WINNER!

Sorry it has taken me so long to post this. We were having computer problems this weekend. But here I am and I have a winner to announce. :) First I would like to Thank everyone again for participating in the years CHD Awareness Week and please join us again next year to continue to spread awareness and enter into another great contest.
Thanks to random.org i was able to assign a number to each of you and have random.org choose the winner...who is....
Nunmber 37 HOORAY!!!!!!

Oh wait I guess you need to know who was closest to 37 huh. :) hee hee

CONGRATULATIONS to

Chelliney Brooklyn Faith Watkins :D

Please let me know which prize you would like out of the four. Also send me your address so that I can get that sent to you. :)

Dentist Visit

So with all these teeth that Avery now has we decided it was time to start the routine of getting her to the dentist. After a little research I found a dentist here in Perry that I thought we'd try and see what we thought. So Feb 12, the day of the appointment came and Avery and I headed down. She loved all the toys in the waiting room, she even didn't mind the nurse who came and got us.

But she wasn't quite sure when we tried to get her to lay down in the chair. even with the headphones and a movie on she wasn't happy. She stayed very stiff and ridged the whole time. She showed a little bit of interest when the nurse showed her the water but other than that she wanted nothing to do with all this.

 

After she got her teeth cleaned and the nurse told her she could sit up she was happy and would finally talk to the nurse. She even started to take interest in the headphones and the movie on the ceiling. But then she decided she was done and started to say goodbye to everyone. So she wasn't to pleased when the doctor still had to see her. Especially when she had to lay back down in the chair. The dentist said she has 18 teeth and they all look really good. He gave us some new toothpaste to use and asked us to start flossing her teeth. 

 She was happy when she was done and said goodbye to everyone on our way out. We stopped and the nurse pulled out a toy basket and let her pick out a toy and a sticker. She grabbed a ball and couldn't believe she got a sticker too. She was very happy to leave. When we got home she was so excited to show her Nona and Grumpy and Uncle Bob her new toys. She was bouncing the ball and threw it out into the garage. It bounced down the driveway and the proceeded down the street. Avery was VERY upset and kept yelling for her ball. It was a rainy day so as I ran after it down the street I thought there was no way I was going to get it. Even if it landed in the gutter the rain water would sweep it into the drain. But I actually found it at the end of the street. it landed in some mud just a few inches away from the gutter. I got it back to the house and after a quick wash and sanitize gave it back to Avery. She was So excited to have it back. She played with that ball for about 3 to 4 days after. :p

Questions and Answers

I would like to thank everyone who has participated in CHD Awareness Week this year. It has been a successful year and has also given me some great ideas on ways to use Facebook and Twitter more to help spread awareness. Also don't forget you have until midnight tonight
 to help spread CHD awareness and enter to win. Ok now to start answering your questions:

How is Abby doing?
      Abby is doing great. For those who don't know a lot about our niece Abby. She was born with a CHD called Tetrology of Fallot. She has had roughly ten surgeries. Beginning when she was 6 months old with an open heart surgery. Of the ten surgeries, six of them have been on the heart, including procedures from installing a pacemaker and a defibrillator, to an eventual heart transplant. The other four surgeries were due to other birth defects, including a severe case of scoliosis that was corrected a little over a year after her heart transplant. She still takes about a handful of medicines a day, goes in for routine check ups to make sure her new heart is good and that there is no rejection. She is loving life and is taking advantage of all it has to offer her.

Is she considered cured?
      This is a tricky one to answer. The way that her and her mom describe it is that she no longer has a broken heart. But she still has to ask her cardiologist permission to do certain things. And there is always the knowledge that even though her heart is awesome right now, it does have a life span of about 15 years. So she will have to have another heart transplant. Also there are other things involved with this as well. So unfortunately no she is not considered cured.

Is there a cure for CHD?
     There is not. The hearts can be repaired and that repair can give the child a somewhat normal life. But for example in Abby's case. Not only is she 1 in 100 baby having CHD, but she is also 1 in 1000. Because her heart repair had the complications it did due to scar tissue which is about 1 of 1000 CHD repairs don't actually work very well. This is what ultimately led to her heart transplant. But there are kids out there who have CHD's that aren't as severe that can be repaired and go on to live fairly normally. This and many other reasons is why we love Shaun White so much. He was born with Tetrology of Fallot same as Abby. But his repair worked very well and well we all know what he has gone on to do. :) But there are still certain things that he cant do because of his heart. I watched an interview he did where he talked about not being able to go scuba diving. I also posted an interview he did where he said he still has some metal tubing and things in his heart that prevent him from being able to get an MRI. They have to inject ink into him and watch the flow of the ink to determine if there is any damage that way. So it can be repaired but there is no cure.

Why is having a child with CHD so special?

     I cannot answer this as a mother of a heart child. Since I am not one. But as a mother and as the aunt of a heart child. I can say that from what I have observed there seems to be a deeper connection not only between the parents of this child but I think anyone that comes in contact with them. They are a very special spirit that is sent to a very special and select person and family. From what I have observed there something of reverence that comes with being a heart mom or dad. I have always believed that there are very special and wonderful people in the world who are given the opportunity to be given a child who is special and strong enough to face these burdens in this life. These children are given, I believe, to these sets of parents and families because Heavenly Father knows that these parents are the type who can help these heart children succeed. Or because he wants these types of parents to feel the special, deeper and different type of love that these heart children bring. Whether they have been asked to come back home to live with Heavenly Father again to soon after they arrived on earth. Or whether they stay, live, and show the world that a heart defect isn't going to stop them, like our little Abby.

To end this post I just want to thank everyone again for your participation. To all the heart families out there please know you are always in our thoughts and prayers and that we continually send our love your way.

Abby's Perfect Broken Heart--Second Open Heart Surgery

Abby's Perfect Broken Heart--Heart Failure

Remembering Heart Angels

Questions to Consider

Congenital Heart Defect Awareness 2014

CHD Awareness Week

My Sister in law post's the best stuff on Facebook. Today she posted a blog that another Heart Mom has about CHD. This article made me cry. These woman are so strong and amazing. Their story's are so inspiring to me. It helps to fuel this fire I have inside to continue to help spread CHD Awareness. Even when I don't feel like my blog is reaching many people, or I feel like I just give the same information year after year, and when I feel like what I am doing isn't really helping to spread CHD. These stories give me the hope and strength to continue year after year to help spread their story's. To have the hope that even if I can reach one person, that it will be enough. Please join us by helping to spread awareness. Most importantly all these stories written about Heart Mom's, Heart Hero's and Heart Angels.
Here is the link to that article my sister in law posted.
http://www.chicagonow.com/high-gloss-and-sauce/2014/02/congenital-heart-defect-week-a-stadium-full-of-babies-chd/

Prize Options

Every year that I do CHD Awareness Week, I like to have at least one prize at the end to help encourage people to either ask questions or help spread awareness. This year I am giving you four (yes it was three but I changed it) choices. If I announce you as the winner then you can choose one to be your prize.

To win one of these beautiful pieces of jewelry just ask a CHD question in the comments section. Or help spread CHD Awareness. If you have a blog and are helping to spread awareness that way then please leave a link to your blog in the comments. If you are helping to spread CHD awareness on Facebook or Twitter please just link my name in a comment or the post so I know, then you will be entered to win one of these.

More About Paul Cardall

Paul Cardall is an Internationally famous pianist. As you can hear from the beautiful music on the video below, he is amazing. He was also born with a CHD and has had to undergo multiple surgeries, including at least one heart transplant. I think he had two though. Paul has inspired millions of people with his story and his music. He is another Heart Hero that is looked up to in our family. You can read more about Paul Cardall, his music and more at his website http://www.paulcardall.com/

Life and Death by Paul Cardall (+playlist)

CHD

Congenital Heart defects is the #1 birth defect. It's present at birth but begins in the early stages of pregnancy when the baby's heart is forming. CHD has more occurrences than spina bifida, down syndrome or hearing loss. According to little hearts.org "Approximately 40,000 babies are born each year in the united states with a CHD. That equates to 1 out of 125 babies are born with heart defects." What causes congenital heart defects? "In most cases, scientists do not know what makes a baby's heart develop abnormally. Genetic and environmental factors appear to play roles.
Scientists are making progress in understanding the genetics of heart defects. Since the 1990s, they have identified about 10 gene mutations (changes) that can cause isolated (not accompanied by other birth defects) heart defects. For example, a March of Dimes grantee identified a gene that can cause a heart defect called an atrial septal defect (a hole between the upper chambers of the heart), and one that may contribute to hypoplastic left heart syndrome (underdevelopment of the heart’s main pumping chamber).
Other viral infections, such as the flu, also may contribute, as may exposure to certain industrial chemicals (solvents). Some studies suggest that drinking alcohol or using cocaine in pregnancy may increase the risk of heart defects.
Certain medications increase the risk. These include...
The acne medication isotretinoin (Accutane and other brand names)
Thalidomide (approved only for a rare, severe skin disorder, but sometimes used for other conditions) Certain anti-seizure medications.
Some studies suggest that first-trimester use of trimethoprim-sulfonamide (a combination of antibiotics sometimes used to treat urinary-tract infections) may increase the risk of heart defects. To find out more please visit the March of Dimes website." All this information I was able to get from here. CHD is a birth defect that not a lot of people know about until somehow, someway it becomes personal to them. Maybe they have a friend who has CHD, a co-worker, or a family member. Please help spread awareness.

How Do Kids with Heart Defects (CHD) Deal With Feeling Different?

Answers to Your Questions

As promised I will answer the questions I receive at the end of the week. So I will start with...

When is Congenital Heart Defect Awareness Week?
TODAY!!!! :D But to be more specific every February 7 through the 14th.

If I have a child with a CHD what can I expect? 
This question I will actually be posting a video to help answer. Also I was going to talk to my sister in law and ask if I could interview her. I could ask her this question and help give you a better answer to it. Being the mother of a CHD child she could answer this better than I could. I do follow the story of a mother who lost her baby due to CHD and is trying to help this to not happen again. She recently posted an article on Facebook that could also help answer this question. You can find that article Here.

Well that's all the questions I have to answer this week. But please keep reading and asking those questions and help us spread CHD awareness.

Movie for post below.

Congenital Heart Defect Awareness

Last year for CHD Awareness Abby and her mom made a video to post online about CHD, how it has helped her become the person she is today, etc. This is a great video from our own Heart Hero. If you have any questions please feel free to ask. You can leave a comment here on my blog or you can even go to Abby's facebook page or blog and ask her questions.

To Important NOT to Share!

My sister in law has been posting on facebook about CHD. Today She Shared This:

Nicole Wardell

"Here in the United States, our heart children are fortunate enough to receive the care they need for their special broken hearts. In developing countries and even smaller developed countries, this kind of care is completely unattainable for many parents. They must simply watch as their heart babies deteriorate before their eyes, knowing that saving their life is possible...just not for them. The International Children's Heart Foundation has set out to offer lifesaving treatment to as many of these children as possible. Today...you can help them in their mission! Go to the link below and simply fill out the survey. An anonymous donor has offered to donate $5 for each survey filled out and will pledge up to $25,000 to the International Children's Heart Foundation. That is enough money to save the lives of TEN children with open heart surgery! PLEASE take a few minutes and help save the lives of babies like my Abby, who otherwise have no chance at a future. This is not a scam and your time will help fragile hearts see tomorrow's sunrise!"
http://womensvoicesforchange.org/80609.htm

Please help by filling out this survey. Thank You!

Facebook Events page revised

Hello everyone, it was brought to my attention that my CHD Awareness Event on Facebook couldn't be seen. I have now changed it to public so hopefully everyone can see it. I have 8 pictures of potential prizes. Please "Like" the 3 you think should be the grand prize choice. Thank You!

CHD and Pulse Ox

With the new stats about CHD and how many babies can have CHD how can we know how to detect CHD? With the wonders of technology we now have the ability to take 4D ultra sounds and have a picture of our cure little one whilst still in the womb. this is a wonderful resource not only to see the cute little fingers, toes and nose. But to check for any birth defects, complications and such. When I  was pregnant with our little girl my doc knew about Abby and a little of her story. So she knew the concern I had about CHD. When we did an ultra sounds she had me do a special ultra sound but focused just on the baby's heart. Through this technology we looked at the valves, all four chambers and anything else we could look at. Everything looked just fine. But just to be safe we wanted a pulse ox test after she was born. This is a simple test but sometimes hospitals wont do the test unless you ask for it. The pulse ox is a light that they will put on either the foot or the hand.

 












There are hospitals now that have the pulse ox as a mandatory test. A simple test that doesn't take very long, doesn't hurt that baby but can help detect a CHD and could potentially save a life.
What if your child has a CHD? Primary Children's Medical center did a great article on this. You can find it HERE. For now thats all I want to post. Because that is a topic I would like to expound on another day.

1 in 100

                Not a lot of people know that out of all the babies born around the world. 1 in 100 of them are born with a heart defect. Now when someone says a statistic like this it's a nice statistic to know. but it's hard to understand what exactly a statistic means without a little more background. So 1 in 100 babies, but how many babies are born in a day? According to a census taken in 2010. There are over 361,000 births each day. With that number, that means there are approximately 251 babies born throughout the world each and every minute.Out of those 251 babies 2 of them will have a heart defect. So 2 babies every minute, 120 babies every hour is born with a heart defect.
               My sassy niece Abby is 1 of 100 and the reason why I help spread awareness. She has had a fight that she has fought that is indescribable. But she has take on the challenge time and time again and has touched the lives of a lot of people in the process. You can read about Abby on her mothers blog Abby's Perfect Broken Heart. You can also follow her journey on facebook.

Need Help Choosing a Prize.

             Usually I have the prize already picked out before I start CHD Awareness Week. However many different things prevented me from doing that. So I am currently trying to choose a prize. I have narrowed it down to 8 but I am still struggling. So since this isn't going to be my prize but potentially your prize. I have posted all 8 pictures on my Facebook events page. The 3 pictures with the most likes will be the 3 choices for this years grand prize. Please help me decided.
              The past prizes have been purchased at either amazon or Morgan Jewelers. This years prize will come from Fred Meyer Jewelers. Just an FYI.

Sorry here's the video I talked about in the previous post.

Why Do I Help Spread CHD Awareness?

This is a video my sister in law Nikki did about her sweet Abby's first open heart surgery. 

5th Annual CHD Awareness Week

 

                     Hello everyone and welcome to the 5th annual CHD Awareness Week. I was very excited when I realized that this will be the 5th year of hosting this.

Today (like the first day of school :p) I would just like to explain what you can look forward to with this CHD week as well as a little of what I will be talking about. Also I will be including a post or two on organ donation as well. This year I have decided to do one prize instead of two. But the winner will get to choose from 3 different items. I will be keeping the prizes based around CHD. For example heart shaped jewelry, etc.   

                    There are 3 different ways you can submit your name into the drawing. (So a chance to have your name in the drawing 3 times instead of 1) One way is posting a question in the comments here on the blog, I will be answering all questions at the end of each week. The 2nd & 3rd way is helping to spread CHD awareness.  Examples are: Posting something on your blog about CHD and then put the link to your post in the comments so that I can go read about it. Helping to spread awareness on Facebook. You can do this by posting about CHD awareness, sharing my blog or event, making your profile picture something about CHD, etc. Please remember to tag me on Facebook or post a link in the comments section on my blog, so I know to add your name to the drawing. I would hate to only have your name in 2 times when you deserve 3. These are just some examples and will only get your name in the drawing once.
 

                 Tomorrow I will start all the facts and news about CHD what it is and more. Also about organ donation. Also an update on our family's CHD hero Abby Wardell. This event will last until Midnight on Feb 14. I will be announcing the winner of the contest on Feb 15th before 5PM U.S. MST (Mountain Standard Time). I am excited to share what I know with you and more and look forward to your stories, comments and questions.