Hi everyone,
Our wee boy (Max) was born at 24 weeks gestation and is now 9 weeks old. He has undergone two surgeries (one for NEC when he was about 8 days old) and one to ligate his PDA after drugs didn't close it), has had a pulmonary haemorrage, several infections and lots of small ups and downs.

Our big issue, and the continuing one, is his breathing. He is still on the ventilator, having had two attempts at extubation which didn't really last too long.

Does anyone else out there have a story of an extreme prem who was on the ventilator a long time? Most others I read about are later-borns (ie 28 weeks +) who seem to have no real trouble getting onto (and off) CPAP.

We hope to try for CPAP again in the next ten days, but still struggle from day to day, hoping he simply stays alive. I have never experienced anything as hard as the last 9 weeks - and we spent 2.5 years on IVF just getting pregnant in the first place (and he was our last-ditch attempt!).

Any thoughts, advice, or similar stories on any of the above issues would be appreciated.

BTW - our NICU (Flinders Medical Centre) is extraordinary - they are a brilliant team and are incredibly supportive. Sad to read of stories of NICUs that are less than satisfactory. Having a knowlegdable team who really work with the three of us as a set is so wonderful.

Thanks,
Kate