4th Birthday Photo Session

4th Birthday Photo Session

Thursday, September 1, 2011

Andi's Heart: One Year Later...

Today marks the one year anniversary of Andi's heart surgery, a complete AV Canal.  Filling two holes and making two valves out of one. It was a pretty complex surgery, and we are so extremely grateful to Dr. Stephen Langley and his team of angels!  Not to mention all the PICU amazeballs and all the other Doc's & Nurse's...especially the ones that enjoyed Andi so much, they came to check up on her recovery.  That is the lure of Andi Bean...  What an incredible year it has been!

Looking at Andi's chest, the marks of open heart surgery are fading. You can barely see where the central IV line went in, where the pacing wires came out, where the drainage tubes were, and even the chest plate scar isn't super obvious. 

Lighter mark on the left, above her finger is where a drainage tube came out. There are two of those on the right side, hidden behind the g-tube junk.  The right shoulder was home to the central IV, but it's not visible in the photo.  That's her new g-tube, the 'Mini One' button with a split 2x2 and a stomahesive wafer to protect the skin. 
Today, Andi got her button changed to the Mini One button.  It's definitely daintier, as it's more 'cute as a button'.  It's smaller, and the balloon is apple shaped instead of circular, so it's supposed to help minimize leakage.  So far, it hasn't swept my hair back as I just had to change her outfit again, but the split 2x2 slipped out.  I wouldn't be surprised if her balloon needed more water.  We shall see.

Andi also weighed in today.  She weighed 14 lbs, 15 oz's, so just shy of 15 lbs.  A year ago she was 8 lbs, so, it's pretty evident that the leaking g-tube is a major issue.  I have an email in to her dietican to see if we can increase the calories in her formula and reduce the volume.  As the more I seem to pump in, the more it seems to leak. Andi was measured yesterday by our new community health nurse.  She measured in at 27.5" which is almost a 2" difference since 7/5.  Problem is the inconsistancies of the length measurements.  Regardless, she's definitely gotten longer. 

So, today is a huge milestone.  One year since her 'rebirth' with a repaired heart.  We're forever indebted to the team that helped her through this!  You are our heroes and we're eternally thankful.  Now, if we could get the dang g-tube squared away so she received full nutrition, imagine what this kid could do!!!

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