Reality Check

I guess life is just that all about the reality check.  Jose and I got one earlier this week in regards to Eva and her condition.  Being with her on a daily basis I can forget that she was given this terminal diagnosis.  Maybe its that I want to forget that time is limited with her in this life.  Last weekend Eva had a really tough time, she had an increase in seizures and fevers.  Some of her seizures even seemed a bit more violent, but they were non-stop, that meant non-stop sleepless nights for her.  She was so weak afterward and just not all there, her breathing was more shallow and she looked lethargic .  Her hospice nurse came to see her and told us that Eva's breathing pattern had changed and that was not a good sign.  She told us that it was a possible pattern of deterioration.  Again, Jose and I were sent back into our reality of how fragile her life is.  Don't get me wrong, our daughter is not "fragile", she is a tough little girl.  She is a fighter, hey she takes after her mom!  It is so hard to see your little one go through that, I didn't sleep for four nights, if she wasn't sleeping neither was I.  Margaret, our nurse told us that she could have only a week left.  Margaret also told us babies make liars out of doctors all the time and that she hoped Eva would make a liar out of her.  We increased her comfort medications and well, we discussed it with our families and Jose and I had the very uncomfortable conversation about, "what will we do, when 'IT' happens.  It was a rough beginning of the week.

Well the week is not totally over, but Eva has seemed to respond positively to her medication and she has gotten well needed rest.  Consequently, she seems her former self, strong and beautiful.  She has been sleeping well with the minimum seizure activity, for her any way.   I stare at her when she sleeps.  Is it possible to love someone this much?  I just want to be grateful for having this long.  I know we will be sad when she's gone but I genuinely want to think of her and feel happy, not pain.  Is that possible?  Is that achievable when you lose a child?  Well, here more pictures of our little one from this last week.  She is amazing!!  I wish all of you could get to hold her, I hope the pictures are of consolation. 

Love Los Pena

First Blogger Entry

2009
Tuesday, March 17
1:33:40 PM

Ok, So this is my first entry for our blog. I have to just say that Gabby has done an incredible job at keeping everything updated with what has been going on in our lives, especially with Eva. I am so grateful for everything that Gabby is for me and our little family. She is everything that I could have ever asked for in a wife. She constantly challenges me to do better and to try even harder to be the best person that I can be and I am really thankful that she does that. Gabby has been telling me for a long time that I have been needing to write something here in order to express myself and let others know what I am feeling and what I am thinking personally about everything that has happened to us. I have to admit that it can often be very difficult for me to do that. I guess I really feel that I have the responsibility as her husband to be strong and not let my emotions show too much in order for her to see that I am someone that she can rely on for strength. I know that this is true, but I also am coming to realize that, as she has told me time and time again, I need to have some sort of way of expressing myself so that the things that I am going through don't end up being bottled. up inside.
So here I am. I have to admit that I am finding it a little hard to figure out what to write. I guess I'll start with my feelings for Eva. When Gabby and I first heard Eva's the diagnosis, I didn't know what to think. I didn't know what to feel, so I think I just reverted to my "be strong" feelings and tried to comfort Gabby to the best of my ability. My mind, however, was buzzing. I didn't know exactly what it would mean to us to know that our daughter was suffering from a rare birth defect, but I knew that this would be a trying experience. From that day, this experience has proven to be one of the most difficult that I have yet had to endure, and even so, I am grateful for what we have gone through. I know that Eva was sent to us for a reason. I know that she has a specific purpose here on the earth. I know that she chose to be with us and to go through everything that she is going through. Neither Gabby nor I are sure of the reasons for what are happening, but we both have grown confident (through earnest prayer and fasting) that things are now in our lives the way that they are meant to be.
In an effort to make up for all of the posting that I haven't done, I have decided to include the Lullaby that I wrote for Eva for this last Christmas. I'll try to get the audio onto the blog if I ever figure it out.

Lyrics to Eva's Lulliby

Eva, my angel, oh dear sweet kind child
Hear me, my dear child, I want you to smile.

Little one, precious one
This song's for you
Eva my angel,
please know I love you.

One day, long ago,
your mom and I met.
We loved each other
and so we were wed.

Little one, precious one,
we prayed for you,
Eva our angel,
now know we love you.

Time has now shown us
that life can be sweet.
Even when we face
some days tough to beat.

Little one, precious one,
you make us smile
thank you our angel
we know life's worthwhile.

REPEAT CHORUS

Little one, precious one
This song's for you
Eva my angel,
please know I love you.

Milestones...1 month going on 2 months!

We all have goals, milestones that we wish to reach in our lives. They can be personal milestones, professional milestones. As parents, I've found, you not only have milestones you wish to reach for yourself but you have them for your children. I'll have to admit that previous to 9.12.08, the day we received Eva's diagnosis, I too had dreams for my little one, milestones I wished for her to reach, graduation, marriage, to be a parent. I can tell you that Jose and I mourned for those dreams but we didn't mourn for long. The Lord finds His way into your heart and comforts you. He comforted us, our dreams and hopes changed for Eva and she has made us so proud. We wished that she would be happy that we would be able to meet her, to hold her and to feel her warm face against ours. Although, I know I may never see her graduate, or get married or be a mother, she has fulfilled every wish we could have for her. She has reached some of her milestones and more! 

On January 28th we got to meet our baby girl, her daddy got to hold her; on January 30th I got to hold her. A week later we got to bring our brave girl home with us and 3 weeks after that she celebrated her 1 month b-day and Abuelita Luz got to hold her as well! 

This week Eva is 7 weeks old. We are so proud of her and so grateful to have her for as long as we have. Jose and I have held her, kissed her and comforted her and we know she is happy to be with us. She has fulfilled every wish we have for her. Everyday from here on out is a blessing, a gift, one day extra that we hadn't expected. She has helped us understand to never take anything or experience for granted. We love you Eva!

Slideshow!!!

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!!