Cherishing Every Moment: A Dad’s NICU Journey
Jay was our first baby and we found out something was wrong with him very early in the pregnancy when we were told he was measuring 3 weeks behind at the anatomy scan at 21 weeks. The rest of the pregnancy was hell after finding out how serious that was for a baby’s development. Even though we were given appointments by specialists, no one ever really took on our concerns fully and too often tried to tell us that everything could be okay (we would find out much later he had a rare genetic condition with a low birth survival rate).
The emergency c-section was also traumatic for us, but as soon as our son was born he was taken to NICU. We finally felt our family was in a safe space with NICU, surrounded by medical professionals 24/7 who were empathetic and really tailored their care to our family needs.
Of course, all families want to be home with their newborns, but we knew there was no better place for Jay than NICU due to his medical needs. My partner Sarah early on shared with me the concept of ‘radical acceptance’. Which for us meant immediately coming to terms with the fact that our baby boy needed full-time medical supervision and that NICU was the best place for him. We embraced NICU as his home and brought toys, mementos and books to keep with him and make his space his own.
Sarah loved late nights with him and I loved early mornings, so we leaned into that, allowing us to take turns in getting rest and trying to have one parent with him as much as possible. There is a parental instinct to never leave the baby’s side but when in NICU unfortunately parents do need to leave for periods to rest and recharge for the next day. We so appreciate those nurses and doctors on the night shifts so dutifully watching over Jay while we slept and calling us if there were any concerns.
During the pregnancy and as soon as Jay was born we unfortunately had seen lots of evidence that his life was destined to be a short one. Radical acceptance and the NICU staff allowed us to make the most of our time with him. After a few weeks Jay moved into palliative care and at 6 weeks old Jay passed away in my arms in NICU.
The NICU staff helped us prepare for this day and make the most of everyday with him. We’re so grateful for that as we may not have half the memories we do with our son if it weren’t for the NICU staff and their beautiful ideas. Thank you so much to the Little Miracles Trust for their kindness and support during our NICU journey.
Andrew and his family continue to honour Jay’s memory and share his journey. You can learn more about Jay and the impact he continues to have through Jay Mac’s Journey.
Thanks so much for sharing your personal story.
We hear from many families in neonatal units who find comfort in reading the stories of others who have walked a similar path. Knowing they’re not alone, and seeing the different ways families navigate their neonatal journey, can bring a sense of connection, understanding and reassurance — even during the most difficult times.
If you would like to share your neonatal journey, we’d be honoured to hear your story and help you share it in whatever way feels right for you.
Email us info@lmt.org.nz
Support Us
If you want to help our support of families going through the stress and anxiety of a neonatal journey, you can donate via the link below.
- The Little Miracles 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.
- As we are a registered charity (CC56619) with Charities Services New Zealand we will send you an IRD compliant tax receipt – this will happen automatically by return email.