Ava was born lifeless after a perfect pregnancy, she started having seizures within minutes of birth, so was sent for whole body cooling. An MRI on day 5 of life revealed widespread damage to the whole of Ava's brain, Ava was not responding to medication and remained without any reflexes. We made the heartbreaking decision to switch off Ava's life support and prepared her big sister for an angel baby.
However by some miracle Ava grew stronger and after 5 weeks came home. Ava is completely fed via a gastrostomy (a tube into her tummy), she is visually impaired but her vision has come on leaps and bounds, she is non verbal, non mobile, but getting very clever at trying new things, despite suffering from seizures still.
Ava still suffers from reflux despite having surgery to stop her being sick (fundoplication) and due to being so small for her age she is prone to lots of chest infections.
Who knows what will happen in the future, we don't try to think that far ahead. But we are totally blessed and privileged to have such a cute and determined little girl.