truncus arteriosus

i voice recorded the meeting with the heart doctor and i finally listened to it yesterday. there was brought up that i completely forgot about.
i just googled it today and read a bit about it.
so this is what is going on with jedi's heart. on top of this rare heart disease, the one artery that is coming out of the top is pretty small and blood flow is restricted. also, typically there is a branching off of arteries. one branch goes up and toward the brain and neck, then there is a turn, like the handle of an umbrella and the vessel then brings blood to the rest of the body. this vessel that is supposed to be bringing blood to the rest of the body is either not there or VERY small.

today's fetal echo and cardiac consult

i wish i had good news to share, even a little bit. but everything we learned today was grim. there were parts of jedi's heart that even the surgeon couldn't place or recognize. it turns out that both his heart and his brain didn't properly go through the division process- so instead of there being two main vessels branching from the top of the heart, there is only one. we discussed several scenarios and i think the biggest thing i learned in that room was that chris and i aren't exactly on the same page. at least not yet. he's of the belief that we shouldn't decide anything until jedi is born. and i already have an idea of what i want to happen.
chris' heart is in the right place. he sees us merely providing comfort care as essentially giving up. he wants to fight this, to win, to come out on top. he's not one to give up.
but i just see this little boy- who wants to be loved while he's here. loved and let go. not wired up, beeping and blipping, hauled about atlanta in an ambulance, far away from everyone he loves- only to die in a strange room with strange people trying to forestall the inevitable.
i will pray that we come to the same page- whether that be me turning to his page, he turning to mine, or both of us coming to another page altogether. regardless, we were one before jedi. we need to be one for him.

the heart of a jedi

the diagram on the left is a healthy heart. the diagram on the right is one similar to the diagram the pediatric cardiologist* drew for us last month.
1- is the pulmonary hypoplasia- the blood flow to the lungs is compromised because of stunted growth in that area.
2- is the VSD- a hole is located between the left and right ventricle
3- is the aortic stenosis- there is a blockage in the aortic valve. the doctor explained it as similar to covering the garden hose with your thumb. it's not completely blocked, but enough to cause the outflow of blood to be at a high velocity. this causes it to balloon on the other side.

so- we go back to sibley heart center- this time to the CHOA(children's health care of atl) egleston campus on wednesday morning. this is the surgery center and we are scheduled to meet with a surgeon and take a tour after our fetal echo. our pediatric cardiologist just wants us to get familiar with the surroundings and the doctors that may be involved.

please cover us in prayer on wednesday. i am praying for a miracle, but we could learn some bad news so- ask for the grace to hear it, understand it, and accept it.

*okay- i have to tell you how fabulous our pediatric cardiologist is. his name is dr. henaro sabino and he works for sibley heart center. he was so engaging and compassionate. he really took his time with us- even after talking with us at length in the scan room he brought us into an office, and proceeded to draw a diagram and answer more questions.
if ANYONE in the atlanta area needs a pediatric cardiologist, i CANNOT recommend him enough.