Rum Tum Tumblers

First of all, Bobby continus to feel much, much better since his hospitalization. He is wretching less than he has in the last couple of weeks.

His GI system is so hard to predict. About 7 weeks ago we went to Bobby's GI doctor who was concerned about his lack of weight gain. He'd only gained 100 grams in the past month or so, according to the doctor's scales and growth chart we needed to up his calories. I say according to the doctor's scales and charts because Bobby continued to have fat on his arms and thighs, continued to have a pleasingly plump belly, and was still growing longer. Personally, I think the scales were off, but Bobby had been on the same calorie content for several months and so we figured that it might be time to increase that.

We moved him from formula that is made at 24 calorie/ounce to formula that is 27 calorie/ounce. Bobby is on Elecare, a special broken down formula that reduces issues with his milk intolerance but is otherwise really hard to digest. He did fine with the calorie increase for a week but then started to have increased wretching. He wasn't throwing up - until recently, his nissen fundoplication surgery prevented him from throwing up but he would gag and gasp like he had the dry heaves and his stomach quaked and shook in a way we describe as having a rum tum tumbler. When that happens, we attach a syringe to his feeding tube to allow the contents to drain. This was happening several times a day. Its horribly painful for him and it does result in calorie loss because half the time the contents of the syringe spill on us or him before we can get it back into his tummy.

So, we called Dr. Sentongo, our GI doc, and asked if we could try moving Bobby to soy formula. In the past, he has been able to digest 30 calorie/ounce soy formula. We'd had to stop using it when his milk intolerance worsened and the soy made him sick. Often this intolerance wanes by a baby's first birthday so we thought it was reasonable to give it another shot.

Bobby then had some food allergy tests and everything came back normal. Dr. Sentongo said we were safe to try Bobby on soy because it was very unlikely that it would make him sick. He might still have an intolerance that would take several days to be realized.

Well, we tried Bobby twice on soy. Once it was a low amount of straight soy. The second time it was 1 part soy formula mixed with 4 parts Elecare. Both times he got violently ill within an hour. He heaved so hard that he did throw up.

So, we stopped the soy. We'll try milk-based formula again after he's two. In the meantime, Valerie and I decided that we weren't going to force the 27 calorie Elecare on Bobby. Instead we went back to Dr. Sentongo who recommended that we start upping his volume. At the time, Bobby had an 11 hour feed at night where he got almost 2 ounces an hour. In the day time he had 3 bolus feeds where he got just under 3 ounces in an hour. Yes, that's eating 14 hours a day. In the daytime, he would get 2 hour breaks between meals. I was increasingly unhappy with this schedule, especially since we had also had a well child visit with our pediatrician where Bobby's placement on the growth chart was perfect - 50th percentile in weight and length for a child with Ds, which is where we've tried to keep him since birth.

But we followed the doctor's advice and tried upping the volume of his feeds and that worked for a few days but the wretching started once again. At some point in this period two other things started happening - one, food started coming up, something we thought the nissen would prevent and two, we think Bobby got a stomach virus.

Last weekend his wretching became nearly constant and he spit up large volumes several times (I've never quite decided where the boundary between spit up and vomiting is). We tried substituting formula feeds with Pedialyte to keep him hydrated but I think his body needed extra fluids because of the virus and we just couldn't keep up.

Monday we went to our long ago scheduled GI visit. We told Dr. Sentongo that we thought Bobby needed bowel rest and an IV and asked him to consider admitting Bobby, but the doctor was convinced that the wretching was reflux related and did not require intervention. This even though Bobby vomited all over me in the waiting room so we had evidence of how bad things had gotten. Valerie and I put our foot down about the feeding schedule - he is not going to eat 3 bolus during the day. The doctor sort of agreed, telling us to give him 2.5 bolus during the day. Valerie and I had a quick exchange of looks that confirmed between us that we weren't going to argue with the doctor and we weren't going to follow his advice either. In Monday's visit, the doctor's growth charts and scales showed what has been the case all along - Bobby is growing fine. He was growing fine in the wake of having numerous formula feeds replaced with Pedialyte. He was growing fine even though he was regularly rejecting his feeds.

Needless to say we're frustrated with Dr. Sentongo, especially given that Bobby ended up being hospitalized for dehydration a few hours and two feeds later. We're frustrated that Bobby had the nissen and yet is back on the road to throwing up, even though the surgeons say the operation went as it should.

We've decided to quit relying on the doctors for Bobby's feeding schedule. Certainly their advice matters, but I think they are so focused on getting a certain number of calories in Bubs that they don't think further than that. When we were waiting for Bobby's heart surgery his doctor told us that the minimum caloric intake for a baby with a bad heart was 125 cal/kg. We never got Bobby above 100 cal/kg (8-9 ounces less per day than what the doctor recommended) yet his weight and growth were fine. We believe that if we cut his feeds to 2 times a day plus the overnight feed there's a good chance he will have less come out through spit ups and venting and he'll feel better so we won't have to keep substituting Pedialyte for formula to keep his tummy under control. Our goal is to find the caloric intake that Bobby can comfortably manage and then see how the weight gain goes.

At Monday's appointment we also asked for another endoscopy to make sure everything is OK in Bobby's system. The doctor doesn't think it's necessary - largely because his growth is good. Yet last year, Bobby spent 2 months throwing up because of a bacterial infection called H.Pylori. It was detected in an endoscopy that was only done because he was losing weight. At some point, it seems to me that if Bobby is in so much discomfort from eating three ounces of formula in an hour, we should be able to have a doctor go take another look. Or at least do a biopsy to make sure he doesn't still have H.Pylori or some other bacterial issue that is oh so easy to pick up in the hospital.

So we keep slogging away. We have gotten so much wrong advice in Bobby's GI life that we don't know what to believe right now. I'm thankful that he is growing well and we aren't in a situation where this is becoming life or death. I suppose part of this is patience, waiting for Bobby to get stronger so he can digest more easily. Part of it is putting renewed emphasis on eating purees becaus he may never do great on an all formula diet. But mostly, I think we need to quit listening to all the outside noise and let Bobby's rum tum tum dictate the feeding schedule.