Friday, September 3, 2010

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.

1 comment:

  1. I am so proud of you guys and the grace you are handling this with. I'm sure all your moments in the coming months may not be so graceful but you are amazing parents and she is just as lucky to have you as you are to have her. When you are feeling like you can't make it any further, know that Rob and I will always be here for you guys to lean on. We've been through the worst case scenerio and it was as bad as it seems but we made it through and it has made us so much more thankful for all that we are blessed with. I am expecting the best out of this and I hope you guys will too. You guys have brought some strong little people into this world and I expect that Jillian will be just as strong as the boys if not stronger. She may not have the life you pictured but sometimes living by the moment can be better than setting expectations anyway. We love you guys lots and we are happy we can be here for you now.