The NICU Rollercoaster

When you see the midwife or GP during pregnancy, you discuss many different health issues that can occur. Morning sickness or hyperemesis gravidarum, gestational diabetes, pre-eclampsia and group B strep.

However, no one ever talks about PPROM (pre-term pre-labour rupture of membranes) and the likely subsequent premature birth. No one mentions the NICU (neonatal intensive care unit) and how it could become your life for days, weeks or as in our case, months.

My waters broke at 21 weeks and my son was born at 25+4 weeks gestation, weighing 640g (1lb 6oz). That was the day we stepped onto the rollercoaster of NICU life.

The first 48 hours in the NICU, especially at such an early gestation, are critical. You trundle along blind to anything but that tiny scrap in the glass box, not knowing what’s to come or what to expect. The uphill battles begin with stabilising breathing and blood pressure, finding tiny veins for life saving medication and nutrition as well as scans to identify organ damage, from bleeds on the brain to holes in the heart. There are wires, tubes and needles, machines with flickering numbers, flashing alarms and the hum of breathing machines. So much information to take in.

Your baby makes it through those crucial first days, your spirits start to soar, feeling positive, imagining the future, the day you’ll get home. Then suddenly there’s concerns, an X-ray showing something not quite right, a blood result showing something too high, or a machine showing concerning numbers. Then you’re free falling, down to a dark place, not knowing when or if it’ll stop. Words like NEC (necrotising enterocolitis, a potentially life threatening infection of the bowel) and hypotension accompany the grave faces of the medical team. A sudden pause for new medications and waiting to see improvement, if it comes.

Then suddenly you’re on the up again, learning to change a tiny nappy, first cuddle, reduced breathing support and weight gain. There’s talk of leaving the ICU (intensive care unit) for HDU (high dependency). There’s breastfeeding attempts and first clothes. Making new friends, other parents on the same track, just at different points. All the things you thought you’d be doing but in a different setting.

Just as things feel smoother there are some twists and turns along the way. You discover breathing machines that maintained life have caused damage to the lungs and airway. There’s medications that solve one problem but cause another. Surgery for unexpected issues.

Despite this the finish line starts to get nearer. You start to let yourself believe that this ride will end with taking your baby home. Yet still it doesn’t let up, you’re thrown into turmoil again and again with bouts of pneumonia, collapsed lungs and possible sepsis. The phone call in the night that no one on the journey ever wants to hear, asking you to come in straight away. The concern etched onto the faces of the medical team. The transfers to even bigger hospitals. You start to imagine life without your baby, hoping for the best but preparing for the worst.

However that tiny little miracle fights back, determined to make it home. Suddenly it’s car seat tests, removing the NG tube, overnight stays and home oxygen discussions. Positive words such as discharge meeting replace the scary discussions from weeks ago. Finally it slows to a halt and you’re walking through those doors for the last time, with your tiny warrior looking lost in a car seat. A whole new ride is about to begin.