Tag Archives: Twins

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”.

Please help The Smallest Things to raise awareness of premature birth and life through NICU – it’s easy, just hit the Twitter and Facebook buttons to SHARE NOW!

If you have a story to share, please contact Catriona at smallestthing@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!

scan

What happened next?

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

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

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

And then it happened

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

incubators

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

jake

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

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

kyle

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

Welcome to the world…

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

map

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.

baby

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

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

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

day-25

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

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

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

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

nurses

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

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

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

halloween

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

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

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

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

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

xmas-nicu

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

christmas-nicu

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

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

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

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

board

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

kyle-home

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

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

twins-cc

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

Eva & Charlotte’s story

GetAttachmentOn Monday 30th November at our Westminster Reception, Sarah Miles, mum to Eva and Charlotte, spoke bravely about their journey through neonatal care. Her words were powerful and moving and captured the reasons why parents of babies born too soon need more time.

Sarah shares her words with us here….

The Smallest Things reception – Eva & Charlotte’s story

“Hello. I’m here as a supporter of the campaign to extend maternity leave and as a mum. And probably the best way to explain why I’m supporting this campaign is to tell you the story of two VERY little girls.

In 2011 I found out I was pregnant. It wasn’t a surprise because, like most things in my life, it was carefully planned. Working in the media there’s not a great deal of job security and I’d strategically manoeuvred myself into a permanent role after years of freelancing in order to get some paid maternity leave and – most importantly for me – a job to return to.

Yet life doesn’t always follow your best-laid plans, as many of us in this room can attest. At our 12-week scan we were speechless yet delighted to find out we were expecting identical twins. And, with the benefit of hindsight, naive to all the issues this can bring. We were scanned fortnightly and at 22 weeks were told I had too much amniotic fluid. At 25 weeks I had bleeding and was admitted for 10 days’ observation. At 28 weeks, the day before I was due to have amnio drainage and 12 weeks early, my waters broke and I gave birth to two beautiful girls by emergency c-section. Eva weighed 980g (2lb 2oz) and Charlotte tipped the scales at 1.1kg (2lb 8oz). They cried as they emerged – a good sign – but neither could breathe by themselves, let alone feed orally, maintain their own body temperatures or fight off infection and they were resuscitated before being whisked away in incubators to the neonatal unit seconds after delivery.

And so began our adventure through NICU. While in recovery, we were told that Eva had a condition called TOF/OA – trachea-oesophageal fistula/oesophageal atresia – which basically meant her mouth wasn’t connected to her stomach and she couldn’t swallow. Suddenly my excess amniotic fluid made sense. And life-threateningly, her oesophagus was connected to her trachea so fluid could enter her lungs. She was transferred from Queen Charlotte’s Hospital in Hammersmith to Chelsea & Westminster Hospital for immediate surgery, while I stayed behind with Charlotte in NICU for five excruciating days. Eva was given a 50/50 chance of surviving the operation.  That was the first – and certainly not the last – time I begged, pleaded and bargained with the universe to let her survive. There’s a lot of that in neonatal units: willing, wishing and wanting your baby to make it, yet having no power to affect the outcome. It’s torturous.

But she made it. And on day 5 Charlotte was transferred to the same hospital – but never the same ward – to make our lives just about bearable. Expressing eight times a day, reading medical papers, hanging around in corridors for separate ward rounds (and hoping the two didn’t coincide), sitting by incubators, watching numbers on screens, reading obs charts, listening to bleeping machinery….. all this quickly became our normal daily routine. Learning to change a nappy through the portholes of an incubator, gingerly holding twig-like legs up without disturbing wires…. we learnt how to do our babies’ “cares” in a way that was far from normal. It was two weeks before I could have my first precious cuddle with Eva, and even then I was terrified and spent the whole time staring at the numbers on the monitor. How could this tiny baby the size of her daddy’s hand survive and grow?

Sarah Miles

Within a week my partner was back at work and this new routine was one I did alone. Dashing between intensive care, high-dependency and the expressing room – experiencing the highs of a wonderful cuddles and the lows of infections, blood transfusions, cannulas and backwards steps to ventilation. For most new mums, the sound of their baby crying is cause for concern, for NICU mums it’s a sign of positivity – growing lungs, healthy reactions.  With your baby in a plastic box, or as somebody wonderfully called it “a womb with a view”, you’re denied the simple pleasures of new parenthood. Picking your baby up, changing their nappy, feeding them when they’re hungry – all of these things are done to a schedule dictated by a doctor and implemented by a nurse who you have to ask permission from. You’re robbed of those precious new first experiences while in a constant state of fear your baby might die. I was desperate to hold my girls but terrified it might hurt them or cause distress.  ‘It doesn’t matter,’ you tell yourself, ‘As long as they get better and grow. They’ll come home and then we will start properly. Like it should have been. This is just a nightmare to get through and then we can start again at the beginning.’

When Charlotte and Eva were allowed to start wearing clothes, it was another baby step towards ‘normality’. Us NICU mums crave normality – we’d roll our eyes and hold our noses at explosive pooey nappies and yet ANOTHER outfit change yet inwardly delight and revel in it. This is what normal newborns do! We’re getting closer. And when Charlotte was moved from an incubator to an open cot I was literally walking on air. ‘You mean I can just lean over and touch her? Without asking?’  While in the next room Eva was being put on yet more antibiotics for a suspected bowel infection and I wasn’t allowed to touch her because she was too unstable. Being told you can’t touch your baby is one of the worst things you can say to a parent. But of course you want what’s best, and if that means depriving yourself of bonding hugs, then so be it.

It was the nurses and other mums on the unit that got me through the day-to-day of NICU life. We called Eva and Charlotte’s nurses her ‘aunties’ (as none of their real aunties were able to visit) and the friendships I made with the other mums will last a lifetime. We supported each other through bad times and celebrated the good times – the baby steps forwards – and when it was finally time for a baby to go home we would all celebrate. While NCT groups up and down the country are meeting for coffee and talking about pooing and breastfeeding, NICU mums gather in expressing rooms to discuss breathing support, surgery and methods of tube-feeding. It’s like an alternative reality where life-or-death moments are discussed in the same way as nap routines. Put simply: normal mums worry about their baby sleeping through the night, NICU mums worry about their baby surviving the night.

DSCF3478

After 79 long days, 5 days before my due date, Charlotte finally came home, weighing 2.6kg (5lbs 5oz) and behaving pretty much like a newborn. But at the same time Eva was struggling to recover from a failed operation to fix her oesophagus. Ecstasy and agony simultaneously. Despite having one daughter at home my life got harder, rather than easier because infection policy dictated that I couldn’t bring Charlotte back onto the unit. So I was forced to leave my fragile ‘newborn’ baby every day, who I had worked so hard to breastfeed, to visit my arguably more fragile baby in hospital. It was unbearable. I hired a nanny to look after Charlotte, my mum helped out and my partner Dave swapped his working Friday for a working Saturday so that friends could take over. Dave took one week of paternity leave when Charlotte came home and one week of holiday. Because we had to divide ourselves between home and hospital we rarely saw each other and when we did we were too exhausted to communicate. There were no shared joys of our new babies – just handovers of information.

Eva needed to reach a certain weight before they’d operate again so we were in it for the long-haul. But she was thriving and her smile when I arrived every day made it all worthwhile. She loved watching the jungle animals rotate on her mobile and listening to music from toys. Along with the nurses we devised a daily routine that included sitting up in her bouncy chair watching what was going on.

In total Eva was in hospital for 197 days before she came home to die, having suffered brain damage during her final operation. She died on 23 February, Day 201, aged six and a half months. Her hospital stay had been one day longer than my pregnancy.

I don’t have the words to describe the time that followed, apart from to say that Charlotte gave me a reason to keep going. She was, and still is, my salvation.

Three and a bit months later my boss took me out for dinner and asked if I was planning to return in August, when my year’s maternity was up. I’d had six weeks of 90percent pay and then statutory pay until nine months. I knew I wasn’t emotionally ready so I asked for more time – unpaid leave – but they said no and sent me a letter to sign saying I was resigning. As I signed that letter part of me knew that I was signing away the career I’d spent 15 years working hard to build up.

A couple of months later my partner Dave was made redundant. We knew we were going to have to do some significant belt-tightening to live on one salary but to live on nothing? So I accepted a month’s project work at my old company for around £20K per year less than the job I’d just resigned from. Thankfully he found another job and I didn’t stay on. When Charlotte was 18 months old I started doing a little bit of self-employed freelance work from home while she went to nursery two mornings a week. Well I say, every week but I’d guess she was off about half the time with chest infections so I wasn’t able to commit to much work.

Fast forward through my second pregnancy (which I wish I could) – this time a full-term healthy girl called Iris – and self-employed mat leave to today, and I’m still sporadically freelancing from home, which doesn’t really work with childcare commitments and school runs. So I’m looking for a part-time permanent job but having no luck. Part-time editors are few and far between, and often are only those that have negotiated hours when they returned from maternity leave. Something I was very aware of before I got pregnant. But as I said before, the best-laid plans don’t always pan out…

If I’d have had more time after Charlotte came home and Eva died, I might have felt strong enough to negotiate a return to work on my terms and not be in this position four years later. But because I felt I had no choice but to resign, here I am. And while we’re by no means queuing at the food bank just yet, it has had a huge effect on our family and so far has prevented us from buying our first home together.

Time spent in NICU is simply not maternity leave. It’s a nightmarish version of ‘what should have been’ where doctors are trying to replicate the conditions of your womb because your baby or babies should still be in there. Every year, we celebrate Charlotte’s Homecoming Day – 79 days after my twins were born and five days before they were due, because this is the day she truly became ‘ours’. The first day we looked after her independently, the first day she slept in her own moses basket, the first day she was breastfed on our sofa, the first day her nappy was changed on her changing mat. It was, in many ways, the day she was born. Yet it was three months after my maternity leave had started and three months before her sister would leave the hospital.  And that’s simply not fair.”

 

If like Sarah you believe that familes of babies born too soon need more time, please do sign our PETITION to extend parental leave for parents of premature babies – SIGN NOW!