Dedication

"I prayed for this child, and the Lord has granted me what I asked of Him.  So now I give him [her] to the Lord.  For his whole life he will be given over to the Lord."  1 Samuel 1 

Last Sunday, we publicly dedicated our precious Grace to God at our church.  It was more of a formality than anything, because long before we ever even saw Grace's face, we dedicated her life to Him.

Sunday, we publicly committed to praying for Grace and raising her according to His will and ways.  I realize that the dedication of her life is not a one time thing.  In the scripture above, Hannah said, in regards to her son Samuel, that she will give him over to the Lord "for his whole life".

All of our family and friends that celebrated the day with us

I have always prayed that God will use Grace's life to draw others nearer to Him.  I know that He already has, and I pray that He will continue to do so.

Four Months!

Wow-Grace is four months old now!  Time is flying by as we try and enjoy every second of her life!  She turned four months on July 4th, hence our picture!

What has Grace been up to these days?  Well, she is wearing mostly 6 and 9 month clothes, and size 2 diapers.  We started rice cereal Saturday, so we are adjusting to a new eating schedule.  Generally, she eats anywhere from 4-8 ounces every 4 hours from 6 am to 10 pm.  She sleeps really well at night still!  She is talking so much these days, which we LOVE!  She still enjoys swinging, playing in her bouncer, and playing on her back.  She is making so much progress with speech and physical therapy...we are so proud!  Tummy time is getting better and better.  She is very attentive when we read to her, and she also likes music and her mobile.  Her hair is getting longer and longer, so much so you can't really see her scars much anymore.  She is laughing more and more, and she loves feeling of my face and playing with my hair.  We see our pediatrician for her 4 month check up next week, so I will post her stats after that.  We do have to finish her hearing test, and we are being referred for a vision test.  Please pray that these tests will go well!  Also, please continue to pray for her progress with her therapy, and pray that her shunt will remain infection free.

We are in love with our little girl and are so thankful for the past four months! 

Here are some more pics!  I will post a video of her talking as soon as I get it on my computer.

"Every good and perfect gift is from above..."  James 1:17

Beautiful Heart

This is a picture from our first ultrasound with Grace!  I love it!  You can clearly see her heart, and I remember being able to see it beating at that appointment when I was seven weeks pregnant.  That was one of the best moments of my life.

One of the things many of the doctors commented about, even after the diagnoses of the birth defects, was her "beautiful four chamber heart".  I always loved when they said that, because I knew she would have a beautiful heart, both literally and figuratively.

My baby girl is beautiful, heart and all!  :)

"You hem me in - behind and before; you have laid your hand upon me.  Such knowledge is too wonderful for me, too lofty for me to attain."  Psalm 139: 5-6

Two Weeks Post Op

 Our sweet girl is 2 weeks, 5 days old, and is 2 weeks post op.  Can you tell this baby girl had neurosurgery 2 weeks ago??!  She is our greatest blessing, and we are so thankful for her!

These days, she eats 3 ounces every 3 hours.  She sleeps pretty good, and is most awake and alert at night.  She sometimes requires a diaper change both before and after she eats!  She continues to hate having her diaper changed.  She is too big for newborn size diapers, but she is too small for size 1s.  So, we have to change everything a lot!  She also spits up/vomits a lot.  Her incision continues to heal well.  We continue to follow our doctor's infection control orders...we stay home, and can have very few well adult visitors. 

We have appointments with our palliative care doctor, Dr. B, and our pediatrician, Dr M this week.  We have an appointment with our neurosurgeon, Dr. P next week, and we have an appointment with the pediatric audiology clinic the next week. 

"From the fullness of grace we have received one blessing after another..."

Thankful for our Miracle

I'm awake at almost 2am right now, thinking about my precious baby.  I just called to check on her in the NICU.  She is doing great, and hopefully she will be home on Thursday!  I can't believe I only have one more day without her home!  I CANNOT wait!  No more just seeing her in the NICU.

I just keep thinking about the miracle of her life, and I have to share my thankfulness for Grace.  She is our miracle.  We dedicated her life long ago to our Lord, and I just want to praise Him for all that He has done for her and for our family.

Thinking back, we have had the darkest days.  Days that will forever be in my memory.  The day we found out something was wrong with our precious baby.  The days of ultrasound after ultrasound looking at the birth defects.  The days of doctors appointments seeing and hearing the words "encephalocele" and "agenesis of the corpus callosum" (words I have come to hate).  The days I thought about what I would bury my daughter in.  The day we picked out what cemetery we liked best.  The days of unknown. 

Praise be to our Father for the most glorious day of my life...Grace's birth day!  I will never forget the first time I saw her.  She was perfectly beautiful.  We loved her from the first second of her life more than we thought was possible. 

Just to think about when we didn't even know if she would be stillborn.  Or if she was born alive, we didn't know if we would have much time with her.  We were prepared for the worst.  Now we know that she is a fighter and is doing much better than anyone ever expected...she is doing great!  We are just thankful beyond words!

Thank you, Lord, for our miracle Grace!  Praise be to You for her life.  We dedicate her to You.

Jeremiah 29:11 "'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.'"

Just.can't.help.it.

Sweet, sweet, sweet!

All these pictures are wearing me out!

 Hello world!

The God We Serve is Able

We have a date for our baby girl's birthday: March 4, 2011!  That is two weeks from today.  Grace is also full term now.  I cannot believe we are so close to meeting this little girl who is changing so many lives. 

Last Sunday, God spoke to me through our amazing pastor, and I just wanted to share what He has taught me.  The message was about "Courageous Commitment" from Acts 21: 1-16.  However, scripture from Daniel 3: 16-18 got my attention.

"Shadrach, Meshach and Abednego replied to the king, 'O Nebuchadnezzar, we do not need to defend ourselves before you in this matter.  If we are thrown into the blazing furnace, the God we serve is able to save us from it, and he will rescue us from your hand, O king.  But even if he does not, we want you to know, O king, that we will not serve your gods or worship the image of gold you have set up.'"

The thing that spoke to me in their courageous commitment was the part "the God we serve is able".  Our situations are obviously different, but the same God who was able in the Old Testament is able today.  He is able in our situation to completely, perfectly, and miraculously heal our baby girl.  I believe that with all of my heart.  He is able.  The God I serve is able.  I do not question His ability.

The unknown part is will He?  Will He heal our baby girl in the way that we want Him to heal her?  I want Him to heal her so that she is the baby I have always thought I would have...a "normal" baby.  I want Him to heal her not only for that reason, but also so that she is a testament to His power.  So that others will know His grace.

I just don't know that He will.  But I know that He is able.  I am so thankful for this truth.

Another part that spoke to me was when they said "the God we serve is able to save us from it.....but even if he does not..."  They understood that even though He is perfect and loving, God may not save them from the blazing furnace.  But they were courageously committed to Him anyway.  They wanted the king to know that they would not serve his gods or worship his image of gold even if he did not save them.

I believe that the God I serve is able to heal my baby.  But even if He does not, I want you to know
-that I will continue to serve Him
-that I will always believe in His ability and His goodness
-that His thoughts and ways are not my thoughts and ways
-that I will continue to love Him
-that I believe He will be near to me
-that my baby girl will dwell in His house forever
-that one day I will dwell in His house forever with my baby girl

"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory...for ever and ever!"  To Him be glory.

36 weeks, 3 days

Decisions

Yesterday, we had an appointment with Dr. B in the ADU for a biophysical profile (BPP).  The biophysical profile is an ultrasound that looks at fluid, breathing, movement, and tone.  Everything was fine.  We will now go weekly to the ADU for BPPs, and we will also start going weekly to our OB (the other Dr. B) for BPPs.  Basically, they are looking at viability.  The only other thing we learned was that Grace is breech!  I love her personality!

We also had an appointment with our palliative care nurse practitioner and doctor (another Dr. B).  We talked about many things, and started working on a care plan for Grace.  We made all the decisions we need to make up until Grace is born.  I feel like I should preface this by saying that Chad and I have mulled over these decisions for three months now.  We are the type of people that look at consumer reports just to buy a camera.  So needless to say, we have prayed many, many prayers, along with many others, about the decisions we would have to make for our precious baby girl.  These are the hardest decisions we have ever had to make.  You may not understand them, but they are the right ones for us and for Grace.  We pray that you will understand our hearts.  Every decision that we made is based on what is best for Grace and her quality of life.

-We decided to have a C-section delivery.  I will only have an epidural so that I be as awake/aware as possible.  I want to spend the most time that I can with Grace.
-We decided to make Grace a DNR (do not resuscitate).  This means that if she is born not breathing or without a heart beat, we will not have anything done to resuscitate her (no CPR, no meds, no intubation, no mechanical ventilation).
-Grace will most likely have an MRI shortly after birth, and if we decide yes to surgery, she will probably have surgery to repair the encephalocele the day after she is born.  (Can I just say I HATE the word encephalocele??)
-We also talked about funeral options if Grace does not live.  We haven't made these decisions yet, but we just want to have those plans taken care of so that we do not have to make those decisions later. 

God has given me such peace that these are the right decisions.  I am so thankful for that.


"And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."  Philippians 4:7

In Whom I Trust

"I will say of the Lord, He is my refuge and my fortress, my God, in whom I trust."

Hey!  I just wanted to post an update on what's been going on with Miss Grace.  We had an appointment today.  She was so, so sweet on ultrasound today!  Of course she never lets the doctors have it easy (I love it!).  Her head was basically on my right hip bone!  She also had her hands covering her face the entire time!!  We got to see her beautiful lips and nose, but not her eyes!  She is a funny and I think stubborn little girl!  We love her so much!  There wasn't really any new news, which is what I prayed for.  She does now meet criteria for microcephaly (having a small head), which the doctors said is expected.  I did read on the report that her encephalocele is 5 cm in greatest diameter (originally, it was 3 cm).  The fellow also measured the area where the two bones in her head did not form like they were supposed to, which caused her encephalocele.  It measured 1 cm.  Dang that 1 cm!  It's hard to believe that such a small area caused so many problems.  We also met again with our palliative team nurse practitioner to continue to talk about goals and plans for our sweet girl.  We talked about doing everything versus no heroic measures.  These are certainly decisions that neither we nor any parent should have to even think about.  But that is our reality now.  We are praying for wisdom with decisions and are basing our decisions on Grace's quality of life.  Please pray with us for the wisdom that we need.  It is indescribable the amount of responsibility we feel for this little life.  Her life is truly amazing, and a miracle from God!

I also had my glucose tolerance test today.  After 4 rounds of urine and blood samples, I was finally finished!  I felt like I got out of jail when I was done!  I met my friend Anna for lunch and got something "really good fattening to eat" as my mother-in-law said!  I'm not sure if anything has ever tasted so good!  Thank you, Roosters.  I will know results tomorrow.  I am praying that I do not have gestational diabetes.

Also, we met our new OB, Dr. B, last week.  We really liked her!  We measured 25 weeks (2 weeks behind), and Grace's heart rate was 156-158.  We are so thankful for an amazing team of medical professionals who are here with us. 

Finally, we are trying our best to celebrate our baby Grace's life.  If you have any comments to help with this, please let me know!

Peace

Over the last week especially, I have felt God giving me a heart of peace.  The unknown of Grace's life is one of the hardest things, and up until recently I have really been afraid of what her life means and what her life will be like.  It all seems like chaos to me, to know that what I thought my life was going to be like has been turned upside down.  I guess I've never really had much chaos in my life, thankfully. 

God is giving me such peace in the unknown road we are going down.  Somehow - I know with a lot of prayer by so many interceding on our family's behalf - I feel peace in my heart.

I choose daily (sometimes hour-ly, minute-ly, second-ly) to trust in the peace that God is giving me, instead of the chaos of the unknown in my mind.  This is certainly not always an easy choice.  But He is peace when my fear is crippling.

Isaiah 26:3 - You will keep in perfect peace him whose mind is steadfast, because he trusts in you.

Philippians 4:7 - The peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

You Are All I Need

I love "Healer" by Kari Jobe (thank you to Lyndsey for the CD!)  Just some lyrics from the music:

"I believe You're my healer.  I believe You are all I need...And I believe You're my portion.  I believe You're more than enough for me.  Jesus You're all I need...Nothing is impossible for You.  Nothing is impossible!  Nothing is impossible for You.  You hold my world in Your hands."

I have been a Christian since I was 13.  I have always known that He is all I need, but I just recently have really known this.  There is a difference in knowing something with your head and knowing something with your heart.  To be very honest, I have felt like I need not only Him, but my husband, my family, my friends, my job, etc as well.  Whenever we learned that Grace was not well, I really felt like I needed her to be well.  (Don't misunderstand me...I desire Grace to be well!)  I mean really, is He all I need? 

I don't know if I can clearly communicate this new-found heart knowledge, but God has given me such peace in knowing that He truly is all I need.  Even if everything in my life was turned upside down (I certainly feel like this is the case lately), He still truly is all I need.  When all is stripped away, I know that He is still with me.  He is more than enough for me.  More than enough.  Wow.  I believe it.  He is ALL I need.

Matthew 6:8 "For your Father knows what you need before you ask him."

Isaiah 58:11 "The Lord will guide you always; he will satisfy your needs in a sun-scorched land and will strengthen your frame."

Philippians 4:19 "And my God will meet all your needs according to his glorious riches in Christ Jesus."

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.

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.

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.