I am so glad I found this group. I feel like we are alone in this as our friends and family just don't understand. Our 5 month old son spent the first 4 months of life in the NICU, and the first 2 1/2 in an induced paralytic state. Due to this, a bad case of thrush, and his severe reflux, he will not take a bottle while awake. He has been on reflux meds (Zantac, Prilosec, Reglan, Baclofen, etc.) since 3 months of age and has been seeing speech and occupational therapy since 3 months of age. He has also had an NG tube in since birth. We were able to completely bottle feed him while awake for 4 weeks, but at the suggestion of his therapists, we put the NG tube back in. The plan is to sleep eat at night and NG feed anytime he's awake, so as to slowly erase the negative association he has with eating. I don't think it's working and I think the NG is making his vomiting/reflux worse as it causes the sphincter to remain somewhat open, allowing food an easy path back up the esophagus. He used to vomit after every feed, but we've been able to reduce that to 2-3 times a day. Currently, he eats 100 mLs every 3 hours on the dot. We have found that consistency is the key to helping control his vomiting.
It's very frustrating because parents should look forward to feeding their child, and it's become such a chore to us. He's a very happy baby....until he sees the bottle and knows it's time to eat. We feel homebound because he will not eat if there are ANY distractions to wake him and we are always in fear of him vomiting. We are so very grateful for his life, because he almost did not make it, which makes it hard to even complain about his feeding issues.
I'd love to hear your experiences and find what has worked for you and has not. It's such a relief just to know we are not alone!



I forgot to mention that he sleeps with his crib mattress inclined and we hold him up for at least 45 mins post-feed, whether it's NG or bottle. He is currently getting Prosobee at 26 kcal/oz. and sees a feeding therapist (OT) twice a week. He had a gastric emptying study, which came back normal. He had several abdominal surgeries, which is the cause of his reflux.
Hello and welcome to our support community! Be sure to read the other Shareposts about sleep feeding and infant reflux for a wealth of information about caring for your baby and coping with reflux.
I am glad you are working with a team of doctors and feeding therapists. It can really take a team effort to figure out the best approach for your baby. I wonder if any other formulas have been considered or tried. I know Prosobee is soy based. Many infants with digestive issues have difficulty digesting milk and soy. Often a hypoallergenic diet is tried. There are many brands and types to consider so you and the doctor will need to look at this. Sometimes this is referred to as milk soy protein intolerance or mspi.
Let me know what else you have tried.
Keep in touch and let us know how you are doing.
Jan Gambino
The Reflux Mom
Hi Jan,
Thanks for your reply. While he was in the hospital they tried Progestimil, Elecare, regular Enfamil, and a few others that I can't think of at the moment. Someone has suggested Probiotics--do you know anything about that?
-Kellie
And Neocate
Hello again...wow...talk about taking a tour of the formula department. So I am guessing milk or soy are not an issue for him (allergy or intolerance). Sometimes there is a trigger such as food to cause all of the discomfort. The specialist can go through the list of triggers and related digestive issues to see if there is a underlying problem. I wonder if the interrupted feeding during the hospitalization has led to some fear about eating. The other issue is the tube feeding. The ng tube can make swallowing difficult. My daughter had an ng tube briefly at age 6 and she said it felt kind of annoying to swallow food. I am not sure if a baby gets used to it after a long time on a ng tube. My understanding is the ng tube is meant for short term feeding intervention.
Probiotics are worth mentioning to the doctor. I have used this treatment with my daughters and it has really increased their digestive comfort. I would not say that it "cured" their reflux. However, a little comfort could make a big difference in your day! You both deserve that!
Hope some other moms and dads will add their two cents...
Jan Gambino
The Reflux Mom