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.
