My son Daniel was born at 28 weeks gestation in October 2003 with a cleft lip and palate that was diagnosed by ultrasound around 20 weeks. Those things alone would give a kid eating issues!

Daniel spent 12 weeks in the NICU, though he probably could have gone home two to three weeks sooner if he'd been eating well. Once home, he ate... OK... for about six weeks, then began refusing the bottle. Our pediatrician was no help. (She said, "Stop driving your mother crazy, Daniel." We've recently switched to a new doctor.) She didn't even want to treat what seemed to be a case of thrush.

Finally I contacted the speech therapist we'd worked with in the NICU, who recommended a local feeding specialist. She immediately asked our doctor to refer Daniel for an Upper GI, which was done when he was about six months old. Unfortunately, the radiologist was very impatient because -- of course -- Daniel didn't want to drink the barium, and after a few sips, put him under the camera and declared that he did not have reflux. When we protested that Daniel normally ate up to four ounces at a time, the radiologist said he was still able to get an accurate read with a few drops.

So... the following week Daniel had his cleft lip repair surgery, and feeding got a little easier. We swaddled him, cuddled him to sleep, and popped the bottle in his mouth. Generally his instinct would kick in, and he'd swallow as we squeezed formula into his mouth.

This worked for quite awhile, but then we decided to visit family back east when Daniel was about nine months old. He immediately became constipated (because we were using different water in his formula?), began spitting up more regularly and more volume, and ate more slowly. And solids? He seemed to be doing OK with those -- he'd eat a few bites before pressing his lips together.

When we got home, we met with a second feeding specialist who also started by recommending an Upper GI as well as a swallow study and gastric-emptying test. The tests showed that Daniel indeed has reflux, but that his swallow and digestion are normal. Although the digestion is questionable -- he had to drink one ounce of radioactive material then lie still under a camera for 60 minutes while they watched it move through his system. Daniel spit up after 47 minutes.

The pediatric gastroenterologist who referred Daniel for the studies intially put him on Zantac but then switched him to Prevacid as well as Reglan. After two weeks, Daniel is still defensive toward the bottle when he's awake; takes 30 to 90 minutes to eat four to eight ounces; gags, coughs, and burps violently; and spits up anywhere from a mouthful to three ounces during, immediately following, or up to three hours after a bottle. He almost exclusively spits up when he's in an upright position.

Daniel's cleft palate repair surgery is one week from today, and we're not sure what his eating situation will be afterwards. He'll finally be able to suck -- if he wants to. I know his eating problems won't last forever, but when you're spending up to six hours a day trying to get someone to eat, it seems endless.

Becky, hello and welcome :)
Boy you've sure had a rought time of it thus far...I'm sorry to hear about everything you've been through. I understand your feelings of hopelessness and frustration when it comes to feeding. My son Branden, who's now 8 months and has been diagnosed with reflux, used to take FOREVER to eat as well, one feeding would blend into the next. Things have slowly gotten better for us lately in the reflux dept. and I'm hoping that maybe, after the surgery, your little guy will have a better time of it as well. Although the surgery obviously won't fix the reflux issue, it may help him to suck more efficiently and get through a feeding a little quicker. My heart goes out to you but know that there's lots of parents here in the same boat who are willing to provide lots of advice/support. Looking forward to getting to know you better, keep us updated.

Thanks for the support. It's nice to be among people who understand that Daniel is not just a picky eater!

In my intial post, I forgot to mention all of the fantastic things about Daniel. When he's not about to spit up or recovering from a spitup, he is happy, interested in his surroundings, saying Mama, and charming everyone around him. He loves reading, riding in the car and shopping, and swinging and watching soccer practice at the park. Developmentally, he is a little beyond his adjusted age (8 months, as opposed to his 11-month actual age) -- sitting and reaching for everything, standing with help, and pulling himself up -- and weighs about 18 or 19 pounds. Not bad for a guy who once weighed less than two pounds! Since he started out SO little and helpless, Daniel seems like a little man to us!

Hi Becky and welcome!

You're definitely among parents who understand the reflux that you're dealing with.

I hope that Daniel's surgery goes well next week. Please let us know! My cousin's baby is having the same surgery later this month, so any info. that I could pass along would be very helpful.

Please keep us posted on his surgery, we will be thinking of you both and praying for a speedy recovery!

Sounds like you've both been through quite a lot in his short little life! The problem with the eating issue is they get very defensive and almost scared of it, especially when the reflux goes untreated for a length of time. Eating hurts them and they are smart enough to catch on to that after awhile. The problem with initiating treatment after the eating goes downhill is that they take a very long time to trust the process again. It's not usually as simple as treating the reflux and they start eating, although the doctors like to make you think that's the case. They have learn to trust that it won't hurt and that takes a lot of work. What's that saying, once burned, twice shy?

As someone who has lost the feeding fight miserably and been tube feeding for four years, I understand your frustration and concern.

Thanks again for all of the support. We've actually seen some improvement over the last week -- see success stories >> extra calories.... And Daniel has slept through the night twice in the past four days. Everything seems better when you're rested.

Daniel's surgery is tomorrow. Last night I dreamed that I went to the hospital but forgot to bring him. Janette, I'd be happy to share info with your cousin. I'll post an update later this week.

Good luck with the surgery tomorrow. Please let us know how it goes when you get a chance.

Good luck with the surgery! We'll be praying for you both!!!

At least I was smart enough to appreciate Daniel's temporary improvement just before his surgery because now we're back to an NG tube, vomiting, and diarrhea.

Daniel's surgery was Monday and by that evening he was playing on the floor and giving us a few smiles. He was discharged Wednesday as expected even though his eating was still questionable. However, his surgeon (and John and I) thought that he'd do better if he was taken off the IV and got back to his normal routine. The doctor said Daniel needed at least 20 ounces a day to stay hydrated, and we were getting 22 to 24 in him, but then he started spitting up as much as ever on Saturday. On Sunday morning we couldn't get him to eat anything, so we tubed him but then he began spitting up five times as much -- at least 20 times before we took him to urgent care for fluids (another IV!!!).

I'm really glad we changed pediatricians. We saw Daniel's new doctor Monday, and he ordered us a feeding pump so we can slowly feed him all night, gave us Nutramigen to try (yuck -- smells like dog food and really made Daniel poop), and, best of all, asked me to call him with an update the next day and gave me the number that goes directly to his desk. So I was happy at least that someone was listening and trying to help.

Daniel's spitting up has slowed now. We're alternating between pedialyte and nutramigen, no more than four ounces at a time. We try his regular formula by bottle, but the best I've done is two ounces one evening. He's very tired but he's snuggly, and that's kind of nice.

We saw the gastroenterologist yesterday, and he felt this bump (bump????) is a stomach virus or reflux antagonized by the surgery and that we'll see Daniel get back to normal in a few days. Of course, then we'll be starting from scratch with the bottle. But since we had been starting to see improvement, he was confident that the Prevacid was doing its job. Now we just have to deal with oral aversion.

Anyway, I'm anxious and tired.

Wow, bummer about the bump that he's been having since the surgery. I agree with the GI though about the reflux being aggrevated by the surgery b/c every time Shae has any of procedure she goes through at least a week of very severe reflux afterwards.

Good luck, I hope he improves soon!