Anyone's LO come home on an NG tube? Please share your experiences...
MrsGoody
member
My LO came home from the NICU on an NG tube; we've been home for about two weeks now and things are going fine. She failed a video swallow test in the hospital that showed she was aspirating thin liquids. She will retake the test in another couple of weeks and hopefully be able to transition to breastfeeding or bottle feeding.
I've gotten used to the whole process, and setting up the feeds is a little time-consuming but fairly easy. I'm just concerned that my LO won't want to go back to the bottle or breast when she comes off of it.
I was wondering what other people's experiences were like with having LO on an NG tube. How long were they on the tube? Were you able to transition to bottle feeding or breastfeeding afterward? Did they have any feeding issues/aversions after coming off of it? What made the doctors determine that he/she was ready to come off of it?
Any experiences to share or words of advice? Just curious as to what other people in a similar situation have experienced. Thank you so much!
Re: Anyone's LO come home on an NG tube? Please share your experiences...
my DS came home with an ng too. it was supposed to be a short term "fix" to getting him used to eating by mouth. he did really good in the nicu but would have a bad week or few days and only take 10-20 mls per mouth and nothing else. he has kidney issues so his eating was mostly affected by not being hungry but with little to no practice he never has really learned how to coordinate things. he can suck on a paci like a champ but the swallowing, etc and coordination with his tongue is too hard for him. plus he has/had reflux incrediably bad- after a few weeks or trying to figure it all out and switching meds he has been fine but i think all the vomiting irrated his throat and made all the eating issues even worse. long story short- my best advice is to try to let your LO attempt to feed by mouth IF the dr says its ok, do some oral stimulation, get speech therapy to help guide and teach you/her, and mostly be patient.. this is the hardest for me. i feel so pathetic when DS only takes 10mls per feed and I have to tube the rest.
Also, we never use our pump because it wasnt helping with the reflux/rate of how fast it was going in over 30min so we always syringe it- not by gravity, we have just learned and taught his belly how to handle it in "doses", but of course you should talk to your dr about that i guess. plus if she isnt having any reflux issues then i wouldnt worry about how its getting in if its not going back out! lol good luck!
oh and i am willing to fight for DSs ng to stay in as long as possible. he has already had surgery and i do not want to get a gtube just for the "sake" of getting one when the ng is working the same and just fine. my pedi said there may come a point when he is bigger (he will need a transplant so the idea is after transplant he wont need any assistance eating, thats my hope at least) that he may pull it out and replacing it too often could cause damage or make his throat more irratated.