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.