Tuesday, August 7, 2007
Noah came home from the NICU on a feeding schedule. In order to get his 20 oz. of formula a day he had to take about 85 ccs 7x a day. He was bottle fed for 30 minutes and then the rest was pumped in via ng tube for an hour. This gave us another hour to stare at the heartbeats on his apnea monitor and make sure the O2 prongs stayed in before it was nebulizer time and then 85 more ccs. We did get to sleep sometimes... his feeding tube stopped at about 1:30 am and the next neb wasn't due until 4:30 am or so. Ok, so basically it sucked. But after our first pulmo appointment where they cut his nebs down to twice a day from 8 times and around the same time when we got rid of the ng tube things got easier. Instead of 3 hours of continuous sleep we were suddenly able to get 5.5 hours. Over time the schedule has changed. Skip a feeding in the middle of the night to get a longer continuous stretch, or not? Feed every 3 hours or 4? Gradually Noah's naps started to fit neatly in his feeding schedule and I learned to work our appointments around what worked for him. Life wasn't easy, but at least it was predictable. When Noah started his intensive feeding program at the end of March he had just gone from 2 shorter (1.5-2 hour) naps to one long (2.5-3 hour nap). We were feeding every 4 hours so that worked great. But with feeding therapy came a new schedule. Noah's 2nd morning feeding ended at 12:15 and his first afternoon session was at around 2. Suddendly we were back to a 1.5 hour nap which meant an extra cat-nap on the drive home. When we got home the feeding schedule changed again and with the new schedule Noah decided that he would rather not nap at all for a few weeks before settling back into one long midday nap. Last week we had a clinic appointment and the nutritionist changed things again. Noah tried the 2 nap thing for a few days and appears to be trying the no nap thing today (or perhaps the wait until dinner time then collapse for 30 minutes and refuse to go to bed until midnight?). I don't mind letting Noah find the schedule that's best for him, but I wish he'd get to it already! He's too tired to play so he's just distructive - pulling things off shelves, taking all the laundry out of the hampers, prying off the toilet lock to he can play basketball. Somedays I wish I could just let him CIO, but he would just vomit and lose all of those hard earned calories (and probably not sleep anyway). All I can say is at least we're done with middle of the night feeds. Hopefully forever.