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

 

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