Dr. Nance

Last Friday we had our appointment with our OB, Dr. Steven Nance. We are so glad that he is our OB, he has been a big support to Jose and I, in every decision that we have made so far. He is hopeful of Eva, he doesn’t tell us that everything will be ok or that it won’t he is just hopeful and that is exactly what we need to hear at our appointments.

We heard Eva’s heartbeat and it is strong! He measured me and said that I’m measuring right on. As of right now we don’t know when we will deliver her, ideally when she is ready. Induction is not out of the question, it does remain an option but as with everything else, we are taking things one day at a time. I am feeling much better these days.Oh…as always keep us in your prayers; we thank our Heavenly Father every night for our family and our friends that have been so wonderful and supportive! Thank you Thank you Thank you!!!

Angel Watch

Last night I met with the representative of Angel Watch, the program that was recommended to Jose and I by the hospital.  They are set up to help families that are dealing with diagnosis like ours in the prenatal stage.  This meeting was supposed to last only an hour and went on for about 3 and no it was not just me talking.  Although I was doing the majority of it but only answering the questions...LOL!  We talked mostly about how Jose and I and how we are dealing with Eva's diagnosis.  I was prepared for all business when she came, I guess I thought I would meet with someone that was going to help me plan for everything that would be happening to us upon Eva's birth but what I got was someone that could help us understand what we were feeling, first.  What we might be feeling and reacting to but not acknowledging.  We spent most of the time talking about where we came from (Jose and I), our relationship, dating, marriage, our families, how many in our family, our individual relationships, and our past experiences.  I guess she (the Angel Watch lady) was really trying to get to know who we were and in what way we would need help.  She gave us some tools to help us deal with our situation, suggestions, on how to talk, what to talk about, what our expectations are of this baby, baby Eva.  She asked something really poignant, to each of us, she asked what our hopes were for Eva and what are fears were for her.  She gave me information on how we could create memories with Eva, even though she wasn’t born yet.  She left us with some homework and we said we would meet again to go over more logistical stuff in regards to the birth etc..

I think for Jose and I it is easy to sort of put aside what we are going through at times so that we could “be normal”.  But its all still there, no nursery, no stroller, no planning her outfits.  Sometimes the house feels baby-less.  I have some of the things my sister and mom gave me in the spare room, the little bears and blankets, too.  But its in another room and the door is mostly closed.  The whole thing with our situation is that we don't know what is really going to happen.  We just know she is not "whole" and because of that there will be problems, and the greatest possibility of a very short life, again, what kind, we don't know, exactly. I know what Jose and I need to do is deal with the situation as it is, that is where we struggle, its hard to talk about out loud sometimes.  Feelings, they are hard to just blurt out..."I'm having a lousy day today because I want to be so happy that I am having a baby but I can't!!!"  Days go by and it passes and Eva kicks me into shape, reminding me to focus on her.  She is Diaz-Alvarez!  She is a woman in charge!

I realized that the days after my appointments are the most difficult because those are the days that everything is so real.  Those are the days that I am reminded that this is not a “normal” pregnancy.  That the diagnosis is real, that Eva is really sick.  This is where “the funk” comes in, where I want to turn around and blame myself, where I keep thinking of what I could have done or what I did to bring this on.  I have to admit, for me being a talker, it is difficult for me to talk, and especially about the negative feelings I might be having.  The blog helps.  It is easier to write these things than it is to admit them out loud.  I am not a poet nor do I posses musical talent or paint or dance (not well, anyway) but I guess I can write about what we/I am going through.  Nonetheless people, I want to say I am not superwoman and I am not made of steel.  I know I can break from this, I guess I am just needing everyone, including myself to handle us with care.  I think we need love, kindness, thoughtfulness, attention, everything you all have been helping us with.  We love you our family and friends.  Those of you not afraid of us, not afraid of hard things and hard situations.  Thank you!  You all are our Angels too!

Ultrasound Update

So this last Friday I had another ultrasound and met with the Maternal-Fetal doctor. Eva gained another pound; she was 1lb 12oz, so pretty close to 2lbs already. She only weighed about 12oz about 5 weeks ago. Her heart beat was great 156bpm and all her organs looked good and growing, I even saw some urine in her bladder. They measured her arms and her legs we saw her feet too, they look big like her daddy’s. And then, we looked at the brain and how it was developing and it looked the same, we could see the fused thalami and they showed me how a portion of her brain seemed to be missing. They also were able to show me her little cleft lip; they said that this is the facial abnormality that goes with the diagnosis. She was moving a lot during the ultrasound which was so weird to feel her twitch and see it on the big screen as well.
I spoke in detail with the doctor about all the information I had received regarding HPE and the clinical nurse I had spoken to in Texas with the Carter Centers. As well as the parents I had spoken to that were given the same diagnosis and their children. She was pretty clear that Eva could live as long as 8 weeks but she really had never seen any baby go beyond that, she told me that it is in rare cases that children survive beyond that. She admitted that she has not seen every HPE baby but the ones she has diagnosed, particularly with alobar holoprosencephaly (Eva’s diagnosis) have not lived. She wasn’t dismissive of my wanting to know more or of the information that I shared but nonetheless you still feel like you are going it alone. She reassured me that whatever the outcome UVRMC (the hospital that we are delivering at) had a wonderful and up to date NICU. We talked about Angel Watch, who I will be meeting with tonight. They will help me plan for everything; that includes from how to deliver to after delivery and depending on how Eva is doing whether we will be able to take her home or not and what kind of help is available. We also talked about delivery dates and I insisted that we would like to have her as far along as we can. Again, no concrete answers which we expected that, this is a complicated diagnosis and waiting is about the only thing we can do and plan the best we can with the information we have. Jose tells me that we only use 2% of our brain and if an adult had a brain injury that took out most of the brain (like with Eva) they would not be able to relearn everything they had lost. But with Eva she hasn’t learned anything and the brain is still pretty much a mystery. We don’t know what she might be missing if anything. I’m not sure what consolation this really is, but it brings hope.

However, I realize that leaving those appointments does affect me, I guess they are a reality check of what we are dealing with, some days I feel so strong and others I want to be carried. I guess Friday was one of the “carry me” days. I have to admit that I struggle with wanting to know why, “why exactly did this happen to her?” And as her mother and the one that is carrying her, the inevitable question of, “what did I do?” I know this is where my faith is challenged and tried. It is when you feel so responsible and helpless at the same time. As I stated before I have an appointment tonight with the Angel Watch people and another ultrasound on November 19th. Aside from the fibroids, which looked in good position, they have grown but are in good position. The next ultrasound will be monitoring Eva's head and brain, they worry with these children that fluid might devolop and cause the brain to swell, which will make delivery a problem. So they will monitor it to make sure that we will not have to deliver earlier than planned.

Family, friends, Jose and I need your prayers. Pray for us, that we may always be able to accept the Lord’s will; whether it is that Eva will live with us for some time and will have special needs or be it that we only meet her to say goodbye. Thank you for your thoughtful emails and messages they mean a lot to us!

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

After our ultrasound...

Well, Jose and I got another ultrasound on September the 12th and we had some conflicting news that day.  As some of you know and as I've mentioned in my last post, I have been dealing with uterine fibroids.  My ultrasound was to see how the baby was doing but more so to see where and in what position my fibroids were in and why they were causing me so much pain.  The ultrasound confirmed position of the fibroids, which was favorable.  We found out we are having a little girl.  However, the ultrasound also found that our little girl has a severe birth defect called holoprosencephaly, it is a brain defect.   They explained to us that they would not know exactly her condition upon birth but that she would not survive past infancy.  The news has been quite devastating and has definitely tested our faith.

The doctors did give us the option of terminating the pregnancy but it was not really an option for Jose and I.  In subsequent ultrasounds we had seen our daughter move, in the ultrasound of the 12th we had seen her move and breath and we saw her strong little heart.  She is real.  Lately we have felt her move more, in the morning she moves the most, it has been amazing to feel her little kicks or punches.  I know this little one was meant to be mine and Jose's baby.  She chose us to be her parents!  I feel blessed if only to know that much.  So we have decided to carry her as long as we possibly can.  We have named her Eva Isabel Pena.  Baby Eva.

It has now been a little over 3 weeks since we received our news, we have gotten a little more information.  They did tell us that she could live for a few hours, days or months.  It does make it more difficult to make definite plans.  But I do long to hold my daughter.  We've been offered support from the hospital on developing a birth plan.  They have offered counseling when we need it, as well as the choice to speak with other couples that have gone through the same thing. 

Jose and I have been blessed with amazing families!  They have been comforters, they have been supporting and loving!  We could not ask for more that we have received from our families.  It has been quite a challenge to be dealing with this and being so far away in Utah but here to, we found, we have been blessed.  Our ward has been wonderful and helpful.  Because of the fibroid pain, there are times that I literally can do nothing but sit or lay.  I have had sisters in my ward offer to cook and clean for me and Jose or simply come and keep me company.  I have been feeling better in these last couple of weeks and I went back to work.  But I am grateful that the help is there when we need it.

I never imagined going through something like this, Jose and I had a plan.  Well its funny that we can plan all that we want but the plan meant for us is not always what we think.  I will have my good days and I will have my bad days, I know.  But at this time I just ask that our friends and our family think of us, pray for us and Baby Eva.  We can feel your love and prayers, believe me!

I will try to post more often, I will try to add pictures.  Thank you for your friendship, love and suppport.

Los Pena