Been Way Too Long - Surgery Coming

It's hard to believe that we are now less than 1 week away from Olivia's surgery.  It will take place at Children's Hospital of Philadelphia (CHOP) on Thursday, 10/4/2012.  While we are very grateful and thankful to be here and to have her at one of the best pediatric hospitals in the world, the thought of anything but a perfectly successful surgery still terrifies us to think about.  We have a lot of family and friends coming up to be with us for the surgery, and we are very thankful for that too.

What Olivia has:

Single Ventricle Heart  -  her heart only has one pump where normal hearts have 2
Asplenia  -  she has no spleen...she was born without it.  This makes it more difficult for her body to fight infections.
Heterotaxy Syndrome  -  some of her organs are not in their "normal" location.  For her, it is her liver and stomach.
Cyanosis  -  referred to as "blue babies" due to low blood oxygenation, causing the hands, feet, lips, etc. to often have a bluish color

Normal Heart Function

In a "normal" body, the blood comes from the body (depleted of oxygen) back to the heart.  The heart pumps (one pump) the blood to the lungs to get oxygenated.  The lungs send the oxygenated blood back to the heart.  The heart pumps the oxygenated blood back out to the body ( 2nd pump).

Olivia's Heart Function

Since she does not have a normal 4 chambered heart with the proper divisions and function, the blood from her body (deoxygenated blood) was coming into the heart and mixing with the blood that was coming from the lungs (oxygenated blood) and a mixture of each was flowing to the lungs and back to the body. 

1st Heart Surgery (in China)

That surgery was called a bidirectional glenn.  That surgery rerouted the blood from the upper half of her body straight to the lungs by connecting her Superior Vena Cava to her pulmonary artery.  This reduces some of the work on the heart and makes sure that the deoxygenated blood from the upper body is going to the lungs to get oxygenated before going to the heart and then out to the body.

2nd Surgery (this surgery at CHoP)

This surgery is called a Fontan.  This is the 2nd surgery, intentionally done in phases, and it does the same thing as the 1st surgery for the blood coming back from the lower half of the body.  This is done by connecting the Inferior Vena Cava to the pulmonary artery.

The goal (as I understand it) is to reroute all of the blood coming back from the body (oxygen depleted) straight to the lungs to get oxygenated, then to the heart, then the oxygen rich blood goes back out to the body.  This prevents the mixing of the oxygen rich and oxygen depleted bloods.

Well, that was probably a lot more than you cared to read, and hopefully, it is factually accurate.  It is at least the way that I have come to understand what is happening and what they are going to do to correct it.

Now for an update:

Olivia is doing great!  She is growing and learning and has developed an incredible personality.  She has really come a long way with her speech therapy.  She is now able to put a lot of words, phrases, sentences, and thoughts together.  She is able to recognize and say her letters of the alphabet, but not say all of them in order.  She is working on counting now.  She is able to get to 12, but she leaves out the 7.  We are working on potty training and that is going very well.  Best of all, with Danny staying home with her, we have been able to reduce her exposure to other children with colds, which has reduced the number of colds she got and the length of time it took to get over them.

Please keep us all in your thoughts and prayers!