We found out at our 20 week ultrasound that Jacoby had myelomeningocele and hydrocephalus. This meant he was growing with his spinal cord outside his back and there was extra water on his brain which makes it develop differently. We were shocked and scared for what he was going to face, but we met with the Children’s Hospital NICU team and Jacoby’s team of doctors to prepare as best as we could.
Jacoby hung in there, but on May 28th, 2007 he was born via emergency c section at 35 weeks and rushed to the NICU. As soon as he was stabilized he was taken to have his spinal cord placed back in his back and ‘zipped up’ as we tell him. Jacoby was also born with dislocated hips and waist down paralysis, but instead of a possible 2 month stay he was released after 2 weeks!
Jacoby then had surgery on his brain to place a shunt in to drain the fluid off, as well as having surgery on his clubbed foot. He has been casted several times, and has had a total of 7 surgeries so far, knowing there is more in the future.
Although he can’t walk, Jacoby doesn’t let that hold him back and still finds ways to drive us crazy, be naughty, and have fun with his friends. He is still a frequent flyer at children’s and his care team has become family to us as we face obstacles and changes. We are very blessed to have Children’s in Omaha.