Just got a call back from Jade’s cardiologist.
While he’s perplexed that she isn’t showing signs of weakness or listlessness (which part of me thinks is just plain old stubborn tightly-wound personality which she would get from me), he’s concerned about how reluctant she is to nurse and bottle feed and how tough a time we’re having getting enough calories in her – especially the force feeding.
He said the upper GI not showing any signs whatsoever of reflux tells him the reluctance to eat might be heart related rather than reflux, and that perhaps we’ve gone as far as we can without doing surgery. He said they’d really only wanted to wait a couple months any way, so 3 months and almost 11 pounds is an ok place to go ahead.
I asked him what time-frame he was thinking, and when he said “well, maybe till just after the holiday” for a second I thought he meant Christmas or Thanksgiving, maybe, but then I realized he meant Labor Day, because he mentioned the middle of September. So, I don’t have a definite date yet, but sounds Jade will most likely be having surgery sometime in the next month.
He also mentioned something interesting – he said that with some of the 1 dimensional imaging technology – like most ultrasounds and echocardiograms, things can look a little different than they actually are in 3 dimensions, due to different angles and so forth. In other words, he thinks it might be possible that her VSD is perhaps a little larger than they originally thought, and maybe that’s why it could be affecting her earlier than he thought it would.
I did bring up the thought that upper GI’s may not definitively rule out reflux as a culprit, and did he think we should look into further testing, but he is of the mind that if she had enough reflux to make her esophagus raw and affect her eating, then the GI should have showed *something* so he doesn’t think reflux is the issue here.
While I’m not entirely sure I agree with his line of thinking on the reflux/GI results, because I’ve talked to some mothers whose babies had horrible silent reflux, and esophageal erosiions, but for whatever reason, they didn’t show up until they had an endoscopy, *HOWEVER* I am not going to bother arguing about it, because for one thing, we’re not keen on the idea of the invasiveness of further testing for reflux (especially if it’s not the issue for her), and for another thing, we would like to get this heart issue resolved, done and over with, so you won’t hear me talking him out of scheduling the surgery. If he thinks it’s time for the surgery, then it’s time for the surgery.
As he put it, poor eating is a sign he’s been looking for, she needs the surgery at some point regardless, she’s at a good age for it, so he wants to go ahead and fix her up, and hopefully that will take care of her eating issues so she can get back on track growth wise.
Her appointment is next Tuesday, so I’m guessing we might get a surgery date at that time, or shortly thereafter.
