days are so long when all you do is sit by an incubator holding your baby but he was 4 wks old yesterday and that times passed in a blur.
I think last time I posted he was recovering from his pda surgery. Well he did well with that, his perferated gut (bowel) may?? have self healded and hes now on 9mls of milk 2hrly, he weighs c930g and still looks so perfect. But his lungs are very damaged. He has severe cronic lung disease and the ventilator is working hard and at higher levels than is ideal, they keep him alive but in turn can cause more damage.
We've been havin many emotional discussions with the doctors about jamies prognosis and expected quality of life, as a 24 weeker the odds are you end up with variations of dissabilities, throw his lungs and the other setbacks on top and it doesnt look so flash. All the way through this I've asked for them to stop and just leave him be but theve continued. Now their wondering wether it was right or not, puts us all in a horrible traumatising situation, The odds for brain damage or cerabal palsey are there with numerous other outcomes, The impact of this on jamie let alone myself, our marriage and our 3 other young boys I think would be devastating. Its been a shattering couple of days with scott and I on seperate pages in terms of what to do, how do you decide wether your child should live or die. Many of you may not understand this and I tell you its heartbraking, I woulndt ever wish it on a soul.
At the moment were waiting to see where his lungs will take him as currently it seems their deteriorating rather than improving, Machines keep him breathing and it may just well be that soon his lungs may show that his little body really may have had enough
- 24/7 I cant do it as his mother. No matter how daunting the prospect of his outcome I cannot bear the weight on my shoulders of feeling I've taken his life away. Its now in the hands of the doctors, thev'e asked for a meeting for tomorrow morning and any decisions to be made will all be medically guided by them.