**Updates**
Yesterday we found out that the heart has a hole and is not indicative of the organ failure they thought we were up against on Wednesday. The doctor is now recommending a fetal MRI so we can learn more about the head but thinks we can proceed in a safe manner now.
My husband and I found out at week 18 that our baby had hydrocephalus and yesterday we found out that not only has the head grown to an already dangerous level, but he has malformations in his heart and other organ failure. The doctors are now worried about my continuing my pregnancy due to the danger it poses to me. Despite wanting desperately for a miracle and loving our son so much more than we even though possible, we have been advised to deliver him early and be prepared for him not to survive. There is no words that can describe the heartache and despair that we both feel right now as we prepare to have to go through the delivery process with a baby that never have a frist day of school, a first kiss, a scraped knee, or a child of his own. I have guilt over the fact that I am choosing to save myself over him. I know it sounds weird when he has no chance of surviving, but parents are supposed to be selfless, right? We are scared and looking to see if others in the area have gone through something similar (losing the baby in a latger term, having to deliver, etc.) and are wanting to talk with people or find a support group in the Sherwood, OR area. I worry that the depression will consume us in a dangerous way if we don't reach out to talk with those that have gone through this and can provide hope that it will get better. We appreciate all the kind words, thoughts and prayers that everyone provided on my earlier messages about the scares we have had during this pregnancy. Please help us find our way...
We met with a pediatric cardiologist yesterday and he said that the issue they saw with the heart is isolated and they do not feel that he has total organ failure. We are now scheduled to talk with a pediatric neurosurgeon about the hydrocephalus to see if that changes the situation as well. My level of danger now is much less and it looks like I will be able to carry the baby to term safely now that we know more about his heart. It has been such a rollercoaster of emotions the last 2 days and feel so blessed that we can learn more about his situation and possibly plan for him to be in our lives. Thank you for your thoughts and prayers as I think he is a miracle that benefitted from all those good thoughts.
I have no good advice for you, but I wanted to say I'm very sorry - I hope you can find peace, comfort and support from those around you.
hi B.,
i am so so sorry for what you are going through. no words can make you feel better and I do not know what you are going through, but I have a twin sister who does. she and her husband went through the very same thing as you. it was soooo tough for them. My sis did feel very sad for awhile but she is now happy. With time it did get better for them. This brought their marriage even closer. You will also need to be able to talk with one another and process how you are feeling. Honey, I am praying for you and your loss. Please be kind to yourself.
B.,
I understand the heartache and fear. Jan 2003, we lost our daughter at week 37 (3 days before being induced).
call me and I can let you know how we got through, how the memories are now, and anything else you want/need to know.
T.
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I would ask your doctor about support groups, even the hospital might know. I just wanted to say my heart goes out to both of you. I am so sorry.
B., my heart just breaks for you and your husband. I am truly sorry you are faced with such an unthinkable situation. Your doctor must know of support groups or at least other people who've gone through similar ordeals. I'm assuming you are being seen by a perinatologist. She should be an excellant source of info and support.
Please give yourselves the time and chance to grieve for your son. I hope you will find some comfort in being able to hold him, even if it is just for one time. This is no small loss. Don't let anyone tell you how to grieve or how long you should grieve. It is your loss, and no one else's. Talk to your doctor, and find a way to accept that some things are out of your control. You surely have people who love you dearly. Let them be there for you, and you will find a way to be there for them at some point. I wish you peace.
I'm so so sorry you have to go through that. Please don't feel guilty for "choosing" to save yourself. I haven't gone through anything like that, but you're in my thoughts. I hope your medical professionals can point you in the direction of support groups. Please get counseling for this with your husband, & don't stop communicating with each other. I agree with one of the other posters that this can bring you closer together with your husband & strengthen your bond. All the best to you...
B.,
Human beings (YOU) are resiliant! I have had several people confide to me extremely difficult situations that have happened in their past... death of a child or spouse, witnessing atrocities, cancers and illness. Somehow these people are able to beautifully build meaning out of difficulty and tragedy. You will too, if you have too. And so will I. And I have. None of us know what's around the corner. Most certainly loss of loved ones is in ALL of our futures. If we all remember that, we will live more fully. You sound like you know your need to be connected with your community. All mothers/women need this same connection. You are in good company and many have walked this path before you. Whatever is in store for you, you will grow and love and learn and you will be okay. Love and best wishes to you on your path.
I have no idea what to say, B., other than my heart aches for you. I'll hold you in my prayers.
I'm glad to hear things are going better. I just wanted to say that I will continue to send warm thoughts your way. Good luck with everything, and I hope that everything will turn out well. Be good to yourself and your partner. :)
I lost my first baby at 14 weeks due to kidney failure. Something the nurse told me made me feel a lot better - the truth is that up to about 40% of first pregnancies don't come to term. Something doesn't develop right, and the baby is lost. Most of the time, though, that happens before the mother even knows she's pregnant! Future pregnancies go just fine.
Your baby is a fighter to make it so far along. Just know that if things don't go the way you hope, that you did nothing wrong and there's nothing you could have done differently that would have changed the outcome. Your baby chose you even for a moment of existence, and that's special.
