Grace's Birthday

Our baby girl has been home now for a week!  We saw our palliative team today, and the biggest news is that Grace has gained almost 6 ounces since she was discharged from the NICU!  Go baby girl!  We are so in love with her.

I wanted to post about my perspective of Grace's birthday, March 4, 2011, mostly so that I will not forget.  So here goes...

First, I guess it starts with the night before (Thursday night), when our church family had a time of prayer for Grace and our family.  So many people that we love were there and prayed with and for us, as we prepared to meet our baby girl the next day.  That night, Chad and I felt incredible peace as we waited.  We slept well, and woke up early Friday morning to head to the hospital.  We had to be at the hospital at 6:00am, I think.  After we got to the hospital, we checked in and headed to the Labor and Delivery floor.  The nurses were great, and asked me lots of questions.  They hooked me up to the monitors, started my IV, and gave me a few medicines.  Many, many people came to celebrate Grace's birthday with us, including our families, our church staff, college friends, and coworkers.

All the doctors started coming in, including Dr. Edwards, the chief resident, Dr. Bean, my OBGYN, Dr. Bethea, my anesthesiologist, Dr. Bofill, our maternal/fetal specialist, Dr. Boyte and Jackie, our palliative care team, and I'm sure some others.  Everyone was great!  Chad and I continued to be filled with peace and joy as we waited to meet our precious daughter.  We said our goodbyes to our families and close friends, and they took me to the OR by 7:30.  They gave me spinal anesthesia, and prepped me for the C section.  Chad finally got to come into the OR!  My nurses Anita and Daphne were precious.  The anesthesiologists kept me updated on what was going on and let me know what to expect.  Daphne and Chad were by my head the whole time.  Finally I heard the words, "It's a girl!"  I didn't immediately hear her cry, which of course made me anxious.  Finally I heard the precious cries of my baby Grace!  Dr. Bean asked if I could see her, and I said, "No!!"  So she held her up higher over the drape, and I laid eyes on the sweetest and most precious baby girl I have ever seen.  They immediately took Grace to the next room, where she was evaluated by the NICU team, including the great nurse Katie.  Chad got to stay with Grace, as Daphne stayed with me and held my hand the entire time.  Grace got 8 and 9 Apgars and only needed a little blow by oxygen and drying off.  She was FINE!  She weighed 7 pounds, 1 ounce, and was 18.5 inches long.  She was perfection. 

As they closed me up, Chad brought Grace into the OR, so that I could meet and kiss my precious angel.  We were so proud!  After they finished the C section, Grace's nurse Katie took her to meet everyone else.  She was a celebrity!  I remember thanking everyone in the OR, and then they took me to the PACU, and they actually brought Grace to me (they don't normally do this).  Chad and I got to love on her while our Now I Lay Me Down To Sleep photographer, Andrea, took pictures of our new family.  Next, our families got to come to the PACU (they also don't normally do this) to celebrate Grace with us.  After a while, Katie took Grace to the NICU to be further evaluated, while they took me back to my Labor and Delivery room.  After lots of pain medications, I was finally comfortable.  I was allowed to see several people who came to celebrate Grace's birthday with us, until one of my doctors finally said that I had to rest.  They brought Grace back to us, where Toni, the neurosurgery nurse practitioner, evaluated Grace.

Next, they took me to the Postpartum floor.  I don't remember a whole lot at this point, but I know I continued to recover here as well as love on my baby girl.  We were surrounded by family and close friends as we got to know Grace.

The next few days consisted of continuing to recover from my C section, as well as "rooming in" with Grace (this is not normally done with NICU patients).  Thank goodness the doctors and nurses from the NICU understood our request to spend as much time with Grace as possible, since we didn't know how much time we would have with her.  Amazingly, she did much better than expected!  Dr. Bean, along with another amazing doctor, Dr. Barry, got it approved for me to stay in the hospital for 5 days (normally a C section patient would only be in the hospital for 3-4 days), so that we could spend time with Grace.  As for Grace, she had an MRI at 4 days old, and surgery to remove the encephalocele at 5 days old.  She stayed in the NICU almost two weeks.  She is an amazing gift from our Father, and we are so thankful for her life!  She is doing great! 

Here are some pictures from Grace's birthday!

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.

Sent from my iPhone

Update 2

The encephalocele has been removed and they are closing now! Vitals signs have been good. We should get to see her in about 45 min -1 hr!! We are so thankful! Thank you for your prayers :) we will talk with the neurosurgeons after and post another update.

Sent from my iPhone

Surgery

They got started with Graces surgery at 1015! Everything is going good. Thank you for your prayers! We will post updates.

Sent from my iPhone

Update

We received Grace's MRI results tonight.  Amazingly, and because of the God we serve, Grace's prognosis is much better than expected!  The encephalocele (I hope I don't ever have to see that word again!!!) contains mostly CSF and only a very small portion of brain tissue (part of her cerebellum).  The rest of her brain looked mostly normal...remember, she has been diagnosed with agenesis of the corpus callosum (this cannot be corrected).  Grace will have surgery to remove the encephalocele tomorrow at 9:00 am.  SO, the neurosurgeons are hopeful and optimistic that Grace will have quality of life and her functioning could be up to normal.  She may still have developmental delays, but we trust that we are able of taking care of her!

Prayer requests:
-pray for Grace tonight, as she will have to have an IV placed and be on IV fluids and antibiotics, as she can have nothing by mouth after midnight
-pray for Grace's surgeons tomorrow as they operate
-pray that there will be no complications
-pray for peace for us as we wait on Grace's surgery to be finished
-pray that Grace will get to come home as soon as possible

We love her forever.  Chad and I could have never imagined the love we would have for her.  We are spending our last night in the hospital with her as a family of three!

We are requesting no visitors tomorrow as we wait.  We will have our immediate families and a few close friends only with us tomorrow.  We will update as soon as possible.

Thank you for your prayers!  We are amazed at our miracle baby!

Our precious miracle :)

Day 3

We are celebrating Grace's 3rd day birthday today!  Grace is doing so much better than expected, and is a true miracle!  We are so thankful.  She is very feisty, and we love her personality!  She has dark hair, and lots of it.  Her eyes are dark blue, and she looks around a lot.  Her fingers and toes are long and skinny.  She loves to have her hands by her face.  She makes the sweetest sounds unless she is mad!  It takes a while for her to get happy again once she is mad.  Everyone comments on her pretty color. 

Grace eats 55ml by mouth/NG tube every 3 hours, and is very content after she eats.  We have to change her diapers after we feed her because she gets so mad during diaper changes.  She doesn't like clothes very much either.  She is scheduled to have an MRI today, and we will go from there with her plan of care.

We are very much in love with our sweet girl!  Thank you so much for your prayers.

Grace Elizabeth is here!! 7 lbs 1 oz. She is beautiful. She looks just like her ultrasound pics. Momma is doing great also and enjoying spending time with Grace. Grace is doing good and showing that she is a fighter!
Sent from my iPhone

Waiting

By this time tomorrow, I will know my baby girl Grace!  I still cannot believe it!  Many, many people from all over the world are praying for our family, and we are so thankful.  I just wanted to post our latest pictures of our family :)

Daddy and Momma :)

39 weeks!

 36w4d - getting chubbier and chubbier :)

 37w4d - sweet lips!

 38w4d - one smushed little girl!