toddler at home and a baby in hospital was heart breaking and watching your baby constantly fight is indescribable. Mike and I were like ships in the night. I’d be at the hospital during the day, he would go to work, then he’d go the hospital in the evening and I’d be home with Charlie. We’d be lucky to eat a microwave meal together! The uncertainty of Bertie’s health and development was always on my mind, but bringing home a premature baby who has chronic lung disease and required 24/7 oxygen, who is so susceptible to illnesses and who is “failing to thrive” was and is, much harder. 

I cannot comprehend why being at home as a family would be harder than our time in hospital, but it is. I feel a huge amount of guilt for saying that, along with a lot of other things. Like not spending enough time with Charlie, not spending enough time with Bertie, not being a “good” wife, the list goes on. One of my biggest guilt is why couldn’t I carry Bertie to full term. I do know that it is not my fault and that I did nothing “wrong”, but I still feel guilt. I was told by a wonderful woman recently that we must accept our feelings and it is just how we feel. I am working on that. 

We’ve been home for 7 months now. In that time we’ve had 2 overnight stays in hospital, endless appointments with physios, occupational therapists, dieticians and Bertie’s fantastic consultant. Home visits from our amazing respiratory nurse, which always felt like a visit from a friend, but also difficult visits from health visitors who had little understanding of pre term babies. I feel immense pressure for Bertie to be “well”. I worry. I am swamped by worry. Worry that he is not developing as he is should be, worry that he will have long term effects of being premature, worry that I’m not giving him enough attention, worrying about his weight, worry that he might get ill again, worrying about more hospital admissions and worry that in all this I’m neglecting his older brother Charlie. Going into the winter is an exceptionally worrying time, a simple cold could put Bertie in hospital. It’s already happened twice and it’s not even been the cough and cold season yet.

In August, amazingly Bertie was able to wean off his oxygen in the day. Then in October he has come off oxygen at night too. This was a massive milestone for Bertie! I was so pleased but with this came more anxiety. The oxygen is almost a safety net, a comfort maybe. Take it away, it’s another worry. A huge ongoing battle for Bertie is his weight and feeding, he takes very little milk and has very little food. He has awful reflux which is not helped by a persistent cough. Recently we had a particularly bad spell and he lost weight. I feel like we go round in circles and it is never ending.

There is a massive lack of understanding and knowledge about premature birth, our babies and life after NICU. By sharing our story I want to help people going through the same and give knowledge to others. One of my biggest frustrations is that I feel a lot of people assume that just because we are home now that Bertie is “fine” and like a “normal” baby. I hope this at least goes a little way in showing this is not the case.

Along with guilt and worry, I am filled with jealousy. When I walk through the supermarket and see a heavily pregnant woman, I feel jealous that they’ve carried their baby further than I did, jealous that they will have a new born baby to enjoy and jealous that they don’t know about the NICU experience. I then I feel bad for having those thoughts and feelings. Another seemingly never ending circle that I hope with time will end.

I am grateful beyond belief to the wonderful NHS. It is still early days for me. I have two beautiful sons, I am so lucky, but also feel like I have lost who I am. In sharing our story hope to find myself again.

with thanks to Sophie for sharing her story, raising awareness of the ongoing needs of families following premature birth and neonatal intensive care.

 

The Rainbow after the Storm

We had suffered the unimaginable. I will never ever know how we survived Blake, but what I did know was I was in an extremely dark place alongside Graham, my husband, and my mum. I was very concerned about both of them, every minute of every hour. It kept me going in a strange way, I kind of put myself to one side. I suppose this was self preservation at it’s very best.
How does anyone know how they would react to such a horrendous life even? It’s unbearable to even think about it. We live this every single day and will do for the rest of our lives. To this very day, I haven’t fully accepted that our beautiful Blake lost his life and I now know that I never will.
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Blake, born at 30 weeks, in Neonatal Care

Blake suffered from an enlarged heart which took his life aged just 5 months old.
I couldn’t even begin to process what had happened for such a long time. I didn’t return to work for 10 months and couldn’t do so until we had the inquest and learned what had happened to our boy. How does a parent begin to cope with watching their 5 month old baby die in a bay in A&E surrounded by staff trying to keep him alive, battling so hard to save his life, only to watch them fall apart from when he became unresponsive. When I say fall apart, what I mean is they were immensely professional but naturally devastated. I entered a world that I never knew existed, a big black bubble of hell. It’s an indescribable place. I wanted to lie down and die, but I also knew that I didn’t want my son to ever feel responsible for something so harrowing. That may not make any sense to you, but it makes perfect sense to me. The human mind is a complex thing and my mind had convinced me that I had been in an accident, that I was in a coma and all of this was a dream.
I knew in my heart that I wanted to try again for a sibling for Blake, but I couldn’t bare experiencing any more heart break. As we awaited the inquest and I started to make tentative steps in contacting the IVF clinic. We faced a decision of remaining childless on earth or taking the huge risk of trying for another baby. I was determined to get us there, it’s not natural to have empty arms after becoming parents, it’s beyond life changingly painful, so our journey for Flynn started.
Our first IVF cycle was a success, but unfortunately I suffered a
chemical pregnancy and the pregnancy did not continue. Naturally we were devastated and I had to wait a couple of months to try again and a further 2 months of daily injections of fertility drugs. Round two was successful and resulted in a healthy pregnancy!
After a very anxious pregnancy Flynn was born at 32 weeks gestation weighing a tiny but
healthy 3lb 90z.
Flynn NICU

Flynn, born at 32 weeks

History repeated itself in more ways than one. The prematurity, the delivery, the fear for our new born son and the fear of his medical checks. We knew Flynn would be
admitted to NICU, but this time we knew what to expect and we were familiar with the staff and
the journey, which was a huge comfort.
Our NICU journey
The staff on the unit were delighted to see us. They had been aware of what of Blake’s death and they were delighted to see that we had found the strength to have another child. After all, they loved Blake all his life and now they were looking after his sibling, Flynn.

Being born prematurely, Flynn had to endure the same as Blake on NICU. He suffered with jaundice and received phototherapy, he was unable to regulate his temperature so his little home was an incubator and he was cuddled up to IV’s and lines and fed through a through a tube.

Flynn SCBU

Incubators, wires and feeding tubes – starting life in Neonatal Care

Flynn was doing well, but needed time to grow. We didn’t ever get used to having to go home without him every evening. It didn’t feel right, but we knew he was receiving the best care possible and we couldn’t have wished for a better team to care for our precious miracle.
We came to learn early on that there were no obvious medical problems for Flynn. A huge relief beyond words, but it was very hard to process and believe. We’d lost our first son to a heart condition and I couldn’t understand how our second child could be so healthy, it felt too good to be true. We were discharged home from NICU after 4 weeks. Like Blake, Flynn was tiny on discharge, but we felt much more confident with a tiny baby at home the second time round.
Discharge from NICU
On the outside we looked like we were coping so well after what we had been through, but on the inside I was paralysed with fear on a daily basis. Once home we received support from the Neonatal Family Care Specialist Nurse. She knew us well and it was very easy to discuss our fears with her. Things that are normal in babies, just those little things like facial expressions and the fast heart rate etc. had me in a constant state of panic. I knew it was normal but our lives were the polar opposite of ‘normal’ and I just couldn’t relax.
3 months after being home, I was home alone with Flynn and he was sleeping. I looked over at him and he looked extremely pale and his breathing had changed. I panicked, tried to reason with myself but couldn’t. I picked him up, he was floppy. His heart rate was much faster than normal and I just knew something was not right. Graham arrived home from work very quickly and took us to straight to Kings Mill ED.
Immediately on arrival to Kings Mill a nurse came from behind the reception and said
“your baby looks very poorly”. She took us straight through. Nothing could have prepared us for the fact that Flynn was placed in the same bay where Blake died.
Flynn’s heart rate was low and dropped whilst we were there. Once again I was paralysed with fear. Graham was trying his utmost to keep me calm but I just couldn’t see that the outcome of this would be a good one. The doctor came to see Flynn and we were admitted to the Children’s Ward for assessment. My fears should have lessened as we were out of A&E but still I just couldn’t see that we were going to get Flynn home.
He was monitored over a few days, and those few days were horrendous for me. I was absolutely convinced that it was his heart and that he was suffering the same as Blake. Lots and lots of reassurance was given but I just couldn’t accept that it wasn’t his heart.
It turned out that Flynn was suffering with silent reflux and had had an apnoea episode. Following this diagnosis the silent reflux became very evident. Of course there was much relief that it wasn’t heart related but I still couldn’t be convinced or could allow myself to be reassured. Blake had suffered mini heart attacks leading up to his death and all I could think was it was the same.
Flynn continued for the first year of his life to suffer with silent reflux and it was very distressing. Initially there were days that he would scream in pain for 9 hours a day and it took some time to stabilise his suffering, trying different feed options and medications, but we got there in the end.
Flynn and ickle pickle
Flynn is now medication free and those days of seeing him in so much pain are a distant memory but I will never ever forget how very hard those days were. Flynn’s Paediatric Consultant is amazing on so many levels. Having a good Paediatrician behind us has been paramount to our mental health. He is aware of the issues surrounding Blake and has offered so much parental reassurance as and when required. I could never express to him just how much he has made our journey with Flynn much smoother, lighter and less of a worry. We will always be very grateful to him.
Flynn and mum
It’s still hard for me to accept that Flynn is medically well. I still struggle to understand that my first born child died of an enlarged heart and that Flynn has no heart problems. I know he’s a different child but I live on tenterhooks most of the time. I try to keep it hidden as much as possible, but every time we face a simple childhood illness it flares up again.
Flynn toddler

Flynn is a very healthy 30 month old and brings rays of sunshine into our lives. He is a ball of energy and infectiously adorable. He really is an absolute treasure, a miracle. There will always be Blake missing from our lives, every second of every day, but we have learned to carry this the very best we can. We didn’t just lose a child, we lost a baby, a toddler, a teenager and an adult, everything he was going to be. The most heart breaking feeling is that he also lost us and his whole life he fought so hard for.

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Blake home from hospital, precious memories with his mum

Flynn and dad

Flynn, building happy memories with dad

With special thanks to Haley for bravely telling the stories of brothers Blake and Flynn and for sharing with us her heartbreak, joy and ongoing and long lasting worries.
Please help us to SHARE the brothers stories but clicking on the Twitter and Facebook buttons now.
If you have a story of premature birth and neonatal care you’d like to share, please contact Catriona at smalletthings@yahoo.com

My Employer is Giving Premature Baby Mums More Time: Will Yours?

Mum to identical twins and Tamba volunteer, Linsey Wynton, on how her employer, Waltham Forest Council, has introduced extended maternity leave to parents of premature babies.

Five years ago when I gave birth to identical twins, 11 weeks early, I had no idea I would be involved in publicising a campaign to bring about fairer pay for parents in similar circumstances.

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Linsey shares skin-skin time with her twin boys in neonatal intensive care

Fast forward to 2018 and I am in Broadcasting House, with the Deputy Leader of the council I work for as a press officer in Waltham Forest. He’s Councillor Clyde Loakes and he is about to announce a trailblazing change on BBC Woman’s Hour.

Our council is – we believe – the first employer in the country to offer extended maternity and paternity leave to parents of premature babies for the duration of time they spend in hospital up until their original due date.

“It’s a small thing we can do that will make a huge difference for families. I don’t understand why more employers don’t do this,” Cllr Loakes has told me. And he explains to Woman’s Hour presenter Jane Garvey: “We can wait till the cows come home for Parliament to legislate. But this is something we can do now.”

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Linsey Wynton, Sarah Miles and Cllr Loakes at the BBC promoting Waltham Forest Council’s new initiative

We were joined by campaigner Sarah Miles, a trustee of The Smallest Things Charity, which wants the law to be changed so employers are required to offer extended paid maternity and paternity leave to all parents of premature babies. A petition by The Smallest Things calling for this has secured over 1850,000 signatures so far.

Sarah’s story moved me to tears. Six years ago she gave birth to twin girls 12 weeks prematurely. But she had no idea that her maternity leave from work would start the very next day.

One of Sarah’s twins, Charlotte, spent three months in hospital. Her other twin, Eva, was in hospital for six months and sadly passed away.

Sarah’s maternity leave was so different from what most new mums expect – months spent visiting a neonatal unit, listening to the constant beeping monitors, willing her girls to pull through and come home. She went through so many ups and downs, meeting parents along the way whose babies eventually thrived and others whose babies tragically died.

Soon after baby Eva’s death, Sarah was asked by her employers at the time if she would be returning to work. Because of her recent bereavement, and still having a very tiny baby at home, Sarah requested unpaid leave.

“I was not ready to go back to work. 40% of mothers of premature babies experience postnatal depression, and a report by The Smallest Things last year revealed 63% of mums of premature babies experience anxiety and 44% have flashbacks. I was suffering from all of these,” explained Sarah, who is now also a Tamba volunteer with the Bereavement Support Group.

Her employer was not sympathetic. In the end, Sarah had no choice but to resign from her job. She joined forces with other mums who had had premature babies, including Smallest Things Founder Catriona Ogilvy, whose first son Samuel was born 10 weeks early.

Catriona’s local MP Steve Reed introduced a Prematurity Bill to parliament, which called on government to extend paid maternity and paternity pay to parents of premature babies. Unfortunately it was dropped at the second reading. However, following a meeting with The Smallest Things, Bliss and Steve Reed, Business Minister Margot James MP requested guidelines be drawn up on how employers can best support parents of premature babies. The ACAS guidelines were published in March 2017 and was the first time the unique needs of families of premature babies have been acknowledged in employer guidance.

However, changes need to be made not just by employers, but in terms of statutory maternity allowance given that one in seven people in Britain is self-employed.

When my twin babies were born 11 weeks I was self-employed and so was my husband. So I was I was only entitled to 9 months statutory maternity allowance. At that time it was only £135 a week. And because I had been very unwell, with a diagnosis of acute and severe Twin to Twin Transfusion at 24 weeks of pregnancy, my payments ran out by the time my twins were six-months-old. With an older son also, and the lack of subsidised childcare, it was not viable for me to work until my twins were three. So as well as the sheer exhaustion, it was tough financially.

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Linsey was not able to return to work until her twins were 3 years old

All I can hope is this small change that my employer has made will be the start of something much bigger for other parents in my situation in future. Cllr Loakes is now talking to the council’s contractors, which include Kier, who provide our refuse service, and partners, which include Whipps Cross Hospital. He wants them to make a voluntary change to support new parents of babies born prematurely.

Our story has had a lot of coverage, including an article in the Evening Standard, an item on BBC Radio London and TV coverage on BBC London and ITV London News. Hopefully it will be the first of many victories for The Smallest Things.

 

If like Linsey you’d like to ask your employer to extend parental leave for parents affected by premature birth, download our letter for employees and ask them to become a Smallest Things Employer with Heart by signing up to our Charter of Best Practice. 

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

Please help raise awareness by sharing on Facebook and Twitter just click on the buttons now!

Bonding with Alfie after the Trauma of Premature Birth

My son was born at 26 weeks.

Up until that point my pregnancy had been very similar to that of my daughters three years earlier. I had constant morning sickness so was medicated and felt pretty awful most of the time, but I’d carried Sally to term and had a natural birth with a wonderful outcome so saw no reason why this time anything should be different.

Alfie arrived very quickly without any real warning. He came 17 minutes after arriving at the hospital by ambulance and my husband was unable to be there as he was arranging care for our daughter.

I went into complete shock.

I wish now that we’d known Alfie’s gender beforehand, he was born with his placenta attached and even the vast medical team didn’t know his gender for 10 minutes as they worked to stabilise him.

I coped by detaching. I can still vividly remember and feel guilty everyday for the fact that during his rapid birth I focused on our daughter. I pictured her in my mind and reminded myself whatever happens I’ve got her. My mind continued to cope by focusing on her for at least the first 48 hours.

Alfie was transferred to a specialist hospital 60 miles away and we followed. I’d never left Sally over night before so was tormented by thoughts of her distress and just wanted to get home to be with her, but when I did the following day I felt judged for doing so by all but one wonderful nurses.

I returned within 24 hours and continued to do 48 hours with Alfie followed by 24 hours with Sally in shifts with my husband until Alfie was transferred back to our local hospital 18 days later.

I had bonded with Sally instantly when she was born, but she as been handed to me the second she was born and had barely left my arms in the days, weeks and months that followed. I got to touch Alfie’s tiny, tiny hand briefly as he was whisked away and then all contact was controlled, monitored and terrifying. Even the first time I held him after 13 days was hard as my instinct was to rock and stroke him but that was not allowed.

I tore myself in half to spend time with both of my children everyday but never felt I was giving either of them enough. When Alfie finally came home along with his oxygen my body and mind caved in and I suffered severe stress induced IBS and debilitating anxiety, not helped by him being readmitted with pneumonia and a collapsed lung 5 weeks later.

I struggled on exhausted and carrying the guilt that I had not bonded with Alfie straight away until I went to see my GP as I reached breaking point. To the outside world I hid it well, but that is not always a good thing. She got me counselling which identified that I had PTSD and post natal anxiety. It helped but I was still struggling and in the end agreed to try medication and wish I’d done it months ago. I still get anxious but I can manage it now and my IBS has reduced massively. I can look at things rationally now and know deep down that what matters is that I have bonded with Alfie not how quickly that happened.

I still feel haunted by his birth and first year of life, but I know now that I’m not alone in these feelings and that helps a lot.

The NICU experience does not end at discharge and everyone copes in different ways, but just because someone appears to be coping do not assume they are and just be there to listen and support.

Lizzie Miller

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

BBC Women’s Hour – Speaking about the NICU Journey

I was delighted to be invited on to BBC Women’s Hour today to speak about my petition to extend maternity leave for mother of premature babies. The petition has reached an incredible 100,000 signatures!

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I was joined by Bliss CEO Caroline Davey and together we spoke about the needs of families following neonatal intensive care with radio presenter Jane Garvey; highlighting the impact of premature birth upon a mother’s mental health, her ability to return to work and a baby’s need for time to develop.

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I spoke about my sons, Samuel and Jack, now age 5 years and 3 years, who were both born premature. I spoke about our journey, which like so many others did not end at the NICU door. I described the isolation mothers can face once they leave the neonatal unit, the on-going worries and anxieties, re-admissions to hospital and the financial impact of an early birth. I spoke about the need for more time for mothers and their babies.

You can listen again to our BBC Women’s Hour piece here.

And, … If you like what you hear, why not share with others?

That way we continue to raise awareness, explaining the unique needs of families following premature and life beyond neonatal intensive care.

 

 

Baby Loss Awareness Week – #BreakTheSilence

Each year the 9-15 October is Baby Loss Awareness Week, a time to remember all the babies who died during pregnancy, at, during or after birth. The week provides an opportunity for people to talk openly about baby loss, a subject that for many still remains a taboo, and helps to raise awareness of loss during or after pregnancy.

The Smallest Things, supporting Baby Loss Awareness Week, will be sharing stories, pictures and the words of bereaved parents; remembering all babies gone too soon, offering hope to others and celebrating short lives.

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We will be taking part in a global ‘Wave of Light’ at the end of the week and ask you to join with us, and thousands of other families across the world, to light a candle at 7pm and leave it burning for at least one hour – Saturday 15 October.

You can be part of a digital “Wave of Light” too. Simply take a photo of your candle burning brightly and post it to social media sites such as Facebook, Instagram or Twitter at 7pm using the hashtag #WaveOfLight.

Together, and across the world, we will remember them; brothers, sisters, daughters, sons  – babies who have died too soon.

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http://www.uk-sands.org

http://www.miscarriageassociation.org.uk

http://www.tommys.org/baby-loss-awareness-week-2016

http://www.bliss.org.uk/News/baby-loss-awareness-week-2016

 

Through NICU: 2 becomes 5!

Jade’s triplets were born at 31 +6 by emergency c-section. Below is a poem she wrote to her babies telling them of their NICU story.

Kids before I’m thirty, is what I’d always said.

Kids before I’m thirty, was always in my head.

Lets just try to not try, and then who knows, we might.

Three weeks later pregnant like a bolt out of the night.

I remember waking up in bed, such pain all down one side.

Using Dr. Google left me scared so much I cried.

Seven weeks exactly we went for an early scan.

Sombre like a funeral home full of dreams not gone to plan.

In the room I shakily laid down upon the bed.

Thoughts of loving what I never had running through my head.

I held my breath, I clenched my fists, I kept my eyes low down.

The nurse went quiet all at once and wore a surly frown.

She turned the screen and pointed out three dots for me to see.

Three blinking lights, three little hearts beating inside of me.

I laughed, I cried, I was amazed, and Daddy turned to stone.

No longer would we ever be two people on our own.

“The pain”, she said, “is just your womb stretching out for size.

You need a lot of room in there for growing those little guys”.

And there we were, a family of five, full of wonder and of dread.

Who knew just growing you would leave me cooped up, trapped in bed.

I’m not going to lie to you and say it was all a dream.

Cooking up three buns in you is not as easy as it seems.

Mammy cried and Mammy tried to keep you safe and sound.

Growing day by day I was swollen, stretched and round.

Each little kick I felt from you was a miracle and a fright.

That I might not keep you safe inside was a worry every night.

There are no words to describe what we all went through.

The extra scans and hospital to put off meeting you.

And then far too early for us all water gushing out.

I gave a cry, a fearful gasp, and gave your Daddy a shout.

Dr said you were too early and they had no room,

to care for you three miracles who were coming far too soon.

Mammy taken all alone trying to hold on some more, 

to the Dr’s far away, by now my heart was full and sore.

Sore because I’d failed you and not kept you safe and tight.

Sore because I wasn’t ready for you to come this night.

I felt so guilty that I’d moaned at how my body ached.

That now you were all coming out my buns just partly baked.

But once again you amazed me and held on good and strong.

For three more days you stayed inside but I knew it wouldn’t be long.

My body hurt, my back was sore, nothing was quite right.

A few hours later, a little check, a head was full in sight.

To panic stations was where they went, and wheeled me to the room, 

where you would all be taken out for meeting all too soon.

The next part is not a part I remember very clear.

Too much blood and dropping stats and lots of gloom and fear.

I just recall being comfy and drifting quiet away.

Your Daddy trying to wake me, his memory to this day.

Twelve hours did they watch me and kept us all apart.

Daddy took your photos to hold close to my heart.

And then they wheeled me to you still strapped up in my bed.

To look at you through glass, so many tears I shed.

And that is where I met you, in NICU and in pain.

Knowing that my little life would never be the same.

So delicate and wrinkly, just like a little bird.

So small and perfect you all were, the first, the second, the third.

So many wires, so many beeps, so foreign to us all.

Too afraid to pick you up, scared you were so small.

Fed with a tube and not by breast but milk for you a must, 

Mammy expressing colostrum like actual golden dust. 

And one by one you began to breathe without any help at all, 

And every day became a waiting game for the transport call. 

One by one you were taken away to the Dr’s close to home, 

and once more I sat bereft, just a woman on her own. 

Finally I joined you out of glass and into beds, 

Still connected to the wires, tube fed and lots of meds. 

And so we struggled on and on the hardest time of life.

Leaving you every day alone, my heart hurt and full of strife. 

And finally at three weeks I learned what breastfeeding was all about, 

To hold you close to nurture you, so in love I had to shout. 

To shout about your wonder, shout about your strength, 

To shout about your courage, true fighters breadth and length. 

And eventually the day came when we could take you home, 

To start our new life together we’d never be alone. 

My three amigos, my little clan, my Musketeers so true, 

All for one and one for all, I’ll always be there for you. 

And even though we all came home it’s not plain sailing as they say

But I will be forever grateful every single day.

Grateful in the way you’ve changed me to my very core, 

Grateful that we made it with all that went before. 

I will never be the same, now I’ve met you three.

I never want to be the same, I want to be you plus me. 

And some days will be fantastic and some days we might all cry,

But I can promise you one thing, I will always try. 

I will always try to be the best I can for you, 

And some days I might mess it up and leave you feeling blue.

But I will always love you and keep you safe and sound, 

In a way I couldn’t do it when I carried you first time round. 

I will always try and smile when people point and stare, 

And teach you how to rise above and that you shouldn’t care. 

I worry about when you can understand the silly things they say, 

“Nightmare”, “trouble”, “chore”, “oh bless” a few times every day. 

But they will never understand just what we all went through,

Just to get you where we are a five, no more a two.

mumsnet

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

 

Life After NICU – 5 Years on

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

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

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

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

Smallest Things

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

 

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

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

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

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

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

 

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

I think that they will always be….

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

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

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

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

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

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

 

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

Launching! Recognising the Mental Health needs of NICU parents

images (1)And once the storm is over you won’t remember how you made it through, how you managed to survive. You won’t even be sure, in fact, whether the storm is really over. But one thing is certain. When you come out of the storm you won’t be the same person who walked in”.

Haruki Murakami

Parents shouldn’t have to weather the NICU storm alone. Yet we know, after discharge from hospital, many of them do.

That is why The Smallest Things is launching a new mental health campaign, addressing directly the lack of understanding among primary healthcare professionals of the mental health needs of parents after premature birth.

Having a baby in neonatal care can test you to your very limits. The uncertainty, the shock; the highs and the lows.

As your body recovers from the physical realities of birth, your mind tries to piece together the medical world that surrounds you. People would often ask how I managed to get through our time in Neonatal Intensive Care; “You must have been so strong”, people would say, “You must have been so brave”. The truth is I was neither of these things. Like thousands of parents, I simply had no other choice.

Lost in a sea of emotions, the rituals of NICU soon took over. Expressing, traveling, incubator nappy changes, kangaroo care and hours and hours of watching and waiting. Your life becomes neonatal care and in the agony of leaving my baby each day I would turn to the advice of Piglet and Pooh – “How lucky I am to have something that makes saying goodbye so hard.” AA Milne.

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The sun was shining on the day we left the hospital and I still remember the feelings of relief and hope for the future. The days of NICU would soon become a distant memory – or so I thought.

I quickly came to realise that our journey as prem parents had only just begun, only now the safety net of the neonatal unit and of other NICU parents who ‘got it’ had gone.

Questions about how I’d had made it through NICU became redundant – I’d made it this far because I had to. But I was still battling; just about holding on, trying to make sense of all that had happened. Rather than well-meaning comments from my health visitor such as “I bet you’re glad you’re home” and “it must have been difficult” (as well as other ill-informed comments about expressing, breast feeding and corrected ages), I was crying out for someone who understood. Someone who knew and would tell me that the overwhelming emotions of grief, loss, guilt and jealously, the anger, the anxiety and worry were completely normal for a NICU mum.

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The support for parents following neonatal intensive care is limited and The Smallest Things have received countess examples of where primary health care professionals such as GP’s and health visitors simply do not understand the needs of premature babies and their families. And yet, we know that more than 40% of mothers go onto experience post-natal depression following NICU, and that more than 50% show signs of anxiety and post-traumatic stress disorder. More must be done.

In launching our new mental health campaign, The Smallest Things will call for GP’s and Health Visitors to be trained to recognise and support the needs of parents following neonatal care. Will you help to raise awareness too?

download

SIGN NOW! https://www.change.org/p/the-nursing-and-midwifery-council-gps-and-health-visitors-please-recognise-the-mental-health-needs-of-nicu-parents?recruiter=83525408&utm_source=share_petition&utm_medium=email&utm_campaign=share_email_responsive

A POEM – To all Those NICU First Time Dads

A POEM – To all those NICU first time dads

By Samuel Wilson

 

To all those NICU first time dads,

Your journey will be tough

You’ll cry and laugh and probably yell

‘why can’t I wake up from this hell?’

This nightmare I feel trapped inside…

This fear filled incubated ride.

 

Where life and death lock horns each day

Where you dread the words consultants say

Yet yearn to hear, you need to try

To understand, to reconcile.

‘Why her? Why him? Why us…WHY ME?

Why can’t this nightmare cease to be?’

Yet…

 

Despite the bleeping sounds and lights

Where fluorescent bulbs merge days and nights

In spite of vital readings dropping

And pale blue lips and small hearts stopping.

 

Even with the daily resuscitations

And crash teams sprinting from nurses stations

 

Even with the phototherapy and scans

And long lines, CPAP, feeding plans Through NG, NJ tubes so frail,

 

This tiny girl, her skin so pale

 

And hydrocephalus and drains

From in her spine to ease her pains

Of swelling brains, please stop…no more.

Those words: IVH Grade 4

 

To all those NICU first time dads:

 

Despite this, all of this you’ll smile

And find the strength to reconcile

Those darkest times with future hopes

Of climbing frames and skipping ropes

And realise that markers change

And joyous moments mean so much more,

Where cooing smiles and kicking limbs

Mean more than they ever would before.

 

She fought so hard

To be with you:

Shouldn’t you show the same fight too?

 

Dig deep and go the extra length

And find the will and find the strength

To show the care and love they crave

They’ve already shown how to be brave

 

Consider how your wife has been,

And how she’s fed and nursed and cleaned

Your little child through day and night

And pushed through fear and hurt and fright

 

Take courage from each other here

And share a laugh and share a tear

And soon perhaps just share a beer

And take a trip out to Ikea

And do those normal things each year

That new dads do without the fear

As the pain will pass, it fades away,

With every hour, with every day

Just the wonder of your child will stay.

 

Be strong, for both your child & wife

Enjoy your special, wondrous life.

 

Copyright 2016

Samuel Wilson

 

dads

More time for mums and their premature babies

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

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

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

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

An incubator holds my baby

An incubator holds my baby; a baby I am no longer with.

I long to feel just one more kick, to feel and see my belly move one last time.

I promise I won’t complain about my aching back, the tiny feet that push at my rib cage or the baby that bounces on my ever weakening bladder. 

I miss my baby; I miss my baby bump.

An incubator holds my baby; a baby I am no longer with.

Inside I feel so empty and outside I feel numb.

I do not recognise this person the NICU nurses are calling ‘mum’.

Through the incubator, I’m almost too scared to touch, my tiny little person who has arrived here far too soon.

My baby isn’t ready, in fact nor am I! And now he’s here, my heart breaks every time I say goodbye.

Smallest Things

An incubator holds my baby; the incubator that has taken my place…

and here I stand, desperate to shout – ‘it’s me, I should be the one keeping him safe’.

Inside I feel so empty and outside I feel numb.

I do not recognise this person the NICU nurses are calling ‘mum’

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Mothers of premature babies wait days, if not weeks to hold their baby for the first time. The uncertainty of neonatal care and the journey from birth to discharge home can last months – this is why the Smallest Things are campaigning for NICU mums to have more time with their babies.

If, like us, you think paid maternity leave should be extended for mothers of premature babies, please SIGN our PETITION!

15,000 people have signed!!!

15,000 people have signed because;

✒️… sitting beside an incubator is not be maternity leave
✒️…hooked up to a hospital grade breast pump is not maternity leave
✒️… waiting days, sometimes weeks to hold your baby is not maternity leave
✒️… 40% of NICU mums (compared to 5-10% full-term healthy delivery mums) experience post natal depression
✒️… more than 50% of NICU mums experience symptoms of anxiety and post traumatic stress disorder
✒️… NICU mums need support and time to recover
✒️… the average NICU stay costs families in excess of £2,500
✒️… premature babies develop according to their corrected age, based upon due not birth date
✒️… mothers and babies simply need time to bond together at home
✒️… premature babies are at increased risk of subsequent hospital admissions from otherwise harmless coughs and colds
✒️… mothers often have little choice but to leave the workplace due to premature birth
✒️… visiting your tiny baby everyday in hospital is not maternity leave
✒️… wires, monitors, breathing machines and intensive care is not maternity leave

Smallest Things

…have you signed??

Extending maternity leave for mothers of premature babies will make a difference to the lives of thousands of families and babies born too soon – SIGN NOW!!!  https://t.co/OQWaWZW4g3

My missing trimester

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

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

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

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Tommy’s Awards Nomination – a HUGE thank you

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

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

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

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

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

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

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

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

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

Premature Birth: What it’s really like series

Smallest Things Founder Catriona Ogilvy spoke to Talya Stone as part of her ‘What it’s really like’ series.

You can read the original article on ‘Motherhood Real Deal’  here:

  1. Can you share a little with us about you and your family?

I’m a children’s occupational therapist and have worked in the NHS for fifteen years. I live with my husband and our two young boys in south London. Samuel, who is four, started school in September and loves it! Jack his younger brother goes to nursery two days a week and is a very happy cheeky two year old!

  1. Can you share a little bit about how and when your baby came into this world?

Samuel was born 10 weeks early at 29+6 weeks. I’d had no complications during my pregnancy and no indication at all that he may come early. It was a Friday morning when my waters broke as I got out of bed; I couldn’t really believe what was happening! I calmly called a taxi, threw a few things into my hand bag (10 weeks early I hadn’t even thought about packing a hospital bag) and made my way to the hospital.

Despite the midwives hoping my labour may not progress, Samuel was born a few hours later. The room flooded with doctors and nurses as he came into the world and it was six long minutes before he would take his first breath. I remember the midwife showing me a tiny little face wrapped in a towel. I reached out to touch him, but my hand was gently moved away and in the flash of a second he was whisked away to neonatal intensive care.

  1. Having previously spent time working in a large neonatal unit, did you ever really think that your own baby could be born too soon? And did that do anything to prepare you for the challenges you faced?

Samuel was taken to the neonatal unit where I had worked a few years before. When my GP had asked me where I’d like to have my baby my only thought was of Kings College Hospital. Having worked there I knew how good their neonatal unit was and I remember thinking that if anything went wrong that is the place I would want to be. I don’t think I ever really thought that my baby could be born early, (I wasn’t planning on starting maternity leave unit 38 weeks), and I’m not sure it prepared me for the challenges we would face. In a strange way it made being mum to a tiny fragile baby more difficult as I could hit ‘medical mode’ and detach myself more from the emotions of a traumatic birth. I also think more was expected of me as I should be used to handling babies through incubator port holes with numerous lines and tubes covering them, but being my own baby I was terrified.

As an occupational therapist, part of my role was to help parents to be parents; to hold and to care for their babies. I thought I knew what being in neonatal care was like, but I soon discovered that I had had no idea. I’d never truly appreciated the trauma that parents go through, the emotional roller-coaster and the host of conflicting feelings.

  1. Did your baby suffer any of the complications associated with being born too so (please elaborate and if yes, how that translates to your child at this present time)?

Like many babies born early, Samuel has had ongoing respiratory difficulties with simple coughs and colds in danger of landing us in hospital. As he gets older his lungs continue to develop and get stronger, but it is always a worry for us. He has always met or been ahead of his developmental milestones according to his corrected age (the age according to his due date rather than birth date) and is doing so well at school. At just turned four though he is one of the youngest in his class and as a direct result of his prematurity has gone to school a year too soon. Born in early August, but not due until mid October, he literally was born into the wrong academic year!

  1. Becoming a parent is a life-changing event as it is, but does having a baby who was born too soon take things to an entirely different level?

Nothing can really prepare you for becoming a parent, but what I always say is that for parents of premature babies all the planning and anticipation is dramatically and very suddenly interrupted. You have ideas about holding your baby for the first time; of about bringing them home to meet the family. You have their room decorated, your hospital bag packed, an empty crib ready and waiting and their first outfit chosen. I had nothing ready. No hospital bag, no car seat, no baby grows or crib. I waited six days to be able to hold my baby and changed my first nappy holding tiny legs resembling sticks through holes in an incubator. It does take things to an entirely different level, but I am also mindful that everyone’s birthing experience is different and everyone has their own journey when starting out as a new parent.

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  1. Being born too soon still seems a little talked about subject – given the number of babies who are born too soon in the UK, why do you think that is?

The neonatal intensive care unit isn’t the sort of place you’d stumble across and I think people can be afraid of the unknown. Seeing the smallest of babies hooked up to tubes and wires, some at the very edge of life, is not for the feint hearted and TV documentaries like ‘Miracle Babies’ last year really helps to shine a light on the subject.  As a parent of a premature baby it can be difficult to explain or re-live your journey through neonatal care and where there is a lack of understanding it can feel safer to stay silent. I think this is why mothers can describe their journey as being quite isolating and why I initially set up my Smallest Things blog.

  1. What are people’s reactions towards having a baby born too soon, and what is the most frustrating thing you have encountered?

I found that people thought my baby was just a smaller version of a term baby. Perhaps well meaning comments such as ‘Labour must have been easy for you’ or ‘at least you got to miss that really big stage’ were in fact quite hurtful. I don’t think people really realised how scary giving birth 10 weeks early can be, what difficulties premature babies can face or what it is like to go home every day without your baby.

  1. There must be so many challenges to overcome a parents of a premature baby, but for you, which was the single greatest one?

It may sound strange, but there is a great sense of loss and grief when your baby is born prematurely. I was discharged from hospital the day my son was born and had to go home that evening without him. I was empty and I was without a baby to hold. Although my baby was alive I grieved for the baby I was missing. This also caused a great deal of guilt; feelings that I must be selfish to feel this way when others really are grieving for their lost babies. You feel a sense of loss – loss of that first precious hold after birth, loss of your final months/weeks of pregnancy, time to plan, buy, decorate and prepare. Loss of the celebration of a new birth as you welcome your new baby into the world with caution and anxiety. For a long time I ached for the baby I wasn’t able to hold and that is one of the greatest challenges I have had to overcome.

  1. You’re currently campaigning to extend parental leave for mothers of babies born too soon – can you tell us a little about that?

I had no idea when my baby was born prematurely that my maternity leave would begin the very next day; days before I would first be able to hold him and months before I would be able to bring him home. I had planned to take 9 months maternity leave, so by the time I bought my son home I had already used nearly a quarter of my leave visiting him daily in hospital. And rather than returning to work when my son was 9 months old, developmentally at his corrected age he was only 6 months old, not able to sit independently and not yet weaned. It was too soon for him and too soon for me. I needed more time to recover from the trauma of time in NICU and more time to bond with my baby, and he needed more time to grow and develop.

So, I started a petition calling on government to extend statutory paid parental leave for those with premature babies – the petition now has over 11,000 signatures! My local MP Steve Reed is championing the petition in parliament and it was even discussed by MPs as part of a Westminster Hall debate… so watch this space!

  1. If there is one thing you wish people would understand about having a premature baby it is….

That the journey through neonatal care doesn’t end when you leave the neonatal unit.

I remember someone once saying to me ‘well at least it’s all over now’, but your journey and the memories of NICU stay with you. For us we have had subsequent admissions to hospital with respiratory illnesses and regular follow up appointments. There are the anxieties of reaching milestones, worries about lasting affects and of course time needed for you to recover mentally and physically. More than half of mothers are said to experience anxiety and signs of post traumatic stress disorder following a premature birth and more awareness is needed of the lasting effects of neonatal care on families.

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  1. Anything else you would like to add?

Two things; firstly my thanks to the wonderful NHS staff who have not only supported us through neonatal care but beyond, they are all amazing; and secondly to say to other parents of premature babies that they are not alone and by speaking about our experiences together we can raise awareness.