I met another pregnant ARPKD mom, Andrea, on facebook and sent a message to a new one today who I know has already connected with Andrea and Michele Karl. Neither of these pregnant moms has been given any hope, which I don't understand. How can my doctors be so hopeful for Ellie's lungs being formed having had fluid for so long at 28 weeks yet Andrea has been told even with 2cm left at 34 weeks, there is no hope. Are my doctor's wrong? I look at Stephen Schwartz and I'm inclined in think there is hope for Ellie but now I begin to doubt what is said.I know there will be some underdevelopment but I want them to fit for Ellie, ventilators and all until such a point as it wouldn't work. I won't let her just die and I know the doctors at the RVI won't either. I have been told by four doctors, her lung measurements seem normal/not out of the ordinary and so, while the fluid isn't there to develop the insides of her lungs, the main content, size, and formation is there. Is it the other doctors who are wrong or mine? I'm praying that it is the other ones.
Went to an Ann Summers party on Friday night, that was a bit crazy! Ordered a new bra set for aftermEllie arrives, and bought Lee a t-shirt. Then last night, my friend, Rachael! Cooked for Gail and I and it was lush (and healthy woo!) so that got me out for a bit. I am at the psychologist's tomorrow at 1 so I'm sure it will be helpful.
I feel like thenhope I have raised is depleting. The people I have met on the yahoongroup are so supportive and keep getting in touch to offer hope. It's just, which doctors are right? Maybe they are giving us false hope at the RVI.
Naomi, Hon I think the doctors here in the states "ALWAYS" give the worse case scenario so they cover their butts!! Your note's to Annie give her hope, for this I wanted to THANK YOU so don't lets these doctors over here get you down, your right look at Stephen. There is always hope thur prayer. Andrea is married to my son Dan. Just so you know who is writing to you. From your blog you seem very well in formed. Positive thinking and prayers go a very long way. So keep your chin up! You are in our prays.
ReplyDeleteThank you for taking the time to stop by. I know Lindsey was given no hope for Stephen and he is doing so well, and I know how Andrea feels, despite the fact we are given more hope. I truly believe it's the doctors lack of understanding as I've said in my post today but there is definately hope for Faith, her story is not as bad as some that i've read and those children survived. It never stops you hurting though. All we can do is keep praying.
ReplyDeleteI don't think it's a case of one doctor being "wrong" exactly, but it seems like some doctors are more willing to express that there IS a chance, while others want to make sure the parents are definitely prepared for the worst, if that makes sense? If they tell someone there is no hope, then by trying to help them they've already done the best they possibly could, even if the baby doesn't end up surviving. Hmm, sorry, that's all a bit confusing. It sounded better inside my head...
ReplyDelete