u/HealthyClassic3688

My daughter was born at 27 weeks weighing 2lb 10oz, she lost some of that weight within the first few days and was pretty steady at around 2lb, since they've been weaning up her feeds on my breastmilk, she's been slowly gaining weight and now is 2lb 6oz. She's 29 weeks now. She hit full feeds of 20ml every 3 hours 3 days ago, and they immediately started fortifying with Similiac. I don't feel comfortable giving her Similac, and have been trying to get her on Prolacta instead, but hospital policy is that alternative fortifiers must be brought in by the parents, and Prolacta's policy is that they can only sell to hospitals, not individual consumers.

At this point I feel like we've tried everything: challenging the hospital's policy, trying to get them to create a contract with Prolacta, working with patient advocacy, contacting surrounding hospitals that do use Prolacta and trying to get it from them, and talking to like all the doctors we know in our lives. I feel so helpless and just want to be able to give my little girl what I believe is the much healthier option for making her strong and healthy.

Has anyone had any similar experiences? What did you do? Are there other other fortification options for micro preemies? And has anyone had success somehow obtaining Prolacta through a separate hospital than you were a patient in, or through other means? Any advice is so appreciated, thank you.

Hi all, I've never posted on reddit before, but I've found myself on this page as we begin our NICU journey, and it's been so helpful already. I delivered by emergency c-section at 26 weeks due to severe pre eclampsia and placental abruption. Baby girl was resuscitated for 6 minutes and airlifted to a bigger hospital nearby, and I was airlifted approx 10 hours later (ended up being ideal because I got to be with her so much sooner).

We are 6 days postpartum now. Her hemoglobin dropped dramatically on day 3, so they took a head ultrasound and discovered a grade 3 bilateral intravenous hemorrhage and hydrocephalus. The first dr who told us basically implied her quality of life would be terrible and we should discontinue care. Looking back at that convo now, it was very unprofessional of her- she was inserting her own personal beliefs beyond her medical opinion. The next day, we had a conversation with another dr and a team of neurologists and we felt a lot more clarity after that. We don't know the extent of her brain damage or how that will manifest as she grows, but we can take it a day at a time. and we will have another head ultrasound in a week that gives us more clarity about the bleed. As I understood it, the worry is not just the brain bleed, but the fact that the placental abruption means she could have been without oxygen for a while, and she also was resuscitated for 6 minutes. All those factors increase her chances for more extreme developmental delays.

Besides her brain, she is doing alright health-wise. She was treated for a lung infection when she first came in. She's on the JET ventilator, but they are able to take her oxygen saturation levels down a bit every day. She started feeding two days ago and has tolerated that well, so they are upping her milk amount! We've been able to hold her a couple times, but the process of moving her still seems quite stressful, so it's a balance of the benefits vs the stress. We've decided we want to let her guide us and to decide whether she wants to stay or not, so she is currently DNR for heart compressions and emergency heart medications (not sure exactly what these are). This is a decision that feels so hard, and I'm sure will get harder the more we get to know and love her. I'm not completely set on it, but it does feel important to give her an out if this is all too much for her.

Anyways, when we first heard her diagnosis, reading stories here of other babies with similar diagnoses was really helpful for me to have some hope. So I would love to hear any experiences or thoughts with similar situations and diagnoses, regardless of outcome. I'm trying to gain a realistic understanding of the possible outcomes and still maintain hope for our little girl.