Annabelle Grace - North Carolina
On December 22nd, 2015 I was 35 weeks pregnant and realized that I hadn’t felt my baby move in a few hours. She’d already been measuring small, and they were doing weekly non-stress tests to make sure the baby was ok. The doctors hadn’t seemed too concerned with her small size, just that it may be the difference between me carrying boys and girls. I made it into my doctors office a little over an hour later and they did a non-stress test and an ultrasound to check on her. She seemed to be doing ok, just a bit sluggish and the ultrasound showed that there wasn’t very good flow through the umbilical cord. They decided to admit me to the hospital for overnight monitoring.
The next morning they told us the baby seemed fine, but wanted a neonatal ultrasound specialist to take a look at her, so we drove up to Charlotte, NC to have another ultrasound. She was measuring in the 5th percentile and was very sluggish during the 45 minute ultrasound. The doctor wasn’t sure what was going on, but decided that she would be better out than in, and ordered a C-section for that day.
Annabelle Grace was born on December 23rd weighing 4 pounds and 1 ounce. She needed a bit of help breathing at first but it was quickly resolved and we got to hold our precious girl. Over the next 24 hours Annabelle developed a petechial rash and had to have two platelet transfusions. They did an ultrasound on her brain and discovered that she had calcifications. It would be a few days before she was diagnosed with congenital CMV. She stayed in the NICU for three weeks.
Annabelle is almost 4 months old now and a chunky twelve pounds. We have 2 months left on her 6 month run of Valcyte. She has profound hearing loss in both ears, and a mild/moderate delay with her head/neck control. We are hoping to have her first cochlear implant surgery at the end of the year. As for her development, we will just have to wait and see how she does.
Life is already much different than we expected it would be as we prepared for our daughter to arrive. Since her 3 weeks in the NICU we’ve seen her primary pediatrician, an infectious diseases pediatrician, an audiologist, a neurologist, an ENT for her hearing, and an ENT for her vision. Some of them multiple times. She has had bloodwork done weekly and then biweekly, we are just now starting to check it monthly. She has physical therapy once a week and a Deaf and Hard of Hearing teacher visit twice a month. Once she is a little older we will most likely add an occupational therapist and when we get closer to her implantation surgery we’ll be adding speech therapy. It is a full time job to keep up with all of Annabelle’s needs while making sure that our boys aren’t missing out on anything life has to offer.
Before Annabelle’s diagnosis in the hospital neither of us had heard of CMV, in fact most of our friends and family have never heard of it either. I truly believe that had I heard about CMV before my pregnancy I could have prevented giving it to Annabelle. If I had taken more precautions around my precious boys, my sweet Annabelle would not have had to go through this.
- Shared by her mother, Megan