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, 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.


  1. I have been following this blog for awhile now. and I think it was Kelly's Korner that I first saw it.. she was asking for prayers. I truly believe all who follow your blog all witnessed a miracle in Baby Grace..

  2. I remember reading your story from Kelly's Korner this past winter. At the time, I just remember praying for you but there didn't seem to be much hope. I am so thrilled to see the pictures of your beautiful baby doing so well - I will continue praying - she is just too precious!

  3. I know God heard our prayers and sweet Grace is one way for HIM to let us know how special His love is for all of us. ♥♫

  4. I have posted comments from time to time here.. and as I read this post... I wanted to comment, once again, how thankful we are for your precious Grace. As you may or may not remember from a previous post, 26 years ago, we had a baby with a similar diagnosis. How wonderful that medicine has progressed in such that your outcome was so very different from ours. Of course... I have no doubt that Grace IS a miracle. I am making the assumption that you and I probably had the same doctor. We know that God put her in our life all those years ago because of her abiding faith in Him, and He used her to bless us during those months.

    I'll keep reading and marveling at your sweet Grace!
    Fran Gatewood