TriciaJoy-And other G-tube mamas

Ace1599

Can you tell me what lead to the placement of a G-tube? D is still having issues feeding, and they did a video swallow today which he failed. They confirmed that he is holding fluid at the top of his airways. They wouldn't tell me where we are going to go from here, since they still want to do a Upper G.I tomorrow. I am just at my witts end with this constant bad freaking news.

TriciaJoy

Chronic not eating, chronic lack of weight gain. (like 5oz/month) and what he was eating and gaining was literally taking me ALL day to feed him (seriously, I was attempting to feed him 12-15x/day.. )

Basically he was eating great, gaining great etc but just started getting worse and worse.. then he started to only eat when he was sleepy... then he got to where he'd eat in his sleep, but only 10 or 15cc at a time.

We started solids early ( 3 1/2mo adj) and he did okay, but I just couldn't get enough into him to make him grow.

Eventually they put him in the hospital for FTT, put an NG in and gave him IV reflux meds and he did better.. They thought he might "get it" but the further we got from the IV reflux meds, the worse he ate again. Eventually it became clear that he was thriving with the tube, but having an NG is *NOT* a good solution (I would have to put it in myself at home.. he would rip it out ALL the time) and it became very clear that for my sanity and his well-being, he needed the tube.

I have a love/hate relationship with it. He's definitely thrived since then.. He's almost on a growth chart now whereas he wasn't even on the page  before.. he's developing better, stronger and just generally healthier.. but once he figured out that he didn't *HAVE* to eat anything, he decided he wouldn't. So that 7 or 8 oz he was eating a day? All gone. He's now 99% tube fed.
But I also know that if we hadn't done it, he'd probably still be 14 pounds and his health would be suffering.

Feel free to email me with any questions or vents or whatever. Eating is so.....Simple.. so natural.. and when it doesn't go right.. it's beyond frustrating, sad, draining and infuriating.

lstaylor73

We ended up getting GJ tubes back in February of this year (the boys have since graduated to G tubes) because they refused to eat due to the pain and volume of constant vomiting and had lost a lot of weight on top of being much too small for their adjusted age.  We ended up with GJ tubes because they were vomiting everything in their stomachs every four hours, as well as vomiting in their sleep.  They passed the swallow test and we ad an EDG done to see how bad the reflux damage was (it was really really bad) and at the same time we did a biopsy to see what allergies they might have that is aggravating the reflux.  Luckily no allergies, however the reflux is terrible. 

Have they said that he would need a G tube?  He's still very young so a G tube for him isn't necessarily a bad thing however having a G tube or GJ tube does cause some complications with heightened gag reflexes and loss of interest in eating because of oral sensory delay or overload.  When the baby is really young and they just need more time to "figure it all out" they usually do well with bottles but get the bulk of the needed volume through the G tube.  Eventually they out grow the reflux and get the swallowing coordination down and you will gradually stop using the G tube.

DEP

Hi!  I am a speech therapist......not sure what "holding fluid at the top ofhis airway means" other than??incoordination/risk of aspiration???  Anyway, a Gtube is sometimes a positive thing.  Your baby could go home while you work on his swallowing/feeding.  It's not surprising he is having issues given that he probably has some breathing issues that do affect swallow coordination (common in preemies)----give him and yourself a break, take the pressure off, and see what they say.  It's reversible and actually gives you peace of mind that he is getting the nutrition he needs to grow even if he can't meet his full nutritional needs by sucking just yet!  He's an ex 24 weeker who is probably a little spitfire which you have probably found out by now, and he will continue to surprise you with his accomplishments thru life!  Good luck!

preemieparent

For babies the age of your LO, gtubes are usually considered when the baby shows an inability to eat enough after a long period of time trying, fear of aspiration, or other medical issues.

How long have you been working on feeding with a bottle?   If it hasn't been very long than I would certainly push for them trying more to see if your LO grows out of the issue.

Wait and see what the upper GI says and then talk to the doctors about what their short/long term plan is.

What prompted them to do the tests in the first place?   Was your LO having issues that caused concern?

Hang in there.   Even if your LO has to get a gtube, it will be okay.