I Doubt We'll Ever Understand Why, But At Least We Can Try To Understand IT

I've spent a fair amount of time over the last few days, while Oli and Athan have been napping or in the middle of the night when I can't sleep, pouring over the internet trying to find anything and everything I can about Hypoplastic Left Heart Syndrome.  My hope is that if we can at least understand what IT is, then maybe we can deal with all of this a little better.
I think we're in a position in which we'd easily like to ask, "Why?" Why, does our little girl have to have this defect, when it only occurs in roughly 9 out of every 10,000 live births? Why our family? Why wasn't one "heart child" enough? The simplest answer, of course, is genetics. Something in our genes, either JR's or mine, that caused something in Athan and Jillian's hearts to "zig instead of zag" as JR likes to say.
But, the fact remains, that no matter how many times we ask "why?" we will never get an answer. Not one that really makes sense. I've heard that some questions are better left unanswered, but this just proves that some questions just don't have answers.  
In my search for all things HLHS, I found some pretty helpful websites. One is littlehearts.org and has stories of all kinds of "heart kids". There's stories of kids who have survived and thrived with HLHS-some of them even 20 or more years old (sad thought, I know, that 20 or 30 years old is a "long life span" for these kids, but at least they have been given a chance). There's stories of kids who did well at first, then died later. And there's stories of kids who never really had a chance. There's even stories of kids with Athan's condition  (Coarctation of the Aorta- COA). 
I've looked at the American Heart Association website. The Mayo Clinic website and just about every other one I can find. I've read up on all three of the surgeries, and have seen pictures of actual, teeny, tiny hearts comparing a healthy one to a HLHS one. I've seen countless pictures of little ones with noticeable scars running down their chests. It sucks to think that Jillian will be one of these kids, but I'd rather her have a scar than not give her a chance at all. After all, just over 2 years later, we rarely even notice Athan's scar anymore. 
I guess my hope is that by learning as much as possible, we can prepare ourselves, if only a little.

What A Difference A Month Makes...

A month ago today we were anxiously waiting to find out if Baby Janik #3 was a boy or a girl. With baited breath we eagerly waited for the news. At one point we saw the umbilical cord in a spot that made us guess boy. But a few minutes later the ultrasound tech revealed to us that we were having a baby girl! We were honestly probably in a bit of shock. I'm not sure that either of us said anything, although I did ask her if she was sure... "Yes," she said. "No boy parts there." 

To say the least, we were (and still are),excited to think of Oli and Athan being big brothers to a little sister.  Outfits of pink and purple began to take up space in the closet and we started to think of tea parties and dolls and all things girl. 
 
Three days ago we returned for another ultrasound. Our previous visit gave no indication that something was wrong. Everything looked good, we were told. So, when our doctor told us this baby, our perfect, beautiful baby girl Jillian, had a problem with her heart, we were taken completely off guard. Every emotion imaginable came pouring out of us. We were scared, angry, resentful, confused. We still had no clue what exactly was wrong. We did some research and found some stuff on the internet, but hoped that we were wrong. 

Today we went to Children's Hospital in Denver and our worst fears, short of her not having a chance to survive, were confirmed. Jillian has been diagnosed with a congenital heart defect called "Hypoplastic Left Heart Syndrome". The simplest explanation is that instead of a normal, healthy heart with four chambers working to turn unoxygineted blood from the body into oxygenated blood (with the help of the lungs) to be used by the body, Jillian's heart only has three chambers. There's no chance for the fourth chamber to just grow. There's no chance to somehow create a fourth chamber. Surgically the only option is to make the best of what there is there, and turn an imperfect, non-functional heart into one which somewhat functions, but not anywhere close to what it should.

We have basically been given three options.

Option One: Surgery. Well, surgeries.  The first surgery would most likely be between 3 and 10 days after birth and recovery could roughly last anywhere from 2-6 weeks.  Surgery two would happen between 4 and 6 months and again recovery could last roughly 2-6 weeks. And the third surgery would be somewhere around age 3. 

Option Two: A heart transplant. 

Option Three: Do nothing and let nature take its course. 

We could never hope for another parents' baby to die so ours could live. And we absolutely WILL NOT give up on Jillian, so, we have decided to do surgery. While this is not guaranteed, we feel like we have to at least give her a chance.