What Prematurity means to me this World Prematurity Day

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:

#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.

#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.

#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.

#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.

#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

A Little Thank You – International Nurses Day

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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.

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.

This is what a 30 weeker looks like

A few days after my admission to hospital, it began to sink in that my baby might be born any day. Or in a few weeks. Maybe a month. The prognosis was uncertain, consultants were vague but there was only one purpose of the two painful steroid injections I had received. My baby was being given the best possible chance to survive outside of my womb.

In my typical fashion of wanting to prepare as much as possible for every scenario, I googled ’30 week baby’ hoping to see a glimpse of what my baby could look like. I was scared. Would my baby be covered in hair? Would he be translucent? Focusing on his appearance was a distraction from dwelling on his precarious situation.

The Google results were fairly mixed. Lots of Bounty-type websites came up, telling me what exciting stage of my pregnancy I should be experiencing. There were photos of big bumps and smiling ladies next to 30-week milestone cards. And dotted throughout were photos of real-life preemies. The results were so variable. Some babies were in plastic bags, most had wires and some were wrapped up in little blankets. When I clicked through the results, it seemed that most babies were a few weeks earlier or later than my baby. I just wanted one page were I could see a real life story and outcomes.

So here is what my 30 week baby looked like. L was born at 30+6, weighing 2lbs 10oz. He was born via emergency c-section due to absent end diastolic flow and IUGR (I was in hospital for 5 days before hand).

He was placed in a plastic bag (which I never saw) and taken straight to NICU. He was on CPAP (a type of breathing support machine) from birth until he was a few days old. Apart from being tiny, he was fine. Perfectly formed. I still can’t quite believe it.

L’s eyes were not fused shut. He did not have hair on his tiny body and he was not translucent. He was nothing like I had imagined even after my Google search. He was jaundiced, which made him look very very red rather than yellow.

He could cry, urinate and poo like a normal baby. I have no idea if he followed the same ‘first poo’ cycle as a term baby as I didn’t see him for around 6 hours after his birth. Mainly because I was bedbound after my surgery. He did not feed for a few days and received total parental nutrition via a long-line in his foot.

On his first day of life, I couldn’t hold him but I helped changed his nappy. I stroked him through the incubator and he held my finger. When I eventually held him on day 3, his head easily fitted in the palm of my hand. I held him down my top (kangaroo care) – with his head on my chest, his body stopped before my belly button.

My 30 weeker was in hospital for over 40 days. At 8 months old, he has no known ongoing health issues. He is still small but he is perfectly healthy.

I hope someone afraid of their 30 weeker finds this post. And mums of fellow 30 weekers, please do add your experiences in the comments.

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Debrief me 

Like most parents of premature babies, I’ve been desperate for answers to my situation. I couldn’t comprehend how I had gone from heading into hospital for my third reduced movements scan (which I rationalised as my usual tendency to panic about everything) to suddenly being kept in hospital, learning that I couldn’t go home until my baby was born. At 7 months pregnant.

For the 5 days that I remained in hospital before L’s delivery, I constantly received different interpretations of my situation. In a matter of hours, doctors would fluctuate from deciding I would have a c-section within half an hour to discharging me as the baby had stabilised. It was, and remains, a difficult situation to get my head around. From what I could grasp, my baby was too small and was not getting nutrients from my placenta (a condition called absent end diastolic flow). There was nothing that I could have done. Google was my friend, the scant amount of references to absent edf that I could find reassured me that it wasn’t my fault. But my baby had been fine two weeks early at my 28 week scan. Surely I had done something to harm him.

So I sought answers. I have had three debriefs since L’s arrival five months ago, two of which happened while I was still on the postnatal ward. I suffered from extreme anxiety following my c-section (unsurprisingly) and the midwives arranged a debrief for me. Someone who seemed to be a senior midwife arrived in my room. I talked through my worries and mentioned how traumatised I was from the treatment I received the night before L’s delivery. But I wasn’t seeking to complain, I simply wanted answers. The midwife was extremely abrupt with me, spending our session defending the actions of the midwife in question and trivialising my behaviour on that night (where I could not tolerate an IV drip as I had an extreme reaction). She spent around 20 minutes with me and left me a sobbing mess, making me feel even more guilty.

I conveyed my disappointment to the midwives; it was pretty clear to see, as I spent all my time on the ward in tears (when I wasn’t hobbling down to NICU of course). They scheduled a session with someone they called ‘MoM’ which I understand is the manager of midwives. She was absolutely incredible. The MoM spent over 90 minutes with me, reading every single page of my maternity notes and checking if there was anything I wanted to discuss from each appointment or incident. She apologised for the treatment I had received the night in question, which meant a lot. But most importantly, she explained as much as she could about absent edf. She had never encountered it during her time as a community midwife. I was unusual and extremely unlucky. Or lucky, in her view, that I had trusted my instincts and reported to hospital. I felt as though a weight had been lifted, finally.

But as time went on and I witnessed L go through numerous medical procedures, guilt crept back into my conscience. I needed an explanation from the consultant who made the final decision to deliver my baby early. The last time I had seen my consultant, I was hooked up to the CTG monitors after a night of no sleep and starved for a possible c-section. The last thing she told me was that my baby had a 10% chance of dying during the surgery. I was pleasantly surprised by how easy it was to arrange a debrief; I called her secretary and a few weeks later I received an outpatient appointment for Antenatal Clinic. For some reason, I still needed my blood pressure taken on the day (120/74, go me).

The consultant explained my situation with excellent clarity. I had suffered placental insuffiency, which had led to the absent end diastolic flow. As a result, L had become severely growth restricted (IUGR). The results from my placental analysis confirmed that it was infarcted. The placenta hadn’t been able to cope with L growing any further. He probably stopped growing sometime after my 28 week growth scan. I had reported the reduced movements at just the right time to save L’s life.

The consultant couldn’t explain why this had happened to me. I didn’t smoke, I wasn’t too young or old and I wasn’t overweight. My only risk factor was a first time pregnancy. But not all mums end up with their first born in NICU! My risk of subsequent placental insuffiency is increased compared to the general population, but the consultant thought it was unlikely a future baby would be so severely growth restricted. Interestingly, she said my chances would be increased if I had a baby with a different father (which is obviously the case). Apparently the body tolerates subsequent pregnancies with the same biological father in a better way.

I left the debrief with the knowledge that my stress and worry during the pregnancy didn’t cause L’s prematurity. If I fall pregnant again, I’ll be put on a course of aspirin. But I can’t help thinking my second baby will also be a NICU baby too.

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