Hypoplastic heart syndrome

For more info on hypoplastic heart syndrome here is a link: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002096/

We choose the 3 step surgeries for Abby. She had the Norwood and was on the vent for a long time. Everyone kept telling us Abby was on life support for a long time. I don't think they expected Abby to live, but here she is today. They had extubated her once, and she failed, second time was a charm! We love you Abby.

Now for your part. If you don't have pulse oximetry testing in your state to screen newborns write your congressmen. Tell one person about congenital heart defects. Look it up if you don't know what they are. Learn something new every day! Tell someone you KNOW someone with a heart defect, and you do! Abby! Get to know Abby, she may talk and walk a little different, but she is just like you and I!

Signs and symptoms to watch out for in a newborn.

Bluish coloring around the lips, feet or hands. There may be some on the chest.

Heavy breathing

Not feeding well. In abbys case she would latch on with breast feeding but couldn't suck. Actually she could, she just didn't have the energy.

If you have a chd in your family history, seek help before pregnancy, and get a 2d ultrasound. Genetic testing should be available, and its better to be prepared then to be totally blindsided. History of a chd can also mean if someone has something as little as a hole in the heart. I didn't know that....so anything that you may think is non essential, do share with your doctor anyway.

Please share my story, and info with all you know. 1 in 100 children are born with a congenital heart defect, and funding is not as much as is pediatric cancers or autism.

Thanks so much for reading.

Until next time.

Carole

My heart kid

It's hard to believe that Abby will be 13 officially in October. We had a splash station party for her in August. Splash station is a water park. It rained that day so they had to shut the park down, so they didn't get to play too much, but everyone said they all had fun. Abby needs to write thank you notes for her gifts.

It's amazing, it feels like just yesterday I was crying my eyes out for my beautiful teen. She was on life support for two months. And yes, I make sure people know what a rough start Abby has had. Abby has her moments, but she is a great kid, and a very loving kind girl. She hasn't had it easy like some kids, and worked alot harder to do things, unlike Becca. Don't misunderstand me, Becca didn't have it so smooth either, but she didn't have 3 open heart surgeries and a palate surgery like Abby.

Abby is in 7th grade, and so far so good. She's a big bike rider, and I want that for her, she's not lazy by any means. Of course unless it's her bedroom. That's another topic for another day. She loves her sister, and treats Sparky, our puppy beagle, like a baby too. Abby desperately wanted a baby brother, but I was too overweight, and too old. So we had to settle for Sparky. We love Sparky...when he's not in the garbage.

Abby takes her own medicine, and is more mature then last year. I'm almost saddened she's growing up, but she is beautiful. Did I say she was kind and beautiful. I'm at a loss for what to get her for Christmas. She just might get that cell phone. Boys haven't started to call yet. I hope I have a few more years. Well that's all for now. We will go for another heart check in November or December. Everything so far has been great. I will post some info on Hypoplastic heart syndrome for those who don't know what it is. I haven't posted on this blog very much, but I will.

Until next time.

Carole