If I needed it after yesterday’s breakdown, today brought with it a sober reminder of what we were leaving behind. Penny, a little 24 weeker from country NSW, is leaving soon too after a long stay in hospital. She was an IVF baby, desperately wanted for almost 10 years. Life seems so unkind to the gentlest souls sometimes, and when her sweet, quietly spoken mother went into labour at 23 weeks, her baby was given little chance of survival. In a stroke of good luck swirling against the tide in a sea of bad luck, a bed opened up in Sydney and she was medivacked here on the sniff of a grain of hope that she would hold off until 24 weeks. Penny was born not long after midnight on the day of her 24th week of gestation. Against the mammoth tide of bad luck, her parents thanked the universe that she held out just long enough. Perspective changes you in this world and what seemed unthinkable one day can be a Hail Mary the next.
Penny will go to a regional hospital nearer to home, (a mere 3 hours away), and soon after she will be transferred to her local hospital for discharge to her family. Talk about a long road home. Today as she was feeding, her mother sat serenely in the chair, quite possibly thinking about a time not too far away when her life will resemble something other than a circus of beeps, and white coats, and scrubs, and bright lights. As if to remind her that she was anchored in the present, her daydream was shattered by the alarms.
There are two types of alarms in the NICU. One is a slow, rhythmic noise accompanied by a subtle flash on the screen. This means oxygen saturation levels are dropping. The blue line. Most nurses watch it for a minute then turn the alarm to silent and keep a periphal view of both the baby and the monitor as they go about their routine. We were told early on to take our cues from the nurses and only panic when they do. The blue line alarm is nothing to fear, but if it goes off too many times or sounds for extended periods the nurses will increase the oxygen administered to the baby. The blue line alarm is the purveyor of a growing dread in NICU parents, a slow burning fear that they are headed for that step backwards.
Most of the time. There were odd occasions when the blue line alarm kept beeping, and this was cause for concern. I had been present once when Stella’s blue line alarm went off and kept sounding. The nurses could do nothing to get her saturation levels up. They turned the oxygen knob from 25 until it reached 100%, they tapped her on the back and called her name, but still the alarm sounded. Her sats dropped steadily. 85. Beep. 74. Beep beep. 58. Beep beep. 46. Beep beep beep beep. 35. Panic stations. Stella began to turn blue. More beeping. Buttons were pressed, codes were called.
And suddenly her sats began to climb. Back to 50. Slowly up to 65. 76. 88. And silence.
The doctor observed Stella and could see no cause for the event, so she was carefully monitored, (more so), for a few hours and her oxygen knob stayed planted in the high 50s as a precaution. It was unexplained. A one off.
But mostly, the blue line alarm’s power over NICU parents lies not in their child’s immediate danger but in an insidious distraction and a potential foreshadower of frightening things to come.
The yellow line is a different story. It shows the respiratory rate. If the respiratory rate stops suddenly for more than a few seconds the yellow line alarm goes off. The baby has stopped breathing. Apnoea. After a further thirty seconds the alarm intensifies and battle stations are manned.
This morning, out of nowhere, Penny’s yellow line alarm sounded, breaking her mother’s quiet reverie. The nurse on duty poked her head up from behind the desk and listened for a moment. The alarm intensified, wailing and howling as Penny’s colour became mottled. Her mother turned a whiter shade of pale and responded to her daughter.
“Penny?” She was trying to remain calm, just like the nurses have taught us. “Penny darling?” Penny was blue. “Nurse, I can’t wake her. I can’t get her to breathe!” Nurse Regina walked over with a calm urgency, impeccably controlling the human instinct to panic and with a soothing voice, she said “Okay Penny dear, time to wake up! You want to go home soon don’t you?”
It felt like an age as I sat transfixed and terrified. These are the only time in the NICU my attention is not on you and only you. Moments dragged on and Penny still didn’t breathe.
And then she did. Two breaths and the alarm slowed. Five breaths and it was all over. Penny was pink again. Her mother could breathe again. And silence returned to Special Care.
Still calming herself, she asked “What does that mean?”
Nurse Regina smiled. “Just an apnoea. She hasn’t had one in a while. Its fine – she’s going to be monitored for a while yet, even after you leave here.”
“Yes I suppose so. Two more hospitals then we are home.”
I smiled at her, as if we were in the trenches and I knew what she was feeling. The truth is though, I didn’t. Your yellow line alarm hasn’t sounded since the night you were born. You had a few apnoeas, which is completely normal in the early days, though I felt sick each time. And then it stopped. Your blue line alarm sounded intermittently throughout our stay here. Never for long, but with frequency. Your nurses generally turned the alarms off because they tend to grate on the parent’s more than anything. We tend to place too much emphasis on them, while the nurses tune them out. But the yellow line alarm had never sounded.
And now, you are off the monitors, ready to go home in just a few days. No more yellow line alarm. No more blue line alarm.
The events of yesterday seemed so far away in that instant. Like it had happened in a dream I had a few days ago.
You are coming home soon. On 250ml of oxygen, but coming home. No more hospitals to go. You are well, alarm free. You have a tiny little portable monitor which will tell me if you stop breathing. But no screens. No lines. And you have never turned blue before. Why did that give me confidence?
I don’t know. I’m finding myself with more questions than answers as we near the end of our stay. More ways to find perspective, and equally more ways to find confusion.
It’s almost over. Better than that, it’s changing. It’s progress. And you are going to be okay.