Wednesday, February 1, 2012

4 weeks post op

Open Heart Surgery post op 4 weeks.  

Charlotte doesn't even seem like the same baby.  She's a busy, growing, chubby, engaging girl now.  I'm SOOOOOOOOOOOO glad we didn't wait any longer to get her surgery done.

She looks AMAZING.  See????  You can hardly see where some of the smaller chest tubes were!  What a difference a few weeks makes. 

We go in for the first post op appointment with the cardiologist today.  I'll be excited (nervous) as to what her ECHO looks like.  Watching them before was disconcerting.  I can't REALLY tell what's going on other than the big, basic scene but I can tell where chambers are and when they flip the coloring on - there is blue and red.  Prior to surgery, with the coloring 'on', her chambers looked like paintball splatter.  Red and blue all mixed and mashed together.  I'm not a doctor, but I knew that wasn't right.  At her discharge echo one week post op, I watched as they put the colors on.  Red on one side, blue on the other.  THAT'S more like it....I'll be glad to see and hear what her doc has to say.  Hopefully no leaks.  Hopefully the patches are still holding and looking great.  Hopefully the pulmonary hypertension is still going down or is all ready down and in perfect ranges.

The whole arm thing is another issue.  We'll see a vascular surgeon right after the cardiologist and they'll do some more investigating as to the healing of her artery.  I imagine there will be another ultrasound to look at her arm and do some comparison to watch for healing and/or change.

Then it's onto the weekly blood draw.  Charlotte is still on twice daily injections of Lovenox, and while I'm REALLY grateful for the medication, I'd love for her to not need it.  We have to have her levels checked at least once a week, then adjustments are made, if needed, in time for the next week's dosage. This may or may not be a long term issue.  From what I can tell, it's not related in any way to the cardiac issues or Trisomy 21.  Just a 'thing' that showed up. We shall see what that means for down the road.

In the mean time, Charlotte is doing all kind of wonderful baby stuff.  She has biweekly therapy appointments where we make her do all kinds of funky things that I just took for granted with my other kids.  It's a pretty amazing learning experience.  Right now, we're watching her vision (PUN!) because she's mostly looking through things and people.  Some of that may be a sensory issue (does. not. like. noises.) or it may be a vision problem.   We're working our way through all the specialties.  Audiology is later in the month as well.  

Here's a photo shoot during her morning exercise routine.  She gave Riley the BIGGEST smile....lucky guy.  

She's also MOVING.  As in scooching.  (HOW IN THE WORLD DO YOU SPELL THAT???  I tried a few different ways and it wind up looking like I can't spell "school" or that Charlotte is into drinking Scotch.  Which she isn't.)   You know what I mean, right?

This is the scene we woke up to this morning.   Note:  Charlotte starts the night out on the big wedge with her head and body making a straight line down the length of the wedge. It's more of a guideline apparently. :)

Charlotte is perpendicular to her starting lane.

Blankets off and waded at the end of the crib.

Happy as all get out but the legs were a pumpin' like she was in a race.  

The girl is going doubt about that one.  


  1. SO glad she is doing so well! Praying for only good news from the doctors today!!! :)

  2. Love seeing all the changes in Charlotte, and, of course, the others grandkids too!