88 day old Nova’s 4TH surgery is in about 36 hours. So much infection getting in her way of coming home, no matter the surgery infection creeps up. Please pray for my little Nova. This morning I found out that she has had anemia this entire time as well. I don’t see how this is common practice, not to tell the parents anything unless specifically asked? How is this acceptable? How wasn’t I made aware? I also was just told 4 days ago that nova is not only considered disabled but that she was kicked off her insurance even though I fought to get that fixed about a month ago, I have spent time a ridiculous amount of time that I don’t really have, trying to call and go in there in person to get them whatever they could possibly need to fix this. I can’t let her fall through the cracks after all she has been through. Her care relies on this insurance when she gets out of there. It’s life or death, so what gives? She deserves SO much better. As does every other baby in their care. ( allegedly it is babies with disabilities or more rare illnesses that the care is lacking) It’s crazy, sad, but also a relief to have validation that I am not the only one having these experiences with this NICU, and it is not a new issue. I need her to make it home to us. But I’ve been so afraid they’re going to make a deadly mistake. This is what keeps me up at night. I login to her angel cam, and see her crying, thrashing, and right now struggling with a loose sheet she keeps pulling over her little face. She’s agitated. & I don’t recognize where she’s even at because it looks like a new location and crib bars around her. This wouldn’t be the first time they’ve moved her without telling me. I think I’m just tired and have realized how little control I have for my own child’s wellbeing and medical care. The Patient advocate wasn’t around when I needed them but I’m going to be going to the hospital, a surprise unplanned visit during the week, because I am fed up and I have to make something change with the care there, or lack of. I’m trying to hold it together for us all. Yet I can feel myself breaking. Sharing these for travel and Hotels. Extra in the next few weeks. and who knows, if they don’t fix her insurance in a quick fashion, maybe it’ll be shared for some of her immediate medical needs. I don’t know. Everything is so uncertain now. Gfm-gofund.me/722c5fcb5 givesendgo.com/baby-novas-fi… Cash App-$allthestars92

Nova…not a great update. Her body is rejecting picc lines. So they’re keeping an iv in her scalp and hoping that’ll work. Also, infections & fever seem to be worsening but her surgeon wants to still have this surgery on the 28th instead of waiting for the surgical site to clear up as they need that incision for the removal of her jaw hardware. He wants to save her from “unnecessary radiation” of a ct scan to see if the infection is in her bone, and just do the surgery regardless. I’m just at a loss. She is declining rapidly. I was not able to go last night as I had hoped due to a pretty bad storm. I wasn’t comfortable loading up my other babies for the drive and their drive back especially in the dark. I’m getting ready to go now. Please pray for nova, our travels, just my family as we try to navigate this. For the first time in a while I am having a heavy doom feeling regarding her health and ability to pull through all of this. She’s done nothing but have to fight for her life and I know she is just so tired. Gfm-gofund.me/f3680c0a1 Give send go-givesendgo.com/baby-novas-fi… Cash App- $allthestars92