"Connor was up here with us for a bit but had to go back to work as we were getting behind in rent and everything. It's sad as we physically can't afford to have him up here with us but we want to be together through this tough time."
To make life even tougher for the couple their 1-year-old daughter Mila-Michaila also has a heart condition.
She was living in Auckland with Ms Rahui and wasn't due to have another operation until she was 4-years-old if everything went well.
The family were unlikely to be home for Christmas and depending on how Carlo's operation goes it could still be a few months before they were back home in Napier.
When they make it home, the couple hope to install a heat pump with a dehumidifier in Carlo's room so he can be living and sleeping in a warm and dry room.
"Our home is old and cold and in the summer. We can warm it up with the sun but during the winter we will need something to make it better for him so he can stay warm and not get any sicker."
Recently Carlo had a cardiac arrest, which meant he was back on the highest form of care at Starship. However since then Ms Rahui said he hadn't had any other major issues and hoped this would continue.
"It's scary as we just don't know what's going to happen but Carlo and Mila are our two little heart warriors and they are fighters that's for sure."
To help support the couple and make their life a little bit easier people can donate to their Givealittle page at: givealittle.co.nz/profile/individual/carloheartwarrior.