I recently had the honor of speaking at the RBWH Foundations high tea launch of their “Royal Mums” book. They wanted a first hand account of life in a NICU so I was asked to tell my story, well our story really because, if you’ve had a child in the NICU or SCN, it really is a joint venture shared around your family–or at least it should be.

The story I read that day was sort of the abridged version. There’s only so much you can say about a five month hospital stay in 600 words, but then even 2000 words wouldn’t really convey our experience. At any rate, this is our story…

Her story, my story, OUR story

Two days before the birth of my daughter I went to the hospital for a follow up scan after she measured two weeks small during her morphology ultrasound.

The images were fuzzy, nowhere near as clear as they were two weeks prior; our tech said that this indicated low amniotic fluid. She also said that at 26 weeks gestation our baby was only measuring 23 weeks. So, after a consult with an obstetrician who specialized in “troubled pregnancies”, I was admitted and we were told the worst. Our little girl had only a 10% chance of survival.

After a day spent in the birthing centre I finally had a bed—in the maternity section where I got to listen to all the healthy babies crying while their mothers cooed and cared for them. I cried most of the night. Every time I heard someone’s child stirring I’d think, “My baby is not going to cry”.

Thursday morning our daughter was born via C-section weighing 428g. She surprised the doctors, and the paediatric team decided she was well enough for them to stop and show me her before she was wheeled to the NICU.

During the first couple of weeks I was numb. Visiting the hospital was hard but not as hard as seeing my child attached to all those machines. She was incredibly fragile. More like a baby than I’d expected but not like any baby I’d ever seen before. Her skin was translucent and paper thin. So delicate those even simple, ordinary things like nappy changes caused it to tear and bleed.

After the shock wore off I existed in a trance of sorts. I didn’t want to visit the hospital but it had become harder to stay away. My life became about doing what was best for my daughter. Pumping every three hours around the clock and spending hours sitting by her isolette; talking to her through the perspex, comforting her as best I could without actually being able to pick her up. It’s the most unnatural thing to know your child is upset and not be able to fix it. To this day that still hurts my heart.

She was five weeks old before I was able to hold her. She was tiny; I couldn’t even feel her weight amongst the blankets. I remember the way her little ear, devoid of cartilage, pressed against my chest as she lay there just below my chin. Until that point I thought I’d bonded with her like any mother does, but I was wrong.

As the nurses moved away leaving us alone, with my eyes closed and Erin settled upon my chest I felt a rush of affection. To smell her and kiss her tiny head was beyond anything that I’d experienced till that point. It was incredible.

All in all we spent 148 days in hospital, but it didn’t end there. Since coming home we’ve been faced with more challenges and many difficult days. But we’ve been lucky. Erin is an exceptional child; she’s happy and healthy and suffers from no long-term effects of her very early birth.