Jade had an interesting couple of days. It was the usual fighting against feeding, occassional force feeding of a couple ounces of formula, because she *still* refuses to take a bottle or the SNS (supplemental nursing system), and frustration and tears on both our parts over all of it, but I guess I must have gotten enough in her by the sheer number of times I nursed her, and all her sleep nursing, because yesterday she was up to 10 lbs, 11 oz, and this morning she was up to 10 lbs, 11.4 oz.
So not a good couple days, but still some EXCELLENT weight gain. An ounce a day would be great, but an average of 2 oz a day is awesome, and I’m just praising God, even though Jade hasn’t made it easy by any stretch of the imagination.
I love that she’s gaining weight, but I *hate* that it takes 24 hours of struggling with her to get enough food in her, and I really want to get to the bottom of “why” so we can try to fix whatever it is. The force feeding of the formula is just torture for both of us. I mean she’s really a happy, smiling sweet little girl, the vast majority of the time. It’s just feeding time that’s so hard…well, that and bath time, but that’s an entirely different issue.
I am starting to do a little more reading and talking to some other reflux Mom’s and have come to realize that the upper GI does *not* actually diagnose or rule out reflux. All it does is look for physical issues that could cause it – hiatal hernia, pyloric stenosis, etc. Kids with horrible reflux can not reflux on a GI, and kids with no reflux can throw up during a GI (and who could blame them, really). So, now I’m left wondering, with her still fighting feeding, of any kind, more often than not – what’s making her so hesitant? She doesn’t seem averse to latching on or nursing in general, and will do that readily, it’s after the first minute or so that she starts fighting usually – sometimes sooner (like a couple seconds). It’s really hard not to assume we’re either dealing with an oral aversion of some type, perhaps caused by the past thrush experience, or perhaps it hurts to swallow because of past or present irritation caused by silent reflux.
So the next question would be – do we just kind of keep treating her, just in case, and assume her throat is hurting from past or present silent reflux, or do we stop treating her all together and hope she doesn’t really have it, or do we do further testing?
To definitively rule out or diagnose reflux she’d have to have an endoscopy and/or pH probe test, neither of which sound pleasant or cheap. The endoscopy is basically a colonoscopy in reverse. It’s just the other end – they take pictures of her esophagus and so forth and then take a biopsy which can help determine if allergies are causing the issues. That requires general anesthesia since they’re going down the throat. The pH probe is a little less invasive, but requires 24 hours, which, unless I’m mistaken, would be an in-patient procedure. That is where they place and leave a probe in the esophagus for over a 24 hour period to measure acidity and how much and how often she refluxes over a 24 hour period.
I’d say the eating issues could be heart related, except for one thing. From all I understand, the kids that have trouble nursing and gaining due to heart issues are very weak. Too weak, in fact, to have the energy to eat. Jade may be many things, but weak is not one of them. It took me, the doctor, and the nurse to hold her down for the GI. Same goes for taking blood, giving shots, formula feeding, or anything that she hasn’t given us express, written permission to do. She’s a fighter and doesn’t seem weak by any stretch of the imagination, although on particularly bad days (feeding wise), she will sleep a more than usual.
Her next appointments, both pediatrician and cardiologist are September 5th, so we’ll revisit the issue at that time. Meanwhile I do have a call in to the cardiologist, just to let him know she hasn’t been eating well – because while we’ve talked at length with her pediatrician on the issue, we haven’t seen him for almost a month, and hadn’t talked about her feeding issues quite as much at that time. One of the things he has been looking for is issues with her eating, so who knows, perhaps he’ll want to see her this Tuesday instead of next.
