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Re : Don't know where to go from here

Post by amanda » Wed Jul 08, 2009 09:35 am

Hi...I just wanted to follow up. I too have lupus - please let your wife know that she can contact me anytime - I'll be happy to share with her my story and what my doctors did to help out - I don't know if it will help but I just wanted to offer.

Again, I am so sorry.

Re : Don't know where to go from here

Post by engdad » Tue Jul 07, 2009 11:31 am

Edited post for privacy. Thanks all for your replies.

Re : Don't know where to go from here

Post by annes » Tue Jul 07, 2009 10:17 am

I am so sorry about the loss of your baby girls, I lost my son three years ago, it was and still is the worst thing that has ever happened to me. My husband was extremely angry when our son died, and I was bereft and full of self-blame. I could not do much for the first couple of months, except the bare minimum to get through the day. I won't say that it gets "better" with time, I think that your mind readjusts itself to your new reality and life continues to go forward, even though it feels like it should not. After some time has passed, and things are not so fresh, you and your wife can make some decisions. It took me 6 months to even contemplate getting pregnant again, and almost two years to go through with it after finding a great high-risk doctor. We were lucky enough to have a healthy baby, with me healthy in June of 2008. It sounds like you are taking good care of your wife, take care of yourself, too.

Re : Don't know where to go from here

Post by caryn » Tue Jul 07, 2009 08:38 am

Jesse, welcome to the forums. I'm so sorry you've had to find us. This can be a brutal disease, and nothing can really be done about it but deliver, regardless of gestational age. It's a primary driver of maternal and neonatal mortality worldwide, as well as a primary cause of prematurity.

It might help to make some sense of this by thinking of it as about the most complex thing human bodies do. The placentas the two of you created together were formed from the unique combination of the maternal uterine lining and the paternal trophoblast (the part of the initial blastocyst that doesn't turn into embryo, where the maternal genes have been silenced.) Sometimes that process doesn't progress correctly. Sometimes twins are just too much for her body to support. Either of those things can make the foreign placenta visible to her immune system, and since foreign organs trigger immune rejection, things get worse very, very rapidly.

What underlying condition do the two of you have that necessitates LMWH injections in a first pregnancy? We have posters here with APS and lupus and so forth, who could weigh in with their experiences.

The area where a placenta has previously implanted is easier for subsequent placentas to implant into, because the uterine spiral arteries have been remodelled by the first placenta to provide blood more readily. This means subsequent pregnancies -- especially of singletons -- are very likely to go better. While anyone with a history of preeclampsia is at more risk to develop it again, it is often much later in pregnancy, and much more mild. (Some women with underlying immune responses to the paternal antigens might see earlier onset, however.) The paternal genes governing the trophoblast will also be different in any pregnancy, because they amount to a random half of your genes. The maternal response to your genes will *also* be different, because one thing every trophoblast does is modulate the maternal immune response, in permanent fashion.

Please holler with any questions; this place is huge, but we can help you find out what you need to know, and provide what support we can give. There are likely to be posters near to you, as well.

Re : Don't know where to go from here

Post by amanda » Mon Jul 06, 2009 02:39 am

I just wanted to reach out to you and tell you that I read your post. Unfortunately I don't have any answers. I do know though that there are several women here that have a lot more 'sciency' knowledge than I do that will be able to begin to help you at least get some additional information.

What your family is going though, as you already know, is so very difficult. As far as what you should do to help her my initial thoughts are to say to let her take the lead. Some women feel comfort in 'getting on to the next thing' while others need more time - it's intensely personal and there is no 'right' way to handle what you are feeling. All the feelings you are having are normal and when I went through my loss my best advice was to 'go with' my feelings - to let them out. You have every right to have anger, disappointment, and hurt.

One very gentle question..
Have you been able to think about sitting down with a counselor? Women and men grieve in very very different ways. I found that when I talked to a counselor that I was able to say the things I wanted, needed to say without fear of hurting anyone else. I understand your feelings of anger towards the situation - I wasn't sure if that might help - again, please understand, just a suggestion or a thought.

I can only leave you with my condolences the loss of your babies. I wish that I knew how to accept what is just unacceptable but I don't. I'll be thinking of you and please tell your wife to post too if she would like - she'll find support and understanding here.

Don't know where to go from here

Post by engdad » Mon Jul 06, 2009 02:03 am

Edited post for privacy. Thanks all for your replies.

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