Hi there,

My DD was a NICU/SCN bub too, but not prem, so have never really felt comfortable venturing into that thread! My DD Isabella (she mostly goes by Ella though ) is 2 and a half (3 in July). She was in NICU/SCN for 3 months, then over to the Childrens Hossy and PICU for 3 months as we got too old for the mothers hossy! She had/has a lot going on medically, unfortunately at this stage no diagnosis other than 'Global Developmental Delay' or 'Sh*t Luck' as our cardiologist puts it!

Her story is really long, so will give you the general gist of things lol. She was born at 37wks (induced then emergency c sect), only weighed 4lb 9oz. at 2 days old transferred to NICU at the Mater as not feeding, holding temp, crying etc....was diagnosed with NEC (necrotising enterocolitis) and taken straight to theatre, had a stoma (illeostomy) created and we basically were told we would lose her. Had the usual NICU things happen for 3 weeks or so, as she proved them wrong and pulled through. Extubated and in headbox o2, then on nasal prongs so we got to go to SCN. During the next few months she had open heart surgery to repair ASD and VSD and close PDA, another bowel op that had most of her large bowel removed and a colostomy bag formed (which she still has), she was on TPN feeds until 5mths old, then on NG feeds which she came home on til about 10mths old. On continious o2 untill 2yrs old, and is still on it of a night time....she has trachea laringo malasa (basicaly floppy larynx, which adds to breathing difficulites), a paralysed left vocal cord and chronic neonatal lung disease.

there is so much stuff i have left out, but didn't want to bore you with a novel!! This is such a great thread to start, look forward to chatting to other mums/dads of special needs kids

Louise