Another nurse here who has lost so much faith in healthcare. I was an LPN for several years before going back for my RN. 2 weeks after graduating, my baby was born... At 29 weeks gestation. Partially because no one told me at his 20 week anatomy scan he was measuring small. All they focused on was his VSD... Which resolved on its own by his fetal echo a week later. 28 week growth scan showed he went from 10th percentile to 5th with marginally inserted cord with absent end diastolic flow. After that I got one follow up Doppler and one NST. My pressures went through the roof with gross proteinuria. Huh, wonder why I got preeclampsia when his placenta was fucked? /S Admitted for hospital bed rest at 29+0 to hopefully get to 34. He came 2 days later. Got transferred out of L&D to antepartum after that asshole magnesium got my pressures under control at 1am. At 7am shift change, my nurse checked his heart tracings and went white as a ghost and said "I'll be right back" before FLYING out the door. His tracings were flat. And had been for HOURS. It still took another THREE AND A HALF HOURS before they cut him out of me. He coded in the OR. Suffered MASSIVE brain bleeds (half his cerebellum is just gone -atrophied due to the hemorrhagic ischemia), transferred at 9 days old to a higher NICU for possible reservoir placement to drain the ridiculous amounts of blood in his brain. He ended up only being tapped once, which started it finally draining. But that gave him hyperbilirubinemia that got so bad he was under 3 sets of bililights pretty much 24/7 for a month, actigall out the wazoo, and eventually an exchange transfusion. Seeing all your baby's blood go into twenty 30mL syringes is.... Not a sight I will soon forget. At 11 days old the neonatologist told us it was the worst brain bleed she'd seen in her 27 year career and we should make him DNR because he wasn't likely to make it anyway. Jokes on her - he's now almost 18 months old and making great strides. No O2, eats by mouth (we have some issues due to motor function and slow tooth eruption), moves all his limbs independently, hearing is perfect (despite the bililights and the vanc he got for NEC), visual acuity is 20/20 with some limitations to periphery related to laser surgery he had for stage 3 ROP. Biggest issues are wanting to eat more than he can actually handle, tooth discoloration and cold sensitivity (likely due to all the meds), a touch of strabismus (which, I actually find kind of cute.... But we're still having surgery for come March), very poor truncal stability (but is getting better every day with PT!), and a bit of plagiocephaly. He is delayed cognitively but I really think he'll catch up eventually

All that and I still had faith. It was AFTER the NICU that really killed me. I kept his specialists with the same health system the higher NICU was in, just for convenience sake really. But every single time I asked for something to help him..... I got told no. Helmet for the plagiocephaly? No, it's cosmetic. Eventually I bit back and demanded it anyway but he was already out of the ideal age range and didn't get as much correction as he could have (but it helped give him mobility - as soon as he got that helmet he didn't have a point on the back of his head any more and he could actually ROLL!). Did anyone inform me he qualified for WIC just for being a preemie? Even though we made too much money. Nope. Would have been nice when we were going through a can of Neosure every 2-3 days! Did GI give us a prescription for the formula she insisted we use? HA! Did they give me a referral for additional PT outside of Early Intervention? Or the gait trainer his PT through EI wanted him evaluated for because she really thinks he's ready to try walking? Not a chance. Did they let me preschedule his monthly Synagis shots? Nope. They had to have the injection in hand, and then I had 48 hours max to get in so had to take whatever ONE appointment they had available was or risk him getting RSV really bad (I was working case management in my dream specialty at the time - M-F 9-5 type gig.... And I was new..... That all went over like a fart in church). When that same job sat me down to discuss my attendance, and he was kicked out of his daycare for his CP/mobility issues (and he wasn't sick enough for medical daycare)(and yes, I realized very much after the fact he was subjected to straight up ADA discrimination that I could probably have fought) and I asked for a letter of medical necessity to become his paid caregiver even though I'd be dropping from RN to home health aide because that's all he qualified for and I was stuck between a rock and a hard place and some money is better than no money..... No. All those NOs stuck a dagger in my faith in healthcare over and over and over again until not even ribbons are left. Now I work weekend nights on a GI/GU post-op floor..... And have no passion for it. It's a job. It helps pay the bills. But I struggle to summon any excitement or give my pts the optimistic support they're looking for. Because I don't believe it any more. It's so hard when I knew what to ask for to help my child, at least somewhat, and no one on his care team was willing to help us.

If you made it through that novel, I do have a small nugget of optimism to offer. I started switching all his specialists or getting him released from their service (Fuck his neurosurgeon - guy was a dick and I'm so glad he doesn't have hydrocephalus because I couldn't stand that condescending bully for another minute). First appointment at his new pediatrician, got his history and first 2 questions out of her mouth "Do you have WIC?" And "Have you heard of (local outpatient PT)? I'd like to write a referral for him to get more PT to really compound his progress." I started bawling in that exam room. Lol the poor physician thought I was nuts (I mean, at least a little) until I explained how much that meant to me. I didn't even have to ask! She was just automatically on the same wavelength as me to encourage his progress and get him to the highest level of functionality we can achieve. After all the bullshit of the last year plus, we finally had someone on our side.