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."

Thursday, June 23, 2011

Therapy Update

Hello!  First I want to post a comment to my friend, Anna---happy due date day!  I hope Walker decides to come soon so he can meet his future wife!  :)  I can't wait to meet and hold him very soon!

Ok, I just wanted to write a new post to update you on Grace's progress with speech and physical therapy.  We have been seeing the speech therapist for a while now, and she taught me how to feed Grace and do some exercises with her mouth.  We went back today just to follow up and she said Grace is doing great!  Although she is not 100% where she should be, she's close!  The ST will continue to see Grace as we start rice cereal soon, just to make sure we don't have any problems.  We will see her again in three weeks.  As far as physical therapy goes, we officially started last week.  The PT taught me how to do different exercises with Grace to help with her hypertonia.  Basically, Grace likes to stay flexed, so we have been working on extension.  The PT was pleased that Grace has made progress in only a week!  We will see her again in two weeks.

I am one proud momma!  We have been working so hard with all our exercises, and we are making lots of progress!

And of course, here are some cute pics of my cute girl!

Friday, June 17, 2011

Beautiful Heart

This is a picture from our first ultrasound with Grace!  I love it!  You can clearly see her heart, and I remember being able to see it beating at that appointment when I was seven weeks pregnant.  That was one of the best moments of my life.

One of the things many of the doctors commented about, even after the diagnoses of the birth defects, was her "beautiful four chamber heart".  I always loved when they said that, because I knew she would have a beautiful heart, both literally and figuratively.

My baby girl is beautiful, heart and all!  :)

"You hem me in - behind and before; you have laid your hand upon me.  Such knowledge is too wonderful for me, too lofty for me to attain."  Psalm 139: 5-6

Monday, June 13, 2011

Our Gift

I'm linking up with Kelly's Korner blog for her "Show Us Your Life" post on special needs families.  Mostly, I just hope to help families with babies with the same/similar diagnoses as Grace.  I know personally when I was pregnant with Grace and we first found out her diagnoses, I was absolutely desperate to find other families of babies with the same diagnoses.  So here's the story of our precious gift, Grace Elizabeth.

We had been married for six years when we found out we were pregnant with our first baby in July 2010.  I had the perfect pregnancy, and I LOVED every minute of it!  Everything was going great with no complications.  Until October 21.  We went for the "big" ultrasound to find out gender and that our baby was perfectly healthy.  I will never forget that day.  We had our ultrasound and, to my surprise, we found out we were having a girl!  I was so excited!!  Chad had really wanted a boy, but was also excited about the baby.  Nothing else about the ultrasound was remarkable to me.  I do remember the person doing the ultrasound never said she was healthy, but I really didn't think much of it.  To be perfectly honest, I never even had a second thought about the health of our baby.  We waited to see our OB, and shared our pictures and news with the others in the waiting area.  Everyone was so excited for us as well.  They finally called us to our room, and Dr. M walked in shortly, and our hearts literally broke as she immediately said there was something wrong with our precious baby girl.  I started crying uncontrollably and had to lay down so I wouldn't faint.  Dr. M said she wasn't exactly sure what was wrong, but that our baby probably had either a cystic hygroma, Turner syndrome, or (the worst) an encephalocele.  Dr. M prayed for us and shared in our grief.  She referred us to a maternal-fetal specialist, who confirmed our worst fears with the diagnosis of an occipital encephalocele the next day.  The prognosis was poor.  We were told that she would probably not live long, and that if she did, she probably would not have any quality of life.  The exact words of one of the surgeons was that "she probably won't ever know the world around her".

The next 20 weeks of the pregnancy were filled with grief, love, prayer, and celebration for our precious daughter.  We had many doctor's appointments, and Grace was also diagnosed later with microcephaly and agenesis of the corpus callosum.  After much prayer, we decided to have a C-section and to make Grace a DNR.  Grace was born March 4, 2011, and to our doctors' surprise, she was alive and well!  You can find her birth story here.  She was a fighter from the first second of her life!  Our love for her was instant and more than I could have ever imagined.  She had surgery to remove the (large) encephalocele and about 10% of her cerebellum when she was 5 days old.  She came home when she was almost 2 weeks old.  She developed hydrocephalus, and had a VP shunt placed when she was 2.5 months old.

She is now a little more than 3 months old, and she is doing really well!  She has some developmental delays, but we hope to start physical and occupational therapy soon.  Grace's neurosurgeon is surprised and very pleased with how well she is doing!  He says that we will not know the full story on her delays until she is a little older.  He predicts that she will mostly have problems with her motor skills.

I feel chosen and blessed to be Grace's momma.  I thank God everyday for her life and the miracles He has done.

Thursday, June 9, 2011

Neurosurgery Follow Up

Today, we had a follow up appointment with Dr. P, our neurosurgeon, from Grace's shunt surgery 3 weeks ago.  Stats from the appointment: Grace weighs 12 lb, 8 oz, she is 22.75 in long, and her head circumference is 37.5!  We are in the normal curve for everything!!!  Dr. P said Grace looks great and he is very pleased with how she is doing!  We will go back in 3 months for a CT (this will be her baseline CT), and a follow up with Dr. P.  We are so proud of how well our miracle baby is doing!

All praise be to our God, who has done many miracles in our precious daughter's life!  I am so thankful for all He has done and will continue to do!

Wednesday, June 8, 2011

Happy 3 Month Birthday!

Baby girl turned 3 months old on Saturday!  My mom was here, so Grace got to spend a lot of time with her Mimi.  We had our fetal medicine reunion Saturday morning (we went to the ADU very often during the pregnancy for ultrasounds, biophysical profiles, and meetings with our medical team).  It was great to see all the nurses and doctors who helped us during my pregnancy with Grace.  I remember saying during my last appointment at the ADU before having Grace that although I was thankful for them, I was happy to never have to see them again!  Now I'm glad to be on the other side showing off my feisty, lovely three month old to them!  We also got to see Matt, Ashley, and Sawyer Dykman!  One day maybe Sawyer and Grace can understand the miracles that they are!  I hope they will be friends!  After the reunion, Momma, Grace, and I went shopping!  I was in need of summer clothes (thank you, postpartum body), and of course we got Grace all kinds of things (a denim skirt, some dresses and outfits, and some pink sparkly jelly shoes)!  We had so much fun!

What's life like with our three month old??  She is wearing some 3-6 month and some 6 month clothes.  She is in size 2 diapers.  She eats 5-7 ounces every 4 hours.  Her hair is growing, although it's three different lengths because of her two surgeries.  Her incision on her head from her shunt surgery is healing well, and the sutures are finally dissolving.  She is focusing better and better, although still not following objects very well.  She is grasping at objects better and better.  Her tummy time skills are getting better also.  At our last doctor's appointment, Dr. B was concerned about her tone (hypertonia)...we are still waiting on PT/OT.  If her tone doesn't improve after therapy, Dr. B will refer us to a neurologist and possibly try medication.  Hopefully we will be able to start therapy soon.  Grace still loves her paci!  She continues to smile more and more, and even laughed for the first time on Saturday!  I'm sure it won't be the last time she laughs at her Daddy!  She hates her baths less, thankfully.  She loves swinging and playing in her bouncer.

Happy birthday, my angel baby!  We love you so so much!

 Three months old!
 Talking with my Mimi
 Hello Kitty!
 Sleeping beauty
 Sweet, clean baby girl
 My poo poo face :)
 One of my new favorites!
 Hello Kitty take 2

Wednesday, June 1, 2011


This past Sunday, Chad and I celebrated our seventh wedding anniversary!  So much has happened over the past seven years, and of course the best thing that happened was the birth of our precious daughter in March.  We are so very blessed!