Restoration Hope, Easter, & Update

I had several things I wanted to blog about, so I decided to write about them in the same post.  :)

First of all, one of my dear friend's brother Jason and his family (wife Brandy and three children) will soon be leaving to minister to the poor and fatherless in South Africa.  They founded a non profit organization, called Restoration Hope.  Jason and Brandy write about their calling and work on their website, http://restorationhope.org/.  One thing that stood out to me was what Brandy wrote in a post about starting Restoration Hope.  They had visited South Africa, and while there, God spoke to them.  She wrote: "Our hearts were full, not of pity, but of a deep sense of responsibility to be better stewards of the life God had entrusted us.  God led us to a place where we could no longer sit in the comfort of our normal life while the cries of this people echoed in the darkness."  Anyway, their writing and vision for this organization and their love for the people of South Africa has touched my heart.  Please support them through prayer, and possibly financially as they serve Him and others in South Africa. 


On to Easter...Grace went to church for the first time Easter Sunday!  We were so excited!  She was so beautiful I almost cried when I dressed her!  We also went to PawPaw and Nanny's house after for lunch.  It was so good to have the family all together again after so long of being apart.  One of my favorite Easter songs this year was by Casting Crowns...I love this part: Living He loved me, dying He saved me, buried He carried my sins far away, rising He justified freely forever, and one day He's coming, oh glorious day!!!  Here are some pictures from our Easter.

 Beautiful, smiling baby girl!

 The Golden family

Family of three

Grace updates...

We had an appointment with Dr. P, Grace's neurosurgeon, Monday, and after her CT, he said Grace has hydrocephalus and needs a shunt.  She will have shunt surgery May 18.  Even though this means another surgery, we are thankful that it happened in a non-emergent way, and that I'll still be home on maternity leave.  If she was going to have hydrocephalus, this is the best way it could happen.  

Also, First Steps came to evaluate her on Tuesday.  They were really nice!  A PT and a ST, along with our case manager, came to evaluate her.  They determined that she needs PT once a week, OT once a month, and another ST evaluation.  They were mostly concerned with her motor development (she scored 0-1 month in her motor development).  She had the highest score in her social development (2-4 months)!  They also are referring her to have her vision tested.  Basically, their concerns are: Grace favors turning her head to the left side (they want her to be able to turn it 180 degrees), she cannot track an object well especially to the right side (they want her to be able to track objects 180 degrees), she has her hands in a closed fists position most of the time (they want her to have them open more), she can't really hold objects (they want her to actively hold objects and look/attend to the objects), she has head lag (they want her be able to be pulled to a sitting position without head lag), she doesn't have great head control (they want her to have better head control and to look at us during tummy time), she rarely puts her hands to her mouth (they want her to have more hand to mouth motions), and her leg muscles are tight (they want us to stretch her legs out daily).  It may take up to 30 days for her to receive these services, so they taught me how to work with her until she starts PT/OT.  I was honestly surprised that they had so many concerns, but I am thankful for the First Steps program!  Our goal is early intervention, and over time, hopefully Grace can overcome these things...she's certainly overcome so much already! 

Video

Grace woke up in a great mood from her nap today, so I got out the video camera!  I've never inserted a video before, so we'll see how this works...

PLEASE ignore me!!  I know you just want to see Grace anyway :)

2 month stats

We had our two month check up at the pediatrician today (technically, she's 7 weeks this week)!  Grace woke up in a great mood and has been all smiles all day (except for when she got her shots and when she was in the car).  The check up went great...her weight was 8 lb, 14 oz (25th percentile), her length was 21.5 in (between 25th and 50th percentile), and her head circumference was 35cm, which of course is small because she has microcephaly (although it was just below "normal")!  Her pediatrician did change her formula to Gentlease, so maybe we can stop taking our medicine for fussiness/gas.  She got three shots at the end, and we both did great!  :)  And bonus, she's been happy ever since we got home!

I thought this picture was so funny!  Before we left, when I was putting her in the car, I noticed her head band was on her eyes!  She didn't seem to mind at all!

Evidence...

And here are some more pictures to make you happy :)

Bundle of baby :)

Sweetness.

You are Good

I sat tonight, rocking my sweet baby who smelled like lavender, thanking God for her and the miracle of her life.  As I was praying, I found myself wondering why He doesn't always save babies.  Why can't every baby be a living miracle?  I know so many mommas who are suffering because of the death of their babies.  I don't have any answers, but I do know that He is good.  Even in our suffering, He is good.  In our joy, He is good.  In our darkest days and on the most glorious days, He is still good. 

I heard this song "You are Good" on my Sing Over Me CD, and it really ministered to me in my questions.  Here are the words:

When the sun starts to rise
And I open my eyes
You are good, so good
In the heat of the day
With each stone that I lay
You are good, so good

With every breath I take in
I'll tell you I'm grateful again
When the moon climbs high
Before each kiss goodnight
You are good


When the road starts to turn
Around each bend I've learned
You are good, so good
And when somebody's hand
Holds me up, helps me stand
You are so good

With every breath I take in
I'll tell you I'm grateful again
Cause it's more than enough
Just to know I am loved
And You are good

So how can I thank You
What can I bring
What can these poor hands
Lay at the feet of a King
I'll sing You a love song
It's all that I have
To tell You I'm grateful
For holding my life in Your hands

When it's dark and it's cold
And I can't feel my soul
You are so good
When the world is gone gray
And the rain's here to stay
You are still good

So with every breath I take in
I'll tell you I'm grateful again
And the storm my swell
Even then it's well and You are good

One Month

Praise

First an update on baby girl - she rules our home!  I don't know if she has had "her days and nights mixed up" or if something else is going on, but pretty much every night from after her feeding around 8-10 to about 2-3 hours later, she cries and we cannot make her stop!  We have tried different things, including a new medicine.  We are keeping our fingers crossed...the past two nights she has done good!  We are sooo tired!  She is eating anywhere from 2-4 ounces every 3 hours, but she is starting to go sometimes 4 or 5 hours in between feedings, especially at night.  She is a growing girl!!  We had an appointment with neurosurgery Friday.  She gained 1 pound (1 pound in a week???  she was dressed and her diaper probably needed to be changed, so I don't think she really gained that much).  That was a little crazy!  The neurosurgeon was pleased with how she was doing, but he did order a CT.  He said her ventricles were moderately enlarged, and that we were probably headed in the direction of needing a shunt.  We knew this was a possibility, since most patients with encephaloceles also have hydrocephalus.  I was preparing myself to be admitted to the hospital that day, but he said she wasn't ready for a shunt yet.  We have an appointment to see him again at the end of April, and we'll also have another CT then.  We are praying that she will not develop hydrocephalus, but if she does, I pray that it will not be emergent or scary. 

I also wanted to post PRAISE to our heavenly Father for our sweet girl!  During my pregnancy, I listened to several CDs (Steven Curtis Chapman, Selah, and a CD my friend Lyndsey made for me).  I have listened to them since I had Grace, and it brings back so many memories of thoughts and feelings I had when I was pregnant and we did not know how she would be.  I just wanted to share parts of songs that ministered to me during my darkest days when I prepared for my sweet girl to either to not live or not have quality of life.  I still want to be clear that Grace could still have developmental delays, and we will not really know her prognosis until she is older, but we are praying that God would continue to bless us with miracles!

"Buried deep beneath all our broken dreams we have this hope out of these ashes, beauty will rise.  We will dance among the ruins, we will see Him with our own eyes.  Out of these ashes, beauty will rise.  For we know, joy is coming in the morning."  

"I will proclaim it to the world.  I will declare it to my heart.  And sing it when the sun is shining.  I will scream it in the dark: You are faithful.  You are faithful.  When You give and You take away, even then still Your name is faithful.  You are faithful.  And with everything inside of me, I am choosing to believe You're faithful." 

"I will trust You, trust You, trust You, God, I will.  Even when I don't understand, even then I will say again, You are my God, and I'll trust You.  And with every breath I take, and for every day that breaks, I will trust You, I will trust You.  And when nothing is making sense, even then I will say again, God, I trust You, I will trust You.  I know Your heart is good.  I know Your love is strong.  I know Your plans for me are much better than my own." 

"Life breaks and falls apart, but we know these are places where grace is, soon to be so amazing.  It may be unfulfilled, it may be unrestored, but when anything that's shattered is laid before the Lord, just watch and see, it will not be unredeemed."

"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." 

"You hold my every moment.  You calm my raging sea.  You walk with me through fire, and heal all my disease.  I trust in You.  I trust in You.  I believe You're my healer.  I believe You are all I need.  I believe.  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."   

"Lost are saved, find their way at the sound of Your great name.  All condemned feel no shame at the sound of Your great name.  Every fear has no place at the sound of Your great name.  The enemy, he has to leave at the sound of Your great name.  Jesus, worthy is the lamb that was slain for us.  Son of God and man, You are high and lifted up, and all the world will praise Your great name.  All the weak find their strength at the sound of Your great name.  Hungry souls receive grace at the sound of Your great name.  The fatherless find their rest at the sound of Your great name.  The sick are healed, the dead are raised at the sound of Your great name!" 

"You are good, You are good when there's nothing good in me.  You are love, You are love on display for all to see.  You are light, You are light when the darkness closes in.  You are hope, You are hope, You have covered all my sins.  You are peace, You are peace when my fear is crippling.  You are true, You are true even in my wondering.  You are joy, You are joy, and the reason that I sing.  You are alive, You are alive, in You death has lost its sting.  And oh, I'm running to Your arms, I'm running to Your arms.  The riches of Your love will always be enough.  Nothing compares to Your embrace.  Light of the world, forever reign!  You are more, You are more than my words will ever say.  You are Lord, You are Lord, all creation will proclaim.  You are here, You are here, in Your presence I'm made whole.  You are God, You are God, all for else I'm letting go."  

"Our God is a consuming fire, burning holy flame with glory and freedom.  Our God is the only righteous judge, ruling over us with kindness and wisdom.  And we will keep our eyes on You.  We will keep our eyes on You.  A mighty fortress is our God.  A sacred refuge is Your name.  Your kingdom is unshakable.  And with You forever we will reign."

"You will be safe in His arms, you will be safe in His arms.  Cause the hands that hold the world are holding your heart.  This is the promise He made, He will be with you always.  When everything is falling apart, you will be safe in His arms.  These are the hands that built the mountain, the hands that calmed the sea.  These are the arms that hold the heavens, they are holding you and me.  These are the hands that healed the leper, pulled the lame up to their feet.  These are the arms that were nailed to a cross to break our chains and set us free!"

Happy month old birthday, baby girl!!  Your Daddy and I love you to the moon and back!