jamie bn at 24wks now 29 days old - more added

hi all,

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.

i am so sad for you. you are very strong. it must be hard on all of you to see your son in this situation, but i know that you all will make decisions in his best interest. my prayers for wisdom, guidance and understanding go out to you at this time.

i am so sorry you are having to go through this.  i am   for you and your family.

I can't imagine what you are going through -- I am so sorry.  I'm sure you are physically, emotionally and mentally drained.  I pray for peace for you and your family.  Hang in there.

I am so sorry . It is decision making no parent should have to make.

I really understand the decision to consider "quality of life" rather that just keeping him alive at all costs. You are very brave. I wish you peace in your decision. 

I am so sorry about this. It must be very heartbreaking and itis perfectly natural that there is strong tension between you and dh. It is very hard to be on the same page when so much is at steak. I hope that all turns out in the best way possible. I am rooting for little Jamie, he seems a fighter, we have to give him that.

We are all praying for you, for guidance, and a peaceful, no regret decision, and lots lots of Help from God.

Big Hugs,

 Oh Amy, I am so sorry!!  I am praying for the same things as everyone else:  Harmony in your family, wisdom, and a peace about your decision.  Most of all, I am praying for miracles!  Jamie has been such a fighter...he deserves strong lungs!  

Listen, my friend's baby (a boy, little David) was born at 24 weeks.  He had all sorts of problems and was in the hospital for 3 months.  It was horrible, and I cringe at thinking of anyone going through what they (and you) are going through.   Long story short, he is now a normal, healthy little boy, although mum was told he would have brain damage, etc.  So there's hope!  I am praying for that miracle!! 

I really am so sorry for you and jamie and your family are still in my thoughts and prayers!!

I am so sorry.  Praying for you and your family.  Hope baby Jamie can make it through.  ( ( ( hugs ) ) )

I'm so sorry you are having to go through this. I really hope it all works out well.

I just wanted to let you know that you are not alone.  We are all thinking of you and praying for you and Jamie.  Your whole family is in my thoughts and prayers and I am sending you comfort.  Please take good care of yourself.   

I will continue to for little jaime and your family....You have on little fighter there