Maddison's Story

27 weeks, 410 grams

The 19th of December 2014, a day we will never forget, after watching countless parents leave the unit with their precious bundles, it was finally our turn to take Maddison home. If you had told us a few months before, that we would finally be leaving the unit, we probably wouldn’t have believed you.

On the 5th of May 2014 Maddison was born by emergency C-Section at 27 weeks due to restricted growth and poor blood flow from the placenta, she was better off out than in at this stage. Maddison surprised everyone when she came out weighing a tiny 410 grams.

For us, having our first baby born into these circumstances was a harsh reality, during the monitoring prior to her birth we tried to prepare as much as we could, but nothing can ever prepare you for the roller coaster that is NICU. As her mum, I struggled at first to get involved and help care for her. Every time the alarms would go off, I would panic and think the worst. As Maddison got older, it got easier, and on day 12 I finally had my first kangaroo cuddle, from there, there was no stopping me, I stayed all day, every day, doing her ‘cares’ and preparing her feeds and medications.

Maddison didn’t have an easy time making it home, she struggled to gain weight, her undeveloped lungs meant she was on CPAP for months, she required laser surgery for Stage 3 ROP, and contracted Rhino Virus which sent her to isolation for a week, the list goes on and on.

When it finally looked like she was making progress, a bad heel prick and an oxygen requirement of 80% ended up with Maddison being ventilated and critically unstable, on day 108 of her life we were preparing to say goodbye to our precious girl, she was very sick and we didn’t know why.

Further testing showed that Maddison had Pulmonary Hypertension, increased pressure in the lungs making it hard for her to breath and to move that oxygen effectively around her small body. To treat this Maddison had a round of steroids and Nitric Oxide with CPAP. Slowly but surely she started to improve. From there we progressed to Wellington CPAP and finally to Low Flow Oxygen.

After 7 and a half months in NICU we were finally preparing to bring our little girl home. We came home on oxygen, a feeding tube and a feeding pump. By the time we left the unit we felt like trained nurses, we had to learn to do things like inserting a feeding tube, giving meds, dealing with oxygen tanks and visual monitoring of Maddison’s work of breathing.

Maddison is still being treated for Pulmonary Hypertension with medication, but recently came off oxygen during the day and in the near future will come off oxygen all together.  She still relies on her feeding tube for all her feeds, currently she takes small amounts of solids and finger foods.  It’s a long road ahead to be able to remove the tube.

Maddison is still tiny for her age, 9 months corrected and she is just shy of 6kg, meaning she is the size of an average 4 month old. Her development is slightly delayed for her corrected age  but she is getting there, she did surprise everyone when she sat independently at 7 months corrected. Maddison is a happy little lady who loves to smile and giggle all day long, she brings us so much love and happiness.  

Lastly, we would like to thank the amazing staff at Wellington NICU who made it possible for us to bring our baby home despite the odds always being stacked against her.