Friday, July 06, 2012

Benjamin's Life: 24-hour request

Our first twelve-hour request was rather depressing. We arrived at the hospital fro the 10 AM feeding and the nurse told us she gave Benjamin a bottle at 7:00 and that we could start our 12-hour request and be out of the hospital by 5:00 that afternoon. It didn't go so well. He got tired and had brady after brady after brady. Later our neonatal specialist pulled out his chart where bradys are recorded and showed us entry after entry of bradys and explained that we wouldn't be able to go home until the problem stopped. Our occupational therapist later told us that 12-hour requests shouldn't start with a bottle feeding--they should always start with nursing because taking a bottle is typically easier for babies than nursing is and so should be reserved for the end of the request, just in case the baby is too tired to nurse.

Needless to say, we failed. And then Benjamin had his PCG5 which revealed both central apnea and reflux. We were told we'd be going home with Benjamin on oxygen, hooked up to an apnea monitor. And we were happy with this decision because it involved the word "home" and also took some of the scariness of taking a preemie home--because if he does happen to have an apnea episode at home the monitor will pick up on it and an alarm will sound which means that I won't have to stay awake 24/7making sure that my baby is breathing.

When we came in to do our second 12-hour request yesterday we noticed that he was being weaned off his oxygen. He had been at a full liter but he was down to a quarter of a liter (of room-air) and he wasn't doing too well on his feedings. He was still meeting his minimums--45 mL, then 44 mL--but was sleepy...and had a little brady with his second feeding (but only because he choked when things started flowing). His third feeding was weird. He choked before he started feeding and stopped breathing and his alarms were flashing and screaming. And then he burped. And then he was fine.

Our nurse was a weekend/holiday-only nurse and I don't know what her deal was but she never checked on us. Ever. Not even when Benjamin's alarms were going off and I was panicking while trying to get that blue-faced baby to take another breath. I was already annoyed with her because we got a sleep room for our first 12-hour request so I asked for a room yesterday because a) I had been at the hospital until nearly midnight the night before b) I had gotten up at 5:00 to pump and get ready to come to the hospital c) we had no chance of going home...or anywhere...because it was the 4th of July and the Freedom Festival was going on and traffic was terrible and d) I had been up in the night with a toddler and had that toddler and an excited five-year-old to come home to, interact with, read stories to, and stay up to watch fireworks with.

"It's only a 12-hour request," the nurse said. "And during the day, no less, but I will see if anything is available."

She reported that nothing was available. But I'm not new to the NICU and know where the sleep rooms are. They're in the parent room. And they were all available. Ahem.

Today things are a little busier. I'm not sure they discharged any babies yesterday since the lactation consultant we met with today said that she was doing double duty since no one was on on the fourth.

But whatever.

Benjamin's third feeding yesterday didn't begin too well but it ended great. He got 63 mL and his brady was attributed, once again, to choking so it doesn't count as a real brady.

Benjamin's last feeding was in the 70s and we went home happy. And tired. And a little bit worried about those bradys. But I bravely voiced our concern to the nurse practitioner, asking why Benjamin was being taken off oxygen now when we had been under the impression that he'd be coming home on oxygen because of his central apnea. She said she thought that was the plan, too, and she wrote a new order for his oxygen--I don't know how it got all confused in the first place but he's on oxygen now and is much more alert and hasn't had a brady since we fixed it.

We began our 24-hour request this morning (after I had my blood drawn for my last phase of screening to become a milk donor). It might be a little late considering how much I've written already but I thought I'd explain that a "request" simply means that Benjamin is the boss. He's off his feeding schedule so is only being fed when he "requests" it, basically by waking up and rooting around. Or by screaming if no one notices his early hunger cues.

Again our request was started with a bottle feeding, this time because Benjamin decided to play the Russian roulette version of a 24-hour request by yanking out his NG tube before his 7:00 feeding, which was supposed to be a gavage feeding. Instead of reinserting his NG tube, the nurse just gave Benjamin a bottle.

"He did a good job," she told us. "He took 50 and wanted more but I was afraid to feed him too much because I wanted him to nurse really well for you."

I sat down to nurse him and he latched on immediately and nursed while various medical professionals stopped by to go over our discharge orders with us. Benjamin quietly nursed away while we talked and when we finally took him off to weigh him he almost broke the scale! Okay, so he didn't quite break the scale but he did weigh in 92 grams heavier than before, the little glutton!

We thought he'd sleep forever but 3.5 hours later he was begging to nurse again. 83 mL.

3.5 hours later? 77 mL

We just fed him again and he did 60 mL, which almost sounds wimpy when you compare it to 92 mL, but it's actually still quite a lot considering a full feeding for him is only 41 mL (but 55 mL if he sleeps for four hours). He is more than meeting his numbers and the only time his alarm sounded is when he was hungry and angry and we decided to change his diaper before feeding him (tachycardia, which isn't a worry if it's only an angry baby).

So, things are going well. We're rooming in at the hospital since we would die if we had to drive to the hospital for his nightly feedings (not really...but we'd only get like 2 hours of sleep the whole night and that would not be fun) and tomorrow we'll be rooming in again to do his on-demand test (with the machines we'll be using at home instead of the hospital equipment). Wish us luck!


  1. I am so happy to hear things are looking better and you will get to take your sweet baby home soon. You guys amaze me! Hope everything goes well and he is home with you soon.

  2. We found that when doctors changes often there would be a new plan of attack. It's actually the reason we got Cheetah when we did. Previous doctor wanted to wait it out until she could eat without having problems. New doctor came on and said, send her home with a NG. It was frustrating for us to figure out what was going on and Dr. J was signing on and reading her chart and would round with the team when he was in the hospital. It stinks that every kid doesn't have their own sleep in room, but it is nice that you guys can do these request together. Three cheers for in-laws and parents. I ended up doing all our test alone. Dr. J was either working nights when my brother was here or watching our kids after everyone left and we were on our own.

  3. Great news!! I hope everything is going smoothly, and you get to bring a baby home with you tomorrow (and all the equipment, but that's not too bad, I promise)

  4. So glad to hear things are going well! I hope you get to bring him home soon!