Jade Update – 9/5/06

Ironically, after all my stressing over those liver tests, and what they meant, the cardiologist didn’t seem at all worried about the liver test results. He said they are higher than they should be, but they’re not high enough to cause alarm. For him to be worried they’d have to be like triple or quadruple the normal level. He felt for her liver, just to be sure, and said it didn’t feel enlarged at all. He did say that he could prescribe her a diuretic to combat any signs of pulmonary hypertension or fluid retention, but he didn’t really didn’t see the point because, basically, even *if* she were in congestive heart failure, it would be the very, very beginning, and not likely to progress quickly, and chances are excellent that she’s going to have her surgery before it would get to the point that she actually needed medication to keep things in check. So that’s good.

What he did see was that her left Atrium is beginning to enlarge just a little bit, from the VSD. He also said he’s starting to suspect that she might not actually have much of a pulmonary stenosis at all.

Usually they diagnose a pulmonary stenosis in small infants by look at the velocity of the blood flowing through the valve in an echocardiogram, and hers had seemed really high, and it sort of looked like there might be a slight stenosis, and then even higher, later – which he again thought was a restriction of the opening (think of a thumb over a hose opening increasing the water velocity), but he said as she’s grown, and the valve is larger and easier to see, he thinks the higher velocity of blood flow is almost entirely the VSD (think, water simply being turned up higher on a hose, increasing the water velocity), which means it’s probably a good idea to operate to prevent damage to her lungs from the VSD.

He also thinks the thrush is possibly what started the downward spiral – she didn’t eat well because of that, which caused her to weaken, which in turn caused her to eat even worse, to the point that the VSD might have affected her earlier than it otherwise might have.

All of this to say, he is just of a mind to go ahead and get her fixed up, because her eating isn’t getting better, her weight gain is not really getting any better, and this will at least eliminate the heart factor in all of this, as well as prevent the VSD from damaging the vessels in her lungs. If they do confirm the presence of a PS in the 3-D imaging, they should fix that at the same time.

He’s referring her to the surgeons at UVA and we should get a call this week. He said to let him know if we don’t hear from someone by the end of the week. He also said he’s going to push for them to schedule surgery right away – hopefully within the next two weeks.

He said when she has her surgical consult, they’ll do a 3-D echo of her heart so that they can see better what we are and aren’t dealing with. His gut feeling is that her VSD may be bigger than they can see with the echo has access to in our town. Sometimes the angles can be deceiving. He said hers *shouldn’t* be affecting her the way it is, but if it’s larger that would explain why she’s not eating.

He also kept asking about the upper GI and if it showed anything, which I thought was odd, since I’ve told him at least twice that it didn’t. But then, he mentioned that he thinks there still might be some other issues at play. He also finally admitted that perhaps the GI just didn’t catch reflux (somtimes kids just don’t happen to reflux during the test), and maybe that’s still an issue for her.

I laughed because she was fussing during the echo, and he said, “Oh, I see she’s kind of colicky” and I told him, “Well, kind of, but right now she’s just ticked that we’re restraining her.” He agreed she got a little bit of an ornery streak to her. I had to hold her for the echo because she wouldn’t stop bucking him on the table. She ended up much happier and sweeter once I held her, and more importantly, she could see the image on the screen (she’s TOTALLY into knowing what’s going on around her). She licked on his fingers all during the echo, which is kind of gross, but hey, at least she was holding still so he could check her heart out.

Later on this afternoon we had an appointment with the pediatrician. That was relatively short. Basically I just relayed all the information from the cardiologist visit, and we talked about her weight and so forth.

We decided to hold off on her 4 month visit, since there’s a good chance she will be in the hospital or possible recovering by that time. We’ll just have her go in at 5 months.

She’s not doing the greatest weight wise. She had one good week and gained over 7 ounces, but now is back to gaining a half an ounce here and there, staying put some days, and sometimes even losing an ounce or more in a day. Basically her body has gotten to a mass that she’s having trouble sustaining nutritionally, due to the heart issues. So we just keep getting as much as we can in her – either nursing or occassionally supplementing (which is still a battle) on bad days – but it literally takes all day and night of pushing her to eat to get enough in her. I still mostly nurse her in her sleep during naps and in the night. I’d say only about a fifth to a quarter of her eating is while she’s awake. She’s just not interested most of the time. So I just wait for her to fall asleep, and feed her then.

She’s also taking many smaller naps throughout the day, which I think is a sign that she’s struggling a little bit.

The more moms with kids having heart issues I get to talk to, the more I realize that every child reacts to heart defects differently. Some turn blue, some, like Jade, just get a little pale now and then. Some literally appear too weak to nurse. Others, like Jade, are ornery devils and get ticked off and throw tantrums when they don’t feel like eating, and show their weakness in other ways, like sleeping more often. I just need to watch for any of those things to increase noticeably, but so far, we’ve been lucky and she really hasn’t presented with any alarming signs, other than the eating issues. It’s been great to be able to find other moms online to compare notes and find out that there are other kids out there who presented differently in some ways than their doctor’s expected. Or just to hear stories and support one another with listening and with prayers.

So we’re going to just keep on keepin’ on until we get a call about a surgical consultation, and then we’ll let everyone know what’s going on after we talk to a surgeon. I am actually looking forward to the surgery, because I know how much it will do for her.

Keep the prayers coming.

Our little Belle