Brace yo'selves! Next week is Congenital Heart Defect Awareness week and I'm about to school all y'all. Just kidding...I hardly know any of it myself! I am going to be talking about what I DO know, though.
This kid isn't even here yet and I have already been thrust into yet another club that I am grateful for, but never wished to be a part of.
I am becoming a pro on things like CHD, TGA with PS, TOF, HLHS, VSD which even when broken down, are not terms that most people are familiar with.
I know how fortunate I am to have time to brush up on surgical procedures and read experiences. I know now, unlike so many other parents who were bombarded with the definitions and charts after they held their seemingly perfect babies and then got thrown into this club without warning.
I am arming myself with studies, statistics, life experiences, and basic knowledge of congenital heart defects. At first I thought that the more I knew, the better I could advocate for my son's care. I have full faith in Seattle Children's Hospital and their abilities to care for my son, so it seems as though I am arming myself for a battle with myself.
The uncertainty is scary, the realization of even a best case scenario leaves me with uncomfortable anxiety.
Our last fetal echo was a great one! We learned that Max's heart defect is on the less severe end and the pediatric cardiologist wagered that he will remain at the hospital with us instead of being transferred to Seattle Children's, meaning he will be coming home shortly after birth.
Gearing up for this is even more challenging. I had come to terms with a long NICU stay and to be honest, while I cried tears of joy and relief the whole way home from this appointment, I am beginning to feel a little intimidated about bringing him home right away.
It's tough to grasp that no matter how perfect and pink he might seem, without heart surgery, he will die. In a perfect world (or a perfect version of this world) Max won't need surgery right away. He will nurse like a champ and come home shortly after he is born. We will watch him closely and hope he doesn't have any TET spells. Even if he doesn't, there will be an open heart surgery looming over us like a cloud of darkness and light all at once.
There will come a day when I willingly walk into a hospital and hand my tiny four(ish) month old over to surgeons, knowing that his entire life is in their hands. I will sit in a waiting room for 8 hours or more, wondering if he will pull through it. Hoping that it works.
Being a single parent who can't work gives your mind ample room to wander. The thoughts creep up when you're alone and when there is no one around to tell you it will be ok. So I battle with myself.
I recite statistics like mantras:
This is the most common congenital heart defect, they have seen it before.
This condition and surgery have over a 90% survival rate
Look at all of the beautiful healthy children who have been repaired. They are fine.
People have questions. I want to educate the real world, but I am still learning about this tiny other world myself. And to be honest? Sometimes I just want to talk about something else.
While Max's heart has been a main focus of this pregnancy, I don't want it to be a defining factor for him. He will carry a scar for the rest of his life but hopefully when people ask him about it, it will be a quick answer. Then they will move on. For him, it will be a part of his history that he doesn't remember.
Right now though, I have been consumed by this heart defect. Every day since that first fetal echo. It blows my mind to think that someday this will be just look like a bump in the road.
I don't believe in a God or the idea that "everything happens for a reason." I do know that where I am in life, is always right where I belong. Mainly because that's just the way it is.
I don't think that my kids were sent here to teach me something. I know that they are just the miracles that happen after, well...you know. (and usually some alcohol.)
I never stop learning from them, though. Three sons have helped shape me into the woman I am now. While only one of them has yet to take his first breath, I am consistently drawing from the experience of carrying these boys. Of loving them and worrying about them.
It puts things in perspective and I am forced to remember again that life just moves on.
Always.
