When wee Micah was born, all curled up he was no bigger than a bag of sugar. He had arrived over three months early and was immediately placed in neonatal intensive care, where he would spend the next 102 days of his life. This is his story, written by Mum Naomi.
Our baby boy, Micah, was classed as an extreme preterm baby when he was born at just 26 weeks and one day.
This was my first pregnancy and had been rather uneventful until I found I was getting breathless completing simple tasks, and after a weekend of difficulty breathing I decided to visit the doctor.
I had gone to work as per normal and left for half an hour to visit the doctor, thinking it would be a modification to my asthma medication, and instead was taken to their emergency room and hooked up for an ECG. After a few quick tests, I was told they were calling an ambulance to take me to hospital. It was during this ride, while answering the questions that I was advised that I was possibly suffering preeclampsia but four hours of high blood pressure readings were needed before this was confirmed. The only cure for preeclampsia was to ‘remove the placenta’ via delivery.
I arrived at North Shore hospital and was taken to the maternity ward then given all sorts of pills to take, a shot of steroids for baby's lungs should the worst case scenario arrive and then sent to Auckland Hospital complete with sirens and lights because North Shore hospital was unequipped to deal with an extreme preterm baby.
At Auckland hospital, it was confirmed, yes, I have preeclampsia but I was looking good. My baby's heartbeat sounded fine, ultrasounds of my baby looked fine, my blood pressure had come down thanks to huge efforts by North Shore Hospital and now we just needed to wait... and hang on... Tomorrow they would get the second round of steroids to help the baby’s lungs, chances of survival would greatly improve with each day we had.
Thinking we were in for a long anxious wait my mum and husband went home, then the last round of blood results for the night came in... A flurry of doctors were back poking me and asking if this hurt, testing reflexes, poking now swollen limbs, asking about headaches and listening to my heart and lungs. The results were not good. I had developed HELLP syndrome. A decision was made that this baby needed to be delivered, my husband was called back – we were going to the delivery suite for an emergency c-section.
So in the very early hours of Tuesday morning June 23, our son, Micah, was born. He was as long as an A4 page (or your standard school ruler) and weighed just 690grams. Curled up, he was no bigger than a bag of sugar. He looked like a very tiny old man (our very own Benjamin Button) but he came out fighting and was placed on CPAP to assist his breathing. It would be over 12 hours before I was able to set eyes on him again and marvel at this tiny little person before me.
The many doctors and nurses welcomed us to the NICU world (in our time we would visit NICU Level 3, Level 2 & then SCBU). We were told he was born very early and was very fragile. We would need to ‘take each day at a time’, that we should be prepared for a rollercoaster and don’t plan on him coming home until at least around the time he was supposed to be born over three months away.
Some days it was more like take each hour as it comes. Micah could handle very little interaction so there were days where you couldn’t even touch him, just watch him through the incubator windows. There were days when he was crying but there was no sound because that hadn’t developed yet, and there was nothing you could do to comfort him. Days like that you would go to the toilet, shed a few tears and then go back to sit by his incubator on the odd chance that you might get to wipe his eyes & mouth.
For every step forward, there were often more than a few steps back but you learn to take milestones where you can, whether it was yay he was up to 3ml of expressed breast milk every two hours, yay he had a dirty nappy or yay something had been turned down, a medication had been stopped.
Slowly your focus shifts and you begin to look a little further ahead, you go from hour by hour to day by day. Has he put on any weight, how was his oxygen requirements looking, were there any changes, what did the doctors have planned?
My son had a particularly rocky start to life, requiring instances of resuscitation, at least 10 blood transfusions and many anxious moments. He required all forms of oxygen assisted breathing and stepped back and forth between them on numerous occasions.
When they said rollercoaster, they weren’t kidding… After the first month of his life I had only been able to have two cuddles; the opportunity to hold your baby to your skin, keep them warm with your body heat, so they can smell you and hear your heartbeat and know that you are close (and that they are loved). By eight weeks, I had reached the milestone of ten kangaroo cuddles, and I was becoming a master of juggling the tubes to lie back in the reclining chair and would cuddle my little bundle at every opportunity.
When we were finally able to take him home in October, he had been in hospital for 102 days – 73 days at Auckland NICU and 29 in North Shore SCBU.
He came home on oxygen and with an NG feeding tube. It would take another few months of weaning his oxygen, overnight oximetry tests and finally by Christmas he was oxygen free.
These first few months at home were not without their trials still watching and counting every gram of weight, knowing that a little bit of extra fat would help them if they got sick, and worrying about sickness. We are told most prem babies will end up back in hospital in their first year, especially those with compromised lungs, but slowly he grew and started ticking off his milestones, smiling, rolling over, crawling, talking, walking..
People always comment that it must be hard to leave your baby in hospital and while it is not the idea of parenthood you thought it would be, your baby is in the best place possible for them with people watching over them while they sleep. What was harder was arriving at the hospital and hoping that any changes were for the better, that there wouldn’t be a crowd of anxious doctors surrounding your incubator or a worried look in the nurse's eye. Some days as you stand outside the door, washing your hands with steriliser gel, finding strength for what you may find on the other side or trying to peek in just to get an idea if today was a good day, or a slow hard day.
Slowly things get better… eventually you reach a point where the days you have left until your baby was originally due are less than the days you have been there, and you feel like the end is in sight. Only you don’t know where it is or when it will be, only that it is there.
In our time we met some wonderful people, heard all sorts of stories and grew to admire the strength of the parents around us. We had some truly anxious moments but got to experience the joy and love of being a parent despite our surroundings and situation.
We now have an extremely active and slightly mischievous 20-month-old boy who keeps us on our toes, and looking back we can only marvel at how far he has come. As a side note, on top of the appreciation I have for the staff at NICU and The Neonatal trust, I have also developed a whole new appreciation for cows and the whole milking process.
If you’re reading this and you’ve got a baby in NICU right now, kia kaha. It can be a long, slow and scary road ahead but remember you are not alone, there are not just the medical professionals looking out for you, but The Neonatal Trust has resources to support you as well.
The Neonatal Trust supports families with premature or sick full-term babies as they make their journey through neonatal intensive care, the transition home, and onwards. They're a partner charity with One Percent Collective, meaning you can support them with 1% of your income.