It's October and that means Spina Bifida Awareness Month. Since I don't have as much time to blog as I used to with home schooling, I have decided to repost some posts from last year where I recapped our journey with Toby, his medical issues, and so others can see more about Spina Bifida. If you have any questions you would like me to answer - feel free to ask in the comments section and I will answer through the blog. Happy Reading!
"D-Day" or Diagnosis DayAugust 31st is a date that will forever be etched in our memories. We went in for a routine 20 week ultrasound, and I had scheduled an appointment afterwards to meet with my doctor. Bruce and Conor were with me, and of course the doctor was running behind. I remember Bruce pacing in the waiting room, and I looked at him and said, "I would tell you go to work, but I think you should be here for this appointment." It wasn't that I had a feeling of gloom and doom, but I think God was preparing us for what was next. I will never forget the look on my doctor's face or the words out of her mouth, "There's something wrong with the baby." At the time she didn't think it was Spina Bifida; their biggest concern was the shape of his head - suspected hydrocephalus. Conor hid in the corner as I broke into sobs, and Bruce's stomach had dropped out that he almost passed out. A few hours later - minus Conor - we were sent to OSU Maternal Fetal Medicine, and a level 2 ultrasound confirmed the diagnosis: Spina Bifida and Hydrocephalus. The doctor told us we had options....termination if we wanted to. It wasn't something we ever even considered - I could feel him kicking inside of me, moving...I had life inside of me. We knew no matter what lay ahead, God would be faithful every step of the way.
The e-mails, letters, and cards full of verses and encouragement came pouring in. Some of the best advice was, "God has a plan for your baby." Another wonderful mom - Carol Lyden - who's own daughter has Spina Bifida ran into me in Meijer one night. She hugged me and said, "Congratulations". Although, at the time I didn't completely understand what she meant, I do now. Having Toby has changed our lives forever - for the better. I was asked today during a presentation to nursing students at NCH what has been the biggest life lesson I've learned. My answer: "My faith in God is deeper than ever before, and I've learned gratefulness." No matter how bad it is - we always have hope. Even in death, we have hope - the hope of heaven.
So, our experiences with NCH began even before Toby was born. We were referred to their Fetal Diagnostics Program. This helped us prepare for Toby's birth. We toured the NICU, met with doctors in the Myelomeningocele clinic, and met our neurosurgeon who would perform his first two surgeries. I even had a fetal MRI. I have heard so many stories of doctor's giving parents horrible predictions and worst case scenarios of what their child won't be able to do. That was not the case with us. Mostly, they just educated us about the beginning of life, birth, and the rest was left to God. I'm so thankful for that. Our first experience with family centered care. Stay tuned for more tomorrow....
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