Category Archives: SCBU

Once an NICU Mum, Always an NICU Mum 

As a little girl all I ever dreamt of was being a mum. I never dreamt of my career, I just dreamt of having my own family around me. Never in my wildest dreams did I think our journey would be so difficult.

In March 2013 my husband and I got married. We knew we wanted to start trying for children straight away and of course I thought it would happen quickly. Oh how wrong I was! 

I was soon sitting in the fertility clinic, being diagnosed with PCOS and prescribed Clomid. After a couple of rounds we got pregnant and we were elated! Our joy soon disappeared though as I miscarried. It was hard to take, but we picked ourselves up and plodded on. The consultant suspected I had a bicornuate uterus and thought he may be able to operate to give us a better chance at carrying a healthy pregnancy. I went down to theatre to get ‘fixed’ and remember waking up from the anaesthetic and asking the nurse next to my bed ‘am I fixed?’ She told me ‘no’, the consultant couldn’t operate and I broke down. The consultant came to see us and told me something I didn’t even know was possible. ‘You have something called Uterus Didelphys’. I looked at him like he had just told me I have two heads…. I was close – TWO WOMBS. Yes two wombs and two cervix!!

I fell pregnant for a second time in December 2014, but sadly miscarried. While I was waiting for a new cycle to start to take my Clomid I fell pregnant again! This time my consultant stepped in and prescribed me progesterone pessaries to use everyday and low dose aspirin to help the lining of my womb and the blood flow. It worked!

7 weeks came and went, 8 weeks, 9, 10…. When I got to 12 weeks I couldn’t believe it, I was starting to have hope this could really be it. I had a couple of scares with bleeding etc but all was fine. 

The risk of me being pregnant with uterus didelphys however was premature birth because my womb is half the size of a normal womb. I got to 26 weeks without a hitch and then I noticed that my baby boys movements had slowed right down.  I was admitted into hospital where I was given steroids injections and monitored every 4 hours. After two nights I was discharged home and was able to celebrate my birthday. 10 days later though, when I was attending my 28 week growth scan, they weren’t happy with babys size – yet again I was admitted to the maternity ward and monitored. 

My husband left the hospital to go home at 11pm and by 1am he was called back as they weren’t happy with babies trace. I was rushed down to theatre for an emergency Csection, delivering my baby boy at 28 weeks! 12 weeks early! I had no idea what to expect but it was my worst nightmare. A very poorly baby boy.


The first time i got to see my son I was called down because he had stopped breathing and they couldn’t get the ventilator into his lungs. 

I walked into a world I never knew existed. The beeps, the smells, the constant hand washing and antibacterial gel. Seeing my poor little human covered in wires and surrounded by nurses and doctors in a panic. It’s a sight I will never forget. The first time I met my son he was moments away from death. 

Thankfully they got his breathing under control and I was able to sit with him and start to examine this little man that we had made. He was beautiful, so tiny, but all ours.

The first two weeks is a blur, I remember feeling numb. I never dreamt it would be like this, giving birth to your child who is then snatched away, put in a glass house plugged in to 15 plus machines needed to give him life saving medicine. I was a spectator, I had lost out on that chance to be a Mummy. 

I was still mourning the loss of my third trimester – this isn’t how I should have been spending the last 12 weeks of my pregnancy, in a stuffy intensive care unit in the middle of summer, watching my child fight for every breath. 


Paralysed from medicine to help him get stronger. His face and body were so swollen. The staff used to come into work wondering if he would still be there. Sickest baby on the unit are given 40% chance of survival. That is not how I should have been spending that time. My missing trimester.

Being an NICU mum there isn’t a lot you can do for your baby, so the few things you can do you grab with two hands. Expressing is key for a premature baby, so anything I could do to give him the upper hand I was willing to do. Everything revolved around expressing, but it was a struggle. Why couldn’t I produce more? What is wrong with me? Why could I only fill half a bottle when I see other mums coming down with multiple! It was heartbreaking. Just call me the 30ml mum. In the end, due to surgery while my son was still in SCBU, my milk completely stopped so we had to move to formula. I had tried my best and as much as it broke me I knew I had given him everything I could.


Being an NICU Mum is lonely. Although you have all of these other people around you, you are cut off from the outside world… Cut off from reality. If you’re lucky, which I believe I am, you can find some special friendships while riding the rollercoaster of SCBU.


After a lot of ups and downs we FINALLY got to take our precious boy home! Bags packed and oxygen in tow we were leaving the NICU, our home for the past 97 days. It was scary, but we were so ready. Ready to start our life as a family of 3.


Our not so little boy is 22 months now. He has a lot ahead of him but we are so proud of how far he has come. The NICU will always be a part of our lives and even after not being there for over 18 months our minds always wander back there. Christmas, NYE, Easter any occasion we will always think of NICU and the families past and present. Each journey in the NICU can be so different but there’s one thing which will always stay the same ‘ONCE AN NICU MUM, ALWAYS A NICU MUM’.


With special thanks to Sophie for sharing her story through pregnancy and premature birth. 

If you’d like to help The Smallest Things continue to raise awareness, please SHARE Sophie’s story – it’s easy, just hit the Twitter and Facebook buttons now!

Got your own story of NICU and premature birth to share? Email Catriona at smallestthings@yahoo.com

Neonatal Care: Shattered Dreams and Precious Moments

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

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

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

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

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

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

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

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

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

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

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

A very different Mother’s Day

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

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

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

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

And now he was there, fighting for his life.

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

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

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

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

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

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

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

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

 

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

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

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

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

 

 

 

 

The Uncertainly of NICU – Joshua’s Story

My son Joshua was born at 28 weeks, on Mother’s Day this year. 

It was a complete surprise! I had been suffering with pains a few days before but was assured that this was just Braxton Hicks. Then in the early hours of the morning of 6th March I woke up bleeding heavily. We raced to the hospital with just my maternity notes and were told I was already 3cm dilated and that the baby would be born very soon. I had suffered a placental abruption.

My husband and I could not believe it and I was in complete denial, truly believing I would surely be sent home soon and told to rest. But sure enough, 5 hours later he came. He weight 3 pounds. I had been given steroids to help his lungs develop but given the speed of delivery there was not much time for them to take effect. Joshua had to be resuscitated at birth as his lungs were so under developed. The transport team arrived very quickly to take him to a higher tier hospital and there begun a 7 week stay in hospital for us. 


The first 24 hours were probably the hardest. No one was willing or able to give us any assurance that Joshua would be ok. I felt incredibly guilty and stupid that I had not realised anything was wrong sooner. I tortured myself by going over every detail of the week before, trying to pin point a cause. I couldn’t accept that it was not my fault in some way. We also just didn’t know what to expect. Thankfully his first brain scan was clear and when they took him off the ventilator he was able to breath by himself with some high flow. He had a heart murmur but we were assured this would most likely close by itself. Finally we felt able to hope for a good outcome. We started to feel very lucky.
After 4 days we could finally hold him, it was magical. 

Joshua did very well during his time in NICU. He was even breathing in air by the time he got moved to SCBU. However, it was in SCBU that the usual bradicardia episodes and Apnea really begun. Some days his alarm would go off every 20 minutes. It really felt like he was going backwards. He was put back into oxygen and for a while it felt like every day it was turned up another notch and I couldn’t see an end to it. His weight was increasing and he had reached the hospital discharge guidelines of 35 weeks but he was still oxygen dependant. We were told he may go home on oxygen. 

I had been expressing milk for him and I wanted to breastfeed him when I got home. This was a challenge! Trying to convince a tiny baby who had been tube fed for 7 weeks to work for their food felt like an impossible task and it nearly broke me emotionally. However, with determination, perseverance and the help of an excellent SCBU nurse, who dedicated most of her entire shift to helping me, he finally started feeding. I was able to feed him for 7 months when I got home, until he decided food was far more exciting!

Thankfully, during the last week of our stay, Joshua decided he was not going to go home on oxygen and just stopped having Apnea’s one day. We were told this could happen, I just never imagined it actually would. Again, we felt so lucky and relieved. 


We had a great outcome with Joshua. Much better than we ever imagined at the start. He is a happy little 8 month old baby now, enjoying baby sensory, baby yoga and play groups. 

The first winter is hitting us hard. He is in about his 11th virus already. However, he never lets this get him down and always has a cheeky smile on his face. 

All of the staff in the 3 hospitals were exceptional. We had stays in st Peter’s Chertsy, William Harvey Ashford and QEQM Margate. They encouraged us to get involved with Joshua’s care as much as possible and this is what got us through the experience. In the first 24 hours I felt like a spare part – I didn’t think there was anything I could do for him and I was scared to get too attached. When I did start expressing milk, changing nappies, top and tailing and kangaroo care, I really felt like a mum to Joshua and that I was helping him in some way. 


A nurse told me during one of my most down days that I know my baby better than any doctor or nurse and that I can help by being his advocate and his voice. This was one of the best pieces of advice I have ever been given.


With thanks to Louise for sharing her story of premature birth – a true NICU ride of ups and downs!

If you have a story you’d like to share please email Catriona at smallestthings@yahoo.com 

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How can health visitors support families after NNU?

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

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

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

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

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

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

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

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

 

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

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

 

 

My NICU Warrior

Guest post, by Tania, sharing her story to raise awareness through World Prematurity Month.

Our beautiful boy was born 11 weeks early on the 7th August 2016 weighing  a tiny  2lb 2. A week earlier I was abroad myself and my husband was out working in the middle east. Thank goodness I listened to my gut instinct and went to get checked at the hospital. I’d had reduced movements over a few days to none at all, so when I called the hospital they told me to come in straight away. I just knew something wasn’t right, little did I know what was to come. Within 20 minutes of me going in my little boy was delivered via emergency c section. Hearing those words “we have to deliver your baby now” at 29 weeks just didn’t sink in. I saw the colour drain from my husbands face as he said I’ll make phone calls to the family. Surprisingly I was very calm as I knew me being stressed wouldn’t help my baby but inside I was terrified, frightened and unaware of what was going to happen to my baby.

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The hardest part for me wasn’t all the doctors or nurses using me like a pin cushion, but the fact of not being able to hold my baby. After delivery he was whisked away. My husband was able to cut the cord and briefly saw him before he was taken to NICU.  I wasn’t able to see him for at least 12hrs after I delivered him as I had an epidural and I had to wait for that to subside.

Having a baby is suppose to be a joyous occasion and of course we we’re over the moon that we had created this little life…but it wasn’t a joyous occasion, we were supposed to be holding our baby and cooing over him, but instead I was placed on a post natal  ward listening to and seeing mothers with their new-borns whilst my baby was in intensive care fighting for his life in an incubator. The first time I saw him I couldn’t help but blame myself – was it something I did wrong? The one thing I’m suppose to do is to care and protect and to a mother, but that was taken away from me. It felt so unfair our baby wasn’t in our hands but instead being cared for by those in the neonatal unit. The only thing in my control and that was helping him to grow was expressing breast milk. I would be in the feeding room constantly expressing milk to be put away in a freezer to give at a later date.

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Each day we would go and see him. We would sit and watch him and over time we started hitting milestones – our first cuddle with all the wires constant beeping and noise of the high flow and everything else. It was a whirlwind of emotions, gradually our little warrior slowly came off each medical device and we moved in to high dependency. He was so strong and so determined which spurred us on to remain strong; if he could do it then so could we. After weeks of being in intensive care and high dependency we were able to move to the SCBU. I was so excited there I could actually feel like his mum and do the things that a mum is suppose to do for him.

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On Oct 3rd 2016 we were able to take our little warrior home and we we’re so excited. He is still having constant check ups with the neonatal team but he has done incredibly well. No-one truly understands how you feel or what has happened unless you’ve been through it. If anything has taught us how to remain strong in the most difficult of times and to never plan anything – he really is our special little boy.

Tarnia Lewis

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

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Mason & Teegan-Mae: Our NICU Journey

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

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

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

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

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

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

Despite having awful morning sickness, my pregnancy was perfect.

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

Will you share Sophie’s story to raise awareness?

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

A Roller Coaster Journey: Told by a NICU Dad

From the start…

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

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What happened next?

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

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

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

And then it happened

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

incubators

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

jake

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

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

kyle

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

Welcome to the world…

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

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

…The world of SCBU

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

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

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

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

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

day-25

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

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

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

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

nurses

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

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

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

halloween

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

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

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

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

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

xmas-nicu

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

christmas-nicu

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

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

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

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

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

kyle-home

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

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

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With thanks to Colin French for sharing his story.

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

How NICU Mums Are Chosen

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

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

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

How Preemie Moms Are Chosen
by Erma Bombeck

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

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

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

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

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

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

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

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

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

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

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

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

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

God smiles. “A mirror will suffice.”

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

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World Prematurity Month – November 2016

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

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

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

Smallest Things

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

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

“How old is your baby”?

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

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

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

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

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

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

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

 

My Life as a NICU Mummy

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

ethan

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

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.

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Life After NICU – 5 Years on

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

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

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

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

Smallest Things

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

 

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

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

smallest things

 

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

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

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

 

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

I think that they will always be….

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

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

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

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

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

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

 

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

My Superhero Preemie Powers

Tomorrow my eldest son will turn five.

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

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

 

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

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

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

 

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

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

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

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

 

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

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

It didn’t seem real.

 

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

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

I was numb.

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

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

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

 

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

 

Becoming a parent to a baby born too soon;

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

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

 

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

But the NICU journey can also be special….

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

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

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

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

 

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

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

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

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

smallest things

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

#FlamingJune – Taking Action for NICU Mums

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

cropped-Maternity-Experience

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

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

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

radio 5 live reception

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

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

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

smallest things

 

Just a Little Longer Please: Time After NICU

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

I’d like to keep you safe inside,

Just a little longer please.

 

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

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

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

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

“just a little longer, please!”

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

Terrified I reached inside the incubator walls;

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

Your tiny hand gripped my finger tight.

I prayed – fight my baby, fight.

 

How could I leave my baby?

I am empty now inside.

Emotion overwhelmed me, consumed with grief and loss.

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

 

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

Lines and tubes obscured your face, the monitor alarmed.

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

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

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

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

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

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

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

 

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

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

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

 

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

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

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

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

smallest things

More hospital trips and appointments,

Corrected age explained.

Coughs and colds take their toll on little preemie lungs.

 

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

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

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

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

Just a little longer please.


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

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Neonatal Intensive Care: A Fathers Journey

My little boy Cameron had to be delivered nearly 2 months early; he had fluid around his lungs and his movements had reduced. We would later come to know he had hydrops fetalis, a life threatening condition.
I wasn’t sure what to expect when I walked into the obstetric theatre, our daughter Beth had been born naturally and was full term and healthy. As well as the usual theatre staff there was a team of 7 from neonatal waiting to look after our boy. The theatre staff were great at keeping us calm and talking us through everything, but I will never forget the deafening silence when Cameron was born. There was no first cry, no tears of joy, no hugs or pictures, just a busy team working to save our son.

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I remember my wife Laura asking me if I could see him, but all I could see through a sea of scrubs was a cracking set of black sideburns – just like his dad!
Cameron couldn’t inflate his lungs so it took them a long time to stabilise him. He was intubated and had chest drains inserted, Laura was ready to go to recovery before Cameron was stable enough to move to NICU.

Walking into NICU that evening was terrifying. Cameron had tubes and wires covering every part of his tiny little body and his alarms were going off continually. The doctors were blunt in that many babies like Cameron don’t make it; he had no figures on survival rates, only that the coming days and weeks would be critical in seeing Cameron respond to treatment and see if the fluid reduced.

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The next day we introduced him to his big sister, it was a hard decision to make, he was so very ill but Beth had been so excited throughout the pregnancy, she needed to meet her brother. I underestimated how difficult it would be, it hit home how sick he was when I took her in. She gave him a little cuddly hedgehog and asked some questions, she took it all in but I struggled to hold it together. She would however become a regular visitor, reading her brother stories, singing him songs and using up all the hand gel! She was a complete ray of sunshine, she said it like it was and easily saw past all the medical equipment.

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I googled hydrops one day for more information, it was very grim reading and I was too scared to google it again so I started googling medical equipment and downloading the manuals, I needed to get a grasp of how they worked. I would take pictures of his ventilator setting every day and became obsessed with his fluid balance and chest drains!

Cameron had so many doctors looking after him, I was desperate for him to get the best care that I took to google again, this time googling his doctors to find out their specialities and expertise! Something that sticks in my mind is one particular doctor who we respected very much, (she saved his life one week!) telling us that Cameron had a fighting spirit in him, that he was most definitely here because he wanted to be. She was so right, Cameron went on to prove this in subsequent admissions to hospital.

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I can honestly say that I learned the true meaning of heartache in NICU. It is a pressure cooker of emotions, complete exhaustion and a constant battle to hold it together when you’re on the verge of completely losing it. But it’s not just about your own baby; you feel the pain of the other parents too. There was a baby next to Cameron that had become really unwell. I didn’t know his parents well but we had shared some chats while sitting by the incubators together. I gave his dad a hug that night and he told me that all they could do now was pray. I’m not religious but I told him that I’d say a prayer for him too. My heart sank the next morning when we saw an empty space where his incubator had been. I think I cried that whole day and night; it brought it home how fragile life is. I still think about that little boy and his family frequently.
I am thankful however for the other parents in the family room, they became such a support, family and friends struggled to understand what we were going through, these people got it without words even being spoken, they were on the rollercoaster too. There was always a chat and a laugh to be had no matter how rough a day you were having, it cheered my days up no end. We still keep in touch with many of the other parents and it’s great to see how our babies are getting on, especially as they all approach their first birthdays.

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I can’t describe the feeling of finally moving upstairs to SCBU. We knew that the next step would be home and we finally felt like parents to Cameron, able to hold him without having to ask, change him and dress him whenever we wanted to and most importantly just able to enjoy him. He was going to be okay, we were soon going to be able to take our boy home!!
Cameron has various health problems and requires future surgeries but he is the happiest wee guy around. He has taught us what life is all about and our family is definitely a much happier, kinder and thankful one for having Cameron in our world.

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With special thanks to NICU dad – Jason Smith, for sharing his journey through neonatal intensive care with The Smallest Things.

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

A Dad in NICU: An Anchor for my Wife

I was already a dad to 3 and a 4-time grandfather, but none of that prepared me for what was about to come: I had spent the pregnancy trying to be the calming influence to my wife of 5 years as this was her first time. All had gone pretty well and the pregnancy had been fairly textbook until events took some twists and turns. I won’t expand on that, as that’s another story in itself, but on one Friday night in June 2015 everything went very pear-shaped.

Mel, my wife, had been admitted to hospital in Dumfries. I had been with her all week but needed to go to our old house to finish some work before we put it up for sale. I had spoken to Mel a little earlier in the evening, everything was fine with her and baby, but then at about 11pm that night my phone rang.

I drove the 80 miles from the house to hospital to be at my wife’s side. They were prepping her for an emergency C section when I arrived and the next thing I knew I was wearing scrubs in the operating theatre, together with a load of other similarly dressed people and my wife lying on the table looking really worried.

Orla was delivered a little later and was immediately whisked away not breathing following the trauma of birth. I concentrated on doing what I could to console Mel and keep her as calm as possible. Luckily the drugs they gave her were working with me and a few white lies kept her as calm as could be expected.

What seemed like a lifetime passed as we waited anxiously for news. Various people came in to see Mel, but nobody seemed to have any information on the one thing we needed to know about. There were lots of promises to find out what was happening but very little information materialised. I knew that I had to stay strong and calm for Mel, but inside I was shaking (I deserved an Oscar for my acting masterclass!). I knew that she needed to rest and recover.

Sunrise had come and it was going to be a lovely summer day before we got the knock at the door and a senior looking doctor came looking rather serious. Everything for the next couple of hours became a huge confusing blur as we hugged each other and prayed quietly for our wee baby girl.

Orla was to be transferred to the neonatal intensive care unit (NICU) at the new Southern General hospital in Glasgow as soon as possible; the ambulance was on its way. All we could do was sit around and wait. I had to keep up my charade for Mel’s sake, but couldn’t help but crumble on a few occasions as things got the better of me. We got a brief chance to see Orla before they took her away in the ambulance and it was heaven to be with her and to actually touch her for the very first time.

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I was riding an out of control emotional roller-coaster as I spiraled from fear to anger, to uselessness to hope, and then back to anger again – all the time trying to keep it hidden. Mel, understandably, was a bit of a wreck and needed some sort of anchor to hang onto. I tried to be that anchor.

I arrived in Glasgow on Saturday evening, Mel had followed Orla in an ambulance a couple of hours after her and I had driven home to get stuff for my two precious charges before heading up to Glasgow too. I found Mel on the maternity ward, but not before being told to come back in the morning as visiting times were over! I easily won that confrontation and when I saw Mel I got her into a wheelchair and we went in search of our daughter once again.

We eventually found Orla and it was like the sun had just come out! She looked a good bit better than when we had last seen her and the nurses and doctors were brilliant. The feeling they gave us was one of hope. They showed us so much care and interest and gave us straight-taking, honest answers to our millions of questions. They demonstrated so much professionalism, dedication and empathy over the coming 3 months. Nothing was ever too much trouble and all the staff made me feel so involved in everything to do with Orla and her care.

1 first daddy cuddle

It was not all rosy during our time there though. We had some really tough times ahead of us and hard decisions that needed to be made; but together with my fabulous wife we muddled our way through, always guided and supported by the staff, support workers and the Reverend Jim! To quote, they were the best of times, they were the worst of times…and like all families we didn’t always get on or agree, but we did stick together and found a way to move forward and to progress. We felt like we were part of a big, ever-changing family at times, one that had a common goal in getting Orla better.

Daddy loves you

The roller-coaster ride carried on for the next 3 months, but we could see a faint glimmer of light at the end of the tunnel and as each day that passed and every hurdle we overcame the light got a little brighter. Three months and a few days later we left NICU to take our Orla home. I have never been as happy nor have felt as proud as I did carrying her in her baby car seat out through those doors.

Bonding

We have been back to visit NICU on a couple of occasions with Orla for her check-ups at the hospital and I am still amazed by the welcome we get. They all must have amazing memories and genuinely are interested to see one of their many “success stories”.

The whole episode and the time since, now being a stay at home dad has changed me more than expected. Orla continues to flourish and even though she isn’t completely out of the woods so to speak, I feel far better equipped to deal with whatever the future brings.

4 getting bigger

 

It has took me some time to write this story and at first I didn’t feel I even wanted to but it may just spark something in others who find themselves in these shoes so felt it was worthwhile. My biggest issue was letting all the memories come back to me and finding it impossible to keep on typing as the keyboard was in danger of blowing up with the tears I dripped onto it as it still makes me very emotional.

Luckily those tears are as much about joy as sadness.

There are too many people to mention them all individually, they know who they are, but our heartfelt thanks go out to them for making this particular dream come true. We feel blessed to have had them as part of our story.

5 I love swings!

Guest blog – with thanks to Martin Butler for sharing his journey through neonatal intensive care with us.

If you have a story you’d like to share please email Catriona at smallestthings@yahoo.com

 

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!