Monday, January 30, 2012

CHD Awareness Month

February is CHD Awareness Month, with Feb. 7-14th being CHD Awareness Week.

Of course, if you are reading this blog and keep up with all of the Lu updates, then you already know about Congenital Heart Defects. Most of you even know about how common CHD is and that it affects about 1 in every 100 children born in the U.S., and even more in other countries. But how many of you knew about CHD before you learned about Lu or had a close friend or family member who was affected by CHD? The nurses on the pediatric floor, when Lu was first admitted to the hospital for a misdiagnosis of pneumonia, didn't even know about CHD. That should tell you how important awareness is. Information is key when it comes to our children, especially when you are dealing with the #1 birth defect.

Before Lu was diagnosed, I had never even heard the words "Congenital Heart Defect," nor did I know how extremely common it was. As a person who worked with babies and children for a living, and someone who was planning on having children, I should have known more about CHD. I should have known about the signs and symptoms and I should have known how prevalent it was. I should have known that, every year, approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects and when I got pregnant, my care provider should have told me about Pulse Ox Testing.

This is why we take awareness so seriously; because people like Cora's mom didn't find out about CHD until it was too late.

So please help us raise CHD awareness. Your knowledge and the choice to share it could save a life.

This is what we are doing to help Little Lu spread awareness:

- Feb. 4th is the Pediatric Heart Foundation 5K run/Walk in Boca Raton, FL. Here is a link to the Facebook event. Little Lu's Crew will be participating and you can join our team or donate by visiting this LINK. We would also appreciate it, if you could share our team page through email or on your Facebook.

- Sharing videos, pictures, stories, and informational links on Facebook is a huge way to spread the knowledge. Keep an eye out for this stuff on Lu's new Facebook page and feel free to share any information that interests you. Here are two links to CHD videos of Little Lu: and Please share! This is how potentially life-saving information spreads! Thank you!

- For the month of February (or the week of Feb. 7-14), Lu supporters and some of the CHD community are changing our Facebook profile pictures to this logo (which was designed by Lu's daddy):

We thank you for all of your support and don't forget to share Lu's blog, especially the CHD Information page! <3

Tuesday, January 3, 2012

Celebrating One Year With a Healthy Heart

January 3rd, one year ago, today, Lu was at All Children's Hospital in St. Petersburg, FL, recovering from open heart surgery. My husband and I sat by her side while she slept, listening to the machines beep every time her newly repaired heart beat with more power than it ever had before. On this first night, her color was better, her oxygen levels were higher, and her respirations were less often and more productive. It was a great feeling.

As our time in that hospital room went by, her condition improved every second that the blood flowed through her heart like it was supposed to. After only a few days, she was eating full meals and scarfing down bottles. She whined and cried in discomfort at times, but most of the time she handled her ordeal with grace and determination. Although it was a tense and stressful time, those 4 days in that hospital room were the happiest moments of my life, up until then. I was finally able to believe that my daughter would lead a normal, healthy, and happy life. I was ready for 2011. It was going to be incredible!

2011 has definitely lead up to my expectations. It has been a wonderful year for our family, just watching Lu grow, play, and learn. She will be 18 months in 3 days and she is right on track, physically and developmentally (or "way ahead of the game" as her Daddy proudly admits). She is talking so much and can say hundreds of words and full sentences. Her favorite phrase (or demand) is, "I want to go OUTSIDE!" She loves to play outdoors, enjoys spotting airplanes in the sky, climbing EVERYTHING, and waving hello to the moon. She loves shoes and carries a purse around the house that is full of Matchbox cars. Her favorite movie is Toy Story and her favorite pajamas have Lightning McQueen from the Cars movie on them. She still eats very well but prefers black olives, scrambled eggs with spinach, pizza, blueberries, and PB&J sandwiches. My favorite thing that she does is at night, right before bed: she will climb on the couch and walk to one end where I sit, give me a sloppy kiss, then walk to the other end where her daddy sits, give him an even sloppier kiss, and then repeat that same sequence of kisses about 5 or 6 times.

Playing "OUTSIDE!"

Loving on her Daddy

Since my last post, we celebrated Halloween, Thanksgiving, Christmas, and New Years. Each holiday her 2nd experience of them, but her first with a healthy heart. Christmas was a great experience for her this year because of her good health and more understanding age. She didn't like sitting on Santa's lap as much as she did last year but I think she was just more interested in running around the mall. She really liked looking at houses decorated with Christmas lights and excitedly pointed out every time she spotted a blow up snowman by shouting, "OH MAN, OH MAN!"

She always holds her hands like that when she is confused or nervous.

Every echo Lu has had since her surgery looks great, showing mild mitral valve leakage but is not significantly affecting her health at this time. We are now seeing her cardiologist every 6 months.

Enjoying a movie and a cookie during her last echo on 12/14/11

Lu is our pride and joy and is proof that a strong will, a positive attitude, and faith can have a rewarding outcome. I have the same feeling of hope and happiness that I did last year, at this time, and I just know that 2012 is going to be even more incredible than 2011. We have everything we could ever want: a daughter who loves life and has been given the chance to live it.

Not a very happy Wicked Witch of the East

Sailor and Lu before Trick or Treating

Merry Christmas and Happy New Year
Pictures from Lu's first Heart Day celebration: Album