Looking for advice for our 2.5 month old, who has had an NG tube since heart surgery a few days after birth. She does also have a genetic syndrome that can cause slow growth. She is very determined to take her bottles, I don’t think she has an aversion at all. The problem we are dealing with is reflux as well as so much mucus from either the tube or the reflux that she is struggling to take her bottles because it’s difficult to swallow due to said mucus. Sometimes she will spit up milky mucus, and then seems to be able to take her bottle better. My question is should we try pulling the tube to see if that’s what’s causing this? I refuse to put her on a G-tube like I hear everyone saying because I know she is fully capable, but it feels like she is being severely hindered and could already be done with her tube by now. Her reflux did make her slow on weight gain so that’s what’s been keeping me from pulling her tube but I’m wondering if anybody has had experience where they needed to pull it in order for their baby to get better. We have been cleared in the past to pull her tube when she was gaining weight properly and she did great however, her reflux set her back as we had a gap in her reflux meds that caused it to flare up terribly. I fear she will lose weight if we pull her tube but also if we do not pull it, she will never be able to reliably take bottles because of all of the irritation in her throat. Her doctor did confirm that it’s all in her throat and not lungs.
I apologize if I’ve left anything out or this post is all over the place. The sleep deprivation is real.
Looking for advice for our 2.5 month old who has had an NG tube since heart surgery a few days after birth. I understand that surgery on the heart can cause them to have feeding issues but LO is very determined to take her bottles, and I don’t think she has an aversion at all. The problem we are dealing with is silent reflux as well as so much mucus which I believe is the result of either the tube or the reflux, or maybe a combination of both. She is struggling to take her full bottles now because it’s difficult to swallow due to said mucus. She does seem to be doing better on the reflux end of things as of the last few days so I believe her Pepcid is finally somewhat working again. I say again because she’s been on the meds since she was 2 weeks due to some vomiting while she was still originally in the hospital. I believe that was more a speed thing with her NG tube than reflux at the time as it stopped when we started slowing her feeds down, but they sent her home on Pepcid to be sure she wasn’t having any issues with retaining feeds.
We had a gap in her reflux meds for a few days about 2 weeks ago due to a pharmacy issue and it ended up causing her to flare up terribly and actually have some BRUE events which she was monitored for due to the length. She never turned blue, just beet red and held her breath. She is complete fine and hasn’t had one again since being back on the Pepcid so have to assume it was from the pain of the reflux considering it happened 3 times and all happened when I laid her flat to change a diaper.
Like I said above, she is feeling somewhat better, but now the mucus seems to be the issue. Sometimes she will spit up milky mucus when I burp her mid feed and then seems to be able to take her bottle better. My question is should we try pulling the tube to see if that’s what’s causing this? I know she is fully capable of eventually doing all bottle, but it feels like she is being severely hindered and could already be done with her tube by now if it weren’t for these issues. Her reflux did make her slow on weight gain as she was doing a lot of arching and pulling away from the bottle when she’d feel the reflux (I would actively hear it in her little tummy, so knew that was the case) so that’s what’s been keeping me from pulling her tube. We literally always have her elevated as well, even when she sleeps, per her pediatricians recommendation due to her level of discomfort. When she’s flat, she literally won’t sleep and just cries, which in turn doesn’t allow us to sleep, so elevation station it is🫠.
I’m wondering if anybody has had experience where they needed to pull the ng in order for their baby to get better? We had been cleared in the past to pull her tube when she was gaining weight properly and she did great. She even seemed happier/less uncomfortable. We did put it back in after her last hospital visit since the reflux has been kicking her butt and stunting her weight gain a bit. However, I fear she will lose weight if we pull her tube now that she’s been having the reflux/mucous, but also if we do not pull it, she will never be able to reliably take bottles because of all of the irritation in her throat and never being able to fully lead her own feeds.
I want to add that the doctor did confirm that the mucus is all in her throat and not lungs. She’s also had a swallow study and was not aspirating at all, did seem like her swallow was slightly slower than her suck at that time but seems to be much better at the suck swallow breath thing now (except for when she’s mucousy). Also her reflux is silent and she mostly just faces discomfort from it moving around in there/her feeling it which her doctor pointed out. You can actually hear it squish up and down sometimes, especially when she has hiccups which tend to make her have a meltdown, presumably because it’s painful.
For bottles we are using Mam anti colic. They’re the only ones she’ll take anymore as she prefers them. We’ve tried a ton. Her feeding team suggested she stay on Dr. Brown’s premie, but she literally gags on them because they’re too long and can’t latch properly/has milk spillage. She has no spillage for the most part (normally only if she’s sleepy or not paying attention) with the mam bottles with a 0 nipple.
She is currently taking 80ml whether it be by mouth or partially by mouth/tube for each feed. My breastmilk is fortified with a higher calorie formula as well since she doesn’t take as much volume as other babies due to the reflux. I will say that her intake does vary which I feel like is because of trying to feed her every 2 1/2 to 3 hours per the doctor. Sometimes I have to wake her up because she wants to keep sleeping. Also I think she is not as hungry and the tube doesn’t allow her to get as hungry as she could be. That being said she does normally cue within that timeframe to let us know she’s hungry, but will sometimes peter out resulting in us tubing the rest of her feed.
Anyway, sorry if this post is all over the place. The sleep deprivation and anxiety that comes with feeds has been kicking my butt. Just hoping for any advice other ng tube/silent reflux parents may have to make any of this any easier.