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."

Grace's Story

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!  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.  They finally called us to our room, and my OB 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.  My doctor 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 and mostly unknown.

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, at 8:25 am via C section.  She was 7 lb, 1 oz, and 18.5 in long, Apgars 8 and 9.  The day of her birth, Chad and I felt incredible peace.  We were filled with joy.  Many, many people came to celebrate Grace’s birthday with us, including our families, our church staff and members, college friends, and coworkers.  Our love for Grace was instant and more than I could have ever imagined.  She was a feisty little fighter from the first second of her life!  She was perfection.  We truly celebrated her birth and life.

Grace had an MRI at 4 days old, from which we learned that her prognosis was much better than originally expected.  The (large) encephalocele contained mostly CSF and about 10% of her cerebellum, and the rest of her brain looked mostly normal (other than her other diagnoses).  Grace had surgery to remove the encephalocele at 5 days old.  She stayed in the NICU almost two weeks.  She later developed hydrocephalus, and had a VP shunt placed when she was 2.5 months old.

Grace has developmental delays.  Click here for her developmental timelineShe currently receives physical, occupational, and speech therapy, and is a student at The Little Lighthouse.  I feel chosen and blessed to be Grace's momma.  I thank God everyday for her life and the miracles He has done.