The thoughts in my mind must look like the ball in a pinball machine at the moment. They are ALL OVER THE MAP. Or is there even a map? That is seriously a scary thought!
A friend told me I should not feel the need to defend decisions the Prez and I have made and continue to make regarding our children’s healthcare, but I suppose I do. I realize our children all appear healthy and they are thank God. They are. Except they aren’t.
When you watch your baby sedated just an hour post-op from open-heart surgery with a breathing tube in her mouth that is doing all of the work for her lungs, sensors on her forehead to alert her medical team for early signs of a stroke, a large cut down her chest that required sawing open her sternum, so many wires and machines behind her that you find it hard to believe the wonderful PICU nurses can even keep up … but they do, and you just breathe in and out as you watch her chest move up and down rhythmically with the machine. These are only part of the things that were attached to, going into, coming out of, and working together to keep our baby girl’s body right where it needed to be as she began the recovery phase after receiving life-giving open-heart surgery on April 23, 2013.
When you have done this, it never really leaves your mind. For long. It is just always there. Sometimes in the forefront. Other times in the recesses. But it never goes away. And when you’ve done it twice … what can I say. It changes you.
On my FB page, I have shared my heart about how concerned I am for our children, especially our three younger ones, who are ages 9, 9 and 4 currently. They are healthy, but they are also children who will always have survivor beside their names, because they ARE against medical odds and unimaginable odds. Our two 9-year-olds born with not only complex forms of heart disease, but also born with cleft lip and palate and orphaned as newborn infants. The odds were not in their favor.
Then our baby girl. Her story and the many more details we know is not one I will share here other than to say she was born with a very unique heart that is so complexly malformed the team of pediatric cardiologist at Vanderbilt can’t even agree on the exact set of defects it contains, so she is officially labeled with “indeterminate single ventricle disease.”
Indeterminate. not exactly known. established. or defined.
Because I know someone will wonder and I don’t mind sharing, Li’l Miss was born with transposition of the great vessels, which means the two main heart vessels are switched. The one taking blood to her lungs actually should be going to her heart and vice versa, so the oxygenated blood is pumped back to the heart for oxygenation and the blood needing oxygenation is sent out to the body, which makes for a very cyanotic child. She lived this way for 35 LONG months, against all odds and all the while also living with an open palate and a cleft in her lip as well, which makes feeding extremely difficult for infants before solids can be safely eaten.
Li’l Bit was born with pulmonary atresia, dextrocardia (flipped), and an upside-down heart as well as a smaller right ventricle, or maybe it is her left because her heart is so rotated the doctors couldn’t determine which side was functioning as the left or the right side.
To put it bluntly, their hearts are complexly formed and with many defects. While the surgery they received—the fontan— did work to help their hearts function much better, the defects are still there and their surgeries were palliative in nature meaning they aren’t corrective and only served to improve their quality of life.
A sobering reality.
When I worry about the influenza virus or a rampant stomach virus, I am serious when I say our girls DO NOT NEED to be unnecessarily exposed. When Li’l Miss gets a stomach virus, she ALWAYS becomes dehydrated, which for her or Li’l Bit is EXTREMELY dangerous. EXTREMELY dangerous. They just don’t have the health that most of us have to combat this in a way that most of us do. At the moment we see signs of dehydration, we go into overdrive and we take it very seriously. In addition, both of our girls would be admitted to the hospital if they were diagnosed with the influenza virus. It is EXTREMELY dangerous to their little hearts.
Last night, the Prez and I had to make the extremely difficult decision to let some family members know we’d not be able to attend the pre-planned extended family Christmas gathering because a family member’s child would be present with lingering symptoms of a stomach virus. At the heart of it, our precious kiddos are the losers because they aren’t going to see cousins, aunts, uncles and spend time with all of them together with grandparents. While it may seem like its not a big deal that a child still has diarrhea, we are faced with trying to keep our little girl from germs while she fights for her palate to heal from surgery on Dec. 2. We also know a stomach virus running rampant through our family and especially our littles is just not good for their overall health.
An oft-quoted saying among us Mommas of kids with complex heart disease is this: She (or he) is the healthiest sick kid you’ll ever meet.
So very true. So very true.
I want to add one final word here. For those who are healthy and whose children are all healthy, please do remember that not all of us are, not all of us have healthy children, even if they may appear to be from the outside looking in, and that the choices you make to be around others and expose others to seemingly “just let it run its course” viruses could actually be serious business for those with weakened immune systems, hearts with palliative surgical repairs, and many others plagued with illnesses of many kinds.
If you knew someone’s life would depend on your taking responsibility for the choices you make in exposing others knowingly to viruses, you might make different choices. I hope. One final note: our littles will never be cured from their congenital heart disease. It is part of who they are, and it is always a factor in our determining what is safest and best for their well-being. It isn’t something the Prez and I talk about openly a lot, but it is always present and always at the forefront of any decision we make regarding what is best and what is safest for them.
