Our names are Maria and Alex and this our beautiful miracle boy Oliver.
Oliver was born at 32 weeks in May 2021, after a complex pregnancy. Little did my husband Alex and I know that our NICU stay would be an extensive one. When Oliver was born he required breathing support due to a trauma during birth. At 8 weeks old Oliver was diagnosed with Interstitial Lung Disease (chILD) which is an umbrella term for rare children's lung disease. He was on full time CPAP and oxygen support. It was difficult getting information about what to expect in the future as the specialists didn't know and google was deep dark rabbit hole.
After many blood tests, extensive genetic testing, sweat test, CT scan, bronchoscopy and a lung biopsy there were still no answers.
As Oliver grew and began moving around he became more aware of his sterile environment. Because he was on the ventilator CPAP he couldn't be moved to PICU or SCN and was left in the NICU where not all nurses and specialists where able to support his growing requirements. It was very difficult finding the things he required online and when we did they weren't exactly the nicest nor affordable.
After 5 months on CPAP ventilator he was finally able to transition to High Flow and after 6 months (184 days) in the NICU we were provided the tools and equipment to take him home. Hospital in the home has had it's challenges but there is nothing greater than finally having him home.
Oliver is currently fully feeding orally but is struggling with solids due to his oral aversion and coordination of swallow/breathing with his high flow pressure. He is on high flow pressure 12 full timed is currently doing 30-40 minutes a day of 'free face' time and work closely with all his specialists to work towards achieving developmental goals.
I'm working towards providing families a place to purchase the best products available to help through the early days of having a baby, either in the hospital or at home or with complex care needs. We learnt a lot from our experiences and the importance of early intervention. We are working on becoming NDIS providers and stockists of therapy tools and equipment for children.
We regularly post about Oliver's progress and updates, you can follow him @theveryhungryoliver