Our little Maddie was born over 7 years ago in June. I had a normal pregnancy with preterm labors with her at 33 weeks. The doctor's gave me drugs to stop the labor and I was put on bed rest for a few weeks. She actually had to be induced on her due date. It was a fast delivery but not much else to note. She was a healthy beautiful darling of 6 lbs and 9 ozs and 20 inches long...at least this is what we all thought. Her apgars were great and we really didn't know anything was wrong right away until she started wouldn't nurse on a bottle and was not able keep her temperature regulated and then withing 12 hours of her birth she had her first seizures. She explained that Maddie's knees had tremors. She touched Maddie's knees stiffen and she still had tremors. Seizures do not stop if you put pressure on the tremors. The pediatrician, Dr. Rogers came in to explain to us that he was not sure what was going on but needed her to be taken to a hospital with a NICU 30 minutes away to see why she was having seizures and not eating. He didn't want to scare us but babie's don't have seizures unless there's something else going on....the CT scan showed grade 1 bleeding but 1 out 4 babies have this and it did not explain why something was wrong...he didn't know...maybe meningitis or some kind of brain injury with the fast birthing. I began to cry knowing that our sweet girl could possibly have something wrong with her. We never expected this. She was put on a low dosage phenobarbital her first seizure meds and Chris and I were still pretty much in denial that she had seizures because she did not have any more. We informed the doctors at the NICU of our concerns and they were not sure either because only the nurse at the hospital had seen the seizures. They would still do testing and had her on an NG feeding tube to give her nourishment because she was still able to nurse. Phenobarbital was discontinued. I was back in the morning and her nurse, Ellen stopped me at the door of the NICU to warn me about Maddie. Maddie had a grand mal during an MRI and she backe on phenobarbital and was on a ventilator. It was the scariest moments of our lives seeing our baby hooked up to all sorts of wires. She ended up with a g-tube at about 30 days old and we were able to bring her home at 39 days old on phenobarbital and still undiagnosed to this day. (She was officially diagnosis around the age of 1 1/2 with athethoid-hypotonia cerebral palsy of unknown etiology (which is only an umbrella of neurological conditions for cases like Maddie), seizures, cortical visual impairments, apraxia and developmental delays.) The last two years we have been battling her seizures and they seem to be progressing and causing her all kinds of problems.
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