Talofa Lava,

I wanted to share my baby’s journey with you all with hope this may inspire someone who is currently going through NICU🤍

Genesis was born at Middlemore Hospital in Auckland on the 20th May 2021

Weighing: 780grams

Expected due date: 06 September 2021

Picture of Genesis when she was born (on the ventilator)

Our entire journey with NICU/SCBU Middlemore and NICU (Surgical) Auckland was a total of 126 Days.

Genesis was born early due to mum getting Acute Chorioamnionitis, VIA emergency C-Section, an infection that gets into the amniotic fluid. Long story short she wanted to get out as she was not having a fun time on the inside.

Genesis is our first baby, so having an NICU experience for our first was very scary. Getting wheeled down in your hospital bed to see your baby in their Giraffe attached to several beeping machines was surreal.  Focussing on Genesis I didn’t realise that place was going to be home for the next couple of months. Getting stuck in to produce breast milk for her was now a priority, being at the pump gave me something to do and concentrate on rather than being sad or angry at myself for putting my baby through this, was I being selfish in holding on?

From the days on the ventilator in a tent, to weeks upon weeks on CPAP, to being asked if we wanted to do her cares and thinking to myself “are these nurses serious? I could break her” to preparing her feeds, and then finally being told you can hold and have skin to skin which is all that helps you get through your day.  That small amount of time during the day you get to hold your baby and of course, pump, pump, pump, pump.

Genesis on CPAP

Genesis was going from strength to strength until she was about a month old, she developed an abdominal distension.  An X-ray was done, and a portion of her bowel had twisted upon itself creating a small bowel volvulus. We were transferred to Starship and she had a laparotomy done that night to fix the bowel. 50cms of her bowel was removed due to it being dead. We then spent 4 weeks at NICU Auckland under the surgical team until she was healed up and ready to head back to Middlemore.  Because Genesis was on CPAP at the time this happened for surgery she needed to be intubated, bearing in mind she is now a little bigger with a little bit of an attitude she hated the ventilator.  She was extubated to high flow but failed so was reintubated for another day then extubated again to CPAP and did well, she did so well, that a week after being on CPAP she started pulling her CPAP off, so they trialled her off CPAP to low flow, so she went back to Middlemore pretty much breathing on her own and all healed up.

A week after we settled in at our old home in NICU Middlemore they decided she was doing so well we would head over to SCBU to get our feeding right and weight up. Her surgery had caused malabsorption problems, so we were on extra vitamins to help and we were fortifying breast milk with Aptamil Pepti Junior.

A few weeks after her due date Genesis was ready to come home on the 24th of September 2021, fully breastfed and at 3.8kgs. I was naive in thinking going home would make everything easier. No monitors no nurses no doctors, it was finally our time to be a family, but it wasn’t that easy.

Initial treatment of spasms: unhappy at everything

Countless nurse visits, dietitian follow ups and hospital appointments were on now and we had an appointment with a physiotherapist late January 2022.  I mentioned to her a specific movement Genesis was doing from time to time and while we were at the appointment, she did it and the physio saw and said it looks like Infantile Spasms.

As a first-time mum, seizures is the last thing anyone wants to hear but it turned out she was having little spasms so we went back to Middlemore hospital and was then transferred to Starship for an EEG and Infantile Spasms was diagnosed so treatment started straight away.  A course of steroids and anti-seizure medicine had started for my baby.

This time around was a lot harder for us as parents to go back to the one place we longed to leave but it was the one place that would make her better.  We went to Starship neurology ward for a week and since then (knock on wood) we haven’t seen any spasms since.

Our journey in NICU was at times very hard, not being able to hold your baby for so long and leaving them in the hands of others while you went home every night is just the most unnatural thing I have ever had to experience in my life. That’s where The Neonatal Trust and other support staff in the NICU helped.  There are parent get togethers every week, they give you little welcome packs and a lot of bits and bobs along the way that make the journey that little bit more bearable.

Spasms treatment caused significant weight gain

Genesis is now 11 months old – 7 months corrected and is turning 1 next month.  At the moment because she was an extreme prem she was delayed in developing but then the infantile spasms occurred which have caused even more of a delay so we’re on the delay of the delay! LOL!  Genesis can’t sit unaided, she cannot crawl, she isn’t as strong as other 11 month babies or even a 7 month. BUT she is the happiest she’s ever been.  She talks and talks and talks and loves her naps she loves to listen to her dad play his piano and enjoys listening to her grandparents and aunties sing during nighttime prayers.  She is absolutely loved and blessed beyond measure.

You learn that your child is more than milestones you learn from NICU that you’re blessed to even have a child breathing on their own or eating on their own, things most children don’t think twice about and that in itself is a WIN, just being alive 🥺🥰

To GOD be the glory with how far Genesis has come.  We faced a mighty giant and won; I won’t ever take that for granted.

Thank you to NICU/SCBU Middlemore, thank you NICU Auckland, Starship and the team at The Neonatal Trust for all that you do for our little fighters!

Genesis: The beginning 🤍

***** Thanks so much for sharing *****

We get a lot of positive feedback from families in a neonatal unit who read these stories and feel strength, hope and positivity knowing that they are not alone going through these experiences and feeling certain emotions.

If you would like to discuss sharing the story of your neonatal journey, we’d love to hear from you. Please email info@neonataltrust.org.nz 

If you want to help our support of families going through the stress and anxiety of a neonatal journey, you can donate here.

  • The Neonatal Trust provides support to families of premature or sick full-term babies as they make their journey through Neonatal Intensive Care, the transition home, and onwards. We do not receive any Government funding and are entirely reliant on the generosity of individuals, companies and organisations in the form of donations, value-in-kind donations, grants, sponsorship and fundraising events to supplement operating costs and fund our services and initiatives.
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