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.