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..."

Pictures!

 Happy Saint Patrick's Day!  Last day in the NICU!  3-17-11  6lb8oz

 Wearing my fancy dress my Daddy picked out

 On my way home!

 My Momma is so happy

 I'm HOME!  See my furry sister, Maddy?

 I'm so little in my crib

Happy 2 weeks old!

Home

We are HOME!  We had our first night together as a family last night.  It went well.  We are learning and having fun!  I will post pictures soon!  :)

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!

Birthday

Happy one week birthday, my darling!  We love you to the moon and back!

Post Op

We are loving every minute holding our precious Grace like a "normal" baby now!  It is amazing!  She is doing great!  Yesterday, we spent about six hours holding her.  Her incision looks great, and her doctors are very happy with how she is doing.  We got there and found a sweet pink bow in her hair, thanks to her nurse!  They extubated her early yesterday morning, and her vital signs and labs have been great.  They discontinued all her IVs except for one, which was giving her IV fluids to keep her hydrated.  We got to feed her for the first time after surgery around 2:00 pm yesterday.  She did great!  She took two ounces!  Her Nanny and Pawpaw got to visit with her some yesterday too.  We are so happy with how Grace is doing!  We may get to bring her home as early as next Wednesday!  She is such a miracle, and all praise to our Father!

I thought you would like to see some pictures of our miracle baby!

One of my favorites!

Morning of her surgery!

My first bow!  :)

First time holding her after surgery!

Sweet baby girl :)

Final update

We just saw grace! She is now in the nicu. She did great! The surgery was a great success! Thank you so much for your prayers! We are so very thankful.

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