The Reason

This blog was started as a way for me to record our, my daughter Luisa and our family's, journey with Amniotic Band Syndrome that presented itself on the head of our sweet daughter. And has turned into a journey of dealing with a fatal prognosis, and the very premature death of our sweet baby. My great hope is that we might be able to help at least someone, if not more, by sharing this experience.

Wednesday, December 29, 2010


The saddest words that I have ever heard in my life,

" Unfortunately, I cannot see your baby's heartbeat. I am so sorry."

Our sweet baby Luisa has left the way of the earth to be at home with her Heavenly Father. It is the saddest day of my life, but also the most peaceful, if that's possible. I am so sad that my time with her was so short. I am so,so sad that my dear husband did not get any time with her. I am 23 weeks along, but based on her long bone length the doctor believes the death occured around 2 weeks ago. I last felt her about 11 days ago while singing in a performance of Handel's Messiah. It was our first time, mine and Luisa's singing together. Right now I am waiting to hear from the hospital to find out when to come in and deliver her. The longest wait of my life.
As I look over at my 1 1/2 year old, stealing my crackers and cheese and playing with blocks, I am touched by the miracle of child bearing and birth. We take those events for granted, I think, because we have so many perfectly successful pregnancies, and perfectly wonderful children running around this earth. But, I now know that these two events are so miraculous, and should I have more children, I won't take those events for granted. My love to all who have been praying for us, I feel those prayers, they are giving me strength and comfort.

Tuesday, December 28, 2010


Tomorrow I have an ultrasound. I am NOT looking forward to this ultrasound at all. I am nervous and maybe a bit fearful. I think because I am afraid to hear that Luisa might have already gone home to heaven. But I found a scripture yesterday while I was reading in 2nd Timothy in the New Testament in the Bible that I would like to share with you: 2nd Timothy 1: 7 "For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind." So I will head off to my appointment with those words in mind and heart.

Monday, December 27, 2010

A Good Night

The Friday before Christmas Eve, about a week ago, I had a good night. It was the day afted my grouchy day. My husband and I ordered take out, and then I curled up next to him to watch tv. And as I laid down, my head in my hubby's lap, Luisa just started kicking happily away. For at least an hour. Just kick, kick, kicking away. IT WAS BLISS. I will never again take those little kicks for granted again. Such a good, happy night.

Saturday, December 18, 2010

Her Name

On that fateful Nov. 30th day when we found out about our baby girl's condition, one of the very first things that my husband and I discussed was her name. We both felt that she needed a name right away and it needed to be a special name. The name Luisa is one that we had picked out for our first girl since before our first boy was born. Luisa is my Mom's name, and she is named after her dad, Luis. They are both very special people. But the thing that really sealed the deal for me was the meaning. Luisa means "famous warrior". I thought that was very fitting for our precious daughter. We felt that we needed to make her a part of the family as soon as possible. So we refer to her only as Luisa, we pray for her by name, she has her own Christmas stocking and advent calendar. Although my other two children are very young, my 3 year old has caught on and talks about her and refers to her as "baby Luisa". Hearing him do it really makes it official, she IS part of the family.

I was talking to a woman that knows of our situation and she was concerned. And in her well meaning concern she had said, " Well, can't they just take IT out of you?" I was really taken back by her comment. I ended the conversation politely, but thought to myself, my baby is not an IT. My baby is not just a fetus. My baby IS alive and a life, my baby IS a human being, My baby IS a she, a daughter, My daughter, Heavenly Father's precious daughter, my baby IS our sweet baby Luisa. No, Luisa is not an IT. Although, given her condition, terminating the pregnancy was an option that the doctor touched upon ( and he just mentioned it, but did not push for it at all, which I really appreciated), how could I when she is all of those things. I have read on other blogs of mothers who have had babies diagnosed with fatal conditions and have decided to allow the baby to live for as long as possible, instead of terminating the pregnancy. And they have all stated that the reason why is love. They love their baby unconditionally, with or with out defects, with the same love that our Heavenly Father does. Just as I love my sweet baby Luisa.

Thursday, December 16, 2010

Grouchy Day

Today I have been grouchy. Yesterday I was fabuloso. But not today. It seems that my pattern is every other day. One day I am so great, at peace, happy, and then the next I'm moody, emotional, and not happy. It's as if my inner self goes on strike or something. It can only be strong every other day. I'm still working at being a strong person. So today is my down day. I've been thinking, "Why did I get picked for this challenge? I mean, really. There are several people that I can name off the top of my head that are much stronger than me. I think they could handle it better." But I would not want to give this challenge to anyone. It is really hard. Not something I would have picked for myself or anyone else. I have grown quite a bit though. There have been blessings. I remember those things. But I am still human. So today, I'm grouchy.

Then, I had to take my 18 mo. old, Adrien, to get his flu shot booster. Shots are NEVER fun for us. My boys get VERY dramatic. LOTS of tears and loud crying. So I wasn't looking forward to it to begin with. Then we get to the pediatricians office and the waiting room is literally packed with Mommys and newborns. Oh yay. So I didn't break down into a ball of tears although that is what I felt like doing. But it was hard. Luckily we were the first ones called so I only had to be brave for 10 min. And then I was pulled out of my desire to break down into a ball of tears by Adrien's flu shot drama. And then I decided to buy a yummy treat, just for me. Yes, I am an emotional eater. Chocolate Covered Minty Marshmallows from Trader Joes. It didn't solve any problems but they sure are yummy. I can't wait to try some in hot cocoa.

Wednesday, December 15, 2010

Beauty for Ashes II

With this experience I have done quite a bit of searching on all sorts of levels. I knew I wanted to record this experience, and as I was starting this blog I just started feeling frustrated, and getting kind of mad at the stupid amniotic bands that are so destructive, and this ABS that is so mysterious as well as the Acrania. It's silly, but I was mad at those things. In my frustration I googled, "What is Acrania", and what came up in the search was this: a blog set up as a type of memorial to a sweet little girl who was given the same diagnosis as my sweet little Luisa. I cried and cried, for many reasons. But, one of those was how these wonderful parents, this inspiring mother traded her ashes for beauty. After reading about sweet baby Karinne, and her equally sweet mother Kara, I felt so comforted and reassured that this experience can and will be a beautiful experience for me, and Luisa, and our family, and anyone else who wishes to join us. I will be forever grateful for that google search.

The connection I made with Kara brought me to another blog that is also so, SO inspiring, and moving. It is the true story of beloved Vitoria from Brazil and her amazing parents. Vitoria, while in her mother's womb, was also given the fatal prognosis due to Acrania. But, this sweet child lived! And she still does today at 11 months old. I am so moved and inspired by her parents joy and gratitude at the miracle that has happened in their lives. Another amazing example of trading the ashes of life for something beautiful beyond compare.

Beauty for Ashes

I have been thinking about the atonement lately in a different way than I usually think of it. I usually think of the atonement as something for the sinner or the one sinned against. Or I think of it as the way to overcome my own personal faults and short comings. But I have lately been thinking about the Healing power of the atonement. Specifically, the power that it has to heal broken hearts, spirits and souls battered by disappointments, realities, and just the harshness of life, not brought on by sins, shortcomings and faults, but brought on because mortality can be rough. But we are not without something to heal those wounds.

There is a talk that I was introduced to many years ago. The theme of the talk is taken from a scripture in Isaiah; Isaiah 61: 1-3. It is a BEAUTIFUL scripture, and the talk that was given based on this scripture was so thought provoking. It was given by Elder Bruce C. Hafen and is called Beauty For Ashes: The Atonement of Jesus Christ. I feel like I am currently in a process of giving my ashes for beauty; the ashes of a broken heart because my daughter's precious body is defected and I may not have very much time to be with her. And Heavenly Father, through the atonement of Christ is changing these ashes to something much more beautiful than I can fully comprehend at this time.

Tuesday, December 14, 2010


I love being a member of the Church of Jesus Christ of Latter Day Saints. I love having the gospel and knowing the things that I do. I know that this challenge would probably be so unbearable without that knowledge and without the help of the gospel through prayer, fasting, study, priesthood blessings. I am grateful. I am blessed. But its still hard. The start of every day is a challenge. A challenge to be of good cheer. Some days are easier than others. Today is not one of those days. I have not only been really studying the scriptures but the words of our prophet and other church leaders. I have recently gained comfort and peace from reading:

This talk by Elder Neal A. Maxwell called "Enduring Well"

This talk by Sis. Elaine S. Dalton called "Lessons from the Old Testament: Lessons from Ruth and Hannah"

I would recommend both for anyone who is going through any type of difficulty in their life.

Saturday, December 11, 2010

Now What Do I Do

All that I can do is pray, have faith, hope, and serve. Oh, and keep busy. I normally don't like to open up about problems that I go through with a lot of people, but with this challenge, I have felt the desire, and the need to share with people. I think that it is big enough that I knew, or Heavenly Father was prompting me, to do this because I would need the faith and prayers of my family and friends. I don't think I can fully express my gratitude for that faith and prayers, as well as their kind words and, in some case, what I thought were enlightened words.

I had one friend who shared this thought with me, "Thank you so much for allowing us to know of your struggles and exercise our faith and trust in Heavenly Father regarding your precious baby girl. What a wonderful gift you have been given to carry such a choice spirit. How perfect that perhaps her entire earthly experience will be one where she is snuggled so close to her faithful, loving mother's spirit. Our prayers will continue to be with you all." So beautiful, and it really helped lift me when I was feeling particularly low.

And then another friend shared this, "Thank you so much for keeping me informed. I am sorry for the difficulty that you are experiencing, but, I know that it will bless your life. You are both such fine people and you have the spirit with you to bear you up. I think you are involved in a great celestial event that we don't understand at this time. We do know that little Luisa is celestial being that needs a body and yours is being used to accomplish that work. You can be grateful for the opportunity. "Be not weary in well-doing for ye are laying the foundation of a great work. And out of small things procdeedeth that which is great." It gave me a different perspective about this challenge.

Another thing I have done is not only turned to my Heavenly Father in heartfelt, and sometimes tearful, prayer, but also contemplative scripture study. I have really been drawn to the Bible to the stories of Esther, Ruth, Hannah, and Mary, the Mother of Jesus Christ. I have been uplifted and inspired by how these women of the Bible faithfully approached the challenges before them. I have spent quite a bit of time thinking about Mary, the Mother of Jesus Christ, and contemplated how she must have felt knowing how her sweet baby would be great and wonderful, but also be a man of sorrows, and then have His life end in such a violent manner. I have a feeling that she knew the prophecies about the Messiah. She was a holy, righteous woman, so I have no doubts that she knew what her Son, who would also be her Saviour, would have to do. And of course I have studied and contemplated about Jesus Christ himself.