In the Beginning

Hypoplastic heart syndrome

2011-09-08T05:56:00.000-07:00

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

2011-09-08T05:43:00.000-07:00

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

It's been a long time!

2011-06-12T15:06:00.000-07:00

I haven't posted about my heart kid in a long time. She will soon turn 13 in October, but we will have her birthday early. I am treating her to a splash station party. She deserves it, despite the fact she has her moments...today she really helped mom with cleaning. More than I can say for her 9 year old sister. I don't treat my kids like slaves though, I do help them, and for once ..Abbys room is really organized. It could be better...but there's so much in my house to do. I'd rather blog than clean. My 13 yr old shares a puppy with her younger sister Becca, and they do a wonderful job taking care of their puppy beagle Sparky. I've heard all the parents say, ya wait ...but I think they are pretty dedicated. These two girls do appreciate some things. The only problem however, is they think the puppy is a doll. They are always picking that puppy up. LOL. I have alot of heart friends on twitter and facebook, and I will be passing along some of their very good info here. Remember I do have a yahoo group open for support. Go to chd babies on yahoo. I will print the whole url shortly. Until then.

Carole

Pages and links of interst on this CHD month

2010-02-06T18:44:00.000-08:00

Hair bows for heart kids. ADORABLE!!

http://www.flowerzinherhair.com/index_files/Page781.html

find out about congenital heart defects.

Hello my friends

2010-01-16T22:51:00.000-08:00

I haven't written in along time. I know that many of you have waited for the prizes I promised, and I will get those off. One of the companies majorily pooped out on me. Now I have to pick up the peices! I am so sorry for that. Do any of you have baby girls? I have a couple baby bracelets... I need to find them again...I think most of you had bigger kids though. NOW some of you should have gotten some items....I talked to reps and owners...I believe someone shipped jordan essentials and another kondash kreations. I have some more that I can do. I will not break this promise to you! You are the best! All of you, heros as are your children.

Take care.

carole

The reason I had such delays was that I had to work, and started 2 part time jobs..I really do apologize a million times over!

Another Milestone for Abby!

2009-08-09T20:25:00.000-07:00

Anoher Milestone for my heart baby! She made her first communion this Sunday! I have pics up on facebook, she is a doll!

Next yr her younger sister will do the same!

For those of you still waiting for things in the mail from the giveaway in Feb, they are coming. I got 2 new jobs, and I am reallly really trying to get these out to you. Thank you all for visiting my blog about my miracle and lovely child abigail!

Carole

Site for chd parents, grandparents, kids and others who support chds

2009-04-25T10:37:00.000-07:00

http://zbchde.homestead.com/kidswithheart.html

Kids With Heart NACHD, Inc. started out as a local support group in Northeast Wisconsin. Soon

after we went National. Kids With Heart NACHD, Inc was the first National organization dedicated

to providing support, education, and awareness for congenital heart defects.

Check it out today. Karen does an excellent job keeping us all informed. One thing she does is parent matching.
http://health.groups.yahoo.com/group/chd_babies/

have a good day.

Carole harris
I also have a chd group on yahoo.

Help for cardiac kids

2009-04-12T19:50:00.000-07:00

If you have had a surgery, then maybe you've heard of scar tissue or maybe not. Either way it's something heart kids have to deal with. Check out this article.

http://www.news-medical.net/?id=46720

Have a great Easter

Carole

What a wonderful world indeed/ Let's have heart giveaway!

2009-03-24T20:59:00.000-07:00

Prizes should be arriving. I've emailed many of you. You and your children are truly heroes in my eyes, and to everyone I have talked to on yahoo messenger. Now, I do have some moms who are also willing to ship gently used clothes should any of you moms need any. Just let me know. If I haven't been in contact with you not to worry. I will also post this on cafe mom, as I know that is where most of you heard about this giveaway. Please keep in touch!

Carole

Free flight information

2009-03-14T20:41:00.000-07:00

I always get asked this question. If I know of any financial help for families. Here is a link, http://www.itsmyheart.org/resources/flight-assistance/ and it's to a great site. It is free flight information, and I hope it helps someone out. If you have information for support, financial aid, or other resources, and would like to follow or blog roll with me please comment, or email me at cachech@hotmail.com I look forward to hearing from you.

carole

Children and learning disabilities with chds.

2009-03-14T19:51:00.000-07:00

may be he/she has add or a learning disability? Many doctors, cardioulogists and heart surgeons don't like to talk about, and research is ongoing. Parents are often hit in the face with every day struggles unforseen. There is help.

http://www.congenitalheartdefects.com/learningdisabilities.html

Carole

#links

2009-01-23T09:52:00.000-08:00

#links

http://abbyandfriends.blogspot.com/

CHD awareness Quilt project

2009-01-23T09:45:00.000-08:00

Along with the Lets give Heart giveaway, I will also be giving 10% of my earnings, from my businesses to The Chd awareness quilt project, please see the url below.

http://thechdquilt.homestead.com/CHDQUILTHOME.html

These volunteers sew quilt blocks, and make the blocks into quilts to honor our littlest heroes. The quilts are shown all over. There are places where you can volunteer to sew or donate. Please consider both, and if you have a chd child, get a block. I did! Abby has a Barney block.

Carole

Let's have heart giveaway

2009-01-21T08:13:00.000-08:00

This is for you heart moms and kids. I am looking for donors, but I also need heart moms and kids too to give the goodies away to! I have a few, but I want this to be an annual thing. Let's give heart giveaway is about giving back to the chd community. I know what it is like to be a heart mom, I have Abby. Abby has HLHS. So I am asking heart moms to contact me by leaving a comment in my blog to be entered in my givewaway. MAKE sure you leave contact info, so I can give you your goodies. My blog is http://abbyandfriends.blogspot.com ONLY for congenital heart defect families.

Also I have moms that I am friends with online that want to donate gently used closed to heart moms in need. If you are, let me know by messaging me or leaving a comment in my blog!

Donations for the giveaway will get a button on my blog http://abbyandfriends.blogspot.com I am really excited about this. If you know of any businesses, or are a rep for something and would like to donate let me know. Also some of my ladies who are donating prizes want to know, what is it heart moms and kids would like for National CHD day. Feel free to leave a message at cafe mom, my email, ning, my space or any way. Thanks so much heart moms for all you do! You are truly heros!

Carole Harris

mom/nurse/heart mom to abby 10 yo, HLHS

writer, blogger, social media networker

Prizes will be given away during the week of Feb 7th through 14th, and I will be following up to make sure everything goes smoothly!

Have a broken heart?

2009-01-19T14:08:00.000-08:00

Hi everyone! This is my congenital heart defect blog! Do you know what a congenital heart defect is? Let me explain. It is the number 1 birth defect. 1 in 100 births result in congenital heart defects, and there is no known cause. It is a silent killer. What is a congenital heart defect?
Congenital heart defects are structural problems with the heart present at birth. They result when a mishap occurs during heart development soon after conception and often before the mother is aware that she is pregnant. Defects range in severity from simple problems, such as "holes" between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves. (information obtained from American heart association)

#1 Cause of death under the age of 1
There are 35 types of congenital heart defects

12 Canadians are born each day with a congenital heart defect

180,000 The estimated number of Canadian adults and children with CHD. Many babies go home undiagnosed, only to die silently in their cribs. The lucky ones get diagnosed as adults. The teen that collapses on the basket ball court from heart problems may have had an undiagnosed congenital heart defect. While autism is a new diagnosis in kids, it is still more visible then congenital heart defects. a Congenital heart defects have less funding for research than pediatric cancers and pediatric aids. Congenital heart defects have less celebrity attention than pediatric cancer which means less "LOUD" exposure. What is "LOUD" exposure. Let's face it, when you have Robin Williams pitching for your cause, you stand up and notice.

There is hope, there is something you can do. Congenital heart defect day is Feb 14th. You can tell one person what a congenital heart defect is. If you tell one person, they can tell one person and so on. You get the drill. In Illinois, it is a national day, in other places it is a week. My theory is every day is learn about congenital hearts day. We can never do too much for our small brave heros. They are the true heros as well as the moms, dads and grandparents who take care of them. Learn about congenital heart defects and spread the word. Abby has a congenital heart defect. Let's talk!