My baby boy’s name is Gabriel. During my pregnancy they had noticed his brain was not developing right and he had a cyst. at the time we didn’t know how this would affect his development. He was born a full term baby, born at 38 weeks. He didn’t breathe for the first minute and once they got him to breathe and into my arms I noticed him jerking a lot and they realized he was having seizures. They took him from me and he went into the NICU. They took a bunch of blood from him to figure out what was wrong. They had to have him on an IV with lots of fluids because his electrolytes were off. They did an MRI of his brain and saw that he had Lissencephaly (in latin it literally mean smooth brain) and hypopituitarism (missing hormones). He is also missing his corpus callosum which caused the cyst in his brain and the reason why he was having these seizures. A month had gone by and they still couldn’t control his seizures and they finally got the DNA results back and found that he had an ARX gene mutation and they didn’t expect him to live long. They tried hard to get his seizures under control and to get his electrolytes up. When they thought they had everything under control and go down on his IV fluids, he had stopped breathing and they intubated him. My kid is a strong baby and pulled the tube out himself 2 days after getting it put in. After being in the NICU for two months he got to go home. He still has seizures and doesn’t take a bottle so he has a feeding tube. They told me he wouldn’t make it past 4 months and he wasn’t going to laugh or smile or do anything a normal baby would do. He is now going to be 5 months and smiles at me constantly. My kid has taught me to never give up hope because even when everything goes wrong, you can always find a way to make it right.
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Our parent blog is inspired by the many diverse experiences that are common to parents of preemies. If you have a preemie or a baby who spent time in the NICU, a child with special needs or a loss – we want you to know that you are not alone. Join our supportive community and connect to parents who share similar experiences to your own, arm yourself with information to properly care for your child(ren) and your family, and find inspiration and hope when you need it most. Meet our bloggers.
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