Carrying Grace

We got back tonight from our Thanksgiving celebrations.  I worked Thurs from 7-3 while Chad celebrated the holiday with his family in Magee, and as soon as I got off work, we went to Pontotoc to celebrate with my family.  It certainly wasn't the same this year as years in the past.  Chad and I have a different perspective now with all that has happened in our lives over the past few weeks.

I guess I should give a brief update.  We had an appointment with the ADU Wed.  We got to see our precious baby girl on ultrasound.  She is beautiful!  The person that did the ultrasound was so sweet...she did a 4D ultrasound for us!  We got to see Grace in greater detail than we have before...we determined that she definitely has my nose!  She was just waking up for us during the ultrasound.  She is such a sweet girl!  Anyway, we met with Dr. B after who basically said no changes since our last appointment.  Then we met with Ms. J from the palliative care team.  The meeting was great.  We did learn about another diagnosis for Grace, which is agenesis of the corpus callosum.  I told J that we had never heard of this diagnosis before, either that no one has ever told us this diagnosis or we have been too overwhelmed with information/emotion that we haven't heard this diagnosis.  Basically, with the two diagnoses (encephalocele and agenesis of the corpus callosum), Grace could have up to severe neurological delays.  J suggested that we plan goals for the pregnancy, Grace's birth, and after Grace is born.  She suggested that we plan for the best outcome, the worst outcome, and a middle outcome.  I asked her what she thought about what the neurosurgeon had said the day before, and she said she thought that he focused just on the encephalocele, not on both diagnoses.

So Chad and I celebrated Thanksgiving knowing what we know.  Chad said he felt angry and like he didn't have anything to be thankful for this year.  Sometimes the grief we have is overwhelming.  I can't say I didn't feel the same way at some points during our Thanksgiving celebration.  But I chose and am choosing to be thankful for the life that is inside of me.  I know it's different for Chad and me, since I am carrying Grace, but I choose to celebrate her life.  She is alive.  I can feel her.  I am constantly reminded of her life.

I do not understand why we are having to go through this.  Is there really an answer to why?  But I trust that God is in control.  He will carry us through this.  He is carrying us through this.  Because, despite what anyone thinks or says, it is only because of Him that we are able to live through this.

So even though I sometimes feel angry and like I don't have anything to be thankful for, I choose to be thankful that He chose me to carry my baby Grace.  Because no one could love her like I love her.  No one else could be her Momma.  I pray that He receives the glory.

Beautiful

 

Before you ever took a breath

Long before the world began

Of all the wonders He possessed

There was one more precious

Of all the earth and skys above

You're the one He madly loves

Enough to death

You're beautiful

You were meant for so much more than all of this

You're beautiful

You are treasured, You are sacred, You are His

You're beautiful

Thanksgiving

I just wanted to post some updates and ask that you continue to please pray for Miss Grace.

I spoke with a neurosurgeon today, who basically gave me the only positive news that we have received since Grace's diagnosis.   Let me preface this by saying that I am a very realistic person.  I am also a planner.  Throughout all of this, I have wanted and continue to want to prepare for the worst possible outcome.  My faith allows me to believe in miracles and to have hope.  But today, I received reasons to believe in miracles and to have hope from a medical perspective.

The neurosurgeon basically said that because Grace is and will continue to develop throughout the remainder of my pregnancy, we will not know for sure what we are dealing with until after she is born (she will have an MRI after she is born to determine exactly what we are dealing with).  He also said that Grace's encephalocele is small, and it contains a small portion of her brain, (her cerebellum) as well as cerebrospinal fluid.  He said that the amount of brain involved in the encephalocele can change, meaning the amount can get smaller or it can get larger as Grace develops.  

The current plan for Grace after she is born is to have surgery to repair the encephalocele, and most likely to have a shunt to correct her hydrocephalus. 

The neurosurgeon said that Grace could have up to normal functioning (today was the first time I have been advised of this possibility).  His advice was to prepare for the worst, but to hope for the best.  Now I know--from a medical perspective--what the best could be.

Please pray for the best outcome...
-that the amount of Grace's brain involved in the encephalocele will get smaller, even that no amount of brain will be involved
-that the part of Grace's brain that is involved in the encephalocele will be functioning
-that Grace's functioning will be normal
-that our God will heal Grace, that He would continue to fulfill His purpose for her life, and that He would continue to draw us and others nearer to Himself

Thank you so much for joining us in prayer for our baby girl.  We are very thankful that you would choose to pray for us and to love our baby girl.  Thank you is not enough.

I am thankful for Grace's medical "team", reasons for hope, the prayers of so many family and friends, my supportive husband Chad, and of course our very special baby Grace.  We are so blessed.

Please also pray for us as we have another appointment with the ADU tomorrow.  I know we will have another ultrasound (!!!) and will meet with the palliative care team.  I'm not sure what else our appointment will involve. 

Psalm 34:18

"The Lord is close to the broken-hearted and saves those who are crushed in spirit."

Desperate Love

Yesterday, we had our 24 week appointment, and as I drove to the appointment, I realized that it was only 1 month ago that we learned Grace's diagnosis.  It feels like it's been 10 years since then.  All of the emotions of that day quickly came back to my mind.  I wish I could LIVE in the moment of learning that our baby was a girl--when we knew that she was PERFECT--before we knew that something was wrong.  I wish I could live in that moment forever.

Last night was hard.  We grieved like we haven't before.  I asked WHY...why if God could let this happen to our baby girl...the baby we desperately wanted and waited for (the baby we continue wanting and waiting for)...why He can't just fix it?  WHY?

Then I realized that He CAN fix it.  He is the One who CAN.  I don't understand why He hasn't, and I won't understand if He doesn't, but maybe I'm not supposed to understand.  I'm supposed to trust.  I trust Him.  I will trust Him.  Because He made Grace fearfully and wonderfully.  Because her frame was not hidden from Him.  Because He was not surprised.

From Angie Smith's "I Will Carry You": "...in this life, on this Earth, I am going to hunger.  The hunger will not be satisfied.  It cannot be.  And when the wind blows through my soul and tempts me to despair over the lot I have been given, I cling to the truth that the Lord has something better for me.  It won't always be like this.  You will know Him fully one day, and all the hurts that consume you in this moment will vanish and be forgotten.  I know it sounds crazy.  I guess it's crazy to think that a God could love us so much that He would want to create a place to be with Him eternally, where we can revel in His perfection and rest in true peace."

Isaiah 43: 1-3 "But now, this is what the Lord says - he who created you, O Jacob, he who formed you, O Israel: 'Fear not, for I have redeemed you; I have summoned you by name; you are mine.  When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you.  When you walk through the fire, you will not be burned; the flames will not set you ablaze.  For I am the Lord, your God, the Holy One of Israel, your Savior.'"

My heart is full of desperate love for Grace.

String of Pearls

" What we have once, we can never lose.  All that we love deeply becomes a part of us."  -Helen Keller

My heart is blessed because of a Momma named Laura Huene, founder and president of String of Pearls.  String of Pearls is "a non-profit dedicated to providing a nurturing and safe place for families as they navigate the path following a fatal prenatal diagnosis that will result in the death of their baby prior to, or shortly after birth."  Today, I received a keepsake kit from String of Pearls that will help us celebrate the life of our sweet baby girl Grace.  Their services are provided without cost!  Please join me in donating in honor of Grace to String of Pearls (www.StringofPearlsOnline.org or PO Box 630454; Littleton, CO 80163-0454).  Thank you to Laura and String of Pearls! 

Also, please pray for us tomorrow as we see Dr. M for the last time!  We are sad, but want to do everything we can for our baby girl, so we will be changing to see a new obstetrician, Dr. B, so that Grace can be delivered at UMC.

Update!

This post is an update to a prayer request.

OUR MICRO ARRAY WAS NORMAL! 

We are so thankful to our God for answering this prayer!  I think throughout all of this, the only positive news we have received was that our amniocentesis and micro array were normal.  This means that Grace's condition is not genetic, and that the chances of our future children having encephalocele or any other genetic problems is rare.

Thank you so much for continuing to pray with us and for Grace and Chad and me, our family, and our friends as we continue to live this life.

All of the praise and glory belongs to our Father.  

Audrey's Story - part 3

Audrey's Story - part 2

Audrey's Story - part 1

Audrey's Song

John 11

I am reading several books currently, and one of them is "I Will Carry You" by Angie Smith.  The book is about Angie's baby Audrey, who changed the world.  I will post Audrey's story.

Something that I read from her book is ministering to me today.  She writes about the story of Lazarus from John 11.  Angie wrote she became fascinated by the story of Lazarus.  She wrote, "The Greek word translated Lord...is kyrios and denotes sovereignty."  Lazarus' sisters Martha and Mary called out to Jesus as the One who had the power to heal, recognizing His dominion over everything, including life and death.  Angie wrote, "A plea offered in submission and humility to the One who holds the fate of their brother in His hands - what a beautiful image of trust."

This is the part that is really ministering to me.  Angie wrote, "What Mary and Martha say in their message to Jesus is not as interesting to me as what they don't say.  They don't refer to Lazarus by name, nor do they ask Him to heal their brother.  While we can infer that they were conveying a need for help, they don't actually ask Him to do anything specific.  This request is similar to the one that Mary, the mother of Jesus, made at the wedding feast in Cana.  We are told that as the wine started to run out, she said to Jesus, 'They have no more wine.'  She doesn't explicitly tell Him the solution she is looking for but rather states the problem and waits to see what He will do about it."

This ministered to me because ever since I have learned about Grace's diagnosis, I have prayed specifically for things based on the solution I am looking for: Grace to live and to be "normal," for her to have quality to her life, for her to know me as her Momma, and Chad as her Daddy, and to know that our love for her is forever.

Angie also wrote, "I am pretty comfortable saying He is in complete control until the ground grows weak beneath me.  At that point I tell Him what He should do to fix it.  While I know there isn't anything wrong with asking God to intervene, there is a gentle surrender that I was drawn to in this story."  She continues..."Recognize who He is - kyrios - and tell Him the problem.  Leave the rest to Him."

God, I surrender all to you.  I surrender Grace to you.  I recognize your sovereignty, your power to heal (both here on earth and in heaven), and your dominion over everything.  I trust you.  Grace, the one you love, is sick.  I leave the rest to you.

Death and Life

I have focused a lot of time thinking about Grace and her diagnosis and what it means for her and our family.  I have thought mostly about the worst outcome, trying to prepare myself for what may happen in our future and for decisions that will surround that outcome.  To be honest, I have thought a lot about Grace dying.  I guess in my mind, I have thought that her dying would be the worst outcome that could happen.  However, last night, I started thinking about Grace's life...I have focused so much on Grace dying, and not so much on her living.  But I've discovered that I'm also afraid of her living.  I'm afraid of what her life will be like.  I'm afraid of what mine and Chad's lives will be like.  I hate the unknown of everything Grace's diagnosis means.  Will she know us?  Will she suffer?  Will she have any quality to her life?  What will her daily life be like?  Will she know that we love her?  I'm afraid of the answers to those questions.  Most of all, I hate that my baby girl has to live with this.  I pray for God's mercy and grace for her life.  I choose to trust Him...I struggle sometimes with that choice, but then I realize that I really have no other choice.  He is in control of Grace's life.  I trust that He made her fearfully and wonderfully, that her frame was not hidden from Him when she was made, and that all of the days ordained for her were written in His book before one of them came to be.  So I choose to trust Him.

Church

Today was the first day I have been to church since we learned of our news with Grace.  To say I was a little anxious would be an understatement, but I knew it was important to be there to be surrounded by my church family, the body of Christ.  We went to Sunday school first, and our lesson was about hope and very appropriate for our circumstances today.  Then we went to morning worship.  The first thing that was said was, "today is all about grace".  Chad and I looked at our bulletins, and we noticed things like "Wonderful Grace of Jesus," "Amazing Grace My Chains Are Gone," "Grace Greater Than Our Sin," and Jonathan's message "The Law vs. Grace" (Acts 15:1-35).  One of the songs says" Grace, grace, God's grace..."  This reminded me of Chad's and my dedication of our baby Grace to our Father, that she is His, and we are simply blessed to be her parents.  Through everything in worship, it was like God was reminding me that He is with us and He will sustain us throughout our circumstances.  While we have no idea what our future holds, we will trust Him to be with us and sustain us, to fulfill His purpose for Grace's life, and to bring Himself glory through our lives.  Thank you, Lord, for reminding us of Your grace.

Healing is in your hands - Christy Nockels - Passion 2010

"In all things, we know that we are more than conquerors.  You keep us by Your love.  You keep us by Your love!"

Thank you, Emily. 

Draw Me Nearer - Meredith Andrews

This song is ministering to me...

For your nearness, Lord, I hunger

For you nearness, Lord, I wait

Hold me ever closer, Father

With such a love I can’t escape

For your nearness I am hoping

For your nearness, Lord, I long

I have no need of any other

I have found where I belong

Yes, I have found where I belong

So draw me nearer, Lord

Never let me go

Closer to your heart

Draw me nearer, Lord

Draw me nearer, Lord

In your nearness there is healing

What was broken now made whole

Restoration in its fullness

Lasting hope for all who come

In your nearness I take shelter

Where you are is where I’m home

I have need of only one thing

To be here before your throne

To be here before your throne

So draw me nearer, Lord

Never let me go

Closer to your heart

Draw me nearer, Lord

Draw me nearer, Lord

Never let me go

Closer to your heart

Draw me nearer, Lord

Draw me nearer, Lord

And keep me here

Keep me here

There’s nowhere else I’d rather be

So keep me here

Keep me here

There’s nowhere else I’d rather be

There’s nowhere else I’d rather be

So draw me nearer, Lord

Never let me go

Closer to your heart

Draw me nearer, Lord

Draw me nearer, Lord

Draw me nearer, my Lord

Our life...our prayer

I just wanted to post an update on Grace and her prognosis/plan. We are always learning more about what Grace's diagnosis means, and this is what we know as of today.

We met with two pediatric surgeons, as well as our genetics counselor and nurse. They confirmed with our fetal MRI results that Grace's encephalocele contains part of her cerebellum, but that there are no other known anomalies. Because of this, the probability of me delivering Grace full term and alive is good. Surgery to repair Grace's encephalocele will probably be soon after delivery.

One of our main questions today was what will Grace's quality of life be. After researching occipital encephalocele, I have learned that Grace could have severe neurological defects. Dr. L confirmed this. He said basically that Grace probably would not have much/any quality of life and probably would not know the world around her. Even though Chad and I were not surprised because of this news, it was still not easy to listen to it confirmed.

Our main prayer for Grace is that God will fulfill His purpose for her life...however long or short her precious life will be. That is our main hope. We will trust God to fulfill His purpose. Secondly, we are also praying that Grace would not suffer in her life. Because of this, the palliative team will be involved with her care. We are praying for wisdom with decisions for our baby girl.

I pray daily for a miracle (she is already a miracle!) and that Grace knows how much her Momma and Daddy love her. We love her so much. We choose to celebrate Grace's life.

Today

Some quotes from a new book I'm reading (thanks, Casey!) "Trusting God Even When Life Hurts" by Jerry Bridges. I am keeping these in mind on this big day...
-"God's plan and His ways of working out His plan are frequently beyond our ability to fathom and understand. We must learn to trust when we don't understand."
-"We must learn to trust God if we would glorify God in them [circumstances]."

Psalm 50:15:
And call upon me in the day of trouble; I will deliver you, and you will honor me.

Thank you for your prayers today!!

First Post!

Matthew 11: 28-30
"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light."

I Will Lift my Eyes - Bebo Norman
I will lift my eyes to the Maker of the mountains I can't climb. I will lift my eyes to the Calmer of the oceans raging wild. I will lift my eyes to the Healer of the hurt I hold inside. I will lift my eyes to You.

Why?

This blog is about different things God is teaching me through the life of our baby girl Grace. God has used her, His Word, music, and others to teach me. These are the things I will blog about. Many people all over the world are praying for our family...THANK YOU!!! Please join us in prayer for our special baby and for our family.