Newborn Seizures
My baby boy was born 7th of May (39w+5) after a sweep as he had higher than normal fetal heart rate throughout my pregnancy. He was floppy, no Moro reflex and didn’t feed very well when he came out so the doctors ran some tests within the following few hours.
Blood tests were abnormal so they transferred him to the NICU. He has been there since. His creatine kinase levels have stabilised and are within normal range after being elevated. He also has a bell shaped chest which is probably from the hypotonia and relying on his diaphragm for breathing support. They also noted undescended testes but were able to identify this on an ultrasound and said it looked okay.
Second and third night they noticed he was having seizures and put him on an EEG. It showed that he was having seizures, some that were sub-clinical. They have started him on two anti-convulsants; phenobarbital and Keppra. His O2 saturation was lower than expected so they had him on oxygen. They did an MRI on his brain, but we’re still awaiting results.
He was doing well on these and no more seizures occurred for a few days so they moved him to a different bay and I could finally hold him. I’ve just been updated that his O2 has been dropping a few times and they noticed some stiffness so they will transfer him back to the ICU in an incubator.
I am beside myself and feel like I am having an out of body experience or in a dream in which I am pinching myself to wake out of. I can’t imagine if he’s in pain or what he’s going through and it breaks me. I have a toddler (30 months) that I cannot give my attention to and that breaks me too. My husband is staying strong and positive for all of us.
So far they think it could be something metabolic/neuromuscular and genetic testing can take several weeks.
Has anyone been through this? I don’t know what to expect or what to do. I feel I am developing PPD and cry several times a day with the feeling of a ball stuck in my throat. I’ve been discharged and go at least twice a day to see him and drop off breast milk.
No one ever expects to be in a situation like this I know, but it feels so so unfair. I want someone to wake me and tell me I’ve been having a bad dream. I am exhausted mentally and physically.
Any advice or similar experiences are appreciated