Letting Go A Little
My kids are inspiring and I am so lucky to be their Mommy.I have been very vulnerable on this blog about how I feel about being a heart mom. When you your child is sick- that’s it, that’s all that there is. My world stood still the day that Paul was diagnosed. Many of you know that I had a terrible feeling about Paul long before anyone told me his heart was not formed. I pushed and pushed for another ultrasound and there it was- plain as day- half a heart that had been missed at 20 weeks. I started to worry so much that day and have worried about Paul every single day since then. Today, I think, its time to let go a little. He’s thriving with half a heart. I don’t know how long he has on this earth but I don’t know how long any of us have.
I have this little boy who climbs and talks and fusses… He’s a lot like me- little and demanding and creative and curious and a lot like Dan- sweet and pensive, slow and steady.
He ROCKED his clinic appointment today. ROCKED it. They got all of the echo pictures they needed and he sat like a champ through 4 blood pressures, EKG, weight, height and sats. His echo looked unchanged- mild depressed function (from where the conduit was placed) mild valve regurgitation and a small left pulmonary artery with great blood flow that is growing with him. He’s ready for the Fontan. He’s ready to ROCK the Fontan this summer.
I have this little lady now too who is chilled out, happy and a BIG eater. My heart stopped when they told me they suspected bicuspid aortic valve. I knew it was possible but never thought in a million years her heart would be anything but perfect. She is a miracle and as many of you know has already survived so much.
Most of us are born with an aortic valve with 3 leaflets, blood flows to our heart from these leaflets from three places. If you can imagine the symbol of a Mercedes Benz with blood flowing from each side evenly. Georgia has GREAT blood flow it’s just coming from two valves instead of three. She has three valves but the left and center are fused at the top, her valve looks more like a circle with a line through it. BAV is the most common congenital heart disease and is often not diagnosed until a person is much older. This type of valve can cause aortic stenosis, regurgitation, and aortic dilation. All of these things are unlikely to occur for her in childhood. They are all things that can happen to any of us even with healthy hearts. All of these things we would SEE on echo before they become an issue, we would HEAR a murmur after that and only THEN would we even think about things being less than perfect. If she does eventually have BAV complications, we just follow them and don’t intervene for a long time, even then the interventions have good outcomes. Many people with BAV never even know they have it and its an incidental finding on an autopsy or routine echo. So, in a year we will look again at her heart, and follow ever year-two years thereafter. Should the Pediatrician hear a murmur in the first year of her life, we would go back for evaluation. Getting through the first year of life without complications from BAV is a GREAT sign and we pray that will be true for Gigi- as of now- it looks like it will be. To give you another idea, Arnold Schwarzenegger has BAV and so does a Houston Astros baseball player.
Nothing to worry about until there is something to worry about. I say that for both kids- Paul on one end of the CHD spectrum and Georgia on the other. Today, I think, its time to let go a little to look at these kids as kids without normal hearts. To look at Paul as a little boy who happens to have HLHS not as a sick child. To look at Gigi as a normal baby with an abnormal valve not as a baby without a perfect heart. This is not the life I chose but it is what was given to me and I intend to grow where we are planted and I can only do that by being a mother first and a heart mom second. I have asked millions of questions, cried billions of tears, and gained hundreds of acquaintances and a handful of life long friends as a result of this journey. The road that lies ahead of us this year includes….
The Fontan surgery and recovery
Laughter and playdates
Feeding tube weaning
First steps and first smiles
Learning to speak more, jump, and climb
Echos, clinic visits
Surviving and thriving
All the while the wonderful team at Vanderbilt will be there to support us. Paul LOVES Dr. Parra- he is so good and competent and smart and even keeled. Nurse Karen got initiated into the family once againtoday when Gigi spit up on her (Paul has vomited on this woman many times). We even said a bittersweet goodbye to our fellow, Jessica Moledeaux who will be leaving to attend at Ochsner hospital in New Orleans. Paul hugged her. We would NOT be the same without her.
All the while YOU will be supporting us with prayers and facebook likes and good Reiki energy. You will call and text and message- sometimes without response because of our crazy lives- to let us know you are in our corner and that is a HUGE gift…God willing we will all watch these children grow up and THRIVE.
My favorite time of day is usually around 6 in the morning. Night has just turned and the world is waking up. The space between night and day where it is a little bit colder, a little bit quieter,a little bit confusing at times and gradually you can watch life take shape. The space between night and day where coffee is a must and you can not help but believe in something so much bigger than you. If your lucky, you can almost feel that space and be thankful that in spite of whatever is happening, the space will be there tomorrow- as sure as anything can be.
The space between is where we live and love and have faith.The space between… I “carry their hearts in my heart.”