Holoprosencephaly

Well I thought I would take the time to clear up some questions about Eva’s condition, Holoprosencephaly or HPE. 

Recently my sister-in-law, who is on a mission, wrote and asked me very basic questions about Eva and her condition and how it affects us caring for her, and I thought maybe others have the same questions.  So I’ll start from her beginning outside the womb and what we learned about caring for her.

Eva was born on 1/28/2009 at UVRMC here in Provo.  She weighed a very healthy 7lbs 8oz and measured 18inches long.  She was born with a cleft lip (no cleft pallate) and a flattened nose with a single nostril, she has relatively close set eyes; these are facial indicators of Alobar Holoprosencephaly.  Alobar is the most severe of the defect and is considered terminal.  She however, was born with healthy lungs, heart and other organs.  She feeds through a feeding tube that goes down her throat to her stomache; she does have the feeding tube in pretty much all the time except for during baths and she occasionlly pulls it out.  Due to her condition Eva has a problem regulating her body tempature so she does get fevers frequently.  She also gets seizures on a daily basis, we don’t quite know if they are directly related to the fevers or if they are independent.  We do give her medication to help with the fevers and we have some medication that we give her to help calm her during her seizures.  Now in regards to her seizures, they are frequent and not exactly like one an adult would experience.  She does throw her head back and her body stiffens but she doesn’t go into violent body shaking.  She does, however, have involutary body movement that looks like what some one with a tick or terets might have.

Her baby side: she has regularly feedings, every 3 hours.  She has regular bowel movements and dirtys on an average about 10-12 diapers a day.  She has little baby fits and she fusses just like a newborn.  Eva hates, I mean hates a dirty diaper.  Because she does a lot of breathing through her mouth and in conjunction with her cleft lip, she gets dry mouth and nose and so we use saline drops to help give her some moisture in her nose and we have some swabs to moisten her mouth.  She still is adjusting to day and night, some days she’s great and gets up during the day and will have good nights of sleep but sometimes she is up for a good portion of the night and well mommy or daddy are right there with her.  She is gaining weight on average; she is growing in length on average.  Her head is growing at a slower pace then other babies but that seems to be related to the condition.  She seems for the time being to know our voices and recognize us when we are near her, she will turn to the sound of our voice.

By all means we were given a normal child with a special condition.  As each week presses on we see her grow, we do see a bit of her personality.  However, as the seizures start to become more frequent things may change and we may begin to see less and less of that personalilty, it is something our hospice nurse has warned us about.  It does make me sad to think, she may get to the point of not knowing who we are, but Jose and I have great faith that in our reunion later in eternity that she will no doubt know us!

Caring for her is, I believe, not unlike caring for any other newborn.  We have some extras but it seems that even those who have children with no special condition, have some extra things.  Sometimes it’s because of their lifestyle or personal situation.  Jose and I are very fortunate to have so much support, in regards to Eva and her condition, our nurse, Margaret, our social worker Dave, they all gently guide us along our way, with encouragement and love.  It just makes us feel like we are doing the right things for our baby.

Los Pena

And I digress...and Thank you!!

So it has been awhile since I have written on our blog, I guess I couldn’t really get all of my thoughts together.

As most of you know if you’ve been keeping up with our blog, our baby Eva was diagnosed in utero with a brain defect called holoprosencephaly it is a terminal defect.  Well still, up to our due date, were not given the best news on Eva’s condition.  However, Eva herself was doing fantastically.  She was and is a little fighter...she’s a Diaz all right!  Stubbornness, an affliction my brother claims affects only the Diaz women.  Well, I am grateful for that little fighter in Eva.  True to her nature she came out screaming.  I was totally out of it considering I was super drugged up while they were performing the c-section, I could hear my daughter’s cries as the doctor pulled her out and suctioned her.  It was the most emotional and amazing moment of my life to know that she was alive and really kicking.  Soon after her daddy brought her over to me, she had to go to the NICU, she stayed there for a week and a half. 

Side note:  I cannot say enough about how wonderful the nurses in the NICU are and about how they treated Eva and us.  They made us feel as though we were leaving our daughter with family.  Which was extremely important considering I needed to do some recovering from my c-section and couldn’t be with her every waking moment and her poor daddy tried to care for both of his girls.  I’m a lucky woman!!

We were very excited and for a moment completely forgot about Eva’s condition.  That is not until the test results came back and we had to meet with the doctors.  Jose and I were brought back to reality.  They told us that they were able to confirm her prognosis and that it had not changed.  They told us that our little one did not have long to live and that we should take her home as soon as we could so that we could start making memories with her.  Unfortunately they could not give us much more in answers, they could not tell us how long exactly Eva had, or the method in which she would die.  “Just take her home and comfort and love her”.  I cannot tell you the emotions that ran through both of us.  We had to face this news once before about 5 months prior and it was not any less potent 5 months later.  We, however, had family by our side this time.  Together with our family we have felt the burden of these feelings lessened.  Although we have strong emotions on occasion about our situation, we do not feel alone.  Jose and I are also very faithful, faithful and trusting in our Heavenly Father’s plan of salvation.  In particular our faith is put to the test here, Jose and I made covenants when we married in the Temple of our Lord, we made promises and the Lord made promises to us.  We are now tested on whether we truly believe in the promises made to us and whether we are faithful to keeping the promises we made.   Our faith and trust in God is what keeps us hopeful, hopeful that whether we will see our daughter grow up in this life or not, we will be with her in eternity.  Family, Friends, this is something we constantly work on; we work to fill our spiritual reserves, in order to call on them during our most difficult times.  We work together and we share in our faith of God’s plan and that has been our saving grace.  I can tell you that I know we do not do this alone.  We are so grateful for our family, for our loving friends.  We are so grateful for the messages on Facebook, on this blog and from all of you that think of us and pray for us.  We know that Heavenly Father is loving and merciful and has given us loving friends and family in order to get through this trial.  We are given the best support system here in Utah as well.  Eva is on pediatric homecare, they are amazing, we have medical support, a nurse Margaret, medical supplies, and we have a social worker and a Chaplin that checks in on us.  As well as Angel Watch, for most of you that have read previous blogs you know Angel Watch and Carolynn have been with us since diagnosis.  Jose and I love you and we miss the comforts of home but we know that our little one is being given the best care possible here.  We thank you, Thank you Thank you again for all of your support and love.  We want to share Eva with as many people as we can, we want to help Eva fulfill her purpose in this life, isn’t that what all parents are charged with?  Helping their children fulfill their purpose in this life!

We love you,

Los Peña

Welcome Home Baby!!

OK, yes I’m very bad.  I can’t believe it’s been so long since I have blogged.  So much has happened since December 13^th.   Well Christmas of course, our anniversary and New Year’s as well.   But the most significant event was the arrival of our anticipated family member.  Ms. Eva Isabel Pena was born January 28^th at 8:34pm via a very unplanned C-section, she weighed 7lbs 8oz and was 18 inches long and packing quite the hairdo!  That’s my girl!!

 

Happy Thanksgiving...End of another Semester...Merry Christmas...Susan Mortensen Turley!!!!

So I have been a slacker.  I promised to post more often and well, I need to work on keeping my promises.  Well, we got to spend our Thanksgiving in Arizona with our family, although it was short, it was so much fun.  The weather was amazing!  The food was fantastic!  The family was just what we needed!  Its weird when we are in Arizona it just feels so comfortable and familiar and this trip I heard my husband say something he never says, “...I think I miss Arizona”  But as we left and got closer to Provo, it really felt like, “Ok, I just can't wait to get home and into my bed!”  I think it made me realize that home is where your family is, our family is in Arizona but now it is in Utah as well.  Jose, Jeter, Eva and I we are a little family!  Is that a crazy revelation or what!  I mean we are coming to our 1st year wedding anniversary, I guess I should figure out by now that home is Jose!

Coming home from Arizona and having to deal with the end of the semester has a duality of feeling.  Happy that it is almost over and to be done (for Jose) with those class and Anxiety that the end is here and he had so much to catch up on.  This semester has been challenging and difficult.  There is so much pressure placed on pre-med students.  Not just with classes but with extra-curricular activities, such as working on talents and service and how you will look on your applications.  The competition is fierce and well it will be for sometime.  I mean there is no real end in sight and sometimes it feels like so much.  Jose is not really one of those cut throat people that only thinks of himself and how he could get ahead.  I know this is what will make him a wonderful physician one day, but it will be his challenge as we deal with other cut throat individuals in this field.  Pray for us that we may always keep the best perspective.

So upon us is the Christmas season.  To be quite honest I was never really fond of the season, not necessarily the Savior's birth and what Christmas is, but what others have made it to be.  The demanding of a particular gift, at times children insistent that they “need” to receive a particular gift.  People counting gifts and making sure that they have the most gifts.  It just breaks and saddens my heart.  I guess this is what made me stress out during this season.  Thank goodness, I have ALWAYS had my family, so in reality I have never lacked for anything.  This year the sentiment rings more true than ever.  I have my family in Arizona and those friends that are like family spread all over.  But this year I have so much more, I have MY family, what an amazing gift this has been for me.  Jose my forever friend, Jeter our most loyal companion and Eva our gift from God.  I don't know exactly what the New Year will bring but I know what this holiday will bring and we are going to start our own family traditions.  It will be a humble Christmas, so to speak, no “gifts” but I know it will be the best.  We have fun activities planned and lots of treats for us...chocolate abuelita, winters snow, christmas movies, christmas cookies, christmas lights and decorating.  We are grateful for Skype as we know it will bring us closer to our family that is so far away!  

As some of you might know a friend of ours recently passed away after a short and difficult battle with cancer, she was only 25 years old.  She has been a great source of inspiration for me and I hope to share some of her with you, that she maybe a source of inspiration to you as well.  Her name is Susan Mortensen Turley, she was just married earlier this year, she would have celebrated her 1st year wedding anniversary this January.  I wanted to share some of the talk her father gave at her service last week.  Jose and I could not be there due the fact that it was in Tempe but her family was generous to share with everyone else the spirit that was in that chapel that day.  Here is some of what her father talked about.  Please read it and ponder, the Love that our Heavenly Father and our Savior Jesus Christ has for us and feel his spirit testify that to you!  Con Amor!  Los Pena

...As a part of our life here on earth, we will make mistakes, we will make choices contrary to God’s commandments. We know from biblical prophets that no unclean thing can enter back into God’s presence. In order that we might be clean, God sent His Son, Jesus Christ to teach us how to live, and to atone for our sins so that justice and mercy might have equal sway in our eternal judgment. God’s promise to us is that if we follow Christ’s way and live in the way that He directs us through His Light, the Holy Spirit, His teachings, and those called under His authority, that we will be clean through Christ’s atonement. At the end of our mortal lives, we can return to live with God, our Heavenly Father and continue to learn from Him and grow. From Faith, comes action. From an early age, Susan understood this concept. She understood that if we live by faith in God, that all would be eternally well and good. As she said in her last message posted on her blog – “I have learned that a lot of things in life just don't go the way we plan. This is by no fault of our own.” As we exercise our faith in God, His perfect eternal vision and perfect care for us will deliver us home to Him. On the earth, when God impacts our lives, whether directly or through another person, our responsibility is to act or change, to not be the same person. We are here today in remembrance of Susan’s life. Having the privilege of knowing her for all of her 25 years, I believe that one thing she would want us to do is to make changes in our lives that reflect her legacy. Let me relate an experience that illustrates that. The day before she died, I was privileged to listen to the last telephone conversation she had. She wanted to speak with a dear friend. She was weak, unable to speak above a whisper, but as this friend started to end the call, she said, “Don’t hang up, I need to tell you one more thing. Never forget who you are. Always remember the things that we talked about.”

That is our challenge – Don’t hang up on Susan. The reason you are here is because you loved her and want to remember her. Her impact on your life needs to include this knowledge. Never forget that we are indeed God’s children, that His way is the best way, and that when He acts in our lives, our responsibility is to respond in faith, love and joy to His actions. If that means change our habits, we should change our habits. If that means to go to church, we should go to church. If that means to be kinder, gentler, more loving in our family, we should do that. If that means that we stop telling God what He should do, and instead be faithful in accepting what He is teaching us, we should do that.

In time, the intensity that we feel at Susan’s passing may fade. It is natural, our lives are busy, we move on. The intensity will return when a picture jogs our memory, or when a thought comes to our mind. Perhaps tears will come at that moment. However, what should not fade from our lives is the change to our very souls that we feel at this moment. What should not change is the impact of the Holy Spirit that you feel right now, this very moment. The action that you should take is to cement the changes to your soul that God is prompting you to do right now. Because you don’t understand everything, you may hesitate. I urge you to take the action of committing to yourself to move forward in faith and diligence. Because He has perfect, eternal vision, God will answer all of our faithful prayers, not always in the way that we wanted, but in the way that will best help us to achieve our eternal potential. All of us prayed for Susan’s health and recovery from cancer. Instead of the removal of her cancer, God answered our prayers for her with by increasing her understanding, with the giving her the ability to bear the pain, with greater strength for her to carry on and endure in faith to the end. He healed her eternal soul. As the apostle Paul said,

7 And lest I should be exalted above measure …, there was given to me a thorn in the flesh, …
 For this thing I besought the Lord thrice, that it might depart from me.
 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.” 

I love this verse in the book of Psalms: “Be still, and know that I am God….”

Christ said, “I am the bread of life: he that cometh to me shall never hunger; and he that believeth on me shall never thirst”… and He also said through the prophet Isaiah,

18  And therefore will the Lord wait, that he may be gracious unto you, and therefore will he be exalted, that he may have mercy upon you: for the Lord is a God of judgment: blessed are all they that wait for him.
9 … weep no more: he will be very gracious unto thee at the voice of thy cry; when he shall hear it, he will answer thee.
0 And though the Lord give you the bread of adversity, and the water of affliction, … thine eyes shall see thy teachers:
1 And thine ears shall hear a word behind thee, saying, This is the way, walk ye in it, when ye turn to the right hand, and when ye turn to the left.

 Susan and all of us hoped and prayed for her freedom from cancer. Through the grace of God, Susan found freedom and teaching above the everyday, above the mundane, leading to eternity. Our task is to do likewise, with whatever opportunity God places in our path, to follow the promptings that He sends to us, to learn for ourselves, and experience that joy described so often by those of faith in Christ.

Listen to the words of faith, diligence and action from Jeffrey R. Holland

…the tests of life are tailored for our own best interests, and all will face the burdens best suited to their own mortal experience. In the end we will realize that God is merciful as well as just and that all the rules are fair. We can be reassured that our challenges will be the ones we needed, and conquering them will bring blessings we could have received in no other way.

If we constantly focus only on the stones in our mortal path, we will almost surely miss the beautiful flower or cool stream provided by the loving Father who outlined our journey. Each day can bring more joy than sorrow when our mortal and spiritual eyes are open to God’s goodness. Joy in the gospel is not something that begins only in the next life. It is our privilege now, this very day. We must never allow our burdens to obscure our blessings. There will always be more blessings than burdens—even if some days it doesn’t seem so. Jesus said, ‘I am come that they might have life, and that they might have it more abundantly.’ Enjoy those blessings right now. They are yours and always will be.”  I testify that God, our Heavenly Father, lives. I know that He sent His Son to teach us God’s way, to atone for our sins, and to enable our own resurrection, just as He was resurrected. Of the truth of these things, I testify, in the name of Jesus Christ, Amen.

Eva's first photo op - Jose's Birthday!

Friday we had the most amazing experience!  Some wonderful, anonymous person and quite inspired I might add, bought us an ultrasound appointment with a place in Salt Lake called Fetal Foto's.  What they do is take 2-D, 3-D and 4-D photos prenatally, its like a prenatal photo session.  We were able to see our baby Eva.  At first she was uncooperative and not wanting to show us her face, just her back.  But it seemed the ultrasound tech had some tricks up her sleeve and got Eva to move.  There in started the photo session.  She was beautiful, here are only a few pictures.  They gave us a disc with 52 pictures on it, a DVD with the whole session on it and 22 pictures for us to see right away.  These that I posted are one 2-D where she is sticking her tongue out and a 3-D where she has her little hands folded in front of her.  You can see her whole face and nose and lips.

It was the most amazing experience.  We still don't know who the generous friend was but it was the most wonderful thing to see our baby.  These may be one of many pictures or photo sessions we get of Eva even after she is born or the only photo session we will get.  Either way, it is amazing to now have a photo album of our baby!  She did so many cute things, she was grabbing her toes, the umbilical cord, she was opening her mouth to swallow and she was playing with her lip with her tongue.  She even yawned during the session, apparently it was running to long for my princess. You could see her little cleft in her lip, I think when she stuck her tongue out she was playing with her cleft!

At first we did not know what to expect or what we would feel like in seeing her.  But once we got to see her move and boy did she move, it just felt like "...that's our baby and she's perfect"  I was overcome with emotion.  We came home that night and watched the ultrasound DVD again.  We are so excited to be home for Thanksgiving and sharing these pictures and the ultrasound DVD with everyone!

We love you all.  Words could not express the gratitude we feel for this opportunity to see and enjoy Eva this way.  Thank you to you who so generously gave to us.  Please know that this gift will not be forgotten nor will we take for granted your generosity.  Jose and I look forward to the day when we will be able to "pay it forward".

Happy Birthday Jose (Daddy)!!!

Con Amor - Los Pena

Ushering in a new Era

I’m not a real Michael Moore fan; he has always been a bit too liberal for my blood but to quote him…

“We really don't have much time. There is big work to do. But this is the week for all of us to revel in this great moment. Be humble about it. Do not treat the Republicans in your life the way they have treated you the past eight years. Show them the grace and goodness that Barack Obama exuded throughout the campaign. Though called every name in the book, he refused to lower himself to the gutter and sling the mud back. Can we follow his example? I know, it will be hard.”

I know it will be hard, but I know that as we are conscious of how hard it will be we can do it. Last night has Jose and I watched John McCain speak we absolutely gained a renewed respect for him. Throughout the campaign, it was difficult to watch anything that the Republicans put on TV or to listen to any of their speeches due to the “mud slinging”. It seemed as if hate, prejudice and stereotype were going to dominate this election. However, gracefully John McCain congratulated Barack and reminded his supports and his party that we must be united; he vowed his support of OUR next president. Although, I have supported McCain in the past, I have never felt him equipped for the presidency, regardless of his time in politics, but last night he showed his true American spirit and his leadership qualities (I’m not sure about his supports at that rally however).

We, however, felt redemption, for all of us that come from “the Southside or the Westside” of cities across America, for all of us hyphen Americans that were born of immigrant parents, we felt redemption. This morning Jose and I listen to Barack’s 2004 speech at the DNC, he was the keynote speaker at that convention, and he was the relatively unknown Senator from Illinois. It moved us again; every time we hear him speak we are moved. I know for me he renews my sense of and need for accomplishment. Anything is possible, not just because of the color of his skin, but because of where he came from he did not come from privilege, and he did not have the easy road paved out for him. This kid born of an immigrant father and American mother made his own way, from Columbia University to Harvard Law always with the loving support of his family, the cornerstone of ANY success. I think to myself this could be anyone of my nephews and nieces, younger cousins, this could be anyone of my children; this could be Jose and I, any of our siblings. Life can make you cynical, you see that the road is too hard, filled with too many challenges and we can feel ill equipped so we give up at times. Barack ushers in a new era of hope, the hope that we at times feel is missing as we go on in our day to day lives.

Don’t get me wrong, I don't put all my hope in this man nor do I feel he is the only inspiration I or my family needs. I know that the real hope lies in our Savior Jesus Christ, I know that peace, love, and the caring for our neighbors is all a foundation of Christ’s teachings. But I also know that the Lord puts people in our lives to carry out his work. We all have that opportunity to be Christ-like, the challenge to be Christ-like. Judging not. I don’t know nor do I believe that Barack will solve all of this nations problems but I do know what his campaign meant and how his words have inspired positivity and unity. We will now look forward, on to his presidency with optimism, with inclusion. Barack has acknowledged that it was truly the people whose voices were heard, last night November 4, 2008!

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!!!