Thursday, May 2, 2013

ChinaBean's Unique & Special Heart

From the moment we knew ChinaBean, we knew her heart was special and unique only to her.  We also knew that she was tough and a fighter (hence her American name which means "hardworking")!  I hope that by sharing a bit about ChinaBean's condition that others may benefit by our experiences.  

ChinaBean has a collection of congenital heart defects.  She has a hole between her atriums (the upper chambers of her heart), an even larger hole between her ventricles (the lower chambers of her heart), her heart actually sits on the right side of her body along with a few other unique traits.  In December of 2011 ChinaBean had a B-T (Blalock-Taussig) shunt placed to help get blood to her lungs.  The temporary shunt brought her oxygen levels up to the mid-60% range.

Last week we took one of the first steps towards fixing ChinaBean's heart.  On Monday afternoon we met the cardiologist that would perform her heart catheterization.  I liked her instantly because she handed out mini chocolate bars!  Our daughter needs a little encouragement (a.k.a. bribery) to warm up to the medical community.  Remember the picture of her getting her temperature taken?!

The next day we woke up early to head to the hospital.  Still suffering from jet lag, the 2 am bottle feeding before she was restricted from eating was a bit painful.  We did decide to proclaim ChinaBean's love for her dad!


They took her back at about 8 am.  During the morning the doctor performed 2 echocardiograms and a very detailed heart catheterization.


We had some good company to help keep us occupied during our wait.  Cathy, our friend from China and who has known ChinaBean as long as we have, brought us breakfast and kept us company until the cardiologist came to speak with us after the procedure.



Cathy took these pictures of us listening to the cardiologist explain what she found out about ChinaBean's heart.  My good friend Julie is in the background trying to listen to all the details because she knew we would be overwhelmed by everything the doctor said...and she was right.




We found out that the pressures in ChinaBean's lungs are good and she has not developed any secondary problems due to her heart conditions.  Her heart is on the right side as reported by China, but thankfully the chambers of her heart are not flipped.

We were originally scheduled to have ChinaBean's open heart surgery tomorrow (Thursday), but after we met with the cardiac surgeon this past Monday, it has postponed.  He has recommended that ChinaBean have an MRI so that one of the doctor's in the group can create a 3-D model of her heart.  Do you think they would let me keep it and put it in a shadow box?!

So, we wait some more.  Her MRI is scheduled for this Friday.  Next Monday morning all of the cardiologists will sit down again and discuss ChinaBean's case.  They will determine whether or not she has enough room in her ventricles to keep both of them (and keep 4 chambers in her heart) or if they will make a single ventricle (and take her down to 3 chambers in her heart).  We will meet the surgeon Monday afternoon and he will tell us what they have decided.  Barring any sickness, and if ChinaBean is cleared for surgery, we will be back at the hospital early next Tuesday morning.

Until then, we wait and we play!

We've toured the Caterpillar Visitor's Center in downtown Peoria.


Pointing to where Baba (Chinese for daddy) works in China.



Jamie received a US patent for his work on this joy stick.  Jamie has earned 3 or 4 patents (I'm a proud wife)!

We've introduced ChinaBean to Chick-fil-a!


We've visited friends!  


ChinaBean met one set of great grandparents!


Great Papa demonstrating the iPad mini.
ChinaBean opening her card and handmade quilt
from Great Grandma.

And, we've chatted with friends.


Now, we wait some more.

5 comments:

  1. It is a lot to take in. I'm really glad the surgeons went over things with pictures--it makes it a bit easier to understand by looking at it. I'll be praying hard that she can have 4 chambers in that special heart of hers.

    Those pics with the great grandparents.....priceless!

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    1. Thanks-we've been very pleased with the staff at the hospital. Keep praying for those 4 chambers!

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  2. Question regarding the whole 3D model of ChinaBean's heart thing - like, they're actually going to make a solid model out of plastic or something with a 3D printer, or does the 3D model just exist virtually on a computer as data? An actual model that you could hold, look at, and put in a shadow box would be really cool (not to mention its original purpose, being helpful for the surgeons as well)!

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    1. I think probably just a 3-D model on the computer, but wouldn't a solid model be really awesome?!

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