Tag Archives: DadsDoNICU

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

 

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.

ecmo

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.

FAMILY

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

 

dads

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.