Well hello..! When I had my son preterm, I posted in this subreddit a lot. I posted a lot when he fell sick with Bacterial Meningitis caused by E. Coli. By son has suffered seizures that led to a stroke on the right side of his brain, causing that brain tissue to die and be replaced with more CFS. His infection had  He has severe hydrocephalus and a VP shunt with one failure so far, he is deaf in his left ear from the meningitis, he is also fed via G-Tube and gets medications multiple times daily for seizures, high muscle tone, neuro irritability, feeding intolerance.

147 days in the NICU—almost 7 months at home. My son is almost 11 months old (9 1/2 months adjusted). My son is in PT, OT, speech therapy, stacked home therapies, he sees all specialists ranging from audiology to neurosurgery 3 hours away from where we live.   
Coming home I was nervous, nervous about his feeding pump and medications. I can’t tell you how fast me and his father got the hang of everything. My son still doesn’t really eat by mouth much at all, but we still practice and do a lot of tasting. He still can’t sit, crawl on his own. He can roll how he knows how to with the left side of his body being more stiff from his stroke.   
The reason why I’m deciding to post here again.. the PTSD. You have no time to process when you have a baby in the NICU, whatever the reason may be. While in the midst of it all, I was told I was being so strong when I was drowning it all out. There was no time to process in the hospital, there was no time to process when we got home being thrown into parenthood and a caregiving position to our first baby. My son was born in October, in Minnesota the weather is getting cooler and things are getting harder for me mentally. I remember the smell of the cold early mornings walking over to the hospital, the frost on the grass, the crunch, the smell of the leaves, the asian beetles, the dermoplast, the witch hazel pads, the perfume I bought when I was postpartum. The other week I went online shopping on walmart and seen the “fall selections” and broke down because everything flooded back. I miss being able to produce breastmilk, the little that I could. I miss pumping but at the same time I really don’t. I miss hand expressing and seeing and hearing the stream “sssssssss”. I miss the feeling of a let down but I have no energy to try and re-lactate and I would have to stop some of my mental health medications which I cant do. 

I still struggle a lot on the “ why” of everything. How did he get E.Coli? What is from the NICU, a nurse, a visitor, my prolonged ruptured membranes? Himself? Why were we discharged then and how crazy is it that we were back in the same NICU 24 hours later? From healthy and discharged to septic shock and bacterial meningitis. Just how, just why. It’s also really hard living in an area where no ERs know how to really do… anything… like anything at all. We had to drive 3 hours to get my son’s G-Tube back in place after I couldn’t get it in myself because his site was really irritated after he pulled it out. We live in an area where people are not exposed to disabled children.   
My son is doing very well considering everything he has gone through, seriously. The next year or so is nerve wracking because that is when we will see what damage was “actually done” with his development.Myself on the other hand? Not so much with fall coming around the corner. I am in therapy now and I’m so happy about that. But I still feel such a deep sadness and ache for what happened to my little baby. Is it worse to have something/someone to blame or nothing at all? 

Updated: Bacterial Meningitis 147 days in the NICU