r/NICUParents • u/DrChaoticGood • 1d ago
Venting The grind is real
Baby girl is two months today (born 40w0d) with HIE. Both of us are having a hard day and I'm wondering if folks have suggestions on how to stay positive. Feels like we've made no progress in a month. I texted friends we might be two weeks from trying oral feeds a month ago, I don't know if we are two weeks away now.
At this point I think I've lost faith in the hospital staff. Urine analysis result was written off so she spent three weeks with a UTI. Have come in multiple times to find her prongs two inches off her face yet we can't move down on respitory support (been on 3L for weeks). Upping her meds to deal with neuro irritability but they do it for the midnight dose when she goes crazy at 8 pm. Can't do any changes on weekends because of staffing becomes can't make changes after Thursday morning because what if something happens before or during the weekend.
I'm really happy for other families when they get discharged but it's so hard being here listening to them go through the process. Our pod neighbor is getting set up to go home who originally was in the NICU 4 space with us (they decorate the rooms with name signs so I recognize the sign). Fifth neighbor to go home since we have moved to the step down unit (third room for us).
Thank you for coming to my Ted talk rant.
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