How’s Charlotte?

Growing like crazy, thanks.

Today’s helmet refitting report:

  • Charlotte’s noggin grew 3mm in the past week!!
  • Her asymmetry was originally a differential of 12mm from side to side. Today, it is reduced to 3mm.
  • She’s growing so fast that the helmet is making “hot spots” or dark pink spots and some abrasion on her head. We’re keeping it off until tomorrow to make sure that her skin doesn’t get any more irritated.

As much as I hate this helmet (and, no, I still don’t think the darned thing is cute), it is one of the two best decisions we’ve made for our daughter. Originally, we’d hope there was a slim chance she’d be done with it by her first birthday. Now we know it’s practically a sure thing.

The cardiac report (or as I like to say, “Oh, that’s right, I remember now, Charlotte has a heart problem”):
It turns out that the lung perfusion scan showed essentially the same information as last time we saw it: 73% of her blood is flowing through the left pulmonary artery; 27% is flowing through the right pulmonary artery.

What does this mean? In a typically developing baby the blood flow should be nearly equally divided between the RPA and the LPA. Clearly, we’re not at an ideal place. This flow will be used as the indicator that a) Charlotte needs another balloon angioplasty procedure or b) it’s time for her next open heart surgery. In the words of Dr. Young, however, “we’re not there yet.”

The doctors want to put off the next open heart surgery for as long as they can. The larger the parts they can put into her during surgery #2, the longer we can stave off surgery #3. As for me, I’d like to get this annoying eating problem fixed before we even contemplate another surgery or procedure. I’m terribly afraid that if we don’t tackle the eating problem first, it will get worse after a surgery.

2 thoughts on “How’s Charlotte?

  1. I’m sorry that Charlotte’s scan didn’t improve and that you’re still having such problems with her eating. But, WOW on her head improvement!!! I’m so glad that things are going so well for her in her helmet and that you can cross that issue off your list sooner that you anticipated. You guys certainly deserve a break! Plus, I know how much you hate the helmet (aside from what it is doing of course). Way to grow Charlotte!!! I worried for you guys that with her eating issues that her growth would be slower and that it would take her longer to see correction, but she proved me wrong! Yay! And I know you don’t want to hear it, but I’m one of the few that actually do think helmets are cute b/c it accentuates their cute little faces so much. Maybe that’s just b/c we had one for 15mos so I didn’t even notice it after awhile! Anyway, I’ve been checking up on you guys and I just wanted to let you know how happy I am to read your helmet update.Sarah (Hannah’s mom, DOCgrad)

  2. Hi Sarah!I’m so delighted that you check out our blog.I tell *everyone* about your blog. Now that we’re moving back to Blue Cross-Blue Shield Massachusetts, I even told our case manager about it. You’re right, of course, the helmet does accentuate their adorable faces. Somehow Charlotte’s huge peepers look even bigger–but I prefer to think that Charlotte enhances the helmet rather than the other way around.I hope to be signing as “STARband Grad” very soon!–Ilene

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