March of Dimes Walk 2011

What an action packed weekend so far! We are so grateful for our family that traveled here from their busy lives to be part of team Lucy's Light tomorrow. We are so thankful for our team and everyone who contributed! We have raised around $6,750 for March of Dimes and couldn't feel any more accomplished for our first year!! Please pray for each and every family and each and every baby represented at the walk tomorrow... I will post photos and an update following the event! Oh, and photos of domapalooza 8 to come soon :) (happy birthday Dominic! Mommy loves you so so much!)

Lucy's Blanket

Lucy's Blanket: Soft pink mohair with Shetland lace border, perfect for a princess! A couple years ago, a friend and coworker's sweet wife made a beautiful and intricate baby blanket for our daughter, Sophia Grace. This blanket- really, I love it to pieces. So much so, that I was initially afraid for Sophie to use it because I didnt want it to get ruined. As an infant, Sophie used to run her fingers through the blanket and she loved the texture between her little hands. It is so soft and delicate, and I absolutely loved it.  Well this same wonderful lady was making another blanket for Lucy. We were so excited to find out what she would come up with to ever compete with Sophie's blanket!  We wondered later if she would still be making the blanket, because as we noticed with so many, this is something that is very awkward for people to discuss and many just avoid the subject of Lucy, or avoid us, all together. She wrote to me yesterday and shared the story of Lucy's blanket. This story touched my heart, this amazing experience from this wonderful woman of God!  She writes of challenges she faced when making the blanket, and how they seem to parallel Lucy herself. But the most touching part of this story is her perseverance, and the end result of this beautiful creation. Much like our Lucy, this gift we will hold in our hearts forever.  She writes:  "I had almost finished the center section of Lucy's blanket when we heard the first bit of bad news.  I was actually crocheting when David came home from work that day and told me what little he knew.  As a sort of act of faith, I finished the center section, praying for good health for Lucy and a mistaken test.When more bad news followed, I found it difficult to think about and put the blanket away.  I was afraid there would be a blanket but no baby." She explains how she later realized we were in our third trimester and she took the blanket out again. She tells me how she changed her approach to Lucy's blanket to that of a prayer blanket. She talks of how a prayer blanket's purpose is to wrap a person in love, to remind that person that God is with them and loves them, sheltering them as a blanket shelters us from cold. I read her words with tear filled eyes and imagined our Creator hands, as a blanket around my baby girl, sheltering her from pain, from any illnesses, from complications.  The I imagined our Savior blanketing us in his arms, protecting US from pain, from worry, I imagined my Father's blanket of peace wrapped around me. She then tells me about more and more problems she had with the blanket. This woman has made many a blanket, and has never experienced these problems on a project. As I am reading her words, I think of how the difficulties with the blanket were mirroring difficulties we were finding with Lucy, and how none of this situation made any sense to us. I remember this feeling of defeat... thinking, just stop already. Just stop with the bad news, and the finding of new problems, just stop. Finally with the frustration, she decided to put the blanket away. She writes of her return to the project:  When I returned to the blanket, I was surprised at how much I liked it.  The soft mohair yarn was comforting; and the pattern was quite pretty.  I couldn't remember what the big problem had been and returned to work with joy and many prayers.  I was still praying for a healthy baby; but more often my prayers were for peace and comfort for Lucy's family. A while later, David told me about Lucy's heart problems; and I added a few tears and another prayer:  freedom from pain. I LOVE the description she gives, about the finished blanket, about Lucy:  It has a soft beauty that makes me smile, just like Lucy.  "soft and delicate, and needing a little extra care."  What a perfect description of our Lucia Faith, "soft an delicate and needing a little extra care". I pray our little girl is here for years and years, so we can tell her of all the people Lucy has touched already, and of all the people that have helped carry her mommy and daddy through all of this. I heard in a song once, that life is short, but it is wide. How perfectly fitting for Lucy, however short her life may be, it is wide in that she has touched many and God is doing some amazing things through her.  The time, the effort, the tears, the prayers... all that have gone into the creation of this blanket means so much to me, and I will treasure it always, I cannot wait to wrap my princess in this blanket made with so much love!

Happy "34-Week-Milestone-Marker", Lucy!

The Milestone:

Lucy is officially 34 weeks! Our doctor says we will begin discussing an induction date if she makes it to her next appointment. At our last doctors visit, Lucy shocked about a half dozen doctors-- one of them even said to us she was suprised to still see us here, and she expected we would have lost Lucy a couple months ago...the sweetest part of this? My daughter's soft smile in her ultrasound pictures. This is Lucy's way of saying, "Our Father, he's got this in the bag."

I Praise Him, I Praise Him, and I Praise Him more.

 

Lucia Faith, at 33 1/2 weeks!

For you created my inmost being;  you knit me together in my mother’s womb. 

He knit her together in my womb. This line echo's through my prayers. He knit her together in my womb. He chose Lucy for me, and me for Lucy. Thank you Lord for this gift of life, gift of motherhood, this gift I will treasure always.
I praise you because I am fearfully and wonderfully made;  

your works are wonderful, I know that full well. 

His works are wonderful! We had a follow up appointment for our Lucy on Friday and our miracle is still hanging on. HE made this blessing, he pieced her together, he gave Lucy her light, and that light beams bright!
 My frame was not hidden from you when I was made in the secret place, 

when I was woven together in the depths of the earth. 

 Every part of this tiny baby is made with His hands. When cells divided, when Lucy's chromosome anomaly first came to be, He was there, watching over his creation, cradling her in His arms.
Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. ~Psalm 139: 13-16

The doctors do not know what lies ahead for Lucy, they cling to this less than 1% chance of survival for Lucy without knowing what is going to happen with her... but He does, our Great Physician. He is not finished with her yet. He knows how each of her special parts are working together to keep her here. He know the plans he has for this sweet girl. I know my Father, in all his perfection, has this all planned out and I follow Him.

Sometimes I like to call them "Week-beginnings"

What a weekend! Although sometimes I like to think of it as a Week's Beginning becuase they are so great! This weekend, I spent Saturday morning at New Hope Church for a Women's Event titled "Say Yes to God" with Lysa TerKeurst. Then Sunday, Pastor John preached an incredible message that shouted so loud and clear to both Eric and I as if we were the only two people in the entire auditorium. THEN we had an awesome time at lunch with sweet friends from our CARE group who prayed with us, prayed for Lucy. What a week-beginning, indeed!

What I took home from "Say Yes to God"...
"Be joyful always, pray continually, give thanks in all circumstances, for this is God's will for you in Christ Jesus. ~1 Thessalonians 5:16-18

I AM Joyful in our current circumstances, joyful that I have been given so far, 33 glorious weeks (today!!) to spend with my tiny dancer. I am prayerful that we have more time with her, and that God is going to perform a miracle in our precious baby girl. I am thankful for God who chose us to be parents to Lucy, to share her with us until she goes to be with to Him.

What I learned from Pastor John's message...

"He is allowing me to go through these trials because He loves me."

Pastor John drove this one home with a baseball analogy. Anyone who knows me knows that I know nothing about baseball, but I love it. I love the sport,and the the feeling you get when you are at a game and the intensity of the players and die-hard fans... I love it. But I know nothing actually about the sport. Pastor John told a story of his son, and his struggles with baseball this year and how he as a father, pushes him through it, and how he is his biggest cheerleader and he is with him every step of the way.

I wept as I imagined my Father, with me every step of the way in this, with Lucy's doctor appointments, and the defeat I feel every time we receive bad news, or they scan over her very sick heart and tell us her heart is weaker, her fluid collection has increased. HE is with me every night that I cannot sleep worried about those kicks I feel will be the last kicks. He is with me every week and I cry with Joy that we have entered another blessed week. Every moment through these trials, He is with me. Always Constant, our biggest cheerleader, there to catch us all when we fall. He allows these things to happen because of His LOVE for us.

What I took away from lunch with our dear friends...

God puts us in places and situations and sometimes we will never know why, and then there are other times that you find out years down the road.

A few years ago, Eric and I were attending Second Baptist Church at a satellite campus in a movie theater. I loved this church. I appreciated the wisdom from the pastor each week, I loved the worship, I was making new friends there, I enjoyed the bible study so much, I volunteered in the nursery and spend so many Sunday mornings surrounded by these beautiful babies and I looked forward to church every week. But Eric didnt. He felt like something was missing, he felt like we needed to be somewhere else, he felt disconnected, and he decided we needed to make a move. I was devastated. But I thought to myself, if he is to lead this family, and lead our family WITH God, HE needs to be where he feels connected. So we left. Our neighbors told Eric about New Hope. Eric jokes about this-- about how he didnt know how to tell me we were going to try an new church so he figured he would just let us all get ready for church, drive off that morning and then he'd drive right past our church, jump on the highway and park at New Hope, thinking I wouldnt notice :) So we did it. We loved it, He loved it. Our neighbors, who are now great friends, had been working on us for a while, inviting us to CARE group gatherings, and then we joined the group. We met amazing people, everyone bringing their special something that makes this group so diverse, so unique. Our group has gone through some changes these past couple years. Families moving, new babies, new careers, new friends...and this is how God has worked in us; through the change. He changed us from different paths to get us where we needed to be when all of these things would be going on in our lives. He placed us in this amazing church, with this amazing group of friends, these God-loving people who would be there for everyone to support each other through all the change. It's so wonderful how a lunch out with friends and a simple prayer can have such an impact; so wonderful to see God's work.


~I pray that I continue to grow in my faith, and I pray that I continue to live in daily joy and gratitude with all circumstances. In His name, I pray. Amen.

A Bit of Beth Moore

"The most debilitating loss for a Christian is not the loss of a loved one, but the loss of Faith." ~ Beth Moore

Wow. Wow, wow, wow.
It became so vivid to me in doing tonight's bible study in "Breaking Free" that I would be in a whole world of mess if I was trying to go at this alone. It saddens me to imagine where I would be, how depressed, lost... alone I would be. If I lost my faith, I'd have nothing.

I have faith in knowing however long Lucia is with us, we will one day go to her. As a Christian I know this. I know if it is God's will for our daughter to leave us quickly, I will be reunited with Lucia in Heaven. I have faith in what we are going through has purpose.

The Diagnosis

In between late January and early February, Lucy was diagnosed with Dandy Walker. This is a malformation in her brain that unfortunately leaves so many questions unanswered. Dandy-Walker Syndrome is a congenital brain malformation involving the cerebellum and the fluid-filled spaces around it. Her key features of this syndrome is something that they discovered initially through ultrasound and they confirmed with MRI. They saw an enlargement of the fourth ventricle and also a partial absence of the cerebellar vermis.

I've read lots about Dandy Walker since the diagnosis and everything that I study gives us either one extreme or the other. The thing about Dandy Walker malformation, is that it can appear dramatically in some children or in others develop unnoticed. Symptoms in early infancy include slow motor development. In older children a child can show signs of cerebellar dysfunction such as unsteadiness, lack of muscle coordination, or jerky movements of the eyes.

Dandy-Walker Syndrome is frequently associated with disorders of other areas of the central nervous system, including absence of the area made up of nerve fibers connecting the two cerebral hemispheres (corpus callosum) and as in Lucy's case, malformations of the heart.

When we received the diagnosis of Dandy-Walker Malformation with her brain, we were devastated BECAUSE we had no idea what to expect or how to help her. So we went home and started educating ourselves about therapies and other things we can do to help Lucy developmentally when she is here. We decided on changes we would make to the home. How we would transform an area into a gym for Lucy to work on development. We were excited about being proactive and collecting techniques that could help her. We talked with our daycare center to see if they would be able to accomodate a child with special needs, should the situation arise that I would need to continue to work outside of the home.

We were so caught up in the Dandy-Walker diagnosis, that we completely shut out the other huge boulder in front of us... the problems with her heart. Simultaneously, we were going to a pediatric cardiologist for Lucy. She saw problems with Lucy, but was hopeful about getting these problems fixed after birth. She detected the fluid around the heart, but didnt think it was as severe at first as the ultrasound findings had shown us. She did see the VSD (ventricular septal defect) in her heart, and she did she that Lucy's heart was three times the size of the 'normal' heart. Lucy also had an interrupted aortic arch, and a narrow Left Ventricular Outflow Tract (LVOT). But everything that she was finding she was confident that it will be touch and go, but her heart could be fixed. After another visit with her, she tells us, to the contrary, Lucia's condition was getting worse, and she did not think she would be a viable candidate for surgery following birth.

A couple hours following this appointment we had another ultrasound follow up where the doctors discovered Lucia had developed hydrops fetalis, a sign to them that the heart was failing and all the 'what-ifs', all the planning, was not even on the doctors minds anymore. We were told Lucy would not make it much longer. No one could define what "much longer" meant. We didnt know if this was a day, a week, a month, until term, no idea. They did tell us the didnt expect her to make it to 30 weeks, much less, to term. As I type this, Lucia and I are 32 weeks! Her heart has deteriorated further since the hydrops were first discovered, but she carries on.

We dont know what the future holds for Lucia, but we do know, not any step of the way have we ever given up hope. We will keep enjoying every moment with Lucy, and we cant wait until the day we meet our beautiful girl, for however long that may be.


We wait in hope for the LORD; he is our help and our shield. Psalm 33:20


I thank Him for his lessons on waiting, lessons on patience, for knowing everything through Him is possible, and I pray that I continue to grow closer to Him in all of this.

In His name, I pray,
Amen.

Dominic's Dream

One of the hardest things we have to say about this journey so far was breaking the news to our Dominic. Dominic is such a special kid, he always have been. All through my pregnancy he would give kissies to Lucy, say special prayers for her, oh, and pray that when she gets here, that she will be a kinder little sister than that Sophie :)

We dont really know how much Sophia understands about what is going on. I think she knows that there is a "baby woosy" in my tummy and she acknowledges that, and I know she senses when we are sad, but I dont think she comprehends much past that. My concentration for Sophie is that we do our best at capturing moments with her and her sister for when she does understand.

When we still didnt know much about what was going on with Lucia, we told Dom all we knew is that the doctors think Lucy's heart is very sick but they are going to continue to watch her and all we can do right now for her is pray for healing. His initial response to us the very first night was, it's okay mommy, you just need to remember that you still have me and Sophie. See what I mean, a very special kid.

So as time progressed, Eric and I knew we would have to tell Dominic what was going on, and we knew we would have to be very particular about our words and how we were going to approach him with this news. We read books, we read blogs, we sought advice from friends who have experience in this field, we sought advice of professionals and we prayed and prayed for the right words to come to us and for us to know the right time to bring this up. We were a couple weeks away from Sophia's 2nd Birthday and Dominic, it proper big brother fashion, was very excited about this party for her. We decided to wait until the day after her birthday to tell him.

We didnt quite make it to the very next day because immediately after we got home from her party, he came to us both and asked if we could be honest with him about what the doctors are saying about Lucy. He asked if we could tell him if the doctors think she is getting better or not. We told him about Lucy. We talked about Heaven. We talked about Lucy being very very sick and how the doctors do not think she would live much longer mainly because of her heart. We talked about how she wouldnt be a baby who would come home with us from the hospital like Sophie did. We talked about how her heart would not be sick anymore when she goes to Heaven because she will have a new body there. And then it happened--

Mom, when Lucy gets her new body, THEN can she come back to us from Heaven? I closed my eyes and held my breath and dug deep for some strength. I hated that the words that were coming out of my mouth were causing my son so much pain. We cried together, we held him tight, he told us he didnt want to talk about it anymore so we didnt. We didnt talk about it for days, maybe it was even weeks. I cant remember, it seems like forever. Then one Sunday as we were leaving church, we stopped off to have lunch. We were having a great conversation with the kids and out of nowhere, he started talking about Lucy, about her heart stopping and about her going to Heaven.

He said he had a dream that she was going to be okay there. He told us in his dream, there is an angel like his age-- except, as he puts it, that guys is way cool because he has wings. He plays games with Lucy and takes care of her there and they have lots of fun. He talked about how he was happy we have taken Lucy to do special things as a family. We've been to the zoo, to the park, to take amazing photos with her in my tummy, to the rodeo, the carnival, all the things he could think of that he'd like to do with his baby sister.

He will always have those memories, I believe. The memories of special times, happy times with Lucy. Happy times when she was here with her family. This is the good stuff, I think this is the reason for the time beyond what the doctors thought she'd be here for, that God has given us with her beating heart, to make these positive memories with her and share her with our kids. Even when Lucy is no longer here with us, if that is His will, she will always be a part of this family, and the kids will always have those memories of their sweet sister Lucy, and the impact she's had on our family. I strongly desire for my kids to hold that bond with Lucy and remember how precious and fragile life is, and treasure every moment that they can breathe in.

This is my prayer for my babies, all three of them, amen.

Fingerprints of God

FINGERPRINTS OF GOD

Steven Curtis Chapman



I can see the fingerprints of God

When I look at you

I can see the fingerprints of God

And I know it's true

You're a masterpiece that all creation

Quietly applauds

And you're covered with

The fingerprints of God



Never has there been and never again

Will there be another you

Fashioned by God's hand and perfectly planned

To be just who you are

And what He's been creating

Since the first beat of your heart

Is a living, breathing

Priceless work of art



And I can see the fingerprints of God

When I look at you

I can see the fingerprints of God

And I know it's true

You're a masterpiece that all creation

Quietly applauds

And you're covered with

The fingerprints of God



Just look at you

You're a wonder in the making

And God's not through

In fact, He's just getting started!

Making Memories/Making Plans

Week after week, we return to our high risk OB/Gyn and hear over and over again that Lucy's condition has not changed, will not change, and that she is not expected to make it much longer. They base this on the fluid around her heart that has increased and the hydrops (fluid in her body) has increased as well. But our tiny dancer is hanging in there. Her heart is still beating, her legs and arms still pack a punch and she, depending on the day, still smiles for the camera and puts on a show.

So how do we take that in? Well, its not easy to say the least. Eric and I have said from day one of their prognosis, when they told us to start preparing ourselves and "making arrangements", that we were tired of being sad about the circumstances, and we would rather take this time to celebrate her, to enjoy her, and share her with our other children, to help make memories with her. In addition to that, we came up with the idea to try and help other families who have been in our shoes or in similar situations. We decided to start a team for the March of Dimes Walk.

Eric and I are part of an amazing church, with members who share a common love for Jesus. We are members of a CARE group within our church, with some amazing God-loving friends. Our church, our CARE group, our family and our friends have been our rock. When we initially heard to news on day one, Eric called a friend from our group and they jumped on arranging a prayer group at our house that very next night with our awesome pastor. Sometimes on our rough nights, the restless ones, I think about that prayer session and of everyone else that is pulling and praying for our sweet baby.

We have faith that God performs miracles, and we ask for a miracle with Lucia every single moment of her life. But we also have faith in God's will and if a healing miracle isnt what he has planned for us, we are obedient to Him to follow whatever path he is taking us on. We have made funeral arragements for our sweet baby and talked with our immediate family about the odds being less than 1% in her favor. But then we've also held on to Sophia's baby clothes and not taken down the crib in the nursery either.

So we will continue to sing sweet lullabies with Lucy, to make memories with her and Sophie and Dom, to cherish every second with her for however long those moments shall be.

I Will Carry You - Selah

I Will Carry You

There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies, wipe your teary eyes
Who could love you like this?

People say that I am brave but I'm not
Truth is I'm barely hanging on
But there's a greater story
Written long before me
Because He loves you like this

I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years

I will carry you
All my life
And I will praise the One Who's chosen me
To carry you

Such a short time
Such a long road
All this madness
But I know
That the silence
Has brought me to His voice
And He says ...

I've shown her photographs of time beginning
Walked her through the parted seas
Angel lullabies, no more teary eyes
Who could love her like this?

Lucia "Lucy" Faith Montoya

January 21, 2011 With our increasingly tough news, Eric and I decided our baby girl needs a name, NOW. We want to pray specifically for our little girl. We wanted to personalize whatever time we do have with her, and while feeling all these bumps and kicks and swooshes, I was having vague conversations with my "tiny dancer", my "twinkle toes"... yes, she needs a name. Lucia: meaning "Light", Before we knew of anything going on with Lucy, I would hum/sing to her "This little light of mine" by Addison Road. Its just a sweet song that I love dearly and it would calm me in the early hours of the morning when I would lie awake daydreaming of our baby and what this new addition brings to our family. Now that we know Lucia is faced with all these obstacles to get here, I picture her light, in her big beaming heart, shining, some times brighter than others, but even just a flicker of light means she is still with us, means that GOD is still and always with us. Faith: meaning "believe and trust in God", I can tell you and speak for Eric as well that our faith is what is getting us through this. Our faith in God, in His purpose for Lucia, our faith in the word of God, our faith that He chose her for us, and our faith that He will get us through whatever comes our way. We call her Lucy. This is Daddy's name for her. Lucy fits our family like a glove. Dommy, Sophie, and our tiny dancer, Lucy. Now when we see her face in our 3D ultrasound scans, we see our Lucy, we see her light. We see our Faith. Yes we see a tiny baby whose heart is sick, we are not blind to that, but her toes-they wiggle, and her hands- they punch, and her legs- they kick and her light- it shines bright!

Understatement: "You are going to feel a little discomfort"

January 21, 2011 The days that followed were filled with a whirlwind of emotions. We went in that next morning for an amniocentesis. This is when we started to hear the redundant questions about whether Eric and I were choosing to continue with the pregnancy. I am in no place to even begin to tell you how this question makes us feel, but yes-- yes, rooms full of doctors and countless counselors, yes, we are moving forward and not giving up on our daughter. We were initially told they thought our baby girl had a rare genetic condition, because of the collection of findings. A- she could have a fatal condition and not survive minutes after her birth. B- she could have Down's Syndrome, or a similar syndrome. I read in a blog once, about a father who was retelling his family's story of his daughter's birth. He tells about how when he first heard the news that his daughter could have Down's Syndrome, he prayed "please, Lord, not Down's Syndrome, please dont let it be Down's Syndrome. Days later when they received their test results and the doctor came back with a prognosis of little to no chance of survival, he fell to his knees and prayed "God, why couldnt it just be Down's Syndrome." Eric and I from the very first mention of our daughter possibly having Down's Syndrome. We both turned to each other and said, this we can handle. We were thankful for tests that would help us find these answers. We pleaded for this to be the extent of our daughter's condition. Now we knew, of course, that the doctors were more concerned with her heart than any other part of her developing body, and very concerned about the fluid surrounding her heart. The genetic counselors words were "Best case, we have a baby with Down's Syndrome or another similar syndrome. But we would still have a baby with Down's Syndrome with a very very sick heart." So the testing continued... MRI, Echo, more ultrasounds, tests on the amniotic fluid, more ultrasounds, blood tests, genetic counseling, genetic testing, and so on. These arent results we received within a day or so, but as a collection this is what we have learned from January to March. Each test confirmed what the doctors were all expecting to see. Each test lessening her odds of survival- each test, strengthening our faith in God.