He is home from the hospital but still on the feeding tube. Having it in is an adjustment to be sure. They want us giving him bolus feeds with it four times a day. This doesn't really work all that well because when he feels it in his stomach he starts to gag and usually throws up at that point.
He did pull it out (on my birthday no less!) and I put it back in after the weekend. Having to put the tube in myself was something I was really dreading. Thankfully it went on the first try. He was so upset and cried so much though that he napped the whole day after. Poor baby.
He really did seem to need it though, he lost almost half a pound in the time it had been out and gained it back within a week of the tube feeds starting again. The doctor was so worried that she said she didn't care if he ate anything by mouth, she wanted him getting everything from the tube for now. That really scared us.
Doing all tube feeds doesn't work in reality for him but at least he gained back the weight he lost. Every little ear infection and fever seems to make his weight drop. He just can't catch a break.
Everytime we have to put the tube back in, I worry about something happening. It going in the wrong place. Hurting one of his nerves. Puncturing his stomach. I worry that having the tube in place makes it easier for more acid to come up into his esophagus after every time he eats. I worry that it will get infected. Or cause another fever and ear infection.
Luckily Avinash and Nandini seem to have adjusted to all this stuff pretty well. I'd say there were a few days of extra clinginess, especially when we got home, but they have been fine now.
Even when he has the tube in, they play with him, snuggle in bed, make him laugh. They taught him how to do a fake sneeze. It is so funny to hear him fake sneeze with great aplomb and then laugh hysterically at his own joke. I never knew babies could learn to fake sneeze. It is just the cutest thing ever.
He has also learned how to climb down the stairs. Which is good because he learned how to climb over the gate and then would get stuck at the top of the stairs with no way down.
PS. Thanks for all the love and prayers for our little guy. The support means a lot, especially just having someone to listen me vent and know they understand. So many of our friends and family have offered to help too; take the kids for extra playdates, or pack lunches, or help with pick up. I don't know what I would do without them!