Feb. 3- CHD Awareness Month- Wills Story

Feb. 3-CHD Awareness Month- Will's Story

I met this sweet family about a year ago. They were the only family to show up at our family It's My Heart Picnic in the Park here in Atlanta. We had a great time sharing stories about our journey with CHD. Will is such a fighter and his big sister pretty special too!

This is Will's story-

We went for our 20 week ultrasound excited to find out if we were having a boy or a girl. My parents had come along to share in the excitement. As I laid on the table and the nurse let us know that we were going to have a boy, she pointed out that she saw something on the ultrasound and she wanted the doctor to look at it. The doctor came in a few minutes later and let us know that something didn’t look quite right with the ultrasound and that he wanted us to hang around and talk with the cardiac specialist that was in the office that day. It took about an hour to get in with the cardiac specialist, but he basically said that my son’s heart had something wrong with it and that we would have to monitor it the entire pregnancy. All he could identify was a hole is his heart and a possible valve problem. My heart sunk knowing that my perfect baby boy had something wrong with him and I wasn’t even sure exactly what was wrong. I have never cried so much in my life and my whole family was heart-broken finding out the news.

Over the next 4 months I had numerous cardiac ultrasound appointments to monitor my son’s growth and the development of his heart. Each appointment was exhausting and nerve wracking worrying about what else the doctor’s may find wrong with my son’s heart. His diagnosis went from just a hole in his heart with a valve problem to include a problem with his pulmonary vein and a possible interrupted aortic arch.

At one point in the process of monitoring the cardiac prognosis of my son’s heart the doctors informed us that about 50% of the time heart babies can have a syndrome known as Digeorge syndrome. I was crushed thinking that I would have to deal with all this at one time and still try to raise a baby. I am the type of person that has to know so we had an amniocentosis done so we would know exactly what we were dealing with. Thankfully the test showed that his genetic makeup did not show the chromosomal deformity.

My son was born August 11, 2011 and he was a healthy 7lbs 1 oz and 20 inches long. He looked completely healthy and no one would have known otherwise if it wasn’t for the massive amount of doctors and nurses in the delivery room awaiting Will’s arrival so they could scoop him up and take him to the ICU. I think we got about 10 minutes with him as best I remember since it was such a whirlwind. We barely had time to get just a few pictures before he was taken away.

The cardiac doctors had informed us that until he was born they would not know the full extent of his defect. It took over 3 hours before the doctors were able to inform us that he did in fact have the interrupted aortic arch in addition to a hole in his heart, a small valve leading from the heart to the aorta, a problem with his pulmonary vein, and stenosis (narrowing) of his aortic arch.

He was transferred to Sibley Heart Center when he was only a day old and his big sister got to meet him for the first time that day. I think that was one of the hardest parts of the whole experience. I didn’t get to let my daughter have that special moment with her baby brother after he was born, she had to look at him through his travel capsule and she couldn’t even touch him. It broke my heart again.

We waited several days once he got to Sibley to find out when his surgery would be performed. He had the surgery when he was 6 days old. It lasted 6 hours and thankfully it was completely successful. Dr. Kogon performed the surgery and he called it a complete repair of his heart. Will stayed in the cardiac ICU for 7 more days and then he was transferred to the step down unit where I was able to spend the night with him, which was the greatest gift I could have had at the time. I had to learn how to use the feeding tube and care for his wound correctly. He did so great with his eating and recovery that we were able to go home after only two days here.

We have had several follow up appointments with the local cardiologist and thankfully each one has gotten progressively better. This last visit in November, the doctor told us we could go another 9 months before he needed to see us again and that his heart had grown enough that his stenosis has improved a good deal.

We have had to involve a physical therapist after my son wasn’t able to sit at 6 months of age and was falling behind on his gross motor skills. It has been 10 months that we have been working with her and Will has mastered sitting, crawling, cruising, and now walking. I never knew how far behind he was until the therapist intervened. The therapist feels like by the time Will turns 3 years old he will be at the same point as other children his age.

Feb. 2- CHD Awareness- Owen's Story

Owen's journey began when he was just 47 hours old, when he underwent surgery to correct a Congential Heart Defect called Tranposition of the Great Arteries. His condition was life-threatening and required immediate open-heart-surgery to reverse the pulmonary and aorta arteries. He spent 8 days at CHOA-Egleston, where he continued to improve day after day. He pulled through like a champ and the surgeons considered his surgery a success. He will be required to see a cardiologist annually, but his long-term prognosis is good. Owen is now a 3 year old that loves to run, play, and eat lots and lots of chocolate. Owen brings his family much joy and reminds them of their blessings all of the time.

Kickin' off CHD Awareness Month-My Hero-Olivia's story

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 ten 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 ten 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 has had her second open heart surgery this past May to replace her pulmonary valve and remove a muscle bundle in the left ventricle-something the doctors have never seen before. 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 child– you have a Heart Hero. I am reminded that when I get down and feel 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.

Wear Red Day

Today is National wear red day! Today we wear red for all those affected with congenital heart defects and heart disease. Will you wear red in honor of those affected? I wear red for my daughter Olivia who was born with multiple congenital heart defects.

Today also marks the start of CHD Awareness month. CHD is the number 1 birth defect and affects 1 in 100 births. Each day for the month of Feb. I will be sharing a CHD story in hopes of helping to bring awareness. We have lots going on this month so Stay tuned!

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