Riley's Story

When we found out that we were pregnant my husband (Kyle) and I were soo excited. We had dreams for our child and hopes for what they would be. We choose not to find out if we were having a boy of girl. And had a lot of fun tormenting our family and friends.

At 19 weeks we went for a standard ultasound and not had a not so standard appointment. We found that our little bundle of joy has spinia bifida. This is when the baby's spinal column does not close completely early in development. So this meant that we would now be followed very closely. They were also worried about the baby's size, which was about 3 week behind where it should be. So this brought on ultasounds every 3 weeks, visits to the high risk OB/GYN, a change on the deliver hospital, visit to a cardiologist when they could not see the heart well enough, and stress test every couple of days for the last month of the pregnancy. Needless to say it was not stressful 9 months.

They finally diagnosed the baby with Failure to Thrive, which required me be induced on 12/9/09. My labor failed to progress and I had a C-section. So after 46.5 hours of labor my beautiful baby girl Riley Ann made her entrance into the world.

Riley spent the first 4 and half months of her life in the NICU. Before she left the hospital she would have 7 surgeries, and 7 different diagnosis.

Surgeries:
meningomyelocele closure
VP shunt placed
VP shunt revision
G-tube and Nissen placed
Tendon release (local anesthetic)
Tongue/lip adhesion (TLA)
Trach placed and TLA released

Diagnosis:
Fetal Myelomeningocele
Arnold-Chiari Malformation
Obstructive Sleep Apnea
GERD (Gastroesophageal Reflux Disease)
Clubfoot, bilateral
Spina Bifida with Hydrocephalus
Tetrasomy 18p

Since leaving the hospital we have added 2 more surgeries and 3 more diagnosis. She wear AFOs (ankle foot orthotics) during the day and Ponsetti shoes (which are two shoes that are attached to each other with a bar) at night to correct her clubbed feet. In September 2010 we found out that she also have central apnea so now she recieved oxygen at night.

You would think that a kid that has been thorugh as much as she has in such a short time would be a cranky kid. But that is that is the exact opposite of what she is. She is the happiest, sweetiest thing you will ever meet. She wakes up almost every morning with a smile on her face and it brings joy to me heart. So our dreams for Riley may have had to change, and we may to teach the world about her just as much as we have to teach her about the world. But day by day and smile by smile she is teaching us alot too. Until next time folks..