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Nova-Lee's Story

Updated: May 27, 2023


In Loving Memory of Nova-Lee Anne Gibson


This is Nova-Lee's short story.


It's was mid 2020 when we found out we were pregnant. Baby number 3 on the way.

I was pretty sick but continued along with life, knowing in Feb 2021 we'd have a newborn in the house.


At our 20 week scan the sonographer had a bit of trouble picking up a part of our baby girls heart (we had an early gender scan at 15 weeks). Suggested we rescan but didn't stress to us the importance, so we brushed it off with the everything will be fine mindset.

Fast forward to 3am on the 28th of November, my waters spontaneously ruptured, I was 29+4 along. I drove my self to the Townsville hospital, Neil (hubby) stayed home with the kids until he was needed. Baby's heart beat kept dipping so I was prepared for an emergency c-section, thankfully little miss settled. 9am that same day I had an ultrasound, the tech said her heart wasn't good. The high risk doctor, scanned me again, where he informed me that the outcome doesn't look good.


I was kept in hospital until birth, if we had of known about our baby's heart earlier, I would have been transferred to Brisbane for delivery.


Skipping along a few days to Thursday the 3rd of December 2020, things started ramping up and at 4am Nova was born. With daddy and a room of doctors by our side. She was born 30+1 with face presentation, a little bruised, but cute as a button.


Nova (just Nova at this stage) was taken to NICU, the call was made and Royal Flying Doctor Service (RFDS) was organised to transfer us to Mater Mothers in Brisbane.


At 5 hours old we were off. Nova was settled in to NICU, me on the ward, I mean I just had a baby. (I was later given space at Ronald McDonald House South Brisbane). The cardiologist saw Nova also for an echocardiogram. Friday the 4th I'll remember it forever, I had a meeting with the cardiologists and social workers, explaining our future. This was also the day I had to tell my husband, over the phone, the outcome.


Nova-Lee was incompatible with life. Her heart was just too broken. She was also just so small.

Nova-Lee had an unbalanced Atrioventricular Septal Defects (AVSD), hypoplastic left heart syndrome, coarctation of the aorta and a leaky valve. Prostin medication was keeping her duct open, keeping her alive.


We organised baby sitters and flights and by midnight daddy was at our side in Brisbane.


We spent a week in Brisbane, more echo's, meetings with cardiologists, social workers and also palliative care (comfort care). We spent all the time we could bed side.


A decision no parent should have to make, we decided to return to Townsville on comfort care.

Allowing us to be with family and friends, to allow Loretta and Corey to meet their new baby sister. Grandparents, aunty's and uncle's got cuddles too.


December 19th, it was a Saturday. We took the kids and a photo of Nova-Lee to have a family Santa photo. We then visited Nova after, where we noticed she was little off. We had a family photo in our Christmas things, Loretta had cuddles. Nova's stat's started dropping. Her colour was changing that afternoon. We took the kids home to my mum, step dad and my sister (who happens to share her birthday with Nova), we headed back to the hospital. Nova-Lee's Cpap was on so tight she was squashed. Her feet weren't pink any more, she was struggling.


I was having a cuddle while nurses fluffed around us. We realised this was Nova-Lee's story and she was telling us it was time. The prostin was stopped, leads and tubes removed, we got to see our beautiful girl free. We moved to the butterfly room, where Nova was placed on my chest, with dad next to us. Taking in every last moment. From memory Nova-Lee lived for 3 hours, at 10:50pm I felt her heart stop. I'll never forget it. Neil had fallen asleep and I had to wake him to tell him she had gone. Nova-Lee was pronounced gone at 11:30pm.


One thing I regret is not staying with her longer while she was still warm. We eventually took her back to her room and gave her one last kiss. We went home for sleep before having to tell our kids and family and friends that she had grown her wings.


Loretta and I visited Nova at the hospital mortuary a couple of days later, that was heart wrenching. I also spent 3 hours with Nova at the funeral home. I wrapped her in a beautiful wrap, talked to her, played her songs. I wish I could go back and spend more time with her.


We had a beautiful send off for Nova-Lee, in Townsville with our nearest and dearest.


It was a beautiful 16 days and its been a hard 16 months, but we are still here doing our best.


We speak of Nova-Lee Anne ALOT.

We love her and miss her oh so much.

She's our little heart angel.


Mum, Dad, Loretta and Corey x



Jodie Gibson

Australia

Submitted 08/04/2022

Facebook: Nova's Special Heart

Instagram: Nova-Lee's heart story


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