I know its been a while since I updated you all on whats been happening with Jamie, if you dont remember he was born at 24wks after my waters broke and we were flown to a hosp 6hrs from home leaving our three boys with my inlaws. Jamie had a very hard time at the start and we were told after a week he wouldnt survive another 24 hrs. He did and last I posted we were having real struggles with the outcome for jamie if he were to survive and his quality of life. We asked the doctors to withdraw treatment and went through a whole week of horrible stuff, came to the point they didnt feel they could as there was a  hope he would come out ok then we decided we just couldnt give up on him. So he was 7 weeks yesterday. We were flown on tues to a hosp only 2hrs from home, Since overcoming all his earlier problems we are now faced with jamie having severe chronic lung disease. He's still ventilated and his lungs are in very poor condition. They tried steroids 2 weeks ago, 90% of babies they work for and usually help them so much the baby can breath unaided except foe a machine (cpap) which just keeps the lungs open partially when they exhale ( less effort to breath) - all this compared to the vent which is breathing for him. Well the steroids didnt work. We left all the wonderful doctors and nurses and have come to a new hosp. His first night all went to custard with him being on 100% oxy, lungs colapsing,on insulin for high sugars, and his pressures on vent up to 36. vents keep them alive but they do damage. doc was straight he has an infect and if he stayed on those pressures his lungs wouldnt last more than 2 weeks. Pressures have now been turned down which is better but his lungs are full of scar tissue and holes that only time and growing could possibly fix. There now at the stage they cant give him more oxy, he's at max limits. his lungs are crappy and they today started another course of steroids, if they dont work to bring down his oxygen req it means his lungs arnt getting any better and they most likely wont,  In that a machine is the only thing keeping him alive, and if he cant live without it he cant function.  He is so perfect, is growing and has big eyes which look at you and open when we talk. He holds our fingers and has a personality. The nurses at both hospitals are in awe of his cuteness. Its hard to think that such a perfect looking boy has lungs that just may mean he cant survive and they may say soon we can do no more for your son. I see that he may die soon and its a very real possibility but i'm emotionally disconnected from it. Weve had a horiffic 2 months and I dont want to go to the place of emotional melt down until its the end. And so I can say this week if the steroids dont work the doctors will probably say we need to talk, I can say it without tears but to really think about it as real would break me. I am defending my emotions with all I can because I went down when they said he would die last time and it took so much to get back up, so I will stay strong until I can no longer. I think in my heart he wont be around much longer but feel so very blessed with having had the time to know him as my son and a real little person.  It feels to hard to have hope that he may pull through this only to have further to fall by being so optimistic, I guess now its all up to him and we can as we have only wait and see what the next day will bring.

Amy

Hi Amy,

I have been thinking about you all and wondering when we were going to get another update! Im sorry to hear his lungs are still not doing what they should but your little fighter has come this far - he might just surprise you and get through this. Will keep praying for you all

Hi Amy.  I had my ER today in Hamilton.  We stayed last nigt.  I went to the hospital to c you. Obviously you had flown out.  Thankyou for the update.  It must be excruciatingly hard for you to let us all know what is going on.  I am glad that Jamie is perfect.  But then he would be. My thoughts are with you and Jamie all the time.  I wish Jamie, you, and your family peace.

I have been thinking about you and baby Jamie. Thank you for updating all of us. You are in my thoughts and prayers. Jamie is a fighter and might just pull through this.

Wishing Jamie, you and your family all the strength you need.  Thinking of you and praying for you

Stay strong, we're all thinking of you and your family.

 You, your family and you little soldier are in our prayers , 

Alice 

Hi Ami, I just wanted to let you know that my hearts and prayers are with you and your little fighter will pull throug this. He's a tough little guy and has beat the odds already! Don't give up. I know it's a hard know but you have had so many things go right for you, to give up now would be a horrible dedcision that I don't think any of you would deal with easily. Continue to fight, we all know Jamie is. He's a strong little guy and he's going to be OK.

I'm still praying for you, Jamie, and your family.

I too have been praying for little Jamie. His IG Aunties are pulling for him. HHHUUUUGGGGSSS to you and this time. Just enjoy every moment of him. Take lots of photos. And kisss him for all of us.

You are so strong to be going through this with your positive attitude.  Jaime sounds like a beautiful little guy.  I'm praying his lungs heal and he pulls through...yet again.  Take care.

What a brave person you are, you are exactly what your little boy needs right now--you and your family are absolute beautiful souls and I am keeping you in my prayers.  Thank you so much for updating us.

Your family is in my thoughts and prayers.  Thanks for keeping us updated. 

Jamie is an inspiration to us all.  Our hearts break for you and for your family; I hope that there is happiness right around the corner, and a swift recovery for your perfect little son.

I mostly lurk, but I've been following Jamie's story and wanted to send out my P & PT to you, your family, and your baby boy.  He is quite an inspiration-- what a fighter.  I hope that he continues to prove the doctors wrong and to make a full recovery.  Best wishes to you.