Additional Needs

September is NICU Awareness Month

Posted by Ceri-Ann Brown on 23rd September 2016 Additional Needs, Disabilities

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It is one of those things where if you have ever had a child in NICU then you are most likely all too aware of it as generally it will impact how you see the world forever from the moment you set foot in there.

I have no scintillating statistics to share with you all, nor do I have any amusing anecdotes or facts, but I do like everyone else have my own journey to talk about.

I don’t think that even half an hour passes where I do not think back to those probes, tubes, wires, monitors, machines, beeping that we encountered two and a half years ago....

My daughter was born full term after a healthy pregnancy.

Her heart rate slowed when I was in labour and I was rushed for a Category-A emergency caesarean section.

To this day that scar serves as a painful but also joyful reminder of Amy's entry into the world.

The scar has faded but the whole area around it feels numb- quite a fitting metaphor for how I deal with the PTSD acquired from that time.

It happens less now, but at night when I go to bed, I sometimes almost feel all too real that sensation of being laid on a hospital bed and being whisked down a corridor for the emergency surgery.

As I move there are people shouting, people talking to me and asking me questions, my partner's terrified face rushing alongside us.

I can see the ceiling of the hospital corridor - lights - ceiling panels - lights - ceiling panels. Breathe, breathe.

Must remember to breathe.

"Make my baby safe!" I scream in desperation, no idea what is happening. "Are you allergic to anything" asks the surgeon as we rush along. In my traumatised state "pineapple!" I retort, barely able to speak. Something we would look back on and laugh about when reading the birth notes months later.

"Ceri-Ann! Ceri-Ann!" I hear in a dulled but echoed voice.

My eyes start to open. I am hooked up to all sorts of machines, I am pumped full of morphine and feel strangely serene. "I am a robot now" I said as I woke up from the anaesthetic. Yet another amusing anecdote from that day.

"Your baby is seriously ill. She is fighting for her life. This. This. This doesn't happen" said the senior midwife gravely from the end of my bed.

She looks devastated. A sobering moment.

I had thought up until then that they were just "preparing" to bring my healthy bundle of joy to me.

But no, this was real, this was terrifying, this was what I didn't think happened to "people like us" (whatever the hell that meant).

We had a brief meeting with Amy. She was lifeless, motionless, covered almost entirely in tubes.

She was transferred to our city hospital for cooling therapy. She had suffered a lack of oxygen for eight minutes and acquired a serious brain injury (hypoxic ischemic encephalopathy - grade 3)

The next day I hyperventilated and screamed until we were transferred to be with her.

I don't normally act this way - mother's instinct had superseded everything else - even having just endured major abdominal surgery I somehow found the strength to rush round in a panic which was strange as I was entirely reliant on a wheelchair for days after that.

This is where our NICU journey began. 

Until we encountered this I had absolutely no idea such places existed, that such sorrow and such joy could exist side by side. The hopeful look in parents eyes as doctors deliver them information.

We were so vulnerable - we had no idea what was going on.

"She may not make it through the night" said the doctor. "And if she does her quality of life will be significantly compromised." I stuttered on my words, still trying to make sense of what was happening; "is there any hope?" I asked.

Silence.

I would lay awake, as would Phil - just staring at the clock, staring at the wall.

How had this happened to us? Why did our little girl have to suffer? Will she make it?

How on earth will we cope if she doesn't?

Our days were made up of many visits from our parents who were so kind and washed our clothes for us, brought us food, tried to cheer us up. They were also made up of huge victories like when she did her first wee - proof her system was working!

The day they turned off the cooling cot, the day they lowered her oxygen, the day she stopped having constant seizures - each one of these things were absolutely huge for us and part of the many steps to getting her back home.

Aside from that, the other perks were gross microwave meals, constant pre-packaged sandwiches, showers in the hospital that caused agony on the stitches, and so on.

It wasn't ideal; things improved when we got a place at Ronald McDonald house - we got at least some normality here as we could buy in and cook our own food (not that we really felt like eating!)

The nurses were absolutely amazing - I have never seen anything like it.

So dedicated and knowledgeable, they never ever stop! They offered us continuous unrelenting support, comfort and conversation.

I always remember when one nurse had seen us literally collapse to the floor crying after I said "why doesn't she move?" and the nurse said "there are good days and bad days… today was a bad day. But there will be good ones too". She was right.

Many of my hours there were characterised by a bitter sadness at how most parents get to pick up their child immediately. They leave the hospital same or next day.

We waited five days to hold our child, and when we did it took 45 minutes to safely get her from the incubator and into our arms.

I remember at that time thinking I was endangering her by holding her in case I knocked a tube out - a mum should feel like she is protecting her child when she holds her. It still hurts to think about.

The other hours were spent either sterilising breast pump accessories, or indeed expressing the milk via a pump. This was a very exciting time for us, not only did it keep us very busy, it also meant I was giving her something that would help her. It was amazing and I continued to do it for as long as I could.

Anyway. You may have gathered that, once I get onto this subject, I could talk about it forever.

We were only in NICU for two weeks; the remaining four weeks was spent back at the local hospital once Amy had stabilised and was safe to be at the neonatal unit.

But I shall leave this here with you all... if you ever see a fundraiser for a local neo natal unit, a NICU, or Ronald McDonald house - please spare some pennies.

You may not realise just how much those pennies matter to people like us.

There were many things given to us during that time that softened the blow and they may not have been available if it weren't for the generosity and kindness of others.

If you too have been through a NICU journey - feel free to leave it in the comments. I read all blog comments.

Also if you are struggling to sleep, or cope with the memories, if you have flashbacks, PTSD and so on - I urge you to talk to a doctor and seek medical attention for either medication or therapy.

Talking about it is half the battle sometimes.

If someone you know is staying at NICU with their child - they may want some space, don't take it personally, it's just a really hard time.

If they are happy having visitors - snacks never go amiss, also tell us about back home and your day etc. - sometimes the distraction is welcome, we forget there is a real world out there.