And good luck with that!

Today we went to the Johns Hopkins University Pediatric Gastroenterology Clinic to have the boys evaluated for their reflux and come up with a way to improve their weight gain. The clinic is impressively large and well organized. We got in, registered like as if we were at the DMV only much faster with less creepy people around, got the babies weighed in with their vitals and were speaking with a Nurse Practitioner within a half hour of our arrival.

We reviewed their NICU history, their diet history, their medicines history, their patterns, and symptoms. The Nurse Practitioner did a very brief physical evaluation and said that because the boys are not throwing up there isn't much they can do for us. My response was I don't think that we're getting any relief from this visit or help with their being categorized as "failiure to thrive" and why did we bother coming and she said that she'd talk with the dietician and the doctor and let us know their recommendations.

An hour later, we were just about to pack up an leave it took so long, she comes back with the doctor and they tell us that the bottom line is that because the guys aren't showing the typical signs of reflux (which is basically all the things they are doing now, but that they should ALSO be throwing up a whole lot more) that they don't think it's reflux. And because it's not possibly not reflux (because they aren't throwing up), and because they are going by the babies adjusted ages which are exactly in the middle of the peak reflux stage of most children, and lastly because they have never had a good experieince with eating due to their extreame prematurity (months of tube feeding, gas and severe bloating issues, and early reflux with vomiting that has been resolved with Prevacid) that the doctors don't have any other suggestions except to give us some antibiotics in case there is some kind of infection in their upper GI and to change their formula yet again and to call them back in about 8 weeks to see if they grow out of it. And because they think that the boys might grow out of it they won't recommend an upper GI proceedure because they are so little and it's a very invasive proceedure involving sedation and a brief hospital stay.

So there's nothing they can do to help with the process of eating. And there's nothing that the Occupational Therapist can do to help with eating eather because she thinks the problem is a medical one and will only follow up with us on a monthly basis until we get the medical aspect of all of this resolved. But everyone agrees that they are grossly underweight, not gaining enough weight, and are too small for their ages even given their prematurity. So now because they won't work with us we can't get into the growth and nutritional program at the Mt. Washington Hospital to help fix the "failiure to thrive" issue.
I'm trying to be my kids advocate but I feel like I'm hitting a brick wall yet again. I'm calling the pediatrician tomorrow to give her the update on all of this because I don't know what else I can do. I will also switch the guys back to the Enfamil Enfacare preemie formula because it has the most calories in it and we will fortify it and go back to adding the vegetable oil to every bottle for even MORE calories. And we will still take upwards of two hours to eat maybe 4 ounces.

Oh and I will start trying to introduce solid stage one foods in hopes that will help too. And I will change their feeding schedule from every 4 hours (at 8mos of age) back to every 3 hours just to keep a steady stream of food in them as best I can.

This vicious cycle is just getting worse. They can't eat, so they don't grow, and they can't sleep, so they don't develop during their sleep cycles, and throughout all of this they are screaming every time they have to eat. If this isn't forcing bad eating habbits then I don't know what else could. My babies will be anorexic before they even hit pre-K.

It's a good thing this is RSV season so that we can't go anywhere because the aspect of feeding these guys in public is just frightening. I just can't get over the fact that this is something they will just grow out of. It doesn't seem right.