Talk to me about eating and G tubes

babybean82

Liam is really struggling with eating, he's been working on learning to eat for over 8 weeks now and isn't really showing any progress, he want's to eat but then acts like he is in pain when he starts to eat. (Arching pulling away and screaming after just a few sucks and swallows) The NICU has no answers for us, we have changed the fortifier they add to my breast milk twice now and it's still bad, he has horrible reflux too so that makes the eating experience even worse for him. He has also started to scream in pain for hours and hours at a time as well. DH and I are really frustrated because they tell us that he is just a cranky baby but we don't think that is the case, he has always been so happy and when he cries he really seems like something is hurting him. 

At this point they are telling us that if he doesn't improve any more in the next few weeks he will need to have a surgically placed G tube.... I really don't want it to get to that point but I am also so frustrated that maybe getting that and getting him out of the NICU where DH and I can make decisions for him on our own might be better.

Has anyone ever had these issues with their LO? is there anything that worked for you? And how bad is the G tube? Liam already had major heart surgery so I am really worried about putting him through another surgery. 

babybean82

Thank you for the replies, he is currently getting most of his feeds though an ng tube, they just won't let him go home with it even though I am sure I could put it in just as safely as the nurses do. We are waiting for them to mix up a recipe for non milk protein formula, we are going to do that without my milk as a trial to see if that is the issue. Dh and i have asked about running other tests but all of our suggestions are shot down. I am getting so frustrated with the nicu at this point because we have to ask permission to make any changes to his care plan.

Missi576

Alex's feeding issues were much more minor as she kept us on a roller coaster of taking full bottles.. to taking only 60% of her food by bottle.  NG wasn't an option to policy, which in our case is really sad because we used the g-tube for a whole maybe two weeks after she came home before I had her eating everything orally.  ~sigh~  Now we wait another month and a half before they'll take it back out.  It is convenient for venting gas from her belly if she is having pain from gas there.. past that, I keep it clean?  

It isn't hard to use at all.  We did minimal training because we felt very comfortable with it.  

Good luck!  

babybean82

A little update Liam was switched to a milk protein free formula on Wednesday and his comfort has improved so much, no more screaming and arching when he eats so that good. He still isn't taking even 40% of feeds though he gets tired halfway through or doesn't even wake up for most feedings so we are still thinking he might need a g tube in the next couple of weeks if he still isn't showing progress.