Did you know that 1 in 100 babies in the U.S. are born with a congenital heart defect? CHD's are the leading cause of infant death, and the #1 birth defect of live infants. The cause of most congenital heart defects are unknown, yet funding for research vastly lags behind childhood cancer and other genetic diseases.

Has your child been diagnosed with l-tga? I would love to talk with you. Please enjoy my blog and email me if you would like to join a network of parents of children with l-tga and other CHD's.




























Monday, November 29, 2010

It's not about turkeys!

We made it through Thanksgiving, and I would like to acknowledge that I have much to be thankful for.  Often it is easy to feel sorry for ones self and feel like everything really stinks.  But I have a husband who loves me and my kids who bring such happiness to my life.  Really, there is not much else that matters and no matter what happens, I will know this to be true. 

Lots of people have something that they probably want to wish away. I know my wish would be for Nicholas to have a perfect heart.  But he doesn't.  So I can be thankful that he is in good hands and I know that we are being the best parents we can be.  I am thankful that we have found doctors who can give him hope for a normal life.  I am thankful for all the people who have been and will be praying for our family.  I am thankful for the support of our families and friends.  Thankful.....Full of thanks.... 

Thank You!!!

Friday, November 19, 2010

Ignorance is Bliss

Yesterday we got the official instructions in the mail from Stanford.  I cautiously read through them and I, being one who desires to understand the ins and outs of everything, feel reassured that we are in the best hands and feel confident that we are doing the best thing for Nicholas.  My dear husband, however, feels even more scared about the future after reading these pages and pages of information. 

This is the scariest thing either of us have ever faced in our lives.  Nicholas has never looked sick.  Only when he is really active can you hear him struggling to breathe and his lungs rattle and he coughs.  But otherwise, he is just a normal kid.  So it is very difficult to accept that you are about to put your child through a very scary, and somewhat unknown outcome of a surgery.  He has no idea what is going to happen here in about a month.  But it will surely change all of our lives forever.  I can only hope and pray that it is successful and that Nicholas will be one huge step closer to having a long and normal life. 

I will continue to research and learn about this defect to fill my craving of knowledge.  But sometimes I think it is just as simple as being present, not filling your mind with all the details, and that is the contribution you make to the situation.  Lorenzo and I are like that.  He is my rock and has been there for me since the day I met him.  I don't doubt that we will make it through this...we just will deal with it in our own ways.  I will be the rock for this one.

Sunday, November 14, 2010

So.....I did it!!!!

Today I ran my first half-marathon!  Training for these long runs is very time-consuming, so I had never even ran a full 13.1 miles up to this point.  I felt great until about mile 11.5, and then my body (mostly my knees) started to kind of ache.  But I kept going, and finished with a time of 2:24:38.  Not the fastest runner out there, but I finished!  I made it running the entire way, too.  Which was not my plan.  I figured I would have to walk/run/walk/run...but I just kept going.  I did stop for one "potty break" at mile 4.  Wow, what an accomplishment for me.

When I left the house this morning, I got all teary-eyed.  When I crossed the finish line, I cried. I just got so emotional because I fully dedicated this feat to my Nicholas.  I feel so passionate about raising awareness for CHD's.  I don't know exactly how I'm going to do it, but I'm going to do it.  I envision a fun-run with Congenital Heart Disease as the cause.  I just feel like people are so uneducated about CHD's and so many people will have a child born with a defect.  I surely didn't ever think this would be part of my life.  But it is, and I am trying to figure out how to make a difference, even if a small one.

To those of you reading this, I challenge you to do something physical....make your heart happy.  I realized today that you don't have to be first place; you don't have to win the race to succeed. Rather, you have to set a goal and work to achieve it.  Start small.  Walk one mile.  Then jog one mile. You can do anything if you put your mind to it and your heart in it.

My Nicholas may never be a runner.  I don't know what his future holds.  But from this point forward, I will value MY heart and make it happy from now on.

Friday, November 12, 2010

Hmmmm....Makes Sense (From October 27)

So normally I would be a work right now, but instead I am home with the little kids.  Nicholas woke up at 3:15 a.m. vomiting dinner from the night before.  The funny thing is, is that Sienna actually slept the entire night and when Nicholas started stirring, I was very surprised that she hadn't woke me up like she has been at 1 a.m. for the last week straight.  So I guess we just can't catch a break here!  Needless to say, Nicholas threw up every 15 minutes or so for a couple of hours and here we are at home for the day.

It kind of gets me thinking...it makes a lot of sense that the docs at Stanford want him (and Sienna) to be home for three weeks before and after surgery so he isn't around any bugs that are making the rounds.  So we will have the little kids home from around Thanksgiving until after the New Year. 

Gotta Get Moving!!!

So much to do!!!  I have been feverishly trying to get my "ducks in a row" now for weeks, even months.... It seems like every day there are phone calls, appointments, activities, etc, and never a dull moment to top it off!

I am anxiously anticipating what the future holds, but have made some new friends along the way.  I attended my first support group meeting this week for parents of CHD kids.  Mended Little Hearts is the group.  I think it will be a tremendous support for me and my family.  I met several other mothers who have already gone down the road of surgery....set backs....progress....and all the various roller coaster of emotions that come with having a "heart child". 

It is interesting to me....all the parents I have met are just like me.  Normal, hard-working, every-day average citizens.  You wouldn't look at us and think we have children that have such serious issues with their hearts.  We are parents that want the best for their child(ren).  We are moms who did all the right things while we were pregnant.  We didn't choose this.  But we are fighters and will do whatever it takes to give our kids the best treatment and advocate to make their lives better.  I have a renewed spirit and am going to try to raise awareness and do my part to help other families who have a child with a Congenital Heart Defect.

My first opportunity to raise awareness is coming up this weekend.  I have been so-so training to run a half-marathon for some time now, and will be completing my first one on Sunday.  I am going to wear the shirt from Mended Little Hearts so other runners will see it.  This is going to be my new "cause".  Every running event I take part in, I am going to wear something relating to CHD.  My boy didn't choose to have a bad heart; I can make my heart healthier each time I exercise, so I am dedicating this first long run to my Nicholas.