Our Story

I guess our story begins when I met Chris. I was 16, and a cheerleader...He was 17, and played football. We dated all through high school and college, and were married June 26, 1999.

We started a new chapter in 2006, when we welcomed Mason into our lives. He was beautiful and perfect, and we were thrilled to be parents.

Those were really happy days. Just when we were starting to figure the whole parenting thing out, we found out we were pregnant again, and a new chapter began.

From Blogger Pictures

At 20 weeks we learned we were having a baby girl. I remember sitting in that dark room with Chris and my Mom, all of us squinting at the screen trying to find what we were looking for. Then the tech said the words I was hoping for, "It's a girl." I was so happy... A little boy and a baby girl...I couldn't believe our good luck. During the ultrasound, the tech had a little trouble getting a good measurement of her head, so it was decided that we would have another ultrasound in 4 weeks to get another measurement. I didn't give it a second thought. Things were going perfectly, and I was having a girl! I got busy looking at tiny pink things and nursery bedding.

As planned, 4 weeks later I returned for another ultrasound. This wasn't the big day that the last one was...No one had taken the day off to come with me, the exciting discovery had already been made, and this day was just routine. I had Mason with me as I walked in the room. It was a different tech this time...one I remembered from my pregnancy with Mason. She was kind, thorough, and she'd been there forever. Mason sat in a chair eating snacks, while the tech started. I watched her taking the head measurements, and continuing to look further. It seemed to go on forever. I remember singing songs with Mason to occupy him...It had been 30 minutes, and he was bored. The tech began to use 3d imaging. She told me, "I'm just using some of the new stuff now, for fun." Then she began looking at my little girl's spine. At this point I began to get nervous. Something wasn't right. I waited for her to call in my doctor, but she didn't. She finished up, and said the nurse would give me a call. I went home, and tried not to think about it.
Chris called to let me know his meeting ended early, and he'd be home soon. He picked up sandwiches for lunch. Shortly after we ate, the phone rang. Mason was napping, so I answered it quickly. I was surprised to hear my doctor's voice. After brief small talk, she said the words I will never forget. "There's a problem with the baby, and I am very concerned."
After that things get a little fuzzy. It was as if someone had sucked the air out of me. I remember bits and pieces of what she said. Splayed area of the spine, spina bifida, paralysis, mental delays, stillbirth. I didn't say much...I couldn't. Chris knew by the look on my face it was bad news. I hung up the phone, and told him, between sobs, what little I knew, before a wave of nausea brought me to my knees. I felt so helpless. I remember thinking it would have been easier to miscarry. The pain and fear was unbearable. I was broken, and my baby was broken too.

I walked around in a fog for the next few days...seeing one specialist after another, crying till my ribs ached, and finding myself entering a whirlwind of testing for the MOMS trial. We left for Philadelphia just after I reached 24 weeks.

The MOMS trial was a clinical trial being conducted at 3 hospitals in the US. The goal was to find out if babies with spina bifida did better by having the opening closed before birth, rather than the traditional closure after birth.  The coordinators and Doctors at CHOP were wonderful.  We went through numerous tests, evaluations, and consultations during our 2 days there.  The doctors gave us real information about SB, and about our baby...and for the first time I had hope.  We were randomized to the postnatal group of the study.  I had mixed emotions about it.  After such urgency over the past few weeks, to get us there, to get us evaluated, and to randomize...all before the 25th week began, it was the strangest feeling to suddenly be sent home.  I was so happy to be going back home to Mason, who I missed terribly, but I feared what Madison may have lost out on because we weren't having the surgery.   Going into the evaluation, we really weren't hoping for one group over the other.  We were still processing, grieving, and hadn't had the time to really think about what outcome we wanted.  We just prayed that God would guide our steps, and lead us through the doors that He wanted us to go through...And if it wasn't His will, we wanted those doors to be closed.  Knowing in our hearts that there was a reason we were not selected for the surgery, and believing that God was in control of all of it, helped us find peace with the decision to return home.

At 37 weeks we met our Madison Grace.  All of the staff in CHOP's Special Delivery Unit and the NICU were phenomenal.  We truly enjoyed our time there.  Maddie did very well in the closure surgery, and the days that followed.  One week after her birth we were on a flight home. 

Learning that SB would be a part of our lives was a hard thing to accept, but it has brought us all closer together, and made us truly aware of what really matters.  It isn't always easy, in fact sometimes, it's really hard...and I know more difficult days are in our future, but this journey is teaching me to be fully present in each moment and each day, without spending precious time worrying about tomorrow.
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