I was blue, floppy, unresponsive.
My heart had stopped.
I wasn't breathing.
An incredible medical team brought me back.
In truth, this wasn't the first time I needed help. But, as a sick premature baby, everyone was holding their breath and dreading the day something bad happened. In a way, we were bracing ourselves for it and, even if we couldn't admit it, we were thinking about it. (There was always an incredible and stubborn belief that I would be fine!) Still, there were countless occasions where I was massaged and tickled and reminded to breathe.
And then, during the cancer time... there was another time I needed help to keep breathing... to keep my heart beating. It was after my surgery. But, again, I was fighting cancer. We had absolute belief that I would beat it, but we knew the realities. We'd seen kids die. We knew what we were up against.
Three years ago, I had surgery on my hips. (My hip was dislocated; a problem related to my cerebral palsy.) We were not prepared, when I needed to be revived, that time. Seeing the medical team running. Hearing the code blue. Seeing me being revived. That was tough.
(We don't focus on these days. We don't sit in a corner and remember the bad days. We acknowledge them, because they make us the people we are... Strong, resilient, determined, hopeful.
And, we acknowledge the bad days because we have built up an on-line community of people who believe in Dexter. People who love him. People who look to us, because they are on a similar journey and we feel we owe everyone the truth.)
Here's the post we wrote, about the day we nearly lost Dexter, three years ago today:
Three weeks ago, we were driving our new family of five home, for the first time. We were bring our baby daughter home.
Two weeks ago, we split our little family up, with four of us driving to Sydney and one staying behind in Kiama. We were headed back to hospital, for more surgery.
One week ago, four of us remained in a holding pattern, unable to return to our normal life. We were still torn apart, and Andrew and I got to know our new daughter, as we sat by Dexter's bedside.
Today, I can finally sit down and reflect on just how big the last three weeks have been - not only for me, but for Andrew, for our kids and for my family.
When I was taken into the operating room, I was overwhelmed by the familiarity of it all. Kaisa was a term baby, and we were very confident she would be fine, but... Dexter was born by an emergency cesarean.
I didn't get to see Dexter, or hold him, after his birth.
He only let out one tiny cry before he had a tube put down his throat to help him breathe and the nurses ran away with him.
The smells, the sounds, the lights.... it reminded me of Dexter's birth, and I was so afraid we would have to go through the same awful experiences.
I tried to remain calm, but my heart rate was soaring; the beeps on the monitor getting faster and faster.
Getting the injection in my back should have been straight forward, except it was a junior doctor performing the procedure. I could hear his senior discussing where he should and shouldn't be putting the needle, how far it should be going into my back, whether there should be any resistance or not.
I tried to remain calm, as a shooting pain went down my right leg, and he was ordered to remove the needle immediately.
After what seemed an eternity, I was placed on the table, expecting Andrew to be joining me, so they could start. But suddenly, everyone had concerned looks on their faces and were asking how I was feeling.
My usually normal blood pressure had dropped to worrying levels and my heart rate, that had been soaring not five minutes before, was scarily low.
They were worried.
Only after it was deemed that I was stable, did they allow Andrew to join me. That's when I started to relax, only to realise that it was another junior doctor performing the cesarean!
Fast forward a few hours, and I was proudly showing off our new little girl.
Had the surgery been postponed, Dexter would have been in his brace over summer... we would have lost another summer of swimming. We've lost the last two summers; Dexter had his central line in (for his chemotherapy treatments) and the following year, he had the purple leg plaster on, after his hip adduction surgery. The thought of losing another summer of swimming, was heartbreaking.
Dexter loves the water and it is wonderful physiotherapy for him.
When Dexter undergoes any form of surgery, it is stressful.
There have been too many bad times associated with surgery, and the recovery - times when we have seen his little body limp and pale and being brought back to life by a handful of medical staff. That's not something anyone should see.
I've blown in Dexter's mouth, and I've rubbed his chest. The nurses have shown me, over time, what to do.
So we were surprised when Dexter was allowed back on the ward, following this procedure. Normally, Dexter would be sent to the Intensive Care Unit.
Twenty four hours later, it was a different story. Things turned bad.
Dexter had had a bad first night, he had experienced a lot of pain and they didn't know how to effectively handle this. Normally, children receive an alternate pain relief, to help with the bad pain, but Dexter stops breathing when he receives this, so that wasn't an option for him.
He was given the maximum amount of morphine and ketamine to help counter the pain.
Unfortunately, this almost lead to an overdose.
A code blue was called.
A crash cart was pushed to his bed.
The ICU team were summoned.
Dexter's little body was floppy. He was cold.
Not for the first time, we thought we had lost him.
We stood together, and watched... and waited. Helpless.
If it had not of been for his very determined nurse, the outcome may have been very different and for her, and the team, we are incredibly grateful.
If it wasn't for them, we might not have Dexter with us today.
When we should have been celebrating being a family of five, we were pulled apart and spent these nights, split, under three different roofs. Our family was broken.
We were frustrated. We were cranky. We were confused.
We were physically and mentally beyond exhausted.
We cried. We felt helpless.
We didn't sleep.
All we wanted to do was to make Dexter better and we couldn't do this.
We couldn't explain to him what was happening.
We couldn't explain to him why it was happening.
We couldn't even pick him up and hug him.
We felt defeated.
We heard his gut-wrenching sobs and wiped the tears from his eyes. We held his hands and kissed him. We cried with him.
He is getting stronger, his pain is becoming manageable and we are much more confident in handling him. We have to be careful, each time we move him. Carrying him is difficult, but it's amazing how quickly you learn to adapt.
We see his muscle tone deteriorating. We see him struggling to hold his head up and we watch as his torso strength diminishes and he can no longer sit without falling to the side. We know he will have no muscle tone in his legs.
We've been told he will be set back at least 18 months in his physical development. And that, that breaks our hearts!
We've tried so hard, to get where we are... for it to be all taken away.
We struggle to make him eat, but the energy this takes makes meal times a slow, frustrating and often, frightening experience. We know, if Dexter does not eat, he will end up, permanently, on a gastro feeding tube... the feeding tube that goes down into his stomach. If that happens, he will never be able to pull it out...
He will be stuck with it, and will no longer be able to enjoy ice-cream or a biscuit.
We hear Dexter, when he sobs and cries and cries. He doesn't have the words to tell us the pain is worsening, so he has to wait until it brings him to tears.
Hearing Dexter cry... that breaks our hearts.
We can't even cuddle him... the brace is in the way.
People ask how we get through these things.
We have no choice.
It's hard; heartbreakingly hard and beyond difficult.
So, we look at Dexter, look at his strength and determination. Look at his inability to give up. That's how we get through.
Andrew and I have always been able to share our worst fears, and our worries.
We comfort each other, and against all odds, have become stronger, as a couple.
And, we have our kids, our gorgeous three kids.
That's how we get by.
And now, three years later, we are mentally preparing ourselves for Dexter to have this operation again... on both legs. We're hoping botox injections might help us avoid surgery, but...