Some new HoPE!

Jose and I have just been so overwhelmed with the mercy and love the Lord has shown us through our family and church members (local family). As you could imagine every day I feel as though I need to get my mind wrapped around our situation with the baby. I have felt that I just need to get more answers then I have been getting from any doctors. On Thursday of last week I had someone send me a link to a website that dealt specifically with holoprosencephaly or HPE. I was, to say the least, blown away. There I found parent after parent with similar stories to ours but their children did not die soon after, they do have problems that are associated with HPE, severe problems. I don't know if this makes sense, but a surge of hope went through me as well as a surge of "...ok, how are we going to do this? How do I even begin to prepare for this? Did God pick the right mother?" You can't even imagine! Well this website led me to do some more online research and led me to other websites that I had heard referred to over and over again. One of them was the Carter Centers; they are the worlds foremost on HPE diagnosis. This morning I was able to speak to one of the nurses for the center, that other mom's had referred me too, her name is Nancy Clegg. She seemed to recount my story even before I had told her what the doctors had said. She told me that the reality is that, HPE in itself is not a deadly diagnosis, but it is the array of problems that could accompany it, at that varies from patient to patient. She told me that even they, who are the world’s experts on HPE, could not tell us what the outcome, exactly, would be for our child. Baby Eva has been diagnosed with Alobar HPE, which is the most severe of the 3 degrees of HPE, but even then there are children living with HPE that are in there teens, although rare, I feel that I have more questions for my physicians about that end of the scenario.
Please keep HoPE with us and continue praying with us. That the Lord will give us strength to except His will and that he will give us strength to still ask for help.

I have some websites I would love to share with you:
www.holoprsencephaly.net (go to the Meet the Kids section)
http://hpe.stanford.edu/ (go to Support & Resources then Family Pages section)
http://ourbabysean.info/
http://wearethesimmons.blogspot.com/ (there little boy is Jack)
www.familesforHoPE.org

Here are some messages that mom’s of HPE kids have sent me:

Hi!My name is Tonya. My son Kai is turning 3 this Feb! He has the same dx of Alobar HPE.My advice is take 1 day at a time and trust your instincts, and follow your heart.Take care and enjoy your pregnancy, Tonya
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Gabby,Welcome to the group. I wish you did not have to find us, but please know that you have come to a very good place to ask questions and find answers, suggestions, and advice. You will not find a more caring and generous group.HPE has historically had a poor prognosis, but there is actually a very wide range of affectedness. Modern medicine has improved survival somewhat, although many medical professionals are still not aware of this. The parents and others on this list can attest to the fact that there are many children with every level of this anomaly, including alobar, surviving and enjoying life. There is no way of knowing ahead of time what will happen.
Have you contacted the Carter Centers yet? That would be my first suggestion. They are the world's top experts in HPE, and will know more than your doctor. Nancy Clegg there will answer any email or speak to you by phone and is a wonderful source of information and comfort. You can also read many families' stories there.www.stanford. edu/group/ hpe/Nancy.Clegg@ tsrh.org
Best of luck to you in this is a hard time. Keep us posted.Susan, mom of Beth, 20, lobar
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Gabby, I only have a minute, but I wanted to tell you, as others have, youare not alone. My son is Jack, and we were told he had semi lobar HPE at 27weeks. He had hydrocephalus, and a cleft lip too. They gave us NO hope. Hewas born 5 weeks early, and just after he was born, we discovered they werewrong about the HPE. We sent his MRI to Carter Centers, and were told he hadholodiencephaly too. (like Corrine).Jack is doing so well now. He is 2 and a half. It seems like yesterday, whenI sent an email just like yours to this group. At that time there was nooneelse here in Utah. I felt very alone, but these ladies were such a HUGEsupport to me. Joey, is in this group too, she lives in Sandy, I live inMurray and we would be both happy to get together with you, if you want.Primary Childrens is an AMAZING place. We have spent LOTS of time up there.Jack was delivered at St Marks, and they were amazing too. Do you know whereyou plan to deliver? My advise would be, somewhere with the highest levelNICU.Please know, most of us have been where you are. And we are here for younow. My email is ********** email me anytime.-- :-) Jenny
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Those are just some of the emails I received. I received a total of 9 within an 1 hour all sharing their experience with HPE diagnosis. I have so many more daily from parents.
I have an ultrasound appointment this Friday and I want to share some of these things with my doctors and ask more in depth questions. I still feel like all of this is way out of my realm of knowledge and ability but I know that Eva has only one earthly advocate right now and it’s her parents! I struggle at times to understand why Heavenly Father has chosen me to be her mother, I feel so small. But she Eva gives me this fighting power I just didn’t know I had in me, I didn't expect to love someone so much that you haven't even met yet! Regardless of how long we get to have her in our lives I want to know, I want her to know that I did all that I could to take care of her.
Thank you always for your love and prayers!
Los Peña