Our daughter Elsie was born on the 26th of October at 8.24pm, weighing 1211 grams at 27+6 weeks gestation.

It was discovered I was in premature labour at 27 weeks following a small bleed. Living in Taupō where our hospital does not have the facilities to treat such premature infants, I was rushed to Waikato Hospital where the odds of my baby’s survival were much higher due to their technology and expertise.

After 6 days in Waikato Hospital, Elsie was born quickly one evening following my waters breaking. There was no time for a c-section as she was in major distress, so the incredible doctors quickly delivered her using an episiotomy and forceps.

At 1.2kgs Elsie was a good weight for her gestation, despite having absolutely no body fat (as you can see she was all skinny wee arms and legs!). Fortunately my milk came in quickly and plenty of it – so much so that I was able to donate a whole bunch of milk to the hospital to help mothers and babies whose breastfeeding/expressing journey’s were not quite as straightforward as my own.

The NICU staff were incredible, treating Elsie with such kindness and respect. The staff encouraged endless kangaroo cuddles, reading books, singing and playing music. My job for the foreseeable future was to keep expressing milk three hourly day and night. We were fortunate that Elsie didn’t have any major complications throughout her NICU stay and every day that passed was one day closer to going home.

It’s common practice for premature babies to receive head ultrasounds in the days after their birth, as they are at a high risk of brain bleeds. Elsie’s brain scan showed some abnormal changes, but initially the doctors didn’t seem too worried. In the following weeks and after more ultrasounds, it was clear that the doctors were growing more concerned. I finally got up the courage to ask what these changes to the brain meant for Elsie. The words ‘periventricular leukomalacia’, ‘brain injury’, ‘disability’ and ‘cerebral palsy’ were mentioned. In those moments everything was a blur. I was bought to my knees. If I could have taken her place, I would have done so in a heartbeat.

The doctors couldn’t tell us how Elsie’s future looked and quite frankly, I didn’t want to know. I recall the day where a new doctor pulled me aside to give me her opinion on Elsie’s scans and how she may be affected. My husband wasn’t there that day, I was alone. That was a life changing meeting, being taken into a conference room, no support person, my daughters’ scans highlighting her brain injury displayed largely on a projector screen, discussing how her life may look and the challenges she may face. I then had to call my husband, who was at work, and tell him life-altering news about his daughter. Again, I was bought to my knees, except I had no choice but to keep going.

Elsie was transferred to SCBU at Rotorua Hospital where she remained for another six weeks. Being a much smaller unit, I was lucky enough to get to know all of the staff. They treated me like a friend, taught me so much about motherhood and hugged me when I cried. They will forever hold a special place in our lives.

As the weeks went on, I slowly took over all aspects of Elsie’s care including tube feeding and medications. We spent Christmas in SCBU. I craved my wee babe all hours of the day and night, and fortunately I had a room right near the nursery. I recall some nights sleeping in the nursery with Elsie on my chest, and those quiet moments are some of my favourite memories. We had so much support. Friends would visit and sit with us for hours, and my best friend organised grocery and petrol vouchers. We received welcome care packages from the Neonatal Trust and so much more. People went out of their way to help us along in any way possible, and whilst being so overwhelmed at the time I couldn’t manage a proper thank you, I hope they know how much they were appreciated.

Fortunately Elsie had a seamless transition off high flow and started breastfeeding. Once she was exclusively breastfeeding, her NG tube was removed and a day or two later she started gaining weight and we were allowed to go home. The day we took Elsie home after eleven weeks in hospital was, quite simply, the best day of our lives. We felt more than ready to take her home. Whilst the fears of Elsie’s future lurked in the back of our minds, we loved every minute of having her home with and we feel so lucky that she was and still is, a very healthy and content little baby.

We are anticipating a diagnosis of cerebral palsy for Elsie, which will likely come following an MRI on her brain at two years old. I was told by many that the first year of parenting a child who faces challenges is the hardest. Whilst I love every moment with Elsie, they were so right. The first year was SO HARD. The waves of grief came on strong and often. Amongst the common feelings of isolation in early motherhood, this extra grief and loneliness weighed so heavy, some days it was a struggle to remain upright. Fortunately, we had so much support from everyone around us. Our parents visited often, and my parents were sounding boards for all of my worries and fears. I’m sure these were incredibly difficult conversations for them to have and there were days when we all cried together.

Fifteen months later, I am now beginning to pick myself up off my knees. I have been to the darkest of places, but now I’m coming out of the darkness to see the absolute beauty that there is to this wee person’s life. Elsie is an absolute ray of sunshine, happy and always smiling. We have thrown all milestones out the window and simply allow her to do things at her own pace, with guidance in the way of physical therapy. She is bright, funny, loves her food, her grandparents, aunties, uncles, her daddy and our dog. She loves meeting new people, loves daycare. She is cheeky, loud, and her smile lights up every room. She is an inspiration. She is loved by so many and we are all so, so lucky that Elsie came into our lives.

I encourage anyone who may be facing a similar journey to seek help from whomever, whenever you need it. Advocate for yourself and your baby when you are feeling strong enough. It has taken us this long to bring together a team who we believe are the right people to surround Elsie with the encouragement and positivity that she needs and deserves. I would be more than happy to chat with any parents if they need support throughout their prem journey or with a recent diagnosis. We’re still learning ourselves, and have gained many helpful insights from other parents who have walked this path before us.

Elsie – we do with you, we do for you, and we do because of you. Always ❤️