I remember it all very clearly, it was a regular 20 week check up. My husband and four year old daughter were with me, and we were just so excited to find out if we were having our third girl or if this one would be a boy! I hadn’t had any problems so far, except for a bit of morning sickness and feeling tired; but taking care of a 4 year old and a 2 year old while working part time, would probably make anyone tired!
The ultrasound tech searched to find out what we were having, then told us we were having another girl! After that, she did all of the usual measurements. We were all so excited and couldn’t wait to let the family know it was another girl! We were waiting in the waiting room for my appointment with the Dr., when the nurse came and called me. As I got up and started walking in, she told me that my husband may want to come also, and that the Dr. wants to talk both of us.
Panic! I hadn’t even seen the Doctor yet and I was already terrified.
Thank God we knew the receptionist, and she kept our 4 year old for us. My doctor, whom I had been with since I was 16, was crying as she told us, “I am so sorry, your baby has Spina Bifida, and a lemon shaped head.” She said it was the worst case she had ever seen, and she said that our baby will never walk and probably be mentally disabled!
Weeks before this, my husband and I watched a TV show about prenatal surgery, and we started asking my doctor about it right away. Between the tears and confirmation that we would not terminate this pregnancy, we arranged for follow up. She sent us to a specialist that confirmed the spina bifida, and got us in contact with the MOMS study. Four weeks of faxing medical records, test results and phone calls from the study, and we were finally past all the hoops and on our way to Nashville, TN.
At the time we lived in St. Louis, MO; my girls would stay with my in laws while I was gone. I remember packing; it was so hard because I didn’t know if I was going for a week or three months! I packed like I was going for 3 months, because we truly believed the prenatal surgery is what God had for our Chava Isabelle!
On the day I turned 25 weeks, I was wheeled down the hall, so my baby could have surgery! To this day, this still completely amazes me! Everything went well, but still, it was a bit of a tough recovery. Try having a c section, and then still having the baby inside you, moving all around!
My husband was with me the first three weeks and then my mom came and stayed with me. My husband traveled every weekend to Nashville with my girls so we could see each other. My scheduled c section was October 6, 2005, but on September 8, 2005, Chava decided it was time to come! My water broke while my husband was in St. Louis taking a test for school. He ran out when I called, and drove over 300 miles to make it just in time to see her born! Thankfully my contractions were not picking up, so the Doctors let me wait until he made it!
She was 4 pounds 9 oz and 17 inches long! The NICU called her the big baby of the NICU, but to me she was so tiny! We were in the NICU for 9 days, the only issues she had were with keeping her body temp up. I remember they were trying to teach us how to cath her and she kept peeing around the catheters. They finally gave up and told us to just use diapers. I remember being amazed that all she had was a tiny scab on her back and how it had healed so well! She was so perfect.
Chava and I flew home to St. Louis, and were met with lots of loving family and friends! Chava was doing great!
She had no problems at all, just lots of doctor appointments and therapy appointments. At 16 months she had to have a tethered cord release, and a week later she was leaking spinal fluid out of her back! That was so scary! She had a temporary shunt placed and three days later a VP shunt was placed. A week after that, we were back in the hospital to have a plastic surgeon close her back up, in the hopes that it would finally heal!
She has had a few tendon release surgery and botox in her ankles and hips! Chava walks with RGO bracing and a walker, and uses a mobile stander and wheelchair! She is not cathed, and at 6 years old our next obstacle is figuring out potty training!
I thank God everyday for her, and for the blessing she is to our family as well as all that we have learned from her! Chava is a very happy and normal kindergartener! I couldn’t imagine life without her!
Thank you Gail for sharing Chava with us!