This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Wednesday, August 4, 2010

Sweating -- Imagining The Worst

There are certain things that “normal” babies do that cause little, mild or no concern in parents. Such as: sleeping too much, not eating enough, acting tired, acting irritable, fever, vomiting/spitting up, restless nights, or sweating. But to a heart parent, any one of these symptoms could be a sign of heart failure…

Heart babies are different. Much different. Worrying is second nature to any mother. However, when your child’s seemingly minor cold/flu/infection could mean the difference between life and death… you take every fever, every decrease in appetite, every vomiting and every lethargic episode as serious. There is no such thing as “we’ll just wait it out and see if it clears up on its own”.  Why? Because, 24 hours could mean the difference between mild vomiting caused by tummy upset and heart failure.

And this is for a “normal” heartbaby. Now, add another stress factor to the mix…. LEAKY HEART VALVE AND PRESSURE ON THE RIGHT VENTRICLE. Do you think any parent would take vomiting, racing heart, decreased appetite, or sweating mildly???

So, the other day Scarlett was sweating. Indoors. Under the fan. With the air conditioning on. Todd was home, Violet was home, heck, even my mom was there visiting. Yet, three other people were comfortable with the room temperature… and none of them were sweating. Only my little heartbaby was.  My little moderately-leaky-valve-and-mild-pressure-on-the-RV precious little Scarlett. Why was she sweating and no one else was?  

Immediately, your mind imagines the worst. Oh my god, she’s in heart failure.  Because sweating, along with labored breathing, vomiting and racing heartbeat are all signs of cardiac distress. So we page Beth (Scarlett’s cardiologist)…. Even tho she’s on maternity leave and technically not supposed to be answering pages, she calls back right away.

She said that sweating is actually normal for heart kids. Not quite sure why, but it is normal/expected. As long as she’s not vomiting, breathing hard, or excessively tired, then she’s probably just fine, and the house is a little warm for her. WHEW! What a relief. But how were we supposed to know? It’s like we’re constantly on-edge and worried that at any moment she could go into heart failure.  But since Scarlett was happy, playing, climbing, laughing, and acting like herself… then the sweating was probably because she was just warm.  

So, at last week’s cardiologist appointment she weighed 18 pounds! Yee Haw! She finally reached the 18 pound mark. Only two more pounds and she can go in a forward facing carseat and see something other than the backseat. We are still fortifying her milk with formula, calorie enhancers, and thickening it with oatmeal.She’s not a very good eater anymore. She likes to pick at her food, but leaves most of it on her high chair tray. But somehow someway, we’ll fatten her up.  Her MRI is still scheduled for August 16, we’ll have more answers about when the next surgical intervention might take place. Until then, we just watch her closely and pray that the homograft lasts her at least another year.

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