Been slack on updating, again, Im sorry! Home for Christmas but not allowed to go and see Harley because all visiting is stopped for "flu season" ( I wanted a cuddle! I saw Georgia (Harley's mama) on Friday night, she is so brave. Harley had an operation on his bowel on Friday, he's recovering well but still on a ventilator Bit of a drama at lunchtime when Harley stopped breathing and had to be resuscitated again :( but all well now. Had his eyes tested again and all is fine, no retina detachment (which is a common problem in babies this premature. Weighs 5lb 14oz (yesterday) that's a weight gain of 2oz in 24 hours which I think is bloody marvellous but they are now weighing him everyday as they think he's gaining too much weight, sigh!

I am so incredibly proud of these two. I've not been updating, Harleys been so up and down, but he's on the mend now. Won't be home for christmas, but he's a little miracle.

Okay, all posts moved to this blog now, put the dates up to avoid confusion.

27th October - Harley is doing FABULOUS :) He's still on CPAP not ventilator but is also allowed up to 60 mins twice daily off the CPAP - this means its all disconnected and he just has a nasal canula which are two tiny tubes up his nose to give him small amount of oxygen, he has to breathe all by himself and he's doing really well on this :) But best of all when he's on the nasal canula it means that he has nothing covering his face and has no hat on. He has now also been promoted to wearing a babygrow - he is THE most ADORABLE little soldier :)) They've said that he appears to 'have turned a corner' so fingers crossed no more backward steps. When he is on CPAP he needs approx 40% or less oxygen which is brilliant news :) New pictures of Harley, without his little hat, look at that hair, and his chubby cheeks!

23rd October - Still off ventilator - whoop whoop - that's 4 days now :) Has progressed to wearing a vest AND scratch mitts - how cute????? Weighed again today and has gained ANOTHER half an ounce :) Brain scan on wednesday showed some bleeding/bruising in his head but NOT in his brain tissue so that's pretty positive news :) Not needed blood for 2 days so even more positive news :) Just fingers crossed he's moving forwards..........prayers for no relapses please :)

22nd October - Harley still on CPAP - woo hoo :) Has managed to avoid ventilator for 3 days now so fingers crossed this continues. Mummy cuddles are helping and she's getting 3 cuddles a day at present much to the reluctance of the staff,she's refusing to leave him at present :) Think they wish they hadn't told her she could have him out 'up to 3 times a day'. I never doubted she'd be a brilliant mummy but even I'm amazed at how totally and utterly devoted she is. BIG NEWS for today is that Harley gained 110grams in 2 days and now weighs..........(wait for it)..........drum roll.....................2 lb 2oz

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.