News from the NICU

Last night was so incredibly discouraging. I'd fought pretty much all day (nicely) with the nurse practitioners, who insisted they'd NEVER let our baby out of the hospital with an NG tube. So then I demanded (nicely again) that they take the NG tube out and let the boy prove himself. His nursing and bottle-feeding sessions were vigorous but short-lived--he zonked out really quickly and was impossible to wake up to keep eating. I still maintained that he'd do better at home--that he's not sick and just needs some time to figure things out. I pleaded with them to let me take him home, promising that I'd get a home health care nurse, or take him to the pediatrician for weekly weigh-ins. Not good enough for the NICU Nazis. So then I tried asking them to let him come home with the NG tube, if need be. My pediatrician had already told the attending that he'd be willing to help with that. Absolutely not--apparently the attending physician who's on this week has only sent ONE baby home with a tube, and my baby's supposedly a terrible candidate for one because of his low tone. (Can I just insert here that with as many times as they reminded me my son has Down syndrome, so his needs are different than a "normal" baby's, I wanted to scream? I'm well aware of ALL the different things that come with Down syndrome--I've been researching and studying and talking to tons of other moms for months and months. I'm not going into this blindly.)
My baby's nurse that day was such a grouch! She saw me crying in my chair and told me all kinds of super-unhelpful, non-uplifting things--"Look how his saturation levels are dropping (even though I'd been told by several nurse practitioners that the pulse oximeter is notoriously unreliable when the baby's moving, or the plug isn't on a flat surface).... You need the blow-by (oxygen mask). You know, most babies here have the nasal cannula for oxygen. None of this business with the head box or blow-by. No need to mess with those things." When I told her the head box was mostly for humidity because his nose gets really stuffy, and that they took him off the nasal cannula days ago because his oxygen saturations were consistently too high with it on, she said, "Oh, really?" sarcastically, and shook her head... And here's more from our own Nurse Ratched: "He only nursed for a few minutes, huh? So we probably don't even need to weigh him again" (again, voice dripping with contempt, or sarcasm, or something negative). Then she asked if we could finish his feed with the tube, which is when I basically begged to have the tube taken out. She went and asked the nurse practitioner for permission, and then came back and said, "You want the tube out? Here you go," and roughly wiped his little face with adhesive remover while tugging on the tape. She had been told by the nurse practitioner to wait till he'd digested his last feeding so he wouldn't spit up, but she did it immediately. I SWEAR the feeling I got from her was total spite. Then, as I was sitting in my chair crying after a disappointing discussion with the nurse practitioner, she said, "You know, you COULD sign him out of here AMA if you're so anxious to get him home. But then the hospital would sue you and come after you for all the money you owe them for his stay here. I can guarantee your insurance wouldn't cover anything if you did that. But, it's an option you might not have thought of." I heard her complain about one of the babies in her charge to one of the other nurses. That just cemented in my mind that she was either having a REALLY bad day, or she should maybe look into another profession. She is NOT my favorite nurse, and I'm praying she's not on today....
So, anyway, during and after his last feeding of the day before I came home, his oxygen saturations dropped to the high 50s a number of times, he stopped breathing at least 5 times (apnea), and he had 2 "A & Bs"--oxygen sats dropped AND heart rate dropped to the low 70s. SCARY! I had requested that he be allowed to sleep as long as he wanted between feedings during the night instead of being woken up every 3 hours (who wants to start THAT schedule before he comes home, right? And also, then he could be well-rested for daytime feedings), and the (nice, sweet, compassionate) night nurse said the longest they'd let him go would be 5 hours between feedings, but she'd let him go that long. She told me he hadn't had many wet diapers, that he'd lost weight since yesterday, that he'd needed oxygen through the night before as he slept, and that those things combined with last night's "episodes" were his signals that he was still too weak for oral feedings (all of this was said with empathy and kindness, I should add. She apologized for bringing up that possibility, and said she was just trying to prepare me in case they needed to place the NG tube again.). She said she'd try her best with the bottle-feeding on demand through the night.
I left the hospital scared and sobered and so, so upset. Another month of leaving the big kids to go practice feeding the littlest one loomed ahead, and I felt completely deflated.
Fast-forward to this morning, when the phone rang. The caller ID showed it was the hospital, and my stomach lurched. What bad news were they calling with? It was today's nurse practitioner. "Mrs. McKrola, let's get this boy out of here." WHAT?!?! Not even CLOSE to what I was expecting to hear! I was too shocked to ask what brought about this drastic change of heart. She told me to bring his car seat today to see if he'd pass the car seat test, and then we could consider discharging him sometime tomorrow (IF he does well today)! She said they'd teach me how to place the NG tube and check for placement, and he could come home with oxygen, too (for sleeping and eating). I told her I wasn't expecting any of this, considering what a tough time we'd had yesterday. She said those were all feeding-related episodes, and since I'll be with him as he eats, it would be fine.
Isn't it incredible how quickly things can change (it's quite possible that my constant praying all day yesterday had something to do with it, don't you think?)? I'm off to the hospital to hang out with the little dude. I have so many questions. The answers don't really matter too much, as long as I can bring my boy home, but I'm still curious.... Does this mean he did great during the nighttime and morning feedings? Did they finally get to chat with their lawyers to see what their liability would be, and what waivers they needed me to sign?
PS: I just want to add that I'm not a total crazy person and won't insist on bringing him home if he doesn't seem ready.