Ben's Story

Ben's Story

I still have not worked out if the 49 days little Immi spent in NCCU and Special Care was ‘the longest short period of my life’ or ‘the shortest long period of my life’. But one thing is for certain… the ‘NCCU grind’ is one hell of a rollercoaster.

From the start Immi didn’t play by the rules, not that my wife Sam or I cared.  From about 20 weeks we were told to expect that Immi would come early.  She was a very small baby and not putting on the expected weight gain.  We were bouncing between weekly scans, knowing that at any time the obstetrician was going to call it… ‘Right-o we are booking her in this week, she will be better out than in!’ However, on the eve of the scheduled 32 week scan, my wife developed a severe case of pre-eclampsia (conveniently whilst I was in Sydney for work).  A 2.30 am trip to Mater Mothers’ Pregnancy Assessment Centre soon became an intense race against time to save both Sam and Immi.  In the meantime, I was making the mercy dash to the airport trying to get onto the first flight home to witness the birth of my first child. I got on the first flight – I didn’t make the birth.

In the space of 15 minutes the situation changed from ‘we will wait for you, but we can’t guarantee it’, to ‘we can’t wait, Sam is going into surgery’.  Things tend to get serious when you lose your vision. It’s a sign of fluid on the brain. They don’t wait for husbands when the kidneys are shutting down and there is fluid pooling on the brain.  Twenty minutes later (whilst I was sitting on the plane awaiting take-off) I got a text from an unknown number – a photo of my daughter.  I lost it! The poor lady sitting next to me had no idea what was going on.  Those 35 minutes were the longest 35 minutes of my life.  I felt helpless, anxious and a failure.  How could I not be there for the most important moment of our lives?  Sam was alone; I wasn’t there to give support, comfort and witness the birth.

When you daydream, you don’t exactly picture missing the birth of your first born, and then turning up to hospital with your wife in intensive care and your daughter in neonatal intensive care. But that’s the way my NCCU journey started.  For the first three days I bounced between the two, bringing back photos and videos to show Sam who was stuck in ICU, unable to see Immi for the first two days.  

There is nothing that can possibly prepare you for the first time you walk into NCCU.  I was speechless as I walked up to Perspex isolette and inside was this tiny little soul lying peacefully, belly down with only a nappy.  Instant love!  It is not until you get close that you get an appreciation of how small this little being is.  1340g of pure tenacity and fighting spirit!  Then you really take note of what else is there.  Chest sensors, tubes, lines, foot sensors, endotracheal tube, probes! So many that most of her tiny body is covered.  The immediate sense of fear subsides as the explanations flow freely from the nurse assigned to your baby.  No sooner had these explanations finished, we now moved onto the rules of NCCU – strict, purposeful and less than personal, but essential to maintain a level of calm and control. These rules will define the next 45 days of my little family's lives.

The ‘NCCU grind’ was a twice daily pilgrimage that we did together, every day. Some days we would be greeted with obvious signs of improvement.  The CPAP had been reduced… she had progressed to high flow.  Some days we were shocked to see she had regressed – taken steps backward.  That is the game – pushing their little bodies to find out what their limit is, identifying it and taking a step backward.  It is a rollercoaster and our mental state mimics the rollercoaster our daughter is experiencing.

We found the hardest thing to deal with was the lack of contact with Immi.  We found ourselves staring for hours at Immi through the isolette, only being able to give a reassuring firm touch through the ports on the side. We would limit our kangaroo cuddles to once a day to allow all her energy to go into growth and development.  Little things like changing her nappy felt like major events and a source of pure joy.

The smell of the alcohol antiseptic hand rub will forever be engraved in the brain.  The underdeveloped immune systems of the babies leave them vulnerable to any bug.  You become paranoid and a germaphobe.  Hand washing and spraying becomes a constant ritual, drying out your hands.  You even find yourself analysing every single person you walk past or come in contact with and determining if they have any health issue that may prevent you from seeing your baby.  If you get sick… that’s it, you’re quarantined and it could be days before you see your baby again.  Because of this, you tend to overanalyse your body wondering if that little tickle in your throat may become an issue.  This was especially an issue as our time in NCCU coincided with the peak winter flu period.  

Daily kangaroo cuddles were a major operation, but so immensely cleansing.  In the early stages these times were only able to happen when facilitated by the highly trained NCCU staff.  It is a mission to retrieve your baby out of the isolette, especially with all the monitoring devices on.  A 90 minute cuddle session would feel like 5 minutes and before you know it, it was over, and the delicate and complicated process of putting her back into her ‘spaceship’ commenced.  

The thing we were surprised with in NCCU was that there are so many private struggles going on in such a public space.  To a certain degree privacy is abandoned at the reception.  In each pod there are eight to ten other families enduring their own private struggles.  It is clear that everyone deals with it in their own way.  Space is at a premium.  It can be loud…. a mix of parents chatting away, nurses going about their duties, alarms sounding and the odd baby crying.  But your focus never falters – it is always on the battle going on in your immediate vicinity.  You almost become desensitised to the constant noise around.  We made the effort to either be the first there in the morning or last to leave in the evening.  That way we got to enjoy a little bit of added privacy and in a way we got to enjoy that time more.

If I see another pink or purple La-Z-Boy recliner in my life, I will go stir crazy.  They did however provide a sanctuary for kangaroo cuddles and eventually breastfeeding.  Countless hours were spent in a near-horizontal position with the ‘little one’ curled up into a ball, sleeping on your chest. Within about 15 minutes your eyes get heavy and you find yourself in a constant fight to stay awake – completely contented knowing that at that point in time you did not want to be anywhere else in the world.

I was lucky, I did not return to work for the entire duration of Immi’s NCCU stay.  One of the things both Sam and I noticed was that a lot of fathers were unable to be there for the majority of the time. They would be there in the early morning or evening.  It was simply a case that work commitments meant that the time they were able to be there was minimal.  It’s one of the unfortunate facts of society. NCCU stays are rarely short.  I found that I was using all my leave going to the hospital.  Not an ideal situation.  You always envisage this time would be spent at home adjusting to your new family dynamic.  It becomes a real issue.  Do you take the leave off work during the NCCU stay or save it until you go home?  I do not even begin to think about being in this situation with other kids at home. That would be so difficult and we looked on in awe as it was obvious other families were doing just that.

As we got closer to coming home it became apparent that Immi was going to come home with home oxygen, after being diagnosed with Chronic Lung Disease.  A confronting thought, but the support of several other families that were in the same boat quickly eased those fears.  Organising this would have been insanely difficult if it wasn't for the help of Mater Mothers’ administration staff.  The process added a few extra days onto our stay.  

When the day finally came to room-in, the excitement was immeasurable. We floated up to level 11 and checked into our little room and finally the end was in sight.  We always said we would swap our stay in NCCU to be woken up every 15 minutes at home in our own bed.  That room in night tested that.  Immi simply did not settle and cried all night. We wondered if we had jinxed ourselves with the previous statement.  The following night at home we realised that she had only existed in a world of lights and constant noise. When we took her to room in, it was silent and dark.  We are still in the process of weaning her off the noise and lights. We are now used to sleeping with the lights on and falling asleep with the soothing sounds of ‘Rockabye Baby’ (check it out on Spotify!).

The day we left NCCU was met with mixed emotions.  As we stood on the front of the Mater Mothers’ ramp posing for the obligatory photo, it’s safe to say I have never been more excited in my life!  There was a sense of trepidation and anxiety, knowing that our safety net was gone and we were on our own.  We had an overwhelming sense of relief that we could put this part of our life behind us.  I know it’s a cliché, but that first drive home was the slowest drive in history. Walking pace at best!

We entered level six of Mater Mothers having no appreciation of what went on in there.  Not knowing what goes on in there or what to expect. We quickly realised it was like a parallel universe.  There is so much good that goes on, there is also so much heartbreak and personal struggle.  We left knowing we were fully prepared for anything that was thrown at us.  The nursing and support staff had transformed us from knowing absolutely zero, to two first-time parents that were ready to take on the world – even if Immi was looking at us wondering if we really knew what we were doing.  I can definitely say that our time was exhausting, both physically and mentally.  It did take its toll on our relationship on occasions.  It is monotonous and stressful; put these two together in any long drawn-out process and it's easy to take frustrations out on each other.  But essentially we have come out stronger as a family and if we can survive this, we can survive anything.  If there is one thing I realised during our NCCU stay it is this… Immi and those other little warriors in NCCU have achieved more in their short and testing lives than I have the entire rest of my life.  If their fighting spirit can be anything to go by, then the rest of their lives will be a breeze and us as parents have nothing to worry about.

Like many premature babies the battle does not finish the moment you walk out with your baby.  There are months, maybe years of further doctor and hospital visits.  I look forward to the day that this is all a distant memory – but one thing is certain... the time spent in Mater Mothers’ NCCU is definitely a life-changing experience.




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