Little Fighter

20th October - Harley pulled ventilation tube out this afternoon so now back on CPAP (tube up nose), needing lots of oxygen though so most likely be back to being ventilated tomorrow :( although mummy hoping to get a quick cuddle tonight :) before that happens. We were told yesterday that Harley has chronic lung disease from being born so prematurely, he may well grow out of this or it could be something that causes long term problems and there's a whole range of complications that can arise through this, which is why he is constantly on and off the ventilator, unfortunately the more times he goes back on it the harder it is to get him off it. (Ventilator does all his breathing for him, CPAP just helps to inflate his lungs but he has to breathe for himself) and he's becoming more and more reliant on the ventilator :( He needs to grow so that his lungs grow which should help with his breathing but he's not gaining weight/growing very well because due to his bowel problems he only absorbs a tiny amount of milk, and until his bowels get bigger he won't be able to absorb enough milk to grow so that his lungs grow.....so a catch 22 situation :( although he now weighs 1lb 14oz he will in theory be 29 weeks tomorrow and would have been bigger than this :( Highly likely he will be in hospital for many weeks to come, certainly until his due date (6th Jan) at least but possibly for even longer and will probably still be on oxygen when he does come home, possibility he may finish his care at Kings Mill but will not be transferred until operation has been done to reconnect bowel and this can't be done until he's at least 36 weeks and a lot bigger.