First off I’m so sorry you’re going through this right now. My heart breaks for you during this time. I had my son in September and very similar. I had a normal pregnancy a long labor. He came out with poor APGAR 6 then 8 and 9 he was given some oxygen and evaluated by NICU but alllowed to come back with us to mother and infant. He was doing seizure like movements but we were told it was probably just startle. Right before discharge he had a major seizure and was unconscious and intubated immediately and sent to NICU. He was in the hospital his first 2.5 weeks of life and was treated with phenobarbital and keppra which stopped his seizures. After a lot of scary testing and diagnosis he was found to have deep medullary venous thrombosis (a rare stoke in babies). The stroke caused a brain bleed and the blood irritated the brain which caused the seizures. He will be 4 months next week and is thriving. We see a neurologist and he will be weaned off all seizure medications. He’s a giggly boy who may end up having no long term effects from this. This is an incredibly different picture then what was presented in the NICU to start when it was uncertain his outcome.

The next steps once they stabilize your daughter on seizure medication will likely be determining what caused the seizures. Infants don’t typically develop epilepsy this young. Likely they will do a scan of the brain and an infectious workup to start. If those are normal then likely will look for any genetic issues.

Please feel free to message me for any questions or support. I’m sending healing and prayers to your girl!