Neonatal Leave & Pay – Consultation

The wonderful charity The Smallest Things has been campaigning for neonatal leave and pay for NICU parents since 2015. Founder Catriona Ogilvy has made fantastic progress advocating for NICU parents and securing parliamentary debate on this important topic.

The Department for Business, Energy and Industrial Strategy (UK government department responsible for employment rights) have published government proposals for new employment rights to support parents of babies requiring neonatal care. The Government wants to consider the option of providing Neonatal Leave and Pay. This would be an entitlement to be absent from work to care for the baby, so that, as far as possible, parents have additional time at home with their child to compensate for the time their child was in hospital after birth.

These proposals would provide a huge benefit for parents of NICU babies who often feel that they have missed out on quality time to bond with their babies once they return home. It is also incredibly difficult for parents to return to work as planned following a NICU stay. I had intended to return to work at around nine months, mainly for financial reasons to avoid nil pay. I decided to take a period of unpaid leave to enable L to reach his corrected age of 1 before I returned to work. Despite this, he was still vulnerable at this age and rapidly lost weight once he started nursery.

Please consider responding to the consultation – which closes today (11 October) to share your views on neonatal leave and pay. The consultation can be accessed at the BEIS Consultation Hub.  The corresponding consultation document provides the context for the proposals and The Smallest Things has produced a helpful guide to their response.

I have responded in support of the proposals. The first question includes a list of those who should be eligible for neonatal leave and pay. The proposed list includes:

• The mother of the baby or babies;
• The father of the baby or babies;
• The mother’s spouse; civil partner or a partner who will be living with the mother and
baby that is in neonatal care in an enduring family relationship;
• The intended parents in a surrogacy arrangement (where they are eligible for and intend to apply for a Parental Order);
• The intended parents in cases of adoption, where the intention was that the baby or
babies would be placed with the individuals that they have been matched with at birth or shortly after birth

I have posted previously about the struggles that single parents experience in the NICU and believe that this should be recognised (if possible) in this entitlement. For single mothers recovering from a traumatic birth, the role of a grandparent or other significant person is often crucial to their recovery and support to the baby. In many cases, it is likely that this person will often take on a secondary carer role to the child in the absence of a father. I have provided the following response to request that the status of single parents is taken into consideration:

Whilst I agree with the sentiment of the defined individuals, this does not recognise the role of secondary carers – often grandparents – who support single parents in the NICU.

I had my son at 30 weeks and he remained in NICU for six weeks. As a single mother, my mother provided support and care to myself as I recovered from my son’s traumatic birth and my emergency c-section.

My mother was recognised by the NICU as my ‘partner’ and had the same visitation rights as a parent (grandparents and other family members are not usually offered 24/7 visits to limit the risk of infection). She played the same role as the many fathers that I saw on the NICU – she visited my son every day but had to juggle her caring responsibilities for the two of us alongside her work. She also incurred significant costs paying for taxis to the hospital to visit us in the evening (she does not drive and I could not drive following my surgery) and hospital refreshments for me to eat once I had been discharged, as our NICU did not provide any facilities for parents.

It would be helpful if the definition could include other individuals who will be the secondary carer for NICU babies. This would not incur any additional costs if the policy is designed to be offered to two parents.

 

What Prematurity means to me this World Prematurity Day

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Today is World Prematurity Day; the day that the reality of prematurity may just enter into the consciousness of those who haven’t been affected by the harsh realities of prematurity. Approximately 60,000 babies are born prematurely in the UK every year – roughly 1 in 11 of births. Around the country, supporters of our little fighters will be taking part in Little Lights Walks to raise awareness and crucial funds for Bliss. Last year I was one of those supporters and even made it into our local paper. This year I’m a busy mum working full-time so I’ll be flying the flag for World Prematurity Day through social media – and I’m delighted to learn that Pampers is again supporting our babies and our NICUs through a generous fundraising campaign. Joining in on a Bliss campaign, Pampers will donate £1 to Bliss for every post shared today on social media with the hashtag #PrematurityIs and by also tagging Pampers_UK on Twitter.

So what is the reality of prematurity? The answer will of course differ for every parent. But I’d like to reflect on my perceptions of prematurity this World Prematurity Day:

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#PrematurityIs losing your parental control. You don’t get to choose when you hold your baby – you’re lucky if you get to hold your baby on the same day that they’re born. Planned to have that uninterrupted ‘golden hour’ after the birth? Skin to skin and immediate breastfeeding? No chance. Your baby is whisked off to NICU before you can even get a glimpse of your newborn’s face. And when you FINALLY get to hold your baby, you’ll be sharing your moment with someone else. A nurse or two will be helping you get accustomed to all those wires. Maybe your NICU neighbour will be having a peek across the ward. No control, no choice.

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#PrematurityIs the most unbearable loneliness. You’re alone on the postnatal ward, listening to the cries of healthy term babies. The catering staff pity you when they spot the empty space where the cot should be alongside your bed. The day arrives when you’re discharged from hospital and your heart breaks. I still feel teary thinking of that long walk to the car, sitting in the front seat surrounded by ‘Baby Boy’ balloons and crying uncontrollably. Although my baby had never been in our home, it felt empty. I started to build a photo wall in L’s bedroom so I could feel close to him when I expressed milk in the middle of the night. 18 months on, the photo wall remains as a tribute to his NICU journey.

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#PrematurityIs nothing targeted at newborn babies being suitable for your newborn. Despite the fact that your baby has been newly born, they won’t reach the milestones and sizes labelled with their status for many weeks or months to come. I naively asked a family member to dig out the newborn outfit I’d bought a few weeks earlier for my future baby to wear home from hospital. It was the cutest little teddy bear sleepsuit with a matching hat. Maybe the hat would fit my preemie until I could buy special clothes? No chance! Even when L came home, the outfit was still gathering dust in his drawer alongside all the other newborn clothes that swamped him. The frustration of newborn clothing being unsuitable for my newborn was short-lived once I discovered the excellent range of preemie clothes available. But it was harder to find things suited to L’s developmental progress. When his peers were starting to coo and gurgle, L was still growing in his incubator. The milestones that excited me, like L finally being allowed to have his first bath, filled me with joy. I discovered at a neonatal conference that Bliss had samples of milestone cards tailored to the moments that mean so much to the parents of preemies. I used these to decorate my photo wall but it would’ve been a great help to have used these in the ‘proper’ way in hospital; something to share on social media and document the progress that L was making in the unconventional way.  To help other premature parents celebrate their baby’s development, these milestone cards will be distributed to neonatal units across the UK by Pampers and Bliss.

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#PrematurityIs being obsessed with your baby encountering germs and unwanted contact with strangers – and rightly so. Babies who leave NICU are still small and still vulnerable. A micro baby attracts all sort of attention whilst out and about. For some reason, the general public think that tiny babies are fair game for unwanted contact. So parents of preemies can’t enjoy the ‘normal’ activities until they reach the stage where they feel the barriers can slip slightly. For me, this was when L started actively putting everything in his mouth. But until that milestone, I always had an array of hand sanitisers on my person and armed my pram with a ‘no touching sign’. Despite my best efforts, L still ended up in hospital twice before his first birthday with norovirus and the dreaded bronchiolitis.

#PrematurityIs needing tailored products and equipment to make your baby comfortable. We are very fortunate in the UK that we have fantastic provision to support our preemies in NICUs across the country. They are equipped with micro versions of the medical equipment preemies rely upon; teeny eye masks to protect delicate eyes from the jaundice lamps, miniscule cuffs to record blood pressure and even little cushioned pads to hold IV lines in place. But during L’s NICU stay in 2016, the smallest nappy available (size 0) wasn’t small enough. It nearly reached his chest and looked comical.

The nurses showed me some nifty nappy origami skills to make him as comfy as possible. However, nappies which are folded to size which can affect healthy development of a baby’s hips and legs. This year, Pampers developed its smallest nappy yet for preemies weighing less than 1.8lb (800g) – meaning nappy origami can be a skill of the past! These nappies aren’t available in the stores and Pampers committed to donate around 3 million nappies to hospitals across the UK and Ireland. 59 of the 206 neonatal units in the UK and Ireland have taken advantage of the donation, which equates to supplying over 18,285 preemies with properly fitting nappies.

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#PrematurityIs wanting to give something back to those who helped you and your baby through your darkest days. All the preemie parents that I know have been involved in fundraising for both their Units and Bliss through attending and organising events. Regular readers of my blog will know that I organised several fundraising parties for our NICU during my maternity leave. I raised over £1000 and I feel incredibly guilty that I can’t continue these events now that I’ve returned to work. Hopefully I’ll carve out some time in the future. But for now, I can help from behind my computer screen.  This World Prematurity Day, Pampers will be joining in on a Bliss campaign, and that for every  social post shared on 17th November which includes what #PrematurityIs to you, and tagging @Pampers_UK on Twitter, they will donate £1 to Bliss. So please share what Prematurity means to you – your thoughts and a few clicks can help support premature babies and their families!

This post has been developed in conjunction with Pampers UK to raise awareness of World Prematurity Day 2017, Pampers Preemie Protection nappies and the social media campaign #PrematurityIs for Bliss, the charity for premature babies #ad 

Pregnant and Depressed – how I survived antenatal anxiety and depression

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As Mental Health Awareness Week draws to a close, I’d like to share my story of a condition that isn’t really talked about. During my pregnancy, I suffered from antenatal anxiety and depression. Some people call it perinatal anxiety. Others use the term prenatal anxiety. But most people don’t have a clue that this condition exists.

There have been excellent awareness-raising campaigns over the years to encourage discussion about postnatal depression. Most expectant mums are aware of the so-called ‘baby blues’ and storylines such as Stacey’s postpartum psychosis in Eastenders have raised awareness of other conditions too. I have suffered from anxiety and panic attacks over the years, so I discussed my history with my GP and wondered if I was at higher risk of postnatal mental health issues. But nothing prepared me for my anguish during pregnancy.

Despite L’s eventual premature birth, my actual pregnancy was not complicated. I had scans at 8, 12 and 20 weeks which showed a healthy baby boy. I only had one episode of morning sickness throughout my pregnancy. But the circumstances surrounding my pregnancy were far from ideal. I had been dating L’s father when I became pregnant and he blocked all contact with me after I told him the news – once he’d fired off a message saying that he wanted nothing to do with the baby. I was living in a four-person houseshare in London, with no family nearby. I worked full-time in London in a busy, stressful job that I loved dearly. I had wonderful friends in London who supported me but had equally busy lives and lived all across the city. I knew I didn’t want to leave London but I felt overwhelmed about how I was possibly going to juggle a baby with my lifestyle – and how on earth I’d manage alone.

So clearly I was pretty stressed. I kept making mental lists in my head, weighing up my options and calculating the pros and cons. I began househunting for 1 bedroom flats within my budget, making allowances for a full-time London nursery place. The sums just didn’t add up. I tried to figure out how I would travel on packed commuter trains with a baby and buggy in tow. Surely no-one did that? How do London mums manage? Do they all have husbands? I was obviously the only person stupid enough to get pregnant without a partner. My head was spinning with all these conundrums before I had even reached the 12-week stage.

My stresses were consuming me, but I reasoned that I was in a stressful situation so it was a normal reaction. I had already requested counselling from my GP to help me consider my options. But slowly I began to crumble. My panic attacks returned for the first time in years. My heart would be racing and I’d be desperate for fresh air. One day I was walking along one of the London bridges and everything began to spin. I couldn’t breathe and it felt like the bridge was slipping away from under me. I ran as fast as I could to the doctors surgery (thankfully I had a counselling assessment in a few hours time) and was in such a state that they escorted me to a private room. I broke my heart to the woman who assessed me (I have no idea of her actual role) and could not control my tears. I wish I could say that she signposted me to the correct support, but she was not helpful.

I continued to struggle. Work became difficult as every task would overwhelm me – a real shock to the system, as I have always loved my job and relished challenge. But the thought of having to do a task in by a certain deadline (e.g. a few hours) would floor me. I could barely sit still at my desk. I was tapping my feet, clenching my hands, anything I could do to distract from the anxiety that swept over me. I returned to the doctors and I was signed off for another two weeks.

I wish I could provide a chronological narrative, but my illness is a huge blur. I guess my desire to tell you my story in a logical sense probably explains why I was suffering. I find comfort in order, routine and a clear plan. My pregnancy threw everything I loved and worked for into disarray. I couldn’t comprehend what was happening to me and the hormone surges produced anxiety that I had never thought possible. I can remember phonecalls to my mum, begging her to help me. A bus journey back from visiting a friend (also pregnant) where I had to clutch the handrail the whole time and could only reassure myself with the thought that there were other people on the bus to help me if I collapsed. There were days at home crying, not really understanding why.

After visiting another friend, I got lost on the way home and pulled my car over and sobbed. He tried to explain a route to me on the phone but I was inconsolable. Eventually he had to come and escort me back – I spent the journey on edge, crying whenever he drove too quickly and convinced I would lose him. We were driving in my hometown, on roads that I had driven across many times before. At my lowest, I remember feeling so dizzy and ‘unreal’ that I lay on the floor of my mum’s bathroom just crying and screaming. I got myself in such a state that I pulled my jaw somehow. My mum struggled to calm me down as I convinced myself that I needed to go to A&E immediately.

I needed help desperately. I was convinced that my stress would be bad for the baby. There was a sticker on my maternity notes which basically confirmed my fears too. I still carry guilt to this day that my placenta failed L because of my ill health. I’ll never know for sure. Luckily, being pregnant provides access to specialised mental health care and faster referrals. But as with most NHS services, the provision differs hugely around the country. I have a fairly unique experience of accessing both NHS England and NHS Wales care during the same pregnancy, as I relocated but remained under dual care as I continued to work in London.

In London, I fell victim to the complex system of the different health trusts. I was passed from pillar to post and the confusion about who was responsible for me actually caused me more stress and anxiety. My care was something along these lines:

  • CBT – accessed in a GP surgery but not my own. It was only a 15 minute walk from my own surgery, so I was happy with this service. The CBT was helpful for accepting that I was under a lot of stress therefore it was not surprising that I was feeling this way. We also practiced mindfulness which I enjoyed.
  • A one-off pregnancy anxiety/stress workshop – this was in a local children’s centre and I was referred by the CBT service. This was an excellent workshop and it helped SO much to meet other women who were feeling the same way. I wish it had been an ongoing initiative.
  • Perinatal team – my GP had mentioned the existence of a perinatal team at my first appointment to confirm my pregnancy. She anticipated that I would need their services given my history and the circumstances of my pregnancy. Despite the fact that she referred at the earliest opportunity, I had not received a response by the time I became unwell. It took a lot of chasing and phonecalls to the GP to finally get accepted onto the team. It wasn’t worth the bother. I had a few strange sessions with someone based in the hospital where I was booked to give birth (which was what I expected) but she specialised in caring for children. I wasn’t really sure what she had to offer me as we seemed to just have counselling-type conversations. One day it all got too much and I spent most of the session shrieking that I couldn’t cope with my feelings anymore. So she referred me to the psychiatry team.
  • Perinatal psychiatrist – finally I felt like I was getting somewhere. This appointment was also at the hospital where I was booked. Despite the fact that the psychiatrist spent the first 10 minutes telling me that the other perinatal woman wasn’t actually qualified to help me (!), she listened to my symptoms and finally gave me a diagnosis. I had ‘severe antenatal anxiety and antenatal depression’. I cried tears of relief as someone finally validated my symptoms. She prescribed me anti-depressants and reassured me they were safe for pregnancy. The appointment seemed too good to be true – until I was told that I was actually accessing the wrong service for my postcode, and I needed to be transferred to a ‘community team’. I had no idea what that meant.
  • Another perinatal psychiatrist – so this turned out to be my ‘community’ referral. This was in a different hospital, miles away from where I lived. Well when I say miles, it was a 30 minute bus journey which is significant in London terms! I had an amazing appointment with the consultant. She really understood my concerns, asked pertinent questions and devised a care plan for me. Unfortunately, I only saw her a few weeks before I gave birth and I had already moved back to Cardiff. I wish I had been able to access her services from the start as I know she would have made a real difference to my care.
  • Mind counselling – now this referral came out of the blue. I think it must’ve originated from my GP surgery, but this care made the world of difference to me. I accessed free counselling from Mind on a weekly basis for a set number of weeks – I can’t remember how many but I know my sessions were extended. I had the most wonderful counsellor who remembered every detail that I told her, had the perfect balance of empathy and advice and made a tangible difference to my life. She encouraged me to complete exercises before each session; one of these was compiling a list of pros and cons of living in Cardiff or London. I had been so set on keeping my London lifestyle. And it was such an obvious exercise to complete. But once I took the time to actually consider my options, the answer was staring me in the face. Cardiff could offer me the stability and support that I so desperately needed. My counsellor helped me to come to that conclusion on my own. I spent many hours with her talking about my deepest fears and how I was feeling. She helped me turn a corner in my pregnancy and I am eternally grateful. I will be donating to Mind once I return from maternity leave.

Thankfully (for both pregnant me and you the reader as this post is rambling on…) my care from NHS Wales was much more straightforward. My midwife made a referral to the perinatal team. I made one phonecall (out of desperation from the ping-pong in London) chasing up my referral and I was allocated a mental health nurse to support me. She came to my house to visit me and we’ve never looked back. I have accessed amazing services through the perinatal team – support groups, walking groups, regular visits from the nurse and nursery nurses, a jewellery support group, medication review and a psychologist – all seamlessly arranged by one point of contact.

I won’t apologise for the length of this post. There is very little online content about antenatal anxiety and depression. I should know, I spent hours searching for it. And what I could find didn’t reassure me that things would get better. It certainly didn’t happen overnight and my care was complicated. I didn’t magically get better once my baby was born – but that isn’t surprising considering the trauma of L’s birth and his subsequent neonatal stay. But I had already made the appropriate connections with NHS services who continued to support me and I was on medication which potentially minimised my symptoms.

And of course, despite all the support I received, the antenatal anxiety and depression didn’t just go away. Whilst things remained stable, so did my mood. But I had a massive relapse once I was admitted to hospital before L’s birth. I didn’t sleep for 48 hours. I had the worst panic attack of my life, needing to ring the buzzer for the nurses to calm me down, and my mum was called into the ward to try and help me sleep. But that isn’t surprising considering the enormity of the situation I found myself in.

Antenatal anxiety and depression is a terrible condition. Everyone expects you to be excited about the anticipation of your new arrival. You should have that ‘pregnancy glow’. Maybe you’ll have a little moan about swollen feet and morning sickness, but no more than that. You’re lucky to be pregnant, right?! It’s an amazing thing! And yes, it is. But antenatal anxiety and depression is/are debilitating conditions. Be kind to yourself and speak to your GP or midwife about your feelings to access the support that you need.

More information about antenatal anxiety and depression can be found on the following sites:

A Little Thank You – International Nurses Day

Today is International Nurses Day – and I’ve never had so much interaction with nurses as I’ve had over the last year. For six long weeks in the Neonatal Unit, my precious little fighter was cared for by a fantastic team of nurses at the University of Wales Hospital Cardiff.

Nothing can prepare a new mother for handing over (not literally – most NICU mums don’t get that golden hour after birth) the care of their baby to someone else unexpectedly. Despite the many hours NICU parents spend at their baby’s bedside, they cannot be there 24/7. As a minimum, parents must leave for handover times. More likely, parents will leave the unit for a night’s sleep (or broken sleep whilst setting alarms to pump). Parents must accept the difficult reality that their baby’s 24/7 caregiver is the NICU nurse.

I found it hard to accept this. I missed the opportunity to put clothes on L for the first time. I wasn’t the first person to see him in his cot, after a long month staring at him behind his incubator walls. I was constantly told that I needed to touch L a certain way, hold him in a particular position and ask permission for skin-to-skin. I began to resent the nurses, feeling jealous that they got to call the shots on the best care for my baby.

But once the shock of L’s premature arrival began to slowly subside, I started to appreciate that the nurses wanted the absolute best for my little fighter. They wanted to support me to be the best mother I could be, adapting my expectations of what a newborn needs. They talked me through the myriad of medical screens next to L’s beside and involved me in his care, showing me how to feed my baby with my own milk by holding his syringe. It sounds so mundane in writing, but it felt amazing to be helping the milk flow.

After three weeks, L was transferred from NICU to SCBU for his final three weeks of care (not that I knew the timescales back then – a discharge date is never promised). I was told that the SCBU nursery would be the chance for me to get more involved in L’s care, doing things myself and preparing for home. But the nursery was the hardest stage. Home was in sight, L was doing well and I desperately just wanted to get my little boy home. My fighting-against-the-nurses mentality was slowly creeping in. I constantly questioned why they weren’t pushing him more, increasing his feeds, rousing him to wake. I was frustrated and would often sneak off for a little cry when I didn’t hear the answers I wanted. I needed help.

And along came Becky. With a stroke of luck, Becky was in charge of L for a number of consecutive shifts. She used her experience to talk me through why things weren’t moving as quickly as I liked – and why that was the best thing for L. She would let me rant my frustrations out and then discuss the next practical goal to focus on, helping me look forward to milestones rather than constantly fixate on the end goal of home. Slowly, I could recognise the progress that was being made. L would take an extra feed from the breast. His incubator would be turned down a degree. Becky changed my outlook and I enjoyed the small successes along our journey.

One of my favourite NICU memories is L’s first bath. I had so jealous watching other mum’s get involved in bathtime and always nagged Becky to remind me when L reached the allowed gestation for a dip. When the big day arrived, despite my excitement, I wanted to wait for Becky’s next shift so we could do it together. The reality of putting my 3lb-something baby into a bath was more daunting that I expected. So it was Becky that gave L his first little dunk; she swished him about on his tummy and he seemed so content. I plucked up the courage to do it myself and tried to copy Becky’s moves.

Thankfully, L did get to go home. By changing my mindset, I had been focused on the things that I could do (such as seeking breastfeeding advice) to benefit L rather than getting frustrated. A few weeks after discharge, I took L along to the SCIPS (the UHW’s Neonatal Unit charity) teddy bears picnic and L was reunited with Becky. She was delighted to see him and beamed when I handed him over for a cuddle. I got the chance to enjoy a much-needed cup of tea in peace as Becky had scooped L off to coo over him. It was so lovely to see that even outside of the unit, she cared about L just as much.

Becky is a wonderful nurse who shared her expertise with me to make my life easier on our NICU. There are hundreds of other neonatal nurses like Becky around the UK, working closely with parents each day to provide the best care for premature and sick babies. I’ve recently blogged about the incredible new nappies for preemies – the Pampers Preemie Protection range – which is designed for babies as small as 1lb 8oz. The expertise of NICU nurses has been used by Pampers to produce the perfect preemie nappy; Pampers conducted 10,000 hours of research with over 100 NICU nurses to design the contoured fit that helps them grow without mobility challenges, the noiseless tapes help to protect tiny ears from stressful sounds when being changed and the breathable materials designed to protect their extra delicate skin.

To celebrate International Nurses Day, Pampers is continuing their partnership with Bliss (the charity for premature and sick babies) in their amazing work to support premature babies, families and also their work to support NICU nurses, including neonatal care training and education. Following the success of the #PowerOfBabies call to action, Pampers will donate another £1 to Bliss for every ‘Thank You’ message about NICU nurses shared on social media using #alittlethankyou.

So please get involved and share your stories – let’s celebrate the amazing nurses around the world who care for our little fighters in their most vulnerable times.

This post has been developed in conjunction with Pampers UK to raise awareness of the new Pampers Preemie Protection nappies and the social media campaign #powerofbabies for Bliss, the charity for premature babies. #ad

The Perfect Preemie Nappy?

Pampers P3 nappy in palm of hand

I’ve always been a planner. I love a to-do list and I hate surprises. Everything in my life is planned to the finest detail – at least it was before I became a mum! Childbirth is meant to be spontaneous and I desperately tried to control whatever I could before the ‘big day’. I was feeling pretty smug that my hospital bag was all packed by 29 weeks, with a checklist detailing what should be packed at the last minute. I had stockpiled so many size 1 nappies that my mum had convinced me to move onto size 2s because apparently babies grow out of newborn nappies quickly….

Fast forward a week and my meticulous planning had paid off. Me and my hospital bag were checked into the Postnatal Ward and I had all my home comforts to hand. But my tiny 2lb baby L was in the NICU. I had never imagined for a second that I’d have a baby so small and early, let alone the practicalities of the right size nappies and clothes. Clothes could be forgone for a while; like most newborn preemies, L was only allowed to wear a nappy to receive phototherapy treatment for jaundice. But I was asked to supply nappies for him and was told to buy size 0 nappies. Size 0 was something I associated with supermodels, not babies.

So I sent my aunty off to the shops and I was thrilled when she came back with a packet of Pampers New Baby Micro (Size 0) nappies. There was something reassuring about seeing L in a recognised brand of nappies. A sense of normality, that he was just as real as any other baby in Pampers. He was just extra special and needed a teeny size. Despite having the smallest nappies available, he was swamped. At four days old, the micro nappy reached his armpits:

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At over a month old, the nappy still went past his belly button:

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With the help of NICU nurses, I learnt how to fold down L’s micro nappies to enable him to wear clothes and have his monitoring equipment in the right place. These nappies were the best product available for L at the time, but they didn’t fit him without some makeshift altering. Changing a nappy through an incubator window is no mean feat, especially when some nappy origami is required too! Any mistakes with positioning the nappy resulted in soaking bedsheets – NICU babies are always changed in their cots to avoid unnecessary fuss to the baby. I had to cradle a soaking L to my chest on a number of occasions whilst the nurses quickly hunted for clean sheets. Not ideal.

Luckily the ‘making-do’ with larger nappies in NICU will be a thing of the past for future preemie parents. I was delighted to be contacted by Pampers and asked to raise awareness of their new range of Preemie Protection nappies. Pampers has been busy in the background for the last 3 years, working with neonatal nurses and Bliss to design nappies for the smallest of premature babies.

The size 0 nappies are labelled for babies weighing 2lbs-5lbs – like most nappy sizes, it’s a pretty huge range. But unlike larger babies, preemies can be swamped by nappies that aren’t tailored for their special size. The new Pampers Preemie Protection range comes in three sizes: P1 for babies weighing less than 5lbs, P2 for less than 4lbs and P3 for babies under 1.8lb.

It must be hard for those who have never seen a 2lb baby to quite appreciate the size – so to compare, here is the new P3 nappy lined up against a Size 0 and L’s current size nappies Size 4 (he is in 3-6 month clothing). This doesn’t really do the preemie nappies justice – my mummy friends with term babies were always shocked at the teeny Size 0 nappies I carried around. The P3 can fit in the palm of my hand!

Comparison of Pampers nappies in sizes P3, 0 and 4.

Although L was born weighing 2lbs 10oz – larger than the sizing guidance for the P3 nappy – he would’ve easily fitted into it. Here’s a comparison of his first baby grow (for babies 3lb and under) against a size 0 nappy and a P3 nappy. The P3 is the perfect fit.

Pampers P3 and size 0 nappy in comparison to preemie 3lb vest

If you still can’t get your head around just how teeny the new P3 nappy actually is, I’ve modelled the nappy on our lovely My First Bliss Bear – ours is called Scuby! Our gorgeous Scuby is designed to represent the size of a 24 weeker. L had IUGR, so he was smaller than the average 30 weeker. He’s stolen my drink to show you how small he is too:

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To celebrate the launch, Pampers will be donating approximately 3 million Pampers Preemie Protection nappies to Neonatal Units across the UK, giving every premature baby born in the UK access to nappies specially designed for their needs. Pampers is also working closely with Bliss, a charity close to my heart, and will also be making a donation to the charity. Pampers is launching a fabulous social media campaign asking all parents to share photos on social media of their little ones with a clenched fist to celebrate the amazing fighting spirit that our preemie babies show every day. After another trip to A&E this weekend for us, I am constantly in awe of L’s fighting spirit. The video released by Pampers to coincide with the release of the P3 nappies has brought back so many memories of my view through the incubator window – you can watch the video here.

So whether you have a newborn preemie, a teeny-sized older baby, a preemie toddler or even a term baby, show your support by sharing your photos on social media with the hashtag #powerofbabies – Pampers will be donating £1 to Bliss for every picture shared using the hashtag!

Here’s an old snap of L with his clenched fist that I’ll be sharing on my Twitter and Facebook – don’t forget to set your post to public for Pampers to spot your post and donate a £1.

#powerofbabies

This post has been developed in conjunction with Pampers UK to raise awareness of the new Pampers Preemie Protection nappies and the social media campaign #powerofbabies for Bliss, the charity for premature babies. #ad

Maternity Leave Must-Dos – Cardiff style

Ah to be pregnant for the first time. I eagerly wrote down all the things that I *would* be doing on my maternity leave. I even created a little rota! L wiped out most of my perfect plans, but I still had a baby bucket list of things that we had to rattle through on maternity leave. But pregnant me was drawn to the activities that had the glossiest adverts or seemed to be the best way to make mummy friends. I hadn’t really thought about what was the most beneficial for L and myself. Nearing the end of my maternity leave, I feel reasonably well informed on what activities I’d recommend for other mummies on maternity leave (and beyond) – and some lovely generous companies in Cardiff that offer these brilliant services.

Babywearing – I’ll be honest, I used to pull faces at mums I saw wearing their babies in funky coloured wraps. I wrote them off as alternative and not something that I would ever do. What if you fell on the baby?! But once I had L, I became aware of the incredible benefits of closeness and touch for newborn babies, particularly those born prematurely. I bought a cheap wrap off Amazon but I was far too nervous to use it on my little 4lb bundle without some professional advice. I stumbled upon the Carry Me Close Facebook page and our babywearing journey began. Julia runs a weekly sling library at Plum Tree Café (every Thursday 10-12pm) and she is a true expert on all things babywearing. She advised me on which slings were suitable for L’s weight until he grew big enough for the buckle carrier that I wanted. Julia also hosts excellent workshops to provide in-depth advice and demonstrations on safe babywearing. Wearing L really helped in the earlier days when he didn’t want to be put down – and he loves being nosey in his carrier as a bigger baby too.

Emotional support – although Cardiff has excellent perinatal support available through the NHS, it can take time for a referral to be accepted for those experiencing emotional difficulty in the postnatal period. Sometimes you just need a chat with someone who is facing the same feelings, an excuse to get out of the house or some 1:1 support. Charlotte Harding set up PMH Cymru to provide courses and activities for families at risk or those affected by perinatal mental illness. PMH Cymru runs mindfulness sessions, enjoy your bump/baby courses and weekly fitness classes. I attended the Enjoy Your Baby course and found it a great support to meet other mums feeling the same as me, alongside the practical advice that Charlotte offered.

Baby singing – babies love hearing their parents singing voices, regardless of their musical capability. I am still stunned that L is enthralled by my singalongs to Little Baby Bum as I certainly can’t hold a tune. But a quick Google of babies and singing brings up a plethora of articles explaining the benefits of rhyme to a baby. There are lots of opportunities to sing with your babies in Cardiff, but only one business promises ‘endless tea and biscuits’ (my kind of class!). Thulamama facilitates sessions of lullabies and inspirational singing for parents and babies. Always good to have some well-rehearsed lullabies in your repertoire for those sleepless nights!

Baby signing – every parent wishes they could understand what their baby was trying to tell them, particularly when you’ve been woken up for the tenth time in an evening. If I was starting my maternity leave again, I’d be interested in pursuing a baby signing class. My usual response to L’s cries is to breastfeed but I’m not so sure that is always necessarily the answer.  Tiny Talk uses British Sign Language to teach babies how to communicate their basic needs and more from an early age. The classes have a different theme each week and are structured with 30 minutes of signing followed by 30 minutes of socialising for mums and babies.

Baby sensory – I was SO excited when L was finally alert enough to engage in baby classes and understand different activities to awake his senses. We really are spoilt for choice in Cardiff with so many interactive classes for babies. Baby sensory classes are a great way to interact with your baby and spend quality time together (away from the distractions of coffee shops and the never ending washing basket at home). The first class we tried was a taster term of Tots Play – Kate fits so many different activities into a short session! Perfect for little one’s short attention span. Tots Play combines music, yoga, massage, physical play, baby sign language AND sensory play into one class. L particularly enjoyed the free play activities at the end with different textures and themes to explore each week.

We also enjoyed an excellent taster from Little Fizz at our last charity baby party. Liz is so energetic and her sessions include music, movement, parachute games, storytelling and sensory play and bubbles. Despite the young age of babies at the last party, they all (L included) love the parachute. There are also classes by Baby Sensory – with a self-explanatory name – which incorporates different sensory activities designed to support your baby’s sensory development every week. These classes regularly have a waiting list and mums I know have really enjoyed their term.

Swimming – I hesitated about booking swimming lessons for L because of the cost. I told myself that he wouldn’t know what was going on and I could take him swimming myself every week for a fraction of the cost. I had taken him to a taster when he was still small (but not young) and he cried for the whole thing. But months later, I still hadn’t taken L back to a pool. It was just impossible to commit without a big price tag motivating me to attend each week. I signed up for lessons when he was around 9 months old and we’ve never looked back. L is learning new skills every week and he seems to recognise our new routine. He kicks his legs and gets excited when I change him into his happy nappy, so cute. Puddle Ducks Cardiff currently has an offer for new customers to get 8 lessons for just £90 – bargain!

Mum and baby fitness classes – I met the amazing Claire from Yumi Yoga whilst I was pregnant with L and my hour at her classes each week did wonders for my anxiety levels. I used to try and schedule my trains back to Cardiff from London to allow me to attend one of her classes. So once L was home from NICU, we were enrolled onto her mum and baby yoga classes – and we’re now on our third term! Yumi Yoga classes are the perfect workout for new mums to do alongside babies, with plenty of exercises to help common postnatal problems (eg pelvic floor) and calming techniques for babies.

Cardiff mums are also lucky enough to be local to Samala, who founded Fitbump – a comprehensive pregnancy and postnatal training package. Fitbump provides classes, advice and structured exercises to support mums who want to stay fit, healthy and empowered with the right knowledge on their journey during into motherhood and beyond. Samala currently has a 2 week free trial for her online training programmes via the Fitbump website.

Mummy pampering – most Cardiff mums will have heard of Funky Little Chickens, the child-friendly salon to get little ones used the hairdressing scissors. But Funky Little Chickens also offers some well-deserved pampering for mums too! On Wednesdays Fiona hosts a range of holistic treatments including adult or child reflexology, Indian head massage or pregnancy massages. Sounds like bliss! If you can’t face entertaining the baby whilst in the salon seat, a mobile hairdresser can be the perfect solution. Emma Rose Hair Design is a well-recommended mobile hair dresser in the Cardiff area.

Making memories forever – new parents are always reminded to cherish the moment, babies will never be this small again etc etc. I look through the photos in my phone almost daily, wondering how my teeny tiny baby has grown so fast. My living room wall is pretty such a L shrine with various photos of him from NICU. But the special photos are the ones I had professionally taken – L was only 5lbs when we had our first photoshoot and the image of him in a little basket melts my heart. I can’t wait to book a shoot for his 1st birthday to celebrate how far he has come (over 5 times his birth weight!).

Catherine Booker Photography aims to encapsulate precious memories and describes her work as capturing real intimacy, real personalities, and real relationships to be turned into beautiful, natural, fully finished photographic works of art. Here are some gorgeous examples of her work:

Summonfire is another fabulous local business, run by Clare Wilson, who provides photography services (including adorable baby photoshoots), graphic design and website design.

A helping hand – by the end of a baby’s first year, most families will have accumulated far too much baby goods than you can reasonably hoard for another future child / just in case. There is a thriving market for staple baby items on sites such as Gumtree and quality branded baby clothing can sell for over half RRP on Facebook reselling sites. If reselling doesn’t suit you, a brilliant local charity called Cwtch Baby Bank will gladly take most items off your hands. The baby bank provides essential equipment, clothing, toys and toiletries for newborns and toddlers through referrals from social care, health professionals and other support agencies.

Celebrating –  a baby’s first birthday is a brilliant excuse for a party! If you decide to have a DIY party in a community or church hall, there are plenty of options to hire in entertainment to hire your guests. Party Fizz can provide ANY theme of your choice and will entertain children with anything from parachute games, bubble machines, musical games and percussion instruments. Or if you’d like children to explore at their leisure, Sharon’s Toyshare can provide a whole range of soft play equipment from mats, blocks, ball pits and cars. Perfect for your own private soft play (something I prefer to stop bigger babies knocking my little L over…) And something for the adults, why not treat yourselves to a gorgeous cupcake bouquet from LoLo’s Cake Away – an alternative to the traditional birthday cake.

**I have not received any financial incentives or freebies for myself or L from the companies listed above. All businesses have been visited by me or recommended – they have kindly offered their services for free to support the UHW Neonatal Unit.

 

Supporting single parents in NICU

Premature baby and mother hands

Throughout my pregnancy, I hung onto the hope that things would be easier once I had my baby. It wouldn’t be so odd to be single with a baby – there’s loads of single parents, right?! Since L arrived, I’ve felt much more comfortable about my single parent status. People are too busy fussing over how cute he is (or usually how small he is…) to care about my significant other. I surround myself with mums on maternity leave, not a partner in sight as the paternity leave ebbs away. Sure, I can’t join in the mother-in-law outrage but we spend far more time moaning about our lack of sleep anyway.

But I hadn’t expected the in-between world of NICU. No longer pregnant, but not able to take my newborn baby home. The NICU bubble isn’t designed to be compatible with single parenthood. The basis of family-centred care in the NICU is 24/7 access for parents. Parents. Plural.

I had no idea how NICU worked as I’d been too traumatised the evening before L’s arrival to listen to the nurses scrambled to my bedside to brief me on their secret world. I broke down in tears and they were quickly whisked away. Several hours after my c-section, my mum wheeled me down to L’s incubator. A few minutes after I had seen my son for the first time, a nurse told me they’d make an exception for my mum on this first occasion. My head was spinning – I couldn’t do this on my own!

Once I had some time to gather my thoughts, I realised that the NICU norm was 24/7 access for the mother and the father. There was a separate hour visiting slot on weekends for grandparents and siblings. I liaised with the nurses and my mum was granted parental rights to visit L at any time, but I had to be present. I felt grateful for this and didn’t test the boundaries of her pseudo-parental role until we were moved to SCBU. I was too overwhelmed to argue my case for the support I needed. I hope I will never encounter NICU again and certainly not as a single parent. But if I did my time again, I would’ve ensured that I had the same support as every other mother on the unit. If you are a single mother on NICU, here are my suggested things that you expect as support from the unit [based on the policies at my NICU – other NICUs have less/more strict terms]:

a named person with equivalent parental responsibilities: after negotiation, my mum was allowed to visit L whenever I was present. It wasn’t too difficult to achieve this and my mum was named on our contact forms as the ‘other’ parent. It was made very clear to me that my mum was allowed in as my support and not in her own capacity. Although I didn’t realise this at the time, it placed a huge pressure on me. Like all NICU parents, I was paranoid about becoming ill and being unable to visit. If I fell sick, L wouldn’t have any visitors. An agreement that my mum could visit independently would have eased the pressure on me and perhaps would have allowed me to have a break. I can’t imagine not spending every day at the hospital, but it would have been nice to have spent some evenings resting knowing that L was in the company of his grandmother.

I had never envisaged a situation where I wouldn’t be able to care for my baby after his birth and luckily I wasn’t in that situation. But I know many other preemie mums who were in ICU themselves after their early delivery. I wish I had put a disclaimer in my maternity notes that my mum should be granted all parental rights in the event I was incapacitated. I couldn’t bear the thought of L being in NICU all alone if I had also been unwell following the c-section.

physical contact for the other person: I was given an almighty telling off when I asked my mum to help me change my 2lb baby’s nappy in the incubator. I was scared, not quite sure how to lift his wires without hurting him, but wanting to show the nurses I could do it myself with a little family help. Only parents can touch the preemie. But I knew once we were discharged, my mum would be the other person cradling L. As L became stronger, I was increasingly frustrated that he wouldn’t recognise my mum’s touch.  I asked several nurses if she could touch L but the answer was always only parents could touch the baby. It was a ridiculous application of protocol – why would L’s biological father, who hadn’t spoke to me during my entire pregnancy, be allowed to waltz in and pick up the baby in the place of my mum who was by my side throughout? I plucked up the courage to raise the question during the consultant round, much to the indignation of the nurse on duty. The consultant agreed immediately that my mum could touch L, as she was my partner in NICU for all other purposes.

The first time my mum held L was a beautiful moment. She couldn’t believe quite how tiny he was, despite seeing him nearly every day for the last 4 weeks. But the moment was ruined somewhat by one of the large bulky privacy screens surrounding us, incase other parents saw and wondered why I had special treatment. This made me feel as if we were doing something wrong. Single parents should not be made to feel guilty for wanting another pair of (non-parental) hands to help out.

no questions: I haven’t seen L’s medical notes, but I assume there would’ve been clear instructions that his father was not involved in his care. Despite this, I got asked several times by different nurses if he had been in contact or if he was planning to meet L. How long we had been together. Did he live in the same city as me? Yes, I know we all like to have a gossip and as far as I could tell, I was the only single parent in our NICU. But there is a time and a place.

respect: This may have been me with a chip on my shoulder, but I often felt like I was treated differently to some of the couples on the NICU. When dads turned up at the end of the day, chairs were pulled up and updates were given to the other parent. My mum would often have to hunt down a seat and would not really be acknowledged in the same way. I was talked down to when I disagreed with a care plan or course of action. I made to feel like I was a silly teenage single mum rather than a professional woman. I once overheard the nurses talking about a surprise for the dads on Father’s Day – a card or something with the baby’s prints. I spoke aloud and asked if L could have something addressed to his grandad. They seemed shocked that I had overheard (it was in the middle of the quiet ward, I was the only other parent) and said it was supposed to be a surprise, rather than reassuring me that L wouldn’t be left out.  If situations arise that shine a light on a parent’s single status, nurses could consider the best way to address it with the parent.

The loneliness that a single parent will feel in NICU is inevitable, despite the best intentions and support from staff. There were many nurses who did provide me with support and kind words when I had to answer questions about L’s father. But the NICU environment could be made more sympathetic to single parents, with some minor tweaks and a little thought.