After 10 weeks of living on a knife edge - where one minute Ashlea was doing well, the next she was critical, then she was doing well again, then she was sick again, we had finally gotten to a point where I thought we were over the worst of the drama. That is always a dangerous place to be don't you think?
2 days prior (Friday 30th June), I received a call from the nursery to say that Ashlea had had 'a bit of a setback' and had been moved back into ICU and re-intubated. WTF??? This couln't be happening again.
I rushed to the hospital and discovered that the 'setback' was actually almost a full arrest. She had had an apnoea but it wasn't one that just required a little bit of oxygen, or even oxygen given via a bag and mask. It required full CPR (complete with chest compressions) and re-intubation to get her stable. She missed out on the shot of adrenaline by a whisker. Since then I have seen the resuscitation charts on the wall in Emergency, and I am shocked by how far through the list of procedures she got.
Once she was stabilised and they were able to get a blood gas, they realised that her bicarb levels were effectively zero (unreadable) and her pH was 6.85 (should be 7.35 - 7.45). She was VERY acidotic and received countless bicarb infusions over the next few days to try to correct the imbalance. As the weekend wore on she remained acidotic and her dependance on the ventilator increased. She was taking no breaths of her own above the vent. The vent was taking at least 70 breaths a minute for her to try and correct the acidosis.
This continued into the Sunday morning, at which point 10 weeks of hoping and praying and living on the edge came crashing down on me.
How was it possible that we were back here again??? She had made it all the way out to Special Care. The next stop was meant to be home - not right back to the beginning.
Her nurse that Sunday was a lovely, level headed, calm man named Noel whom I will never forget. I asked him what would happen if she didn't make it. How long would she have? Where would 'it' all happen? In the nursery? In the 'special room' out the back? In a family room on the ward? How long did he think she would live after taking her off the vent? Could we have family members visit? Could we take photos?
You know you are in trouble in the NICU if your nurse answers these questions directly. If your baby is not critical they are the first to point out that you shouldn't be thinking like that. Not that day. Noel answered my questions honestly. He knew as well as I did that it was possible she wouldn't make it.
All the while, Ashlea was incredibly unstable in spite of being on full life support. She kept dropping her heart rate and her oxygen saturations into the 40's. After you've been in the nursery awhile you know that isn't good. For anyone who hasn't been in the NICU or PICU, oxygen should be close to 100% and heartrate around 140 (for a baby). What other options are there when you are still having apnoeas despite being on full life support???
In the middle of all this instability and my discussion with the nurse, Ashlea had a more serious 'moment'. THE moment. In hindsight, I think her breathing tube was blocked with secretions and she just needed suctioning, but AT THE TIME, I was thought she was dying.
All of a sudden her heartrate and oxygen plummeted (to the low 40's), all her alarms were sounding - you know that high pitched fast one that 'dings', plus the ventilator alarm was beeping with the words apnoea flashing on the screen. I thought she had stopped breathing.
Usually if it is something minor the nurses can attend to the situation themselves, but Noel quickly summoned the doctor over so they could both work on her. That convinced me that she was having another episode like the Friday before and would require full resuscitation.
I rarely had complete meltdowns in the nursery, because I'm not really a complete metldown kind of person. I'm a hold it together kind of person.
Not that day.
I LOST it and started sobbing hysterically. One of the other nurses asked me if I wanted to go outside. Was she serious? I thought my baby was going to die - there was no way I was going outside.
I wanted to scream at the top of my lungs:
NOT LIKE THIS.
All I could think was 'Not like this. She can't die like this. Murray isn't even here (he was dropping Emma off to his mum's). It can't happen like this. Not now. Not like this.' My mind was screaming this at me, but I had my hand clamped over my mouth so the words couldn't come out. Even in my hysteria I was mindful that I wanted the doctors to be able to concentrate on what they were doing, and not be distracted by me.
The other thought screaming in my head was:
JUST GIVE HER TO ME.
Let me hold her. If this is it, just GIVE HER TO ME. I had been obsessed right from the beginning that if someone was going to die, it was going to be IN MY ARMS.
Most times when babies die in the nursery, it is a 'planned' thing. That sounds awful doesn't it? But usually it is obvious that a baby is not going to make it, and at a time that is suitable to the family, life support is withdrawn and the family are able to hold their baby for his or her last moments. I had been lulled into a false sense of security thinking that if she was going to die that is how it would happen.
The events of that weekend completely devestated me. The cold hard reality that she could die and I might not be there was utterly horrifying. I even asked Noel if that ever happened. Do babies ever die in the nursery and the parents aren't able to get there? And if so what happens? Sadly occasionally it does happen, and in that case one of the nurses will hold the baby in their final moments. How utterly heartbreaking. Even thinking about that still reduces me to tears to this day.
Ashlea continued to remain ventilated for the next 7 days. It was during those days that I realised just what we were in for, that our lives were forever changed. That is when we found out that her kidneys weren't going to recover and that she would need a transplant. We even discussed with her doctors that if her kidney failure was going to be quick that maybe we should switch from intensive care to palliative care. Fortunately her kidney specialist's initital prognosis was that she wouldn't need a transplant for 2 - 4 years, so we continued with her treatment. At that time we also discussed 'developmental outcomes' with her doctors. It became clear to us - although I suspect it had been clear to the doctors from much earlier on - that the chances of Ashlea being 'normal' were very slim. Her chance of cerebral palsy and intellectual impairment were significant, we already knew she had a vision impairment and that she would need a kidney transplant.
By the end of the week I was shattered. For me, it was a turning point. A breaking point really. All the things that I had thought were secure were all whisked out from under me. The illusion of control was gone. I was left with cold hard reality.
Bad things happen. They can happen to anyone at anytime. There are no guarantees. The worst could still happen.
So there you have it - the events of 'that day'. As I have been thinking about 'that day' during the week, I have realised that it is more about me than about Ashlea. It is not that it was her worst day in the nursery, it was MY worst day. My day of reckoning. Of coming face to face with reality, and the fact that we mere mortals have so little control over the events of our lives.
PS Big hugs to those of you reading who have had similar days - worse days than this. I know who you are!