Psalm 139:13-16

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. 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. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be."

Monday, April 4, 2011


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!


  1. Praise the Lord! She is so beautiful and most definitely a little miracle!

  2. oh goodness...she is just the cutest thing ever. I check everyday to see if you have updated - so glad to hear that she is ruling the home! just as it should be! the day and night flipping is so hard! My little one was born at 28 weeks and had a grade 3 brain bleed - which means his ventricles were HUGE! the neuro doc felt that it had happened in untero and there was NO rhyme or reason. so baby had ct's once a week for 44 days (his time in the nicu)coupled with his head being measured everyday PLUS MULTIPLE Spinal Taps to remove the extra fluid - no shunt for him! neuro doc continued to monitor him until he was almost one, at which time the last CT showed NO SIGN of any enlargement of the vents - those stinkers had returned to normal. It was the craziest thing - of course sweet neuro doc smiling at me said "i told you it would work" his body just needed time to heal (which was reason for the spinal taps.)

    again - glad your home is being ruled by sweet baby Grace. enjoy every second of it! i've got a screaming buck wild 2 year old on my hands right now! ekkkkkk

  3. She is such a little doll!!! I'm so glad to read an update, I kept wondering how Grace was doing. :) So good to see how well she's doing.
    I love her little white dress and bow, so beautiful!!!

  4. What a doll. She is such a beauty and what a miracle. I see she likes her pacifier. You have got to get on and look at the cute animal pacifiers. My one year old loves the same kind and I found those and it has been such a blessing.

  5. We saw your dad last night at West Heights where our son Jonathan is involved with Life Action. He gave me your blog. I am so blessed by what you have written. What an incredible opportunity and blessing to be the mother of Grace! You and Grace are so beautiful. In His Love, Alan and Danette Becker

  6. So wonderful that she is a month! Praise God for the gift he's given you in her!!

  7. What a sweetheart with such a pretty bow. If they had been around when my baby girl was little, I'd have some cute pictures like yours! My Sarah was fussiest in the evenings and I remember her wanting to nurse every two hours. Mommies are always going to be tired, so we get used to it. Prayers and Praises! ♥♫

  8. Grace is truly a beautiful baby. I enjoy reading your updates and glad that she is doing so well.

    Have the doctors given you a long term prognosis on Grace?

  9. What a sweet blessing! Continue to post those adorable pictures! We love to read updates on her!

  10. she is gorgeous!! i love those songs too & know they will be precious to you the rest of your life. let me assure you the nighttime fussiness is absolutely NORMAL. a lot of people call it the "witching hour" b/c newborns are known to be really fussy at night. it will pass, honest!! enjoy your precious miracle.

  11. She is truely a blessing! I can't believe how much her looks are changing. She is beautiful!!!

  12. Hi there! I made my way here from Kelly's Korner and have been reading your blog for awhile. While our stories are different, we were told many things at our 20 week scan about our baby girl too. Some similiar to you, some different...Fast forward almost two years and things are better than we could have imagined. Sophie was released from the neurosurgeon this past August and is now just being followed by the eye dr. (we go today actually). Her neurosurgeon recommended it awhile ago due to the enlarged ventricles and excess fluid on the brain (she had at the time we were being followed). The ventricles decreased and the fluid absorbed with time, which our neuro had hoped for with Soph. We were followed for a year and three months, with frequent MRI's before we were released. Soph does not have a shunt and is doing well today. One of my neuro's comments on the shunt surgery (if it was needed), was..."so Sophie may possibly not be able to sky dive." Basically letting us know, that there are worse things...even when it may not seem like it at the time. I've been praying for sweet Grace and your family and will continue to do so. Sorry for the long post, I was looking for an e-mail but could not fine one.

  13. I have been following your journey for a while now - found you thru Kelly's Korner. Your Grace is so sweet - you are very blessed.

    My daughter had the same fussiness at night around those times and she ended up having relux and we put her on zantac and it helped sooo much. May be worth checking with your pediatrician.

    Hope everything continues to go so well. Thanks for sharing.

  14. Just wanted to tell you that I have been reading your blog & my son was born with an encephalocele & is 2.5 years old. We have a support group, just for Mommy's & Daddy's with children born with or that have been diagnosed in utero with encephaloceles on Facebook. It is called Encephalocele Mommy's & Daddy's. I would love for you to join & see all of our miracles & have Grace as another one of them! My email is if you have any questions or trouble finding the group on FB. She is a beautiful girl!Hope to see you soon!