Post Op Again

We are HOME from the hospital after Grace's shunt surgery yesterday.  She did GREAT!  She is my tough little girl!  I will post more info later about her surgery and post op, but I just wanted to thank you for you prayers!  She is still in some pain here and there, but I think she is starting to feel better.  There's no place like home!  :)

Shunt Surgery Wednesday

Hey!  Grace had her pre-op appointment today.  We signed the consent and got all the information.  They also had to get some pre-op labs from her today.  It was sad, but she did great!  Grace also had another speech therapy appointment today, and the speech therapist was very pleased with Grace's progress so far!  We have only been doing our exercises for a week, so I was proud!  We will see her again in one month, and hopefully Grace can be finished with ST then! 

I go back to work next Monday.  I can't believe it's been 12 weeks!  I am ready to go back, but will be sad to leave Grace.  Thankfully, she has a great caregiver!  Ms. Rita, "Mammaw," will take great care of Grace while Chad and I are working.  We are so thankful for her! 

Some new things with Miss Grace...she is smiling more and more!  I also think she is focusing better on us and objects.  She started making great improvements in her tummy time skills.  She is also having more hand to mouth movements.  I am one proud momma! 

We have her shunt surgery Wednesday.  We have to be at UMC at 6 am.  Some specific things you can be praying for...that He would be with her doctors and nurses, that the surgery will go well with no complications, that Grace will have minimal pain, that there will be no infection (Grace will be at greatest risk for infection for the next 6 months), and that her shunt will work well with no malfunctions.  We are praying that this is her last surgery for a while. 

Thank you so much for your prayers for Grace and our family! 

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..."

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 :)