Category Archives: Dads do NICU

Defying the Odds in NICU – A Father’s Belief

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

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

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

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

Jack in his incubator

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

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

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

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

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

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

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

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

“Touch and go” – Isabelle develops Hydrocephalus

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

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

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

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

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

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

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

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

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

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

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

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

Isabella, defying the odds

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

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

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

Jack “a typical boy”

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

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

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

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

Anthony Grigorjevs

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

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

 

My Top 5 Pieces of Advice for Other NICU Dads

“As a father of a baby born prematurely at only 25 weeks, my partner and I had a big challenge during the 95 days our daughter was in NICU. Read on for my top 5 pieces of advice for other NICU dads on making it the least stressful it can be.”

TIP 1:
The doctors and nurses are there to help so ask questions and try to be as helpful as possible. If there’s red lights flashing and they’re busy then don’t get in the way, but when it’s quiet ask as many questions as possible. Find out what all of the equipment does, what the readings mean on the monitor and what you can do to help. They’ll be happy to teach you.

TIP 2:
Be there for your baby as much as you can. You may not at the time feel that you are doing much good, especially during early days, but just being there and talking to your baby can have incredible benefits. You’ll learn all about your little one and eventually you’ll be able do a lot more like hold him/her, change and feed them and most importantly, bond.

3344700a

TIP 3:
Look after each other. We found there were often hugely stressful times and this made it very easy to get frustrated with your other half. Just remember, you’re both going through similar feelings and being there for each other and trying to keep a sense of humour is so important. My partner and I are now stronger than ever and this positivity can be passed onto our baby.

TIP 4:
Rely on friends and family, even if it’s just asking them to cook a meal or give you a lift. Finding time to cook when you’re at the hospital all day is very draining and you need to keep your strength up for your baby. Fortunately ours were there for us a lot. Our family members visited often which was lovely and they were all so supportive with us which is essential during tough times!

TIP 5:
Lastly but no means least; take tonnes of photos and videos! You’ll be able to look back on them every few days and see the differences. Having a baby in NICU is a challenge but look on the bright side; you’ll be able to see your baby evolve from a tiny human being into an amazing baby. Take photos every day, back them up on a hard drive and hopefully in a few years time you’ll be able to show your grown up son or daughter how they started their life on this planet.

Written by James Farina

You can read more about James’ journey through neonatal intensive care at his own website – A Dads NICU Journey 

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Father of Premature Twins Says Mums Need Their Support Too

As I entered the neonatal unit on December 12 2015 for the first time, I was numb.


My children – Isabelle and Jack – had just been born at 27+5 weeks and the sense of urgency within the room was clear. Doctors, nurses and other medical staff crowded around them, performing all the necessary tests to gage what was going on within their tiny bodies.

I just wanted to do something to help – anything at all – but I was helpless and stood back as X-Rays were taken and lines were fed in to get vital medicines into them.

My mind was focussed purely on them but I was forgetting someone just as important – my partner.

On November 1 at just 21+6 weeks pregnant the waters to the bottom baby (Isabelle) ruptured and she was rushed into hospital and placed on a ward.

Everybody expected her to give birth to two still born babies within hours but somehow she defied huge odds and kept them safe inside for almost 6 weeks – a time when doctors could step in and try to save them.

At 9.15am on December 12 everything was fine but by 9.35am she had delivered. A cord prolapse on the ward led to a full scale medical emergency. Rushed to theatre by a huge team, she was given a general anaesthetic and the twins were delivered.

Once she came round, I can only imagine the pain she was in after such a traumatic ordeal.

But there I was, thinking only of the twins and somehow unable to grasp on to her pain.

Looking back I feel full of guilt that I didn’t spend more time with her on the day of their birth, instead flitting between the neonatal unit and recovery.

In truth my mind was in pieces – there was no logical thought process going on but as the days progressed we both began to get hold of our emotions a little and take stock of the situation.

For me, it was all about concentrating on getting these little miracles well and out of hospital.


In the background, my partner was struggling with the physical and mental effects of the ordeal and in hindsight, I didn’t pay enough attention to that. All I needed to do was give her a hug, go for a drink in the café away from the immediate chaos or something to take her mind elsewhere for five minutes every now and then.

Once the twins were home in late February, I hoped we could start normal family life. I went back to work and my partner was at home on maternity leave. Having been surrounded by monitors giving us every medical stat in an instant, it was a frightening prospect having to go it alone without the technology, but I didn’t realise just how terrifying it was for her being home alone.

At times she struggled and seemed on the edge mentally. I felt more mentally intact but then again, I was back at work, getting normality back – she was doing anything other than getting normality.

Her mum would be a regular visitor and that support helped but a little friction built with my annoyance that the mother-in-law to be was almost living with us. She was a great help and did absolutely nothing wrong but I wanted it to be our family home.

Again, in hindsight I realise she needed that support and sure enough within a few months she was standing on her own two feet and going it alone during the day.

I guess what my story maybe shows is that men just aren’t fully in touch with their partners after a premature birth. Yes, we all feel the emotional side but men don’t feel or experience the physical trauma and that understandably leaves memories that are hard to banish.

There’s also the guilt that mothers can feel. The feeling that their bodies let their babies down. We all know that isn’t the case and that nature just handed out one of its harshest cards but it’s something that us men have to try and get our heads around.


If I was to speak to myself back then I would say ‘take a bullet’ more often. On days when she said things that maybe sounded irrational to me, go with it and genuinely take her points on board.
Whenever she needed a little support, try and put it in place where possible. Whether that is by having the odd day of leave from work, getting a relative or friend over or looking for a group where she could liaise with other mums.

It’s not easy being the dad of a premature baby, but I think we have to remember that mum has been through the mill in many other ways and they deserve just as much love and attention as our precious little ones.

With special thanks for to Tony for sharing his story. 

 

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From a Dad’s Perspective 

This beautiful poem was written and shared with us by NICU dad Paul Lindsey. 

From A Dads Perspective 

It’s easy to forget how many times you’ve done this walk.
Down this long white sterile corridor

Sometimes too tired to talk.

The gentle hum of machinery recycling the air.

Past doors and rooms, this one’s not yours,

Don’t look, it’s private stuff in there.

Still walking, walking to the room feels like you’ve walked a mile. 

A tired nurse with a trolley walks past but still she gives a smile.

Not far to go, pick up the pace, it’s now two rooms away.

The corridor refuses to acknowledge night or day.

Now here’s your room, you stop to look, face up against the glass.

You always fear the worst right here, heart is beating fast.

Open the door, come on, go in, what is it that you fear?

You know damn well replies your mind, let’s make that very clear.

Breathing deep you steel yourself and walk into the room.

The bright monitor displays glow softly in the gloom.

You walk up to the plastic case, smile, and softly say ‘its daddy’

And right on cue, I swear they know, the monitor bongs a Brady.

The nurse comes over, has a look and says, ‘dont worry he’s ok’

Then pulls out all the charts and says how he’s been today.

You understand the language, the medical terminology.

Of intubation, ventilation of PAPS both B and C.

Hi-Flo, Lo-Flo, Blood gases, and all the rest, you even understand aspirates and the endercolitis test.

You watch the gently sleeping shape of the miracle that is yours.

The tiny fingers grip the wires that are threaded through the doors.

The monitor it bongs again, you no longer jump as much.

It won’t do it for ever, he’s getting better you tell your mind as such.

Transfusions, blood tests, checks and scans.

The list goes on and on.

You await the day, to steal away your miracle and be gone.

Now anyone who’s reading this will understand my every word.

Of this journey we’ve all had to take and how it must be heard.

How the strength of all our miracles is something to behold.

The fortitude, the fighting spirit of a premmie three days old.

The stress, the worry, in the end turns everyones hearts glad.

It’s worth it just to hear one whispered word… ‘Dad’

Paul Lindsay

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…

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With thanks to Colin French for sharing his story.

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

A Fathers Journey Through Neonatal Care

Guest Blog…

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

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

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

The agony of NICU: A fathers journey

At our baby boys 20 week scan we got the shattering news that our unborn baby had a Congenital Diaphramic hernia (CDH) which came with a devastating 50/50 chance of survival. I remember just seeing my wife Joni’s face; absolutely heartbroken and gutted. We have another son, Lucas, who was 4 at the time with which Joni had a fantastic pregnancy. I managed to convince Joni enjoy the rest of her pregnancy the way she did with our first born, and she did. I honestly believe if she wasn’t as strong as she had been then Davis wouldn’t be here today. 
The day Davis was born should have been one of the happiest days of our lives, but instead we had to watch our baby boy be whisked away to the side whilst he was intubated and paralysed. After nearly 45 minutes of tears and agonising uncertainty, the 15 strong team of doctors, nurses and surgeons finally stabilised him enough to move him to the neonatal intensive care unit (NICU). 
Once on NICU Davis’ battle had only just begun. He had survived birth, but his condition was critical and he was being assessed minute to minute. I can’t recall how many times we had to watch helplessly as our baby boy nearly died time and time again.

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He had only been in our lives for 12 hours when we got the dreaded news he wasn’t going to make it, not unless he went onto a machine called an ECMO – a heart and lung bypass machine – which required surgery to install into his main artery and vein. Whilst on ECMO though the problems kept coming and we watched as he overcame internal bleeding and fluid in his body resulting in chest drains and 2 ECMO circuit changes (more agonising surgery).

The longest you can stay on ECMO is 3 weeks, so after 2 weeks they decided to trial Davis off it. To our anguish he didn’t cope. We were gutted. 

I always asked the doctors and nurses about a million questions a day and knew exactly what all the screens, monitors and numbers meant and where he should have been. That was my way of dealing with it. The nurses and doctors were second to none, but their faces that day said a thousand words when Davis trial off ECMO failed. They didn’t think he would make it as his odds of survival had now been slashed considerably.

Davis wasn’t finished though and he started to turn a corner. His stats looked slightly better, not great but maybe enough to have the strength to come off ECMO successfully, and perhaps strong enough to have the lifesaving surgery needed to repair his diaphragm and to move his organs out his chest cavity where they had grown in the womb, and in doing so had pushed his heart to the side and had stopped one of his lungs from growing.

WIRES

Davis came off ECMO and received his surgery, with which came more fatality risks. It took surgeons 3 attempts to repair his diaphragm and by now 4 weeks had passed and Davis was still in his induced coma. At this point in our journey Davis should have started to recover, but instead of hope and repair he had punctured his good lung. I thought he was a goner this time. I thought how can he possibly take any more? But he did, recovering from his punctured lung he was then wiped out by an infection that would have floored a grown man. Our baby boy was strong.

After everything that has been thrown at him he started to go from strength to strength and after 8 weeks we finally got to hold our boy. I can’t begin to say how we felt. It was so emotional.

After that the medical team began to reduce his meds to bring him out his induced coma. It was a nervous wait as he had never opened his eyes before and the sense of sight may cause stress resulting in another punctured lung. For once he reacted well and we saw our baby boys eyes for the first time in nearly 3 months!

DAVIS

Five and a half long months in the NICU saw us stuck in a bubble where you forget that there is an outside world. We were very fortunate to have had and have met so many wonderful and strong people and babies. The nurses and doctors don’t get enough credit for what they do in there. They make you feel welcome, safe and treat you like a human being. Mel, Martin, Mark, Lisa, Laura, Jason, Paige, Ross, Jacqueline and John are just some of the now close friends that we had the honour of sharing the NICU bubble with. I am so thankful to Billie and Fran (Joni’s parents) who stood by us every single day and gave us so much help and support.

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But I would never have got through this horrible time without my 2 rocks my wife Joni Kerr and my superstar son Lucas Kerr.

Thank you all for all your support.

You are my world now.

BOYS

With thanks to Alex Kerr for sharing his story through neonatal intensive care.

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

A POEM – To all Those NICU First Time Dads

A POEM – To all those NICU first time dads

By Samuel Wilson

 

To all those NICU first time dads,

Your journey will be tough

You’ll cry and laugh and probably yell

‘why can’t I wake up from this hell?’

This nightmare I feel trapped inside…

This fear filled incubated ride.

 

Where life and death lock horns each day

Where you dread the words consultants say

Yet yearn to hear, you need to try

To understand, to reconcile.

‘Why her? Why him? Why us…WHY ME?

Why can’t this nightmare cease to be?’

Yet…

 

Despite the bleeping sounds and lights

Where fluorescent bulbs merge days and nights

In spite of vital readings dropping

And pale blue lips and small hearts stopping.

 

Even with the daily resuscitations

And crash teams sprinting from nurses stations

 

Even with the phototherapy and scans

And long lines, CPAP, feeding plans Through NG, NJ tubes so frail,

 

This tiny girl, her skin so pale

 

And hydrocephalus and drains

From in her spine to ease her pains

Of swelling brains, please stop…no more.

Those words: IVH Grade 4

 

To all those NICU first time dads:

 

Despite this, all of this you’ll smile

And find the strength to reconcile

Those darkest times with future hopes

Of climbing frames and skipping ropes

And realise that markers change

And joyous moments mean so much more,

Where cooing smiles and kicking limbs

Mean more than they ever would before.

 

She fought so hard

To be with you:

Shouldn’t you show the same fight too?

 

Dig deep and go the extra length

And find the will and find the strength

To show the care and love they crave

They’ve already shown how to be brave

 

Consider how your wife has been,

And how she’s fed and nursed and cleaned

Your little child through day and night

And pushed through fear and hurt and fright

 

Take courage from each other here

And share a laugh and share a tear

And soon perhaps just share a beer

And take a trip out to Ikea

And do those normal things each year

That new dads do without the fear

As the pain will pass, it fades away,

With every hour, with every day

Just the wonder of your child will stay.

 

Be strong, for both your child & wife

Enjoy your special, wondrous life.

 

Copyright 2016

Samuel Wilson

 

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Neonatal Intensive Care: A Fathers Journey

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

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

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

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

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

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

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

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

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

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

A Dad in NICU: An Anchor for my Wife

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

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

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

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

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

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

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

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

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

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

1 first daddy cuddle

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

Daddy loves you

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

Bonding

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

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

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

Luckily those tears are as much about joy as sadness.

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

5 I love swings!

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

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

 

NICU Dads do cry

My wife Nina and I were expecting our first baby in 2011 and we couldn’t wait. Nina had had a great pregnancy, and without the risking of using a cliché, glowed throughout. On the 27th May, 11 days past our due date, Nina started having contractions. We had already agreed if we had a boy he was going to be called Ralph, if we had a girl, well, we still wasn’t sure. I drove to the hospital with Nina and Nina’s Mum, Denise.

Labour started well and as expected, however over the next few hours Nina was becoming more and more tired. At 10pm, after 8 hours, the decision was made they would have to cut Nina to get baby out. I was becoming increasingly worried, I felt like it was happening to someone else and I was watching from far away. I tried to comfort Nina, telling her it was ok and that it wouldn’t be long. But she knew things were going wrong, despite the gas and air. Then time felt like it stood still, I could hear the clock ticking but wasn’t aware of what was happening around me. Next thing I knew the midwife jumped-up, shouted something and ran to the wall behind the bed and pressed the alarm. The room instantly filled with people in white jackets, looking concerned and serious. ‘What is happening?’ I asked, ‘what is wrong with our baby?’ I pleaded, but no one was talking to me. I couldn’t see what was happening, there was too many people. Nina was crying, asking where our baby was. I couldn’t answer her, my face stung with tears. Denise cuddled me, I couldn’t speak. Then I saw our baby, we had a little boy, he was out. I felt a pang of relief, ‘if he is out then he must be ok’. They took our baby straight to a machine with a heat lamp over it. He wasn’t crying, why wasn’t he crying, please cry. I could see them lift his tiny arm and it fall limply by his side. This wasn’t supposed to be happening, we were supposed to be taking pictures, holding our baby, smiling like everyone else. Three, four times they lifted his arm, nothing. He had been out for what felt like forever, although in reality is was about four minutes. I was crying, more tears then I knew possible, I was shaking I couldn’t do anything. I looked at Nina, her face pleading with me to help, to do something. I couldn’t do anything to help our baby, all I could whisper was ‘we have got a boy, Ralph is here’. Then I heard a cry, the smallest and loudest sound I had ever heard. Then they started moving the heat trolley he was on, ‘we are taking him to intensive care now’, was all I heard, then they were gone. I looked around, Nina was cuddling her Mum, the floor and bed was covered in blood and the alarm was still flashing.

baby

Nina had to get in the shower and be stitched-up by the nurse, her mum stayed with her, I followed the doctors to intensive care. They transferred Ralph to a large plastic box full of tubes and pipes. He looked so helpless, so scared, I couldn’t even touch him.

During his birth, Ralph had started to get upset and did a poo in Nina’s womb, this is called meconium, babies first poo which is composed of materials ingested during the pregnancy and is very toxic. Ralph swallowed and ingested it during the birth. This caused Ralphs lung to collapse, his kidneys fail and septicaemia (blood poisoning). Ralph also stopped breathing for almost five minutes. When I asked the Drs what this meant, they couldn’t be sure, he was very poorly and lucky to be alive. When I asked about potential brain damage because of stopping breathing, they said again that they couldn’t be sure and he would undergo tests as he improved. I sat next to his incubator watching him, wanting to hold him, concentrating on his little chest moving up and down awkwardly. I went back to see Nina, she was in a wheelchair. I cuddled her and didn’t want to let go. I then looked her in the eye and said, ‘do you want to go and meet Ralph’.

Ralph spent the next seven days in NICU, he received round the clock care from the most fantastic consultants, doctors and nurses. They saved his life, I have no doubt of that. We visited him all day, every day. Going home only to shower, change clothes and sleep for a couple of hours. I would sit next to Ralph’s incubator every night and read him The Gruffalo, my favourite book. We would stay until the early hours, then call at 6 am the next morning to check on him and be there by 9am for the shift change. The week felt like a never ending cycle of cleaning my hands and drinking coffee. The constant beeping and smell of disinfectant kept me awake and served as an on-going reminder of where we were. After three days we were allowed to hold Ralph and after seven days we could take him home. We were so excited to finally get our boy home, but now what? Whilst we wanted to get out of NICU it was a security blanket, what if something went wrong when we got home? What if he stops breathing again?

As Ralph grew older I felt more and more distant, I couldn’t bond with him. I would make excuses to stay at work so I didn’t have to be at home, I became withdrawn. I couldn’t talk about Ralph’s birth, couldn’t even think about it. If people talked about it, I would leave the room. If a TV programme came on showing a baby or someone giving birth, I would leave the room. I felt myself not wanting to carry on with life, feeling more and more helpless. I was obsessed with me becoming a bad father and that I didn’t want Ralph growing up hating me, blaming me for what had happened, why hadn’t daddy helped? One evening in November 2011, I drove home from work through the forest, it was dark and the roads were quite. I was driving at 50mph and I closed my eyes. I hoped a deer was going to run out in front of me, wished it would. I kept doing it. Night after night, praying for a huge crash.

A few months later I had been getting worse and it was affecting my diabetes. I had to go for a medication review. I was with the nurse looking at my details when she said, ‘so Sam, how are you?’ I broke down. I cried and couldn’t stop talking about what had happened and how I didn’t want to be here anymore and that my family would be better off without me. The nurse called for the Dr who came in and saw me immediately, we chatted, I lost track of how long I had been there. The Dr diagnosed me with PTSD, anxiety and depression following the birth of my son and my inability to deal with it and was referred to a counsellor. At first I didn’t believe it, how could I have PTSD? That’s what soldiers suffer from, not people like me. Anyway, surely men do not suffer with it, shouldn’t it be the mum? We need to be strong for our families. I must be weak I thought, real men wouldn’t let this beat them. Real men do not cry.

Four years later I still take medication and find it hard watching the TV showing a baby being born. But I am stronger now, I know that it was a sign of strength me speaking up. I still hear that beeping from NICU in my dreams but now I can deal with it. I look at me beautiful healthy little Ralph and think how lucky we are to have our little miracle boy. I will always suffer with mental illness, that I accept, I will have good days and bad days, days where I want to smile and days where I want to cry. But what I have learnt is that we need to talk to each other and about our experiences. Just because we are men doesn’t mean it doesn’t effect us, yes we want to be strong for our families but what good are we doing by burying it away.

Sam and family

With thanks to Sam for sharing his story.

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

Our Top Ten New Year Resolutions!

  1. smallest thingsMore guest blogs! We love hearing your stories and sharing experiences is a great way to
    raise awareness and support other NICU parents. If you’d like to share any part of your story please do get in touch with Catriona at smallestthing@yahoo.com
  2. In 2016 we’ll be focusing on support for parents following neonatal care.
  3. 15,000! Before we hand in our petition in the spring we’re aiming to reach an amazing 15,000 signatures – with your help we can do it! If you haven’t already signed our petition to extend parental leave for families affected by premature birth please do and don’t forget to encourage friends and family to sign too!
  4. To shout about the Smallest Things, raising awareness of a journey that does not end at the NICU door, speaking to hundreds and thousands of people.
  5. Dads Do NICU too! In 2016 we’ll be including 11351121_1605702686352890_8034685534623854660_n (2)more stories about fathers of premature babies and their journeys through neonatal care.
  6. To provide a community space for Smallest Things supporters, professionals and parents on our Facebook page. Our Facebook profile is growing everyday and we hope to continue posting news, stories and information all with the aim of raising awareness.
  7. To take our petition to Parliament!
  8. To speak with health visiting teams, discussing corrected age and the psychological needs of families post NICU.
  9. More MPs! We’ll be speaking to many more MPs this year, asking them to champion the Smallest Things and needs of NICU parents in Parliament.
  10. To set up a national network of volunteers! 2015 was a great year for the Smallest Things, but to make 2016 even bigger we need your help! We will be launching our volunteer’s network in February… watch this space.

ST reception

Kangaroo Care: Dads Do NICU

Yesterday was Fathers Day.

In neonatal intensive care units across the country fathers spent the day sat beside incubators – sat waiting, watching and hoping for a precious hold with their tiny baby.

The Smallest Things dedicated the week to sharing stories and raising awareness of the journeys that dads take through neonatal care. Dads do NICU too, and often tread the first steps of the journey by themselves; visiting their fragile babies alone whilst mothers recover from traumatic births and surgery.

Jonathan writes movingly about the first time he visited his son…

“My wife came back to recovery but was too ill to make the journey to the other side of the building where Ethan was being cared for, so I made the trip alone. I couldn’t make my mind up whether to walk quickly or slowly as the excitement of having a son was tainted by my worries over what I was going to see. What I found was a strange, almost alien like red/purple 800g dot in a white eye mask and a pink wool hat, no bigger than my hand with a myriad of wires and tubes as attachments. But he was also the most amazing thing I’d ever seen.” …….   From A NICU Dads Experience

Dads do Kangaroo Care

Fathers shared beautiful pictures of Kangaroo Care and we decided that there are simply not enough pictures of dads in neonatal care, let alone pictures demonstrating and encouraging skin-to-skin time for NICU dads. Darren wrote honestly about how sacred he was of holding his twin daughters, how initially he avoided skin-to-skin care. That changed though when he held them for the first time….

“By then I was a little more open to the idea of holding them and my heart completely melted. Any apprehensions I felt when being handed my two miracles was gone the minute I held them. I spoke to them and as I did each one looked up at me. My heart melted every time I saw that and still does when I look over the pictures of the occasion. I also believe that my bond with my daughters was established at that very moment”. …. From Daddy’s NICU Twins

Our #DadsDoNICU week may have come to an end, but we will continue to write about fathers in NICU and will continue to share photos encouraging skin-to-skin care with dads… here are a few to keep us going x

FB_IMG_1434871129975FB_IMG_1434871058501  FB_IMG_1434871035864 FB_IMG_1434871003714 FB_IMG_1434870998064 FB_IMG_1434870971012 FB_IMG_1434870937018 FB_IMG_1434870869446 FB_IMG_1434870857352 Kangaroo Care

 

 

 

 

Daddy’s NICU Twins

11351121_1605702686352890_8034685534623854660_n (2)Guest post written as part of our “Dads Do NICU” week, with thanks to Darren for sharing his story….

On September 23rd 2014, my partner and I went to the hospital for what should have been a routine pre-natal appointment. Every appointment was a terrifying experience for me, in part due to the loss of a child 2 years earlier, but also because we’d encounterd difficulties with cord flow and Inter Uterine Growth Restriction (IUGR). Sarah had already been in hospital due to the  IUGR and had been given steroids to help with the babies lung development should they come early.

We were both sitting in the waiting room becoming increasingly anxious.

Suddenly, out of the corner of my eye, I spotted our consultant. She was running around in that headless chicken way we’d come to know and love from those who are important to us. I don’t think she spotted us initially and it was on her return trip that she made her way through the waiting room to tell us that she was trying to arrange our c-section for that coming friday. After dropping that little bombshell she dashed off leaving both Sarah and I with our jaws on the floor.

This was really happening, and sooner than we’d expected!

It’s not that we weren’t prepared – we were.

Everything we needed was set up, ready and waiting at home; but at that moment we realised WE weren’t setup. The nerves kicked in and I remember the feelings of terror. I was shaking. When we went in for the appointment I don’t think either of us could take anything in… and judging by the amount the consultant wrote down for us and the bundle of literature handed to us, I think they knew we weren’t taking anything in!

Friday the 26th of September – we sat waiting to go up to theatre. We knew it wouldn’t be long now before we were parents again, but we also know that this time was very different, unrecognisably so.

At 11:07am, baby Marnie was born at 33 weeks & 5 days, weighing a very reasonable 3lb 10oz. Fifteen seconds later Faye came into the world weighing 3lb 9oz. Faye needed a little help breathing but once she got going, she did just fine. The girls were brought over for us to see before being whisked away to neonatal care.

Now the hard work really began.

Neither of us had ANY experience of premature babies; we were both equally terrified. I went to see the girls that day – Sarah wanted me to check on them and I needed to know they were ok.

prem twinsI walked through the hospital, taking the trip to special care to visit my daughters for the first time. They were both in incubators with lots of wires and tubes, or so it seemed. Looking back at the video it’s not nearly so daunting, but in that moment it was terrifying. We’d thankfully had a tour of the unit beforehand so we had an idea of what to expect and I’d highly recommend a tour if you know you’re likely to have a NICU stay.

Faye was sleeping on her back in a “daddy” position. She didn’t stir when I spoke to her through the plastic of the incubator. Marnie was 2 incubators down sleeping on her front in a “mummy” position. I took pictures and videos and went back to show Sarah. They helped to put her mind at ease.

Later that evening, with the feeling returning to her legs, Sarah was ready to meet our daughters properly too. Having seen the video and pictures she had a idea of what to expect, but I think it was still a shock when she saw the girls for the first time in NICU.

The next day Sarah was able to have some Kangaroo care (skin-to-skin) time, which is both extremely important and good for mother and baby. That’s not to discount the importance to daddy, but to be frank and honest, I was utterly terrified. Here were these little fragile human beings with no body fat and lanugo (hair on the babies skin that would normally be gone by term) and I was simply scared.

By day 3 we were becoming a little more at ease and we both changed a nappy – I had my mind blown! The girls had no body fat and because they had no body fat, they had no bum cheeks!

Dads do NICUAlso by day 3, I was a little more open to the idea of holding them and my heart completely melted. Any apprehensions I felt when being handed my two miracles was gone the minute I held them. I spoke to them and as I did each one looked up at me. My heart melted every time I saw that and still does when I look over the pictures of the occasion. I also believe that my bond with my daughters was established at that very moment.

We were a lot more at ease by day 4. Partially because the girls were out of high dependency, but also because we’d begun to take a more active role in their cares.  We went in for 5 hours a day, which in the grand scheme of things isn’t a long time, but you have to consider that all the time the babies are out of their inubator and awake, their bodies are burning critical calories that they need. Outside this time Sarah and I made time for each other, making sure that despite the stress and trauma our relationship stayed strong.

NICU dadOur girls spent a total of 16 days in special care and by the time we left we were offering guidance and support to other new parents -We’d gone from terrified parents to NICU experts and I’d like to think that those we advised passed that support on to others, just as it was passed on to us.

 

 

 

The thing I remember about NICU is…. #DadsDoNICU

11351121_1605702686352890_8034685534623854660_n (2)As part of our “Dads Do NICU” series, we asked fathers to describe their memories of neonatal care…  Thank you to Trevor Greenway-Clissold who shares his memories of his journey through neonatal care with daughter Ophelia.

When I found out our baby would be born early I felt…  helpless. There were suddenly doctors and nurses in the room all doing dozens of tasks, I wanted to be able to do something to help my wife and our daughter too.

The thing I remember about NICU is… the sounds. I can still hear all the beeps and tones of countless machines and monitors, the sound of the lift and doors, all those little triggers.

I felt like a dad when… they told me we had a daughter and we gave her a name.

Who were you with when you first saw your baby in NICU? – I was on my own. My wife couldn’t be transferred after an emergency casaerean and was kept at our local hospital. She told me to go with our daughter so she wasn’t alone.

first hold, day 5

first hold, day 5

How long was it before you first held your baby? – Five days

What advice would you give to other NICU dads? – Everyone deals with things in different ways, and partners will as well. Just be present in every moment with your baby, write things down, take photos, anything to help you remember things because they change so quickly. Find little things you can do that can make you feel a part of everything that’s going on. Accept help, family will feel helpless as well, especially with very limited visiting, just doing some washing or cooking a meal, little things that give you more time to focus on the important things.

A NICU Dad’s experience

11351121_1605702686352890_8034685534623854660_n (2)Guest Blog – written by Jonathon Burke, Ethan’s dad,  as part of our Dads do NICU week 15th – 21at June 2015…

Having your first baby is scary, and that’s when you think everything will go to plan.

To say I was a nervous expectant parent would be an understatement. I’d never held a new-born (without it being placed in my lap), never mind changed a nappy or give a bottle. Special precautions were taken like the purchase of a snuggle bundle so I could be confident picking up my baby whilst providing the right head support… all this when I thought I’d be getting a regular sized baby (in fact, we thought they’d be larger than average on account of my height).

Reality came close to 27 weeks when my wife, Tara, fell ill – blood pressure was a little high – “come back tomorrow sometime and we’ll check it again” they said.

Rather than endure the queue in the maternity outpatients, we headed over early on the Saturday morning… “Shall I take an overnight bag?” Tara asked but I dismissed the idea – we’d be home in time for lunch.

We weren’t.

Tara was kept in and steriods administered to help with the babies lung development. I said all the right things (I think) but inside I was convinced it was all a false alarm, things would settle down and I wouldn’t get to see my first born for another 3 months. Over the weekend Tara ’s health deteriorated further and I finally understood on Sunday evening that I’d be meeting my baby on Monday 17th November (as it happened – World Prematurity Day).

Ethan arrived by ‘C’ section at 14:21 on the Monday in a very congested operating theatre. I’d been there by Tara ’s side until things went awry and I was ushered out of the room – in the dark about the health of my wife and unsure if I’d seen a baby amongst all the hospital staff. I didn’t have to wait too long for news – “It’s a boy – He’s been taken to NICU.”

My wife came back to recovery but was too ill to make the journey to the other side of the building where Ethan was being cared for, so I made the trip alone. I couldn’t make my mind up whether to walk quickly or slowly as the excitement of having a son was tainted by my worries over what I was going to see. What I found was a strange, almost alien like red/purple 800g dot in a white eye mask and a pink wool hat, no bigger than my hand with a myriad of wires and tubes as attachments. But he was also the most amazing thing I’d ever seen.

Ethan

The changes in Ethan over the first few days were remarkable. His colour changed, he gained weight and moved off full ventilation and onto CPAP (continuous positive airway pressure).  Tara’s recovery was slow and it would be a couple of days before she was able to make the trip to see Ethan herself. Then further illness kept her away for another week so it was tough being the conduit for information.

Those early days went by in a blur… I was conscious of the fact so I started to make notes so I could keep Tara and the family informed… the demand for information got greater as more and more friends and relatives heard of the early arrival so we decided a daily e-mail “blog” wold be the best solution and I took up the mantle.

Written from Ethan’s perspective, it gave me something to concentrate on and helped while away the lonely hours sitting by his incubator. It also gave us the opportunity to put a positive spin on how Ethan was doing and, how we were all coping.

Looking back, I think I did ok; the nappy changing fear disappears quickly when you are having to do it through a porthole with a nurse or two watching on. Similarly, the emotion of his first trip out of the incubator and onto my bare chest is something that I’ll never be able to think about without being brought to the brink of tears.

Kangaroo Care

Kangaroo Care

You find yourself easily falling into a new routine – making your way in to the hospital in time for rounds (remembering always to bring drinks and food to sustain you through the day), cares, kangaroo time, more cares, visiting time, cares again before heading home for a late dinner and bed. Days of the week don’t matter anymore – the only clue that it’s a weekend is the change in traffic getting to and from the hospital.

 There are good days… the excitement of his first poo, the day he had a bottle for the first time or makes that momentous move from the incubator to a cot.

Inevitably, there are also the not so good – the call in the night “advising” we come in followed later by chasing an ambulance to a new hospital… strange new environments, new doctors and nurses and new procedures.

I don’t know the stats but I’m sure in most cases the good outweighs the bad. In our case, after 88 days, Ethan got his first ride in his car seat out of the hospital and home.

Feeding HimselfNow 7 months old, he seems to change on a daily basis – something new everyday like rolling over, giggling when tickled, waking up with a smile on his face. He is desperate for more independence with his latest trick being that he wants to hold the bottle or spoon.

In summary, a new dad’s NICU experience is full of fear. It is emotionally hard and physically tiring. For me thought, it also created a close bond with my son and brought my wife and I even closer together (which I didn’t think was possible).

Advice? Stick in there. Be your babies advocate – putting their needs first above all other considerations. Learn all you can from the excellent staff and take over the cares as soon as you are confident to do so. Support your partner – they are probably questioning what they did wrong or could have done differently (the answer to both of these is, of course,  nothing). Most important of all, keep believing that you’ll all be home together soon.

One last thing – I couldn’t write the above withoutEthan & his dad mentioning that Ethan had the very best of care in the Watford General hospital NICU – too many amazing professionals to name and unfair to single out any for individual praise. Ethan, Tara and I will be eternally grateful.

 

 

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