As told by mum Emily
My name is Emily and this is the story of how our son Vinnie was born full term (four days overdue in fact) and required NICU support.
My pregnancy with Vinnie was uncomplicated. I had all the testing you can opt for and opted to have my lead maternity carer as an obstetrician for extra peace of mind and routine scans, which came back normal.
I went into labour at 40+4 and was so excited to finally meet our baby. His birth was a little testing but uncomplicated, and we were transferred to the post-natal ward with a view to ultimately sending us home once Vinnie had passed all his newborn testing and I was cleared to go home. This is really where our story begins.
Over the next 48 hours my husband and I observed Vinnie began displaying some concerning symptoms that both our guts said weren’t right. We raised these concerns, but it can be so tricky to distinguish between normal newborn behaviour and something more sinister, and so we were told to just keep an eye and it was likely nothing to be concerned about.
That feeling in our guts never quite left and when Vinnie was 48 hours old we escalated our concerns as we felt his symptoms had gone beyond the point of being explained as normal newborn behaviour. It turns out that parents intuition is a real thing (even at 48 hours in) and immediately the urgency of the situation kicked into gear and NICU doctors appeared to assess him. They explained Vinnie needed to be transferred to the NICU while they figured out what was going wrong and give him some relief from the symptoms he was experiencing.
All of this came as a huge shock to us both as we had no expectation of needing NICU support, and honestly thought that it was only for babies born premature. The transfer also coincided with a big hormone shift post-partum for me which was an additional challenge. Initially I felt too overwhelmed to accompany him on his transfer to NICU and so my husband went with him while I took a couple of deep breaths and followed shortly after. Nothing can prepare you for seeing the baby you made and love so much hooked up to a million monitors, tubes, and IVs with a bunch of people surrounding him working on him. As his parents we felt helpless.
It was a challenging few days while doctors consulted about what they thought was wrong, and Vinnie was sent for testing as they narrowed in on his diagnosis. The testing itself was quite intense, and it seemed so unfathomable how a little body could endure so much!
At this stage I was still admitted and found it incredibly tough to return to the ward for some rest or check-ups I needed and listen to the crying babies all around us without my own.
Then I had to process being discharged and have no option but to leave Vinnie each evening to return home. I wanted to establish breastfeeding so badly and the reality for us was a lot of pumping and attempting to latch Vinnie when I was with him during the day, but he was also so tired from all he was enduring. To this day I would say one of the hardest things ever was the first night we had to leave him at the hospital and go home. A lot of people will tell you to take advantage of this time to rest yourself while your baby gets the best care possible, and while that is true, it is also very gut wrenching. However, the nurses were incredible and did everything they could to make us comfortable, keep us informed and also advocate for us. I would ring up overnight every time I woke up to pump and they would tell me all about what our little guy had been up to. During that time I was also supported by a NICU lactation consultant to help with breastfeeding which was wonderful.
Finally we received a diagnosis, about 3 days after Vinnie was admitted to the NICU. Our guy was born with a disease we had never heard of, that required surgery to correct. The surgeons first wanted to see him grow and put some weight on to be in the best possible position for that surgery. This came as a real shock to us but also it was comforting to finally have answers and be able to process what this meant for Vinnie long term. This also meant that we had to be taught how to perform some procedures on Vinnie that would be required twice daily until the surgery (at that stage we were given a rough timeline of when he was 12-16 weeks). The NICU team, along with the paediatric surgeons showed us how to perform the procedures and supplied us with all the equipment to do that.
Once we had the technique down it was time to room in at NICU for a night which we were so excited about, as it meant the end of leaving him every evening! It was also super nerve wrecking as we knew the constant monitoring and support from the nurses/nurse practitioners and doctors at the NICU was coming to an end, despite us still not being out of the woods with our guy.
Then finally came discharge from NICU day. This was bittersweet as we had all really bonded with the wonderful NICU staff, and had developed a sense of security in knowing they were right there if we needed them. We ended up being provided with a community nurse who was part of the NICU team, and we would bring Vinnie back regularly to be checked by them.
Overall our experience of the NICU was a challenging time for us all. It came totally out of the blue and totally reframed what we expected of our newborn experience. Having said all of that though the staff are all so wonderful and go the extra mile to connect you as much as they can to your baby and support you to do the “normal” newborn things.
Today, our little guy is about to turn 2. He ultimately had two surgeries at 9 and 16 weeks old respectively and is doing so well post both of those and meeting all his expected milestones. We are forever grateful to the wonderful staff (including the paediatric surgeons) that work in and support the NICU in Wellington Hospital – you saved our taonga.
Thanks so much for sharing your personal story.
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@littlemiraclestrust.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 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
