Category Archives: hospital

Bedrest – the Stuggle to Hold on to Tiny Life

My bedrest experience began in Jan 2015. I was 19 weeks pregnant with my 3rd child and was attending a follow up check at St Thomas’ Hospital in London, having had a stitch placed at 9 weeks in my cervix to prevent it opening early. An internal scan to check the stitch was doing it’s job yielded the worst possible news, my cervix had changed, I was 2cm dilated. 

I was distraught, the reason I had needed the stitch in the first place was because just 8 months earlier I had given birth to my second daughter at just 22 weeks and 6 days. With her my waters had broken at just 18 weeks, as a result of my cervix opening early. My daughter, Maya, lived for just 20 minutes. In my mind history was about to repeat itself, it seemed so unfair.

The team decided to place a further stitch, which they were able to do later that day and I stayed in hospital for a week. This was to be my first taste of hospital bedrest, the early days were a mix of sheer terror and boredom, forbidden to do anything except go to the toilet and have a quick sit down shower. Thankfully I got talking to fellow patients, some of whom were in a similar situation, there were bursts of conversation, the topics varied greatly, although a common theme was what to choose from the menu! Mealtimes helped break up the day, as did the ward rounds.


At 20 weeks I was discharged home. The feeling was that if anything would occur labour wise, little could be done to help the baby as she was under 24 weeks, so the plan was that if I made it to 24 weeks I would be re-admitted, and that way if baby did arrive she could be helped immediately.

Leaving hospital was difficult, although I desperately wanted to go home, I craved the reassurance of knowing staff were available if anything happened. At home my mind ran riot. Everyday was a challenge not to think the worst was going to happen, every trip to the toilet became a session of paranoid pad checking. Equally difficult was the challenge of staying on bedrest whilst everybody was running around doing the jobs I was meant to be doing; tending to my 6 year old, the school run, housework, cooking. Occasionally I would try to help my stressed husband, who was working full time by getting our daughter breakfast, or washing up, only to spend the rest of the day fretting that I had overdone it, panicking that those new twinges meant I caused further damage. Not knowing what was happening inside was torture.


At 24 weeks I returned to St Thomas’, although I was elated we had come this far I was also despondent about the situation ahead. St Thomas’ isn’t our local hospital, it is over 90 mins away from our home by train. For reasons I won’t include here I was unable to get the care I needed locally, so had sought a second opinion and that had taken me to St Thomas’ and their preterm surveillance clinic. It was the best place to be, but it meant only being able to see my husband and our 6 year old daughter Anjali on Saturdays. It broke my heart being separated. 

Whilst I was in hospital in London my husband continued to work fulltime. Anjali went to school then had to go into afterschool club. We had to hire a cleaner once a week and my friends between them helped cook meals and plug the gaps.

Whilst life continued in a different way at home I was left pondering the fate of our baby, who was growing bigger by the day. Each week on a Wednesday morning I was taken downstairs to the prem clinic, each scan revealed that slowly my cervix was dilating, the pain I had become accustomed to over the last few weeks was in fact the stitches slicing into my cervix as they struggled against the growing weight of the baby. The only thing slowing the whole process down was bedrest. From 25 weeks onwards my reality was that I would be having a premature baby, not if but when. I struggled to come to terms with this and found myself with the hours to kill becoming increasingly angry with the whole situation.

Prior to bedrest, prior to difficult pregnancies I had often joked how lovely it would be to be able to lay in bed and do nothing! As many of us with busy lives have, but the reality was nothing like the dream. Physically you ache all over after time, it’s difficult to get comfortable, I had to have daily injections to reduce risk of blood clots, then there was the surgical stockings…

Days were spent trying to keep grips on a sense of routine, trying to fend off boredom. The urge to sleep was enormous, but that meant being awake all night, and things always seem worse at night. The staff were lovely, chatting with them as they whisked about their day helped immensely. I would find myself asking them all kinds of questions, desperate for any light hearted conversation that could distract me from the thoughts of preterm labour. At times the atmosphere on the ward was incredibly tense, woman would come in early labour waiting for a bed on delivery, others would come for induction, some like me were waiting, praying for nothing to happen. During my time I became extremely close to several other patients who I remain in touch with today. We shared our fears, laughed together, listened quietly whilst we took it in turns to cry. Sadly one lady delivered her baby sleeping, we were all devastated, that little angel holds a place in my heart forever, as does her mother.

Time moved on, and at 28 weeks I was transferred back to my local hospital. I was delighted to be back nearer home, and had hoped that there may be a possibility that I could be discharged, however that hope was quickly dashed as I was nearly 6 cm dilated. Seeing my daughter and husband every day was the best thing ever, however here I had been placed alone in a side room and now the prospect of staying in hospital until delivery seemed even harder. The frustration of the past few weeks bubbled up and I became increasingly tearful. Although I didn’t want to deliver a premature baby the thought of another 8 or so weeks on bedrest in hospital seemed unbearable.

Wednesday 25th March I was exactly 29 weeks pregnant, it was the 1st anniversary of when my waters had broken with my second child Maya, and exactly 11 months since her birth. I felt increasingly agitated as the day progressed, not helped by the fact that the Consultant on duty was the same one present at Maya’s birth, nor that I found myself lying in the room directly below where she had been born. It felt like the universe was having a laugh at my expense and the sense of unease continued to rise. I was convinced that if my waters broke today, my baby would die. Isolated in a side room it was a real battle. The day passed without incident however, and that night, exhausted I fell into a deep sleep.

Thursday 26th March, at 5.20 I woke up feeling something was wrong. Upon moving to call the buzzer I immediately felt a warm gush, my waters had broken. Panicked I rang the buzzer and staff were in the room almost immediately. I had been on bedrest for 10 weeks, and now it would be coming to end, I wasn’t ready! Suddenly the prospect of further bedrest was what I wanted more than anything, as the reality that my baby could soon be delivered dawned.

I was taken to delivery and from there things moved pretty fast. After weeks of inactivity I was surrounded by medical staff. A scan showed the baby was transverse, there was real concern of cord prolapse and so the decision was made to deliver by c section. Neonatal staff came and briefly introduced themselves, theatre staff, so many questions. Then baby decided she’d had enough, her heart rate showed she wasn’t happy so the questions stopped and we were on our way to theatre, and at 9.53, Priya was born weighing 2lb 15 oz.


After 10 weeks of bedrest I was free to move about again, but it came at a cost. Priya was now for the time being confined to an incubator, her tiny body hidden in a tangle of wires and the guilt was incredible. I felt like I had achieved nothing. Being on bedrest is a real feat of physical and mental endurance, when you start it you have no idea when it will end, you hope to keep pregnant for as long as possible, complaining about it’s discomfort is immediately followed by a sense of guilt, at times it is simply impossible. That said, many of us do it, we enter it without thought, sacrifice our bodies and minds in our desperate bid to protect our unborn babies, we are mothers before our babies are born.


Now when I reflect upon that period, I can do so with a sense of pride too. I faced losing Priya at 19 weeks, I never dreamt I could hold on for as long as I did. There are days when I simply can’t believe I did it, not only me but my family too. The whole experience turned our lives upside down, our routines had become transient, subject to change at any moment, yet somehow we muddled through.

As my bedrest journey came to an end, Priya’s neonatal journey was just beginning, it would last 67 days and was a real rollercoaster that saw her fight for life at just 8 days old due to NEC and a perforated bowel. She came through and today is 26 months old. 


Her story continues, and as it does the value of those 10 weeks of bedrest becomes more and more evident. For those on bedrest now, I would simply say this – nothing lasts forever, bedrest will come to an end, just take each day as it comes, and keep on cooking!

Catherine Jayaram

Defying the Odds in NICU – A Father’s Belief

The day our children were born prematurely felt like the worst day of my life.

As my partner clocked up the weeks of pregnancy, the excitement of becoming a first time parent grew but all those warm and fuzzy emotions were dashed as Isabelle and Jack were delivered by emergency C-section at just 27+5 weeks.

I remember vividly being given the all clear to visit them for the first time and was escorted from the delivery floor to neonatal by a nurse.

Upon entering the unit I was guided to where my children were. Doctors, nurses, consultants and other medical experts were crowded around them, carrying out various duties to further stabilise them.

Jack in his incubator

Jack started life well – ventilated but on minimal oxygen with a nurse overseeing his progress as lines were fed into his stomach to get the vital fluids and drugs in.

Isabelle on the other hand was facing an uphill battle. No matter how much oxygen they piled into her tiny body her faltering lungs just couldn’t kick in with her sats sitting in the 60s and 70s.

The consultant’s first words to me were – ‘it’s touch and go’.

For some reason I almost instantly resigned myself to the fact that she wouldn’t make it, while hoping Jack would carry on as he started.

Each time we visited the unit over the next 48 hours there was no real progress. The sats had increased with the help of more sophisticated ventilation but on the whole, things remained bleak.

It felt easier to sit with Jack initially – you didn’t need to be an expert to see he was doing better – but we eventually said to each other ‘let’s have no regrets’ and split our time equally with Isabelle and Jack.

Days four and five were somewhat remarkable. The treatment they had given Isabelle to get her lungs going worked and she was slowly weaned off the ventilator and was placed on CPAP on day five. Doctors seemed amazed that she had made such a rapid turnaround but warned us that she could step back at any moment.

The glum look on our face lifted a little – but only briefly. In the same breath that the consultant had told us of her encouraging progress we were also informed that the latest brain scan had found a serious bleed.

“Touch and go” – Isabelle develops Hydrocephalus

A grade 3 IVH meant blood had spread throughout the ventricles and was putting pressure on the brain itself. We were informed that it could leave her with long term problems – so bad that she might not even walk if the worst was to happen.

Over the three months in neonatal I held strong for our family, but that night I had my one and only break down. The thought of one of our children being severely disabled hit me like a ton of bricks and I crumbled for a night.

It took a couple of days but I got myself back together, determined to try and solider on. Jack was still defying the odds and needing very little support having gone over to CPAP less than 24 hours after birth.

Each week Isabelle would have a brain scan to see if the bleed was spreading or whether hydrocephalous – water on the brain – had started to become a problem.

It was 50/50 whether hydrocephalous would become a problem. If the blood clot had created a blockage then the fluid that our brain creates would have nowhere to go and her head would swell at a rapid rate.

Sadly we fell on the wrong side of that coin being clipped and her head began to grow abnormally.

Another tough conversation told us that drawing fluid from the spine could sort the problem. If they removed fluid and it didn’t grow again it was likely they’d got on top of it.

If they removed fluid but it continued to grow, the only option in the long term would be a shunt – tubing from the brain to the abdomen to drain it. Something that would be lifelong and require surgery at various stages of her life to amend the length of tubing and remove damage or blockages.

The drain was done and for days on end we sat there, hoping that the fluid build-up didn’t reoccur but feared the worst.

A week passed and the next scan and head measurement was taken – no growth. Yet another sigh of relief. This trend continued and it looked like the drain had worked and stopped the problem.

Meanwhile, Jack was still working his own miracles – the nurses looking after him were almost made redundant as a result of the lack of major intervention needed!

Once home, we watched them like a hawk looking at progression. Jack took the lead and worry once again set in that Isabelle’s potential problems were kicking in early. The health visitor made her regular visits and said everything looked fine at that stage – as did the neonatologist consultant.

Isabella, defying the odds

Fast forward to the current day and I am stuck for the words – Isabelle is sitting, crawling, talking baby language, pulling to a stand and cruising the furniture. She can’t stop smiling and the consultants haven’t done a single thing except monitor since we left.

The same applies for Jack. He is doing great – but like a typical boy, he is doing it a little slower at his own pace but is still a huge credit to us and our miracle boy.

We’ve learnt to worry less as the days have passed, concentrating on the hundreds of mini (and some not so mini!) milestones we have witnessed.

Jack “a typical boy”

So what is the point of all of the above? I’ve lost count of the amount of times we lost hope. We gave in to the fact that one or both of our babies was going to have huge difficulties – that was if they even survived.

But now we are in a place which is simply incredible. Could there be problems in the future? Of course, but our babies are thriving now and a lot of the worst things that prematurity could have done to them hasn’t happened.

So no matter how bad things look for you, have belief in your premature baby. Whether you are on day one and facing an uncertain future or one year on and watching like a hawk, have hope and believe that they can defy the odds.

You’ll never stop worrying – that’s what parents do, but celebrate every achievement – no matter how small, try to bury the worries further back and enjoy the miracle that is your premature baby.

Anthony Grigorjevs

With thanks to NICU Dad Antony Grigorjevs for sharing his time through neonatal care and words of advice to “believe that they can defy the odds”.

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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. 

My first Mothers’ Day: in NICU

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

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

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

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

Not how it was meant to be

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

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

A day of mixed emotions

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

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

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

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

Watch! The #NotMatLeave Film

We are hugely grateful to the film company Little Whale for producing and sharing their own story in support of our #NotMatLeave campaign.  

Check out their short film here –

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Sign the petition! Extend Maternity Leave for Mothers of Premature Babies. 

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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Mason & Teegan-Mae: Our NICU Journey

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

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

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

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

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

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

Despite having awful morning sickness, my pregnancy was perfect.

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

Will you share Sophie’s story to raise awareness?

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

A Roller Coaster Journey: Told by a NICU Dad

From the start…

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

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What happened next?

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

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

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

And then it happened

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

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

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

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

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

Welcome to the world…

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

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

…The world of SCBU

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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With thanks to Colin French for sharing his story.

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

My Life as a NICU Mummy

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

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

My day as a NICU Mummy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Fathers Journey Through Neonatal Care

Guest Blog…

It all started on a Monday morning when myself and my wife Janine woke up for work at 5am. Janine’s face was all swollen up. We called her mum who is an ex nurse and got her out of bed to check her over. I was told to go to work and they would let me know what was happening. Janine went to hospital with her mum and after a check up the doctors suspected it was pre-eclampsia. I was called home from work and went straight to hospital.
We had never heard of this condition before, but Janine had been saying she kept swelling up and was just told it was due to being pregnant. At the hospital the doctors sat us down and explained what pre-eclampsia was and that the only way to cure it was to deliver the baby, although they would try to keep the baby inside the womb as long as possible.
“This was a massive shock. How can a baby at 27 weeks survive? We were so scared.”
The company I work for were so supportive and gave me time off to be with my wife. Over the next few days they monitored Janine’s blood pressure every hour. When Thursday came they did a scan in the afternoon and unbeknownst to us our baby wasn’t growing and was the size of a 25 week old baby. Again they sat us down and explained Janine had to give birth within the next 2 hours.The doctors also had to make us aware that our baby may not survive, and if it did it would be seriously ill and may have lifelong disabilities.
At the time it was all a blur and very upsetting, but to save my wife’s life this had to happen. The hospital explained step-by-step everything that would happen and by 7pm that night Janine gave birth to Thomas James Meyers weighing 1lb 12 oz.
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He was immediately taken away from us as expected and the medical team worked to keep him alive. At the time we were so happy that he had survived so far. I got to have a quick glance and it scared the life out of me with how small he was.
He was rushed straight up to NICU and once my wife had recovered enough we went up to see him. I knew nothing about premature babies but my wife has a prem niece so she had a bit of an understanding. All the beeps and monitors and wires on our tiny baby was too much to take in and I just cried.
Thomas stayed in Barnsley for 3 days and his condition was getting worse. He was ventilated, had a bleed on the brain and amongst other things his heart was in a bad way too. We were told that he needed to be moved to specialist hospital once a bed became available. He was eventually taken to Hull hospital where he stayed for a month. We would have traveled anywhere as long as Thomas was going to be ok.
I remember walking down the corridor at Hull with a lead nurse and saying to her “he’s really tiny, you don’t understand how small he is”. She turned round and gave me a reassuring smile – ‘We have smaller here love’. When we got into the red room I was bowled over by all these seriously ill babies. I was scared stiff. In a world of words like CPAP, BIPAP, Hi flow, Low flow, long lines, oscillator and loads of other terms.
Thomas was stabalised and then all the doctors and nurses involved in his care had a meeting around his incubator. They discussed a plan for the next 48 hours in which we were allowed to join in, there was no holding back on anything. We were told everything in detail, everything that was wrong with our son and I was shocked by how truthful they were. At the time it was all a blur. Janine was still poorly after having a c-section and discharging herself to be with Thomas. We were given a room to stay in and I called my boss to explain what had happened. He told me not to worry about work and to just stay with my family as long as I needed to. I am so fortunate to have had such an  understanding boss at the time.
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As we settled in, we were shown how to look after Thomas. We had never touched him before this point as we were too scared. This all changed in Hull as they showed us how do do his cares, which involved mouth care, nappy changing and everything else. I remember the first time I touched him I was so scared I might hurt him. He was still ventilated.
Whilst in Hull I kept a diary and I was also in charge of labeling bottles of milk, sterilising etc. It gave me something to do as sometimes the fathers felt a bit left out. We also met and spoke to other parents and took comfort in other peoples stories and shared their ups and downs. After a week the good news was that the bleed on the brain had gone, but his main issue was now the PDA valve in his heart and getting him off ventilation. The consultant spoke about trying steroids to help make his lungs grow in order to take him off the ventilator and onto CPAP; but complications could be risk of cerebral palsy.
We gave consent, they knew best and we both cried again.
“After a while it started to work and Thomas was put first onto BIPAP and then CPAP. He was also gaining weight with mums milk!”
After a couple of weeks I felt like I could return to work and travel to Doncaster from Hull everyday. The morning of my first day back I called the ward to see how Thomas was. He had a rough night but I was reassured that he was going to be ok. I went on to work. I’m a transport supervisor for a very busy worldwide company. I sat at my desk and couldn’t think straight, all I kept thinking about was my son and wife. My colleagues told me to leave work but I waited for my boss to call to check how everything was with our deliveries. When he did I went outside and told him how I felt. I was upset, I couldn’t think straight and cried again. He told me to leave work and to go back to be with my family. ‘Scott take as much time off as you need on full pay’ he said. What more could you ask for in a boss? I went straight back to Hull and felt much better when I arrived. Thomas had picked up a bit too.
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After a month in Hull, 12 blood transfusions and hitting a weight of 2lb Thomas was moved back to Hull. It was again upsetting leaving Hull as we felt so close to everyone, They had been our family for a month. We were told Thomas still had chronic lung disease. His heart valve had closed which was great news but still had issues with breathing.
When we arrived back at Barnsley and spent another 3 and a half months there. I went back to work again and was fine as Thomas was improving.
“After a total of 4 and a half months in hospital Thomas was finally discharged.
He was still tiny and was going home on oxygen, but he was coming home.”

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Since he has been home we have worked with the hospital to promote the Tiny hearts campaign for a new special care unit and have raised £5,000 on a sold out charity event!. We were also involved in the World Prematurity Day last year and have done 2 television news interviews!  I also turned up dressed as Santa on Christmas day to surprise the nurses. Thomas was a mini santa and had presents for all the hardworking nurses.
From time-to-time we go up to Barnsley SCBU to offer support to other parents on their journey now; as there is nobody better to understand than a parent who has lived through it.
Thomas is 18 months old now (15 months corrected), weighing 14 kg! After meeting with his doctor last week it is incredible how much he has progressed. He learnt to walk a few weeks ago!  He is hitting all his milestones and at present is not showing any sign of disabilities. We hope this will be remain the case.
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“As Thomas’ father I am so proud of how he has developed and am forever grateful for what the NHS has done for us.”
Thomas arriving early has made me a far stronger person than I was and now I like to get involved as much as possible with helping the hospital.
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With special thanks to Scott for sharing his story as he journeyed through neonatal care.

If you’d like to share your story, please contact Catriona at e. smallestthings@yahoo.com

The NICU Roller-Coaster

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The news hit me like a train.

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

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

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

At exactly 4 months old Jaxon came home!

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

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

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

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

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

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

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

Aimee Davis

Premmie Mum: Things I Want you to Know

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

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

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

Smallest Things

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

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

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

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

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

#FlamingJune – Taking Action for NICU Mums

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

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

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

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

radio 5 live reception

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

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

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

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Just a Little Longer Please: Time After NICU

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

I’d like to keep you safe inside,

Just a little longer please.

 

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

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

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

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

“just a little longer, please!”

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

Terrified I reached inside the incubator walls;

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

Your tiny hand gripped my finger tight.

I prayed – fight my baby, fight.

 

How could I leave my baby?

I am empty now inside.

Emotion overwhelmed me, consumed with grief and loss.

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

 

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

Lines and tubes obscured your face, the monitor alarmed.

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

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

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

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

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

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

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

 

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

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

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

 

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

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

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

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

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More hospital trips and appointments,

Corrected age explained.

Coughs and colds take their toll on little preemie lungs.

 

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

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

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

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

Just a little longer please.


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

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

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.

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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.

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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

 

A journey through neonatal care

Alexa was born at 25 + 2, weighing 588g on February 19th 2014 delivered by emergency C-section due to severe early onset preeclampsia.

I read those phrases so many times; in Alexa’s notes and on whiteboards and I repeated it so often when we were in hospital. It was what defined her and defined me. In writing it now I realise that it no longer matters. No-one asks me that anymore and I rarely think about it. And what a relief that is.

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Before she was born

I was diagnosed with early onset preeclampsia when I was almost 24 weeks pregnant. Like many other premature baby stories, it was a routine GP appointment that ended at hospital.  My normally unflappable GP looked concerned when she took a urine sample and my blood pressure. Then she called the hospital to say I was on my way and told me to go home and pack my bag. She told me to hurry because I was at risk of a stroke. The next morning the consultants were saying I wouldn’t leave the hospital before the baby was born. I remember thinking ‘but it is February what am I going to do in this bed until June?’  What they meant was that the baby was going to be delivered early.

Eight days later I started violently vomiting every 15 minutes, I had heartburn and I kept going to the loo. My blood pressure soared to 220/I can’t remember the bottom number when someone declared an emergency C-section. Nurses were panicking about cannulas and not being able to find veins. Someone waved a consent form urgently for me to sign. I remember my husband’s gorgeous and somehow calm face in a set of scrubs. I was surprised to hear a radio in the operating room. I fell in love with Amy the anesthetist. And then it was over. My husband saw our daughter. I was wheeled away. I was at risk of a fit and because of this I had to stay in hospital for ten days post-delivery.

A labour ward is hellish when your baby isn’t by your bed. There are happy joyous parents everywhere with healthy full term babies. I was terrified, disorientated and really upset.  I remember a kind of solidarity with the other neonatal unit mums, we would acknowledge each other shuffling baby-less from the labour ward to the neonatal unit and back and someone even managed to joke that the bouncing full term babies on the labour ward looked like seven year olds to us.

Being discharged

I wanted to leave the torture of the labour ward. I just wanted to go home. And once I got the all clear I rushed to pack up my room and got ready to go. But we left the maternity ward without a baby in a car seat. Just me, my husband and my suitcase. And it was too sad. I came home not pregnant anymore but there was no baby. We came home dropped my bags and went straight back to the hospital.

The early days

Alexa was tiny and skinny with dark brown skin. She didn’t look like the cuddly chubby babies we are programmed to expect. She looked weak and frail and was surrounded by a lot of unfamiliar equipment. I was shocked and frightened when I first saw her. At the start I was really confused and didn’t recognise her as my baby, I was afraid to touch her and I even panicked when some weeks later it was suggested I hold her. And I felt such a heavy burden of guilt that I had done this to her; my body had failed her. I had let her down already, before we had even started.

The (incredible) neonatal team at UCLH helped me move passed this and many other crazy and difficult thoughts and helped me find a routine. I would spend my intensive care days by her incubator, watching her, talking to her, singing to her, holding the tiny syringes of milk (she had 1 ml every hour), changing her miniature nappies and loving every tiny inch of her.

Medically

Alexa’s lungs were not good. We were in intensive care for 10 weeks not including a bounce back from a high dependency ward. She was on every breathing machine on the unit. The team tried to take her off the ventilator five times. With the help of steroids she went from the ventilator to lo-flow and then when the steroids finished she went right back to ventilator.

And in March 2014 she got really sick twice. Both times she was paralysed and sedated on an oscillator.  I will never forget how calmly and diligently the consultant led the team on both days, how steadily and respectfully everyone worked to understand what was happening. No-one one raised their voice or lost their temper or apportioned blame. People fetched us stools so we could sit and told us when to eat. I think of both of these days quite often. Primarily with relief, love, joy and gratitude to the team who saved our daughter but I also am still taken aback by how gracefully they managed such impossible pressure, stress and responsibility.

Alexa had Retinopathy of Prematurity and needed laser surgery at Great Ormond Street to prevent blindness.

She got stuck on continuous CPAP for months. There was talk of a tracheostomy. CPAP is really noisy and it blocked her vision, I thought how on earth is she going to develop with this on her face and I was convinced it was going to damage her nose.  It didn’t impact her, her development sessions are always a joy and her nose is perfect.

Alexa June

Emotionally

I would love to say that we handled it gracefully, that we were so strong and composed. But my husband and I were both a mess. I cried and cried and cried. It’s a strange twilight/ no-mans land when you have a premature baby: a) you’re supposed to be pregnant but then b) you are on maternity leave but then c) your baby doesn’t live with you. You wait and wait and wait for life to begin. I think I was jealous of women everywhere; pregnant women, women pushing prams, women with children, women going to work.. I went from being a confident and friendly person to a jittery and scared one who second guessed herself and constantly washed her hands.

People in the hospital used to say that mothers of premature babies go through a grieving process. I dismissed this at the time because Alexa was alive I told myself. And then I read Joan Didion’s ‘The Year of Magical Thinking’ about the death of her husband. She quoted Gerard Manly Hopkins:

‘I wake and feel the fell of dark not day’.

That was exactly how I woke up in those early days. It is a type of grief.

We were in hospital for seven and a half months and over this long course of time the shock, disorientation (and grief) of having a premature baby was replaced by the worry and sadness of being the mum of a sick baby. As she got bigger leaving her every evening got harder and harder. Maternal instinct is visceral and separation from your child is intense. Every night I woke up several times panicked soaked in sweat asking my husband where the baby was. Every night he would calmly say the same thing ‘It’s ok love she’s in Nursery 4, ‘XX’ is the nurse we called before bed and she’s fine’. This night-time ritual made me feel crazy.

And it didn’t stop until about a month after she came home.

The Expressing Room

The ‘expressing room’ was three plain blue chairs lined up in front of three blue expressing machines. It had bright florescent lights, no TV or radio and no privacy. And it saved my sanity. I poured my heart out to women in there and they to me. It was a counselling and therapy room where we willed each other on and told each other we could manage it.

The expressing itself was awful and amazing. A whole world of strangers talk about your ‘milk production’; nurses, consultants, feeding experts, they all talk about it to you, to your husband and to each other. You get over the embarrassment of it pretty quickly. There is not enough milk. Can you make more milk? She has no milk. She has so much milk. And if the milk is pouring out of you it’s a lovely way to focus and feel useful. But if it’s not then the whole thing becomes a very unique type of torture. Every 2-3 hours you hunch over the hideous expressing machine with an empty bottle not filling up. And the babies so desperately need mum’s milk to survive and fight on. There were a lot of tears. I ate everything anyone mentioned might help. I think I drank over 4 litres of water one day (this hurts your bladder A LOT). One Caribbean mum gave me a potion made in homes in Ghana that she got in Brixton and we cooked it up in our Hampstead kitchen. Eventually after 6 weeks of this, I got a prescription – and low and behold ‘mum’s milk’ came pouring out. We filled up our freezer for her.

Through it all the solidarity and strength of the mums in the expressing room kept me going. The support and the laughs. If I listed the jokes they wouldn’t be funny but there were tears of laughter on some days. And other days there were big wet tears of sadness and fear and frustration.

Family life on a neonatal unit

We were in hospital so long we had a lot of the usual baby ‘firsts’ with the neonatal team; a bath, sitting in a bouncer, tummy time,  tasting puree, a walk with Alexa in a pram.  It could have been awkward or strange but the Neonatal team made these moments fun and full of hope that we were able to do them.

Alexa July

I would spend hours with her sleeping on my chest. We read ‘The Wind in the Willows’ and ‘The Velveteen Rabbit’. We sang country songs (the poor nurses..). The hospital play specialist would come and see Alexa and me on Friday afternoons. To quote her, she would help me ‘bring the world to Alexa’. I loved our chats. Amidst the worry and heaviness of having a child in a high dependency unit, she reminded me of the joy of being a parent whose job it is to explain and explore the world with my daughter.

Nurses, consultants and registrars all became an extension of our little family of three. There was so much love in that ward, my heart still stops a bit when I think of it.

Leaving the Neonatal unit

While we were in hospital I developed an unhinged relationship with a pamphlet called ‘the pathway to home’. We never seemed to have it nor were people even mentioning it and the hallways of the hospital seemed lined with smiling parents reading it.  We had been in hospital for six months when it arrived at Alexa’s cot. And then suddenly we were planning for home, what we needed to do, what the hospital needed to do, who was involved, how to get ready. We had a discharge planning meeting with about 14 people giving input. Oxygen was installed in our flat (what?!) and friends sent me baby lists.

We finally left UCLH on a Friday night with our baby (and her oxygen tank) in a car seat. We had made the same journey twice a day for seven and half months to visit her and now she was making the journey with us. The cab driver went via Camden. I remember looking from gorgeous little Alexa and her oxygen tank to the Camden Friday night partyers and being jolted by the juxtaposition of it. I wanted to stick my head out of the cab and shout ‘Have Champagne!!! We’ve been in hospital for SEVEN AND A HALF MONTHS AND WE ARE FINALLY GOING HOME!!!

Early days at home

Champagne on the streets of Camden or no, we were not prepared for what it was like to bring Alexa home. We had become completely institutionalised and used to having a team of nurses and consultants around to help us and answer our questions and concerns. Alexa came home on a feeding tube, on oxygen, and I don’t know how many permutations of her medicine schedule we tried in order to line everything up correctly so that we gave the right gaps for the right medication and had some time for both of us to lie down. The seriousness and responsibility of it was terrifying. Her reflux meant that within 20 minutes of being home she vomited all over our cream carpet in the lounge. (I still smile fondly at that stain).

The winter was hard. We had to be really careful to avoid coughs and colds. And you can’t go to ‘Mini Mozart’ with an oxygen tank. It was lonely. And like any other working woman who has a baby I found it strange being at home a lot. But she was IN OUR FLAT! The joy of having her cot at the bottom of our bed and waking up with her in our room never got tired. And life got easier. The feeding tube came out quite quickly. The medicine reduced and then stopped. Home oxygen can be annoying and things take longer but it is manageable and before I knew it I was slipping the O2 tank onto my back and off to the park answering (with a pained smile..) for the millionth time the nosiness of a stranger who wants to know what happened to the baby.

And then they weaned the oxygen. The first time we took her off for 30 minutes; my husband starting skipping round the flat from room to room with her laughing and shouting ‘look at this, look at this’. It was so easy to move her without the wires and the portable tanks. And we saw those gorgeous little cheeks and face tube free! It was a slow slow wean and when she caught an inevitable bad cold (twice) we went to A&E and back to full time oxygen. But in May 2015 after a sleep study, she came off oxygen completely.

Now

Alexa is now a happy, chubby, curious, joyous toddler. And so we are a happy joyous family of three. Our life is happy and it is healthy.  We do normal things. We go to the playground, she plays with her friends and she sings and dances at bilingual beats on Wednesday afternoons. I have even returned to work.

alexa 2016

And every now and then when I see Alexa doing something ordinary and every day my heart bursts with relief and happiness at the normalness of it and the recognition that the pain and worry of our start is behind us. I look at her and I realise that we made it, the three of us, we have everything and we are happier than I ever thought we could be.

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With the support of her local MP Tulip Siddiq, Lauren is working to change the current UK legislation to make maternity leave longer for mothers of premature babies. 

SIGN NOW!  If you would like to support the campaign to give mothers more time with their premature babies, please SIGN the Smallest Things petition calling upon the Government to  “Extend Maternity Leave for Mothers of Premature Babies”

My missing trimester

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

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

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

beautiful

Daisy Daisy

Daisy Daisy – my friend at university used to call me that, because she said I looked like the comedian Daisy Donovan and had similar facial expressions. As a care free 20 year old I had no idea that one day I’d be called that again, instead because I’d be milking myself several times a day.

I’d had no breastfeeding versus formula feeding ideals when I was pregnant. I felt quite relaxed about the whole feeding thing. As a formula fed baby myself I knew that it wasn’t this big evil devil food that it is made out to be – I had turned out OK! But I was quite open to giving breastfeeding a go, although I’d had a strict word with myself to never get stressed over it. I’d had so many friends who had been truly miserable during those first few weeks, battling with breastfeeding and an inconsolable baby. I was not going to be like that. I was not going to be stressing about milk production. Not me. No way. And then I had a premature baby.

Emma NICU

Less than an hour after my 29 weeker was born, having been resuscitated and rushed off to the neonatal unit, me laying on the theatre table amongst this aftermath of chaos, my poor sliced up womb now out on my belly being sewn back together, the neonatal sister burst in; ‘Michelle, were you planning to breastfeed? We need to know for the care plan.’ My husband and I just looked at each other in bewilderment, each looking to the other for the answer to the question. It was my husband that answered, ‘Erm, we think we were going to do a bit of both?’ I had no idea at that point the direction that my breastfeeding journey was heading, instead I had images of a tiny baby suckling at my breast the next day!

It starts with the hand expressing. I was shown this technique by about three different midwives until I was shown the correct technique. I managed to get my first lot of colostrum on the second night, 0.5ml if I remember rightly. I felt like a superstar. I still at that point, had no idea about the pump. I had signed the consent for donor milk, which you don’t even think twice about, because by this point you know how vital it is that your tiny baby has breast milk. It is only now I sit and think about the donor milk that I feel upset that my baby had another woman’s milk in her first few days of life. That was certainly not part of my ‘relaxed about feeding’ plan. I carried on with the hand expressing for two more days when the neonatal sister mentioned the pump. Because I was so tired from all the medication I was taking, as well as my three litre blood loss, she said she would show me the following day.

The following day we arrived to discover that Emma had moved from ITU to HDU. Although just two doors down it was like a different world. Different nurses, different babies, different noises and beeps. I felt immediately on edge, as we had just started to settle in to NICU life, and now our routine had changed. I should have felt elated really, Emma wasn’t sick enough for ITU! But now it was all different. I know now that the sullen and stressed nurse who showed me the pump was brand new herself. It was five minutes of ‘this is how this goes together, use this setting, turn it up as far as you can manage.’ And that was it. I just didn’t know better at the time, I really thought that was it, so I just got on with it. I will never ‘blame’ the nurse for it, but I really think that was one of the main reasons why I always struggled. My milk had ‘come in’ that day. I think I got about 10 or 20 mls. I was told that was brilliant, and so I just carried on. It was so painful that first few times, feeling my wounded insides contracting with every pump, I’d often be in tears in the express room.

Expressing every 3 hours, 8 times a day and during the night is really, really hard work. In the early days I didn’t really take notice of the amounts, I just expressed, almost in a robotic fashion. It wasn’t until I was out of that initial NICU ‘two week fog’ that I started to take notice of what I was actually doing, and also what everyone else was doing, and that’s when the ‘express stress’ began.

The stress starts when you notice the amounts other mums are getting, and then you compare it to your piddly amount in the bottom of the smallest pot. I saw mums with the super duper large pots full to the brim. I also noticed the freezer, jam packed full of milk from the other mums. Why wasn’t I getting these amounts? ‘Because you are anaemic. Are you eating enough? Are you drinking enough? Are you stressed?’ Of course I was stressed, I delivered my baby at 29 weeks, nearly lost her, and now we have to exist in this neonatal unit………Of course I was stressed, and not eating enough, and not drinking enough. I was also hugely jealous of my husband, who got much longer cuddles and much longer quality time with Emma, while I was always rushing off to the expressing room.

I started carrying a huge bottle of water around everywhere I went, eating flapjack like it was going out of fashion, smelling like curry due to my intake of fenugreek tablets, and turned the pump up as far as I could possibly manage. Bad move. Doing that results in horrendously cracked and painful nipples, and eventually, mastitis. This meant that when we started encouraging Emma to latch, it was eye wateringly painful for me. I looked at picture of her while expressing, I expressed by the incubator, I sniffed her blanket like I was told to, I ate a box of ‘lactation cookies’ sent to me by my lovely friend, but nothing worked.

breast feed

Twice a week we would get so excited for weigh day, but that excitement then always turned in to anxiety for me. Emma was doing so well, gaining weight like a trooper, but with every weigh day came an increase in milk requirements, meaning I needed to express more and more, and I was still struggling. My ‘personal best’ at this point was around 50mL, I was still on the small pot, and it was really upsetting me. My friends talked of a ‘let down’, of feeling full and empty, but I felt none of these things, and therefore I felt like I must have been doing something wrong.

We continued with the breastfeeding as well as the expressing. Emma did so well breastfeeding and I was starting to enjoy it, until she decided one day to stop breathing while feeding from me – enough to put a halt to the most successful of breast feeding journeys! I decided then to just concentrate on expressing what I could, and we introduced Emma to taking the expressed milk from a bottle. She took to it like a dream, and I managed to just about keep up with her milk requirements. I would still put her to the breast occasionally, and I loved it, but was petrified she would stop breathing again.

nicu

Once home, and having battled with mastitis twice, nearly resulting in an admission for intravenous antibiotics, I decided to stop expressing. At the time I was excited to stop and feel freedom from the pump, but once stopped I felt really sad. I missed seeing her latched on to me, her little face looking up to mine. But I knew that I couldn’t be ill again and look after her, especially now my husband was returning to work. She had breast milk exclusively for nearly 8 weeks, and although I was sad to stop, it is more than I ever imagined I would do when I was pregnant, and for that I’m pretty proud of myself.

This expressing and breastfeeding battle is one felt by many mums of premature babies. Your body isn’t expecting to start producing milk so soon, that’s the first battle. And then you don’t feel all those lovely baby hormones they tell you about, as you have very limited skin to skin time with your tiny baby, and they very rarely latch straight away, so you don’t get that natural increase in milk production. You are stressed, confused, bewildered, guilt ridden, tired, and terrified that your baby may not survive. Is it any wonder that so many have difficulties expressing?

I look back and wish I hadn’t felt so stressed over expressing, as it seemed to dominate most of my time and thinking during the days in NICU. I also look back and laugh a little, knowing that I went against everything I had felt so strongly about, but how can any best laid plans come to fruition when your baby decides to make an early appearance?!