Friday, September 18, 2015

Setbacks

We haven't had the best couple of weeks here.

What we thought was Helena's reflux acting up was actually a cold that she caught from My Big Guy (he also shared it with the entire family). The symptoms of reflux and a head cold are shockingly similar, and with the dire warnings the doctors and nurses gave us about Helena catching a cold we overlooked that possibility because she wasn't in that bad of shape. Luckily, we went to the hospital to get her stitches clipped and her cardiac nurse was all like, "No, that's totally a cold!" It was just good timing that I happened to make the appointment with them because her stitches happened to start peeking out. We would have just kept thinking it was the reflux.

The good news about the cold is that it explains her aversion to eating - she can't breathe while she's eating because her nose is so stuffed up. Once the cold clears up we're going to get back to trying to get her to take more food by mouth, but at least we have a real reason as to why she stopped her oral feeds. After getting some new meds and switching to Nutramigen the reflux seems to be doing much better, we just need to get the cold under control now. All her doctors and nurses agree that there's no point in trying to make her eat by mouth while she has the cold because again, she can't breathe while doing it.

We had a visit to the pediatrician who confirmed that the cold is just a cold and there's nothing we can do but let it run its course. Her lungs are clear and she's not running a fever so meds won't help with anything.

We also saw the cardiologist and learned that the shunt seems to be doing its job a little too well. Helena has too much bloodflow going through her heart right now. They put in a big shunt assuming that she'd grow into it rather quickly, but she's not growing as quickly as anyone would like so the shunt is still too big. As a result Helena has congestive heart failure.

Now, congestive heart failure is a horribly misleading name for what's going on. Her heart isn't failing. Basically what it means is that her heart is working too hard, which is is because it has too much blood flowing through it. The cardiologist and the surgeon and the whole cardiac team from our hospital met and discussed Helena and decided not to do anything right now, but to give her a little more time to grow into her shunt. If she grows into the shunt the heart failure will go away. In the meantime we've adjusted some of her meds to deal with the symptoms of the congestive heart failure and we're going to really try to get her to eat more. Her cardiologist said her heart functions all look great, again, it's just too much bloodflow going through it.

It's sort of horrible cycle again - her body is working so hard just to be alive that she's tearing through the calories she consumes so quickly that she's not gaining weight. But if we try to give her more food she's likely to puke it up, or it might cause her body to have to work more to digest more and burn even more calories. But she needs more calories to grow. We upped the volume of food a little, but we don't want to overwhelm or overwork her.

We go back to the cardiologist in two weeks and we'll see what he has to say about her then. Hopefully by then the cold will be gone and she'll have gained some serious weight.

Despite the setbacks Helena is still happy. She loves being snuggled, especially when there are butt pats involved. She has also developed a fondness for her playmat which her brothers love since they get to lay on the floor and "play" with her.


We're just taking it one day at a time, and hoping and praying for the best. Her doctors don't seem super concerned with the situation since they're giving her more time to let her body sort of work this out on its own, which we really like. Hopefully it does just that.

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