Nominate your favorite Health Activists for a WEGO Health Activist Award

WEGO Health is an online network of people like you and me – people who use the internet and social media to connect around health and share health information.  They call us Health Activists and have created a special awards program to recognize those Health Activists who are making a real difference in the online health community: http://info.wegohealth.com/awards_a11

I’ve signed up to be an Awards Ambassador which means that I’m doing what I can to share the WEGO Health Activist Awards with my audience and make sure that all Health Activists are recognized for the efforts they make every day.

Please take a moment to visit the nominations page and recognize your favorite health leaders: http://info.wegohealth.com/awards_a11

There is no limit to how many people you can nominate so make sure to recognize everyone that you follow, fan, or friend.  WEGO Health has 12 different categories so everyone should fit somewhere!  

 

What it means to be a part of the "Zipper club"

My nine year old daughter Olivia recently had her second open heart surgery. Though this journey has been hard for the whole family and we have certainly had some ups and downs. I wanted to share what her scar truly means to her through her words in hopes of helping others who have an older “tween” child if you will and how this led to what we were not prepared for after surgery.

Getting to the surgery day was okay and went better than we had expected. Olivia had little questions and remained pretty calm and quiet leading up to May 8, 2012 which was surgery day. We surrounded Olivia with many family and friends to keep her mind of things the day of surgery. She met with child life specialist Stephanie, whom without I don’t know how we would have got through this whole process. She was an absolute angel to our family and to Olivia. If you have Child Life specialists in your child’s hospital, I urge you to talk with them and your child before, during and after surgery.

Olivia was a true trooper and amazes me every day with how well she handles her heart condition and all the issues that have come along with that. What we were not prepared for was depression and anxiety after her surgery. It was very scary and completely changed our child almost immediately after surgery. She was completely different and sad even though she was getting news that she was doing great and how she was amazing that only 3 days after surgery she was getting to go home. She did not smile, laugh, or even get remotely excited when friends came to the hospital to see her. I began to get very worried that something wasn’t right.

As we came home from the hospital she would cry every day and tell us it wasn’t fair that she had to go through all of this and take all this medicine. She just did not understand it. It wasn’t until she was able to take a shower that I realized what was bothering her. She began to cry the moment she got in the shower and say that she was ugly and she did not look like any of her friends with her scar. My heart began to break for her. As a nine year old girl, you begin to notice these things and as mom I sat and thought what do I say? What can I say to make her see that she is beautiful just the way she is and that God made her that way. She was special! So that is what I began to tell her. She is special and perfect in God’s eyes and my eyes and no one can ever change that. The fact of the matter is we all have scars. This is how I began to explain to Olivia when she would cry looking at her scar and saying it’s not fair because none of her friends have a scar like that. I told her that they may not have a scar that puts them in the “zipper club” but they do have scars. I began to tell her that I have scars even. I have scars on both of my feet from where I had bunion surgery. I also began to tell her a childhood story that I have a scar on my forehead from when I was little and we were at my grandmother’s house in North Carolina playing outside with this big giant black dog. We were running from it and I was not paying attention and ran right into the biggest oak tree in the world. I am still not sure how I had forgotten that the tree was there. J What I am getting at is we all have scars and we all have a story that goes along with them and they are stories that we never forget no matter how young or how old we are or what brought us to them. Whatever the story, happy or sad, they become a part of our lives, our stories. I continued to explain to Olivia, that just like hers, her scar has a story. She has begun to realize that her scar is a reminder of how strong she is and how brave she has been to get to where she is today. And that she is AMAZING! She is not afraid to let it show. She has become proud of how strong she is and it’s just a daily reminder of that as well as to others. She should be proud of her scar and what it represents.

I spoke with her doctor about all of this and how bad it was becoming. He explained that sometimes when you are on the heart and lung bypass machine that it can cause bouts of depression. He also explained that it is common for you to feel sad or depressed after you leave the hospital. These emotions may be the result of not knowing what to expector not being able to do simple tasks without becoming very tired. Temporary feelings of sadness are normal, and should gradually go away within a few weeks, as your child goes back to normal routine and activities. 

So we are working through it and I wanted to share with others who are preparing their child for open heart surgery that this sometimes happens after surgery. We had no idea and we are learning as we go along. Please don’t be afraid to mention any of the signs of depression to your child’s doctor. Talking with a professional is always an option and something we are still considering with Olivia.

Night out with BFF's

Last weekend Olivia's friends from school all planned an outing before her heart surgery. We went and ate at Tokyo and afterwards had yogurt from The Mix and it was a blast! They all had so much fun catching up and seeing each other! Here are some photos from that day:

Faye, Isabella, Olivia, Maggie and Jameson

Finding Normalcy

I began thinking of what to write for my first blog post when I knew that I would be blogging for heartwaves  from a mommy of a child with CHD. And I thought that I would just start with who I am, how we got here and go from there.

My name is Melissa Harvey. I am 35 years old and a mom of three. Ella Rose who earned her angel wings in August of 2005, a son, Cooper, 5 and Olivia, 9, my CHD’er. She was born with Coarctation of the Aorta, Pulmonary Stenosis, enlarged heart and Mitral valve stenosis. I have been married for 11 years and live in Atlanta, GA, born and raised. Before you ask, yes I am a huge UGA fan and an even bigger Falcons fan. I will tell you about why I truly am a huge Falcons fan later. But as most know, growing up in the south, SEC football is huge and it’s hard not to be a fan of some team here in the south! I am also very involved and passionate with spreading CHD awareness in my community. I am the President of the Atlanta Chapter of its My Heart and also a Co-chair for a group called Heart Friends that aide in fundraising for the Beads of Courage program at Children’s Healthcare of Atlanta. I have also been actively working on pulse ox legislation here in Atlanta and hoping to save lives! Currently, a study bill is being introduced for the pulse ox screening. This is exciting news!

When we found out we were pregnant we were super excited! We couldn’t wait to have our sweet little bundle of joy in our arms! Nine months went by as expected with a few little bumps here and there in my pregnancy but pretty much as expected. We had a planned C-section and Olivia was born at around 5:36pm on December 19, 2002. Then there’s those four words that you hear and the rest of the sentence goes somewhere off into the air. There’s something wrong……and you suddenly drift back and hear the words…with your babies heart. It’s like a dream and suddenly you pop out and hope that it wasn’t real. Words as a new mom that you never expect to hear. You count all their fingers and toes and never ever dream that something would be wrong with your baby’s heart.  We did not even know what CHD was or an inkling of what it meant. CHD-Congenital Heart Defect means so many different things to those of us who have heard these words said to them. But the one thing we do have in common is fighting. That is what all of our heart warriors are, fighters. They fight for life every single day and you cannot see it. Most people look at our heart kids and babies and don’t think that there is anything wrong with them.

It is hard to relate to others about what are kids go through each and every day. It is numerous amounts of doctor’s visits, pokes, tests, MRI’s, ultrasounds, echo’s, echocardiograms etc. These too, were words that I had no clue what they meant. But they quickly became a part of my vocabulary that is now a part of everyday life. Olivia had open heart surgery in June of 2003 at 6 months of age. This is where I began to realize that I am not alone in this fight. This was the biggest realization for me. If you have been lucky like I have to have the support from family and friends and my friends with heart that I liked to call them. It helps to get through this fight called CHD, as well as other issues that arise. We recently found out that our daughter most likely has Noonan’s Syndrome on top of everything else. So, without them I have no idea where I would be.

It is hard to find the normalcy sometimes in all of this. From trying to stay away from germs, to talking to others who ask such a simple phrase of “How are you today? Even if you did answer truthfully they would not understand anyway. So, it’s just easier sometimes to say “Good!”  And go on about our day. I am now surrounded by those who know exactly what I mean when I say “Olivia has a follow up today….” And how important these “follow ups” are. They are my friends with heart. No need to explain the highs and the lows sometimes or what an echocardiogram is and why it is needed. You can just be and sometimes that is all that it should be and why I love and need my friends with heart.

 Finding normalcy in raising a child with congenital heart defects is just a part of the journey and this is why I surround myself with friends with heart. Some of my closet friends I have met through our journey with CHD. CHD is life long and so are your friends with heart!

My hope is to be able to share my journey with other heart friends here on heartwaves and it will help others who are beginning their journey with CHD and they make heart friends as well.

Preparing your Child for Open Heart Surgery

Preparing your child for open heart surgery is a scary thing. Nurses have to deal with this stuff every single day and seem to become “routine” to them. Routine?  I think not.  Not only once but having to go through it multiple times and having to relive it all over again is even harder and is far from being routine if you ask me.

The first time Olivia had open heart surgery she was six months old. We didn’t have time to think about what was happening or what could happen. It just happened. And we look back now and wonder how on earth we got through it. But we did get through it with the help of family and friends and Faith in the maker above that it was in His hands the whole time.

But we are preparing for Olivia’s second open heart surgery and she is nine years old this time. So preparing her and us is a little bit different than before when she couldn’t speak or ask questions and understand what would be happening. It has been tough so far. We have already had tears in all of us. So, I sit and wonder. How do I explain to my nine year old what is going to be happening in May? As I sat and thought about this when we found out she would be having more surgery, I realized that first and foremost we have to be honest with her. We have from the very beginning. She has always known that her heart was special and in no way have we ever told her that it would ever be perfect and “fixed”. So, as this journey has begun, we have been honest. Along the way we have had others tell us to wait until about 2 weeks before her surgery to tell her….or tell her just a few days before. But to me that did not seem fair. I know her and I know that she would totally freak out if we waited to tell her just before. So we told her along with her cardiologist. He also felt that it would be best to go ahead and be honest and let her know what was going on. I mean she had to know that something was going on already. We had been to numerous doctor’s appointments as well as seeing specialists upon specialists to figure out that it was her heart causing her issues.

My question now is…how in depth do you answer questions about open heart surgery? A nine year old can be pretty inquisitive. We haven’t had any questions yet but I know they are coming. As I began to research all of this, I came across some info that I thought that someone else who is going through this exact thing as well could benefit from and wanted to share it here.

I found that according to results from studies of developmental psychology show that children are often underestimated in their ability to deal with medical information. These studies show that children can cope with information about their physical state and can deal with stressful events. Additionally, young children of about 2-3 years can be prepared for surgery in a rudimentary way. Giving children, irrespective of their age, only vague or no information about their upcoming surgery seems unjustifiable. Children who are not educated about their surgery have an increased risk of being traumatized after the procedure. They could lose faith in their parents and health-care professionals.

So, bottom line honesty is the key and if you don’t know an answer to a question saying “I don’t know” is okay. You would rather get the answer than answer it incorrectly. Here are some things that I have already talked to Olivia about regarding her surgery.

 "Your heart isn't working as it should, but it can be fixed. The doctors and nurses are going to help your heart work better. I love you and I want this heart surgery done because it's the only way for you to feel better."

"During your operation the doctors will give you medicines so that you will be asleep and will not feel anything. After the surgery is over, you might feel sore, but your nurses will give you medicine to make your pain go away."

"Right after the operation you'll stay in a special room and get extra attention from the nurses and doctors. I'll be able to stay with you very often and I'll always be nearby. After you've gotten stronger, you'll move to a regular hospital room. When you're there, I will be able to stay with you almost all the time."

"While you're staying in the hospital, you'll meet other children who are also getting well after their heart surgery. They'll be getting ready to go home. You'll be able to go home, too, as soon as the doctors say you're ready."

This is a learning process for all of us even though she has had open heart surgery before. It doesn’t get any easier and those who have been there know that it is anything but routine no matter how many times you go through it.

Pulse Ox Study Bill 745-Testimony-CHD Awareness Week

This past week I had the honor of testifying in front of the Health and Human Services Committee at the Capital here in Atlanta. How fitting it was to be able to do this the week of CHD Awareness Week. It passed and now we head to the Senate. I am so thankful for State Rep. Andy Welch and State Rep. Matt Ramsey in helping to get this where it is. We are once step closer to saving babiesin GA! It was a great day as we also got to meet Gov. Nathan Deal who signed the Proclamation deeming Feb. 7-14 as CHD Awareness Week. Please check out the video here:

http://www.house.ga.gov/COMMITTEES/en-US/CommitteeArchives115.aspx 

Be sure to choose 2/8/2012.

                                       Here are a few photos from the hearing:

                          Here is a picture of all of us with Gov. Nathan Deal for the signing.

Also, this week we had the pleasure of meeting the Mayor of the city of Newnan who also signed a Proclamation deeming this week as CHD Awareness week as well.

CHD Awareness Day 3

CHD Awareness Month Fact day 3-Each year worldwide 100,000 babies (under one year old) will not live to celebrate their first birthday and each year in the United States approximately 4,000 babies (under one year old) will not live to celebrate their first birthday. Awareness brings Research. Research brings Hope. Hope brings Life.

 

 

CHD Awareness Day 2

Olivia was born with multiple heart defects which she will have to face and deal with the rest of her life. Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects. I want to ask that at least 10 of my friends share each day the fact that I post about CHD on your wall or Blog. Awareness brings Research. Research brings Hope. Hope brings life.

February is CHD Awareness Month!

Today marks the first day of CHD Awareness Month. For those who don't know..CHD stands for Congenital Heart Defects. In honor of my daughter Olivia and all of those affected with CHD I will post a fact each day this month about CHD in hopes to bring more awareness and to reach more families out there and ultimately spread CHD Awareness and offer Hope. With 40,000 babies being born each year to CHD there will be many more families learning what CHD means for the first time like I did. I believe that with Awareness brings Research. Research brings Hope. Hope brings life. This is the ultimate goal!

 

 

Pulse Ox in the news Again!!

Published Tuesday, January 17, 2012 in Local

Special

Olivia Harvey of Coweta enjoys time with a horse friend. Harvey was born with three congenital heart defects, and her mother, Melissa, is now working to promote proposed state legislation for a study on pulse ox screenings for all Georgia newborns.

Georgia lawmakers to take close look at pulse ox screenings for newborns

By Nichole Golden

The Newnan Times-Herald

This legislative session, Georgia lawmakers will consider a bill to launch a pilot study on pulse oximetry (pulse ox) testing for all newborns. The test is non-invasive and supporters say it can be a valuable tool in detecting heart defects, or serious infection.
Melissa Harvey of Newnan has been working for such legislation, which is being sponsored this session by State Representative Andy Welch and co-signed by Representative Matt Ramsey.
Representative Welch said the bill is "in the hopper" and will be assigned a number this week. "We're very excited about it," he said.

 

Harvey's own experiences with her daughter, Olivia, spurred her interest in becoming an advocate for others. Olivia was born with three congenital heart defects -- coarctation of the aorta, pulmonary stenosis and mitral stenosis -- all conditions that will have life-long impact.
Harvey and another metro-Atlanta mom, Jessica Hatcher of Newton, first contacted legislators last year about the pulse ox issue. The states of Maryland and New Jersey already require pulse ox screenings for newborns and several states have pilot studies in place.
According to Welch, hearings on the proposed study for Georgia will begin in February. The study, if approved by lawmakers, would be needed to determine how a pulse ox requirement would affect PeachCare, including cost per infant. "That will help guide us," said Welch about the proposed study.
In 2010, the U.S. Health and Human Services (HHS) Secretary's Committee on Heritable Disorders in Newborns and Children recommended screening of newborns for Critical Congenital Heart Disease (CCHD) using pulse ox. The screening, conducted by placing a meter on an infant's toe, is used to measure the degree of oxygen saturation in the red blood cells.
"It should be close to 100 percent," said Dr. Matt Oster, pediatric cardiologist at Children's Health Care of Atlanta. According to Oster, there are two reasons for a low reading. The first is a lung infection or problem, and the second is a heart defect preventing blood from reaching the lungs for oxygenation.
Many children born with life-threatening heart defects exhibit no symptoms and appear healthy at first. According to the Children's Heart Foundation, approximately 4,000 babies do not live to see their first birthdays due to congenital heart defects annually. Nearly twice the number of children die from congenital heart defects in the United States each year as from all forms of childhood cancers combined.
In Georgia, it is required by law for newborns to undergo a blood test screening for a number of genetic and metabolic disorders. Hearing tests are also conducted routinely for most babies born in Georgia. For Olivia Harvey, early detection was key in her longterm health, and that's why her mother is supporting the pulse oximetry campaign.
Harvey says more information on the pulse ox campaign is available at http://pulseoxadvocacy.com including how to talk to your legislator about the issue. She says another good online resource for parents of children with heart defects, or anyone interested in learning more, is http://www.itsmyheart.org/ . "It has ways you can get involved," she said.

"Cooperman" turns 5!

So, I am little late on updating here. But a few weekends ago Cooper turned the big 5! He had a blast at Monkey Joes with his cousins and family! Here are a few pics from then:

Right now you LOVE star wars and playing light sabers! You also love to play thomas the train as well. You are such a trickster and you love to hide and think that it is the funniest thing in the world to "neek" up on all of us! You have the best laugh and your smile is the biggest smile in the world. You love your family and you hate to see your big sister go through so many medical things. You talk about Jesus all the time and yell outside to Him that you love Him. This makes me smile that you are not afraid to tell the world that you love Jesus. I cannot wait to see what God has in store for you this year.

Born January 9, 2007

Fav Food: Chick-fil-a

Weight: 35lbs

Loves to play Thomas the Train & Star Wars

Likes to watch Austin & Alli & AFV

Fav color: Blue

Wants to be a Fire Fighter when he grows up.

My Hero

What is a Hero? A hero can be many different things depending on who you ask. To some their parents may be their heros, to others it may be superman or a football star. Often times you see children pretend to be hero’s on the playground. But to me, my hero is my eight year old daughter, Olivia. And she doesn’t pretend to be a hero, she is one. She was born on December 19, 2002. This would be the day that we would learn that she was born with several rare Congenital Heart Defects. The day she was born was the day that she began to fight for her life. She has gone through more in her eight years than most do in a lifetime. She was born with Coarctation of the aorta, pulmonary stenosis, mitral valve stenosis, and an enlarged heart. She endured open heart! surgery at 6 months of age to repair two of her defects where she remained in the hospital for 3 weeks and will require more in the future. Every day she takes numerous amounts of meds and has some limitations on what she can and cannot do. But she always smiles and tries her best not to cry and be brave when she gets a poke or test. She shows so much strength and bravery everyday of her life. She is the toughest little girl I know. In addition to her heart defects she also is going through testing for an enlarged liver and spleen and a possible bleeding disorder. You would never know by meeting her that she goes through all of this every day. She shows her courage, hope and strength through her laughter, tears and all of her energy despite her illness, for that she is my biggest Hero, my warrior. Each child is born and most believe with a predetermined path created by God. Not one journey is the same and I believe when you add the element of a congenital heart defect to a c! hild – you have a Heart Hero. I am reminded that when I get do! wn and f eel like giving up of what she goes through and I know that I can get through it. No matter what comes her way she endures it and moves on to the next and never complains, always smiling, a true hero. My heart hero.