Our son, Brayden, came into this world 12 weeks early. After a text book pregnancy I woke up with some bleeding. An emergency trip to the midwife and we learned we were 5cm and in pre-term labor. Six hours later our B joined the world pink and screaming but very tiny.
Brayden James Helvey
August 27 2010
2 lbs 14 oz
15 3/4"
Brayden was taken to Loyolas level 3 NICU where our journey began...
He developed bacterial (e coli) meningitis and a grade III/IV brain bleed (IVH) at 1 week old. He survived the impossible and at 7 weeks old his meningitis came back. One day he was healthy and breathing on his own and then he was critically ill with a breathing tube...again! After weeks of healing he once again began to thrive.
After 84 days in the NICU he finally made his way home.
We were home only 5 short weeks when we saw signs of him getting sick. After a midnight trip to the ER we learned his meningitis had return...for a third time. This time we headed to Children's Hospital in Milwaukee where he spent 2 weeks in the PICU and 2 weeks on the nuero floor. Three brain surgeries, including a craniotomy to remove pockets of infection and treat ventriculitis, and loads of antibiotics later we were once again headed home.
His final two surgeries (that's 5 total) happened one week later and he now has a permanent VP shunt to treat his hydrocephalus, a complication of being premature and having meningitis.
Our son has been through so much in his short life. He has beaten so many odds and proved Dr's wrong time and again. There were days I wasn't sure if he would live. There were days I thought I would be burying my son but he has proven what a fighter he is. He is a true miracle.
We aren't sure why he kept getting sick and neither are the Dr's, they call him a one in a million baby. We have been extremely aggressive with treating the infection this last time and it's finally gone.
B still has long road ahead of him. He has suffered brain damage from his ordeals and we aren't sure to what extent it will affect him. He is receiving occupational, physical, speech, and vision therapies to help him thrive to his full potential.
B has a large team of doctors and specialist that help us keep him healthy and thriving. He has a pediatrician, neurologist, neurosurgeon, ophthalmologist, rehab/special needs doctor, GI doctor, orthopedic doctor, orthotist. We are so thankful for his medical team and therapists. Although it can get overwhelming at times they make our lives run smoother.
B is currently on (2) seizure meds because of the amount of seizures he was having while he was sick. He has been seizure free since Feb 2011. He takes a medication for his muscle tone to help relax his tight muscles, so far it's been a great help. We found out he has Nueromuscular Scoliosis because of the low tone (weak muscles) in his trunk and the significant brain damage. This is common in kids with brain damage, with check ups and keeping an eye on it we hope it doesn't progress any further.
Life with a special needs child has been challenging but we are learning as we go and letting him lead the way. He'll do what he is capable of doing and that's OK with us. Brayden has such a larger than life personality and he has the sweetest heart. I've never seen anyone smile so much. He is so loved!
(Read Brayden's full birth story here)
B has a large team of doctors and specialist that help us keep him healthy and thriving. He has a pediatrician, neurologist, neurosurgeon, ophthalmologist, rehab/special needs doctor, GI doctor, orthopedic doctor, orthotist. We are so thankful for his medical team and therapists. Although it can get overwhelming at times they make our lives run smoother.
B is currently on (2) seizure meds because of the amount of seizures he was having while he was sick. He has been seizure free since Feb 2011. He takes a medication for his muscle tone to help relax his tight muscles, so far it's been a great help. We found out he has Nueromuscular Scoliosis because of the low tone (weak muscles) in his trunk and the significant brain damage. This is common in kids with brain damage, with check ups and keeping an eye on it we hope it doesn't progress any further.
Life with a special needs child has been challenging but we are learning as we go and letting him lead the way. He'll do what he is capable of doing and that's OK with us. Brayden has such a larger than life personality and he has the sweetest heart. I've never seen anyone smile so much. He is so loved!
"Never let go of hope. One day you will see that it all has finally come together. What you have always wished for has finally come to be. You will look back and laugh at what has passed and you will ask yourself "How did I get through all of that?"
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