Sometimes I look at and touch their scarred little bodies, and I fight back the tears. I run my finger across the two inch scar on Ryan's back and recall the moment we had to make the decision to let the doctors go in and operate on my days old baby. I remember sitting next to his isolette in the surgical suite, looking out into the NICU at my other child, waiting for the surgeon. I remember arriving at the hospital extra early just to make sure I was with him before the surgery. I remember sitting in the NICU with Evan, watching the surgical suite, incapable of really being with either of my boys.
Sometimes I tickle the half an inch scar on Evan's chest. I remember the phone call, just days after their birth. I remember falling to my knees, covering my face as Scott spoke to the nurse who called to tell us about Evan's pneumothorax, about the chest tube, about the possible IVH. I remember saying "Let's go!" I remember that drive being the longest ever. I remember holding my breath for twenty minutes. I remember reading everything I could find about Intraventricular Hemorrhages, and what that might mean for Evan.
Sometimes I play with the boys feet, and rub the tiny centimeter long scars that mar all four heels. I remember becoming far too adept at using the little device that made those cuts, squeezing tiny droplets of blood for testing, every three hours. I remember reading the results of those tests. Every three hours. Looking for signs things were improving.
Sometimes when I hold my boys hands I look at the little white dots that line their veins. I remember watching and holding those same hands as a nurse tried and tried to start IV's week after week. I remember the little light shining through their fragile hands and skin illuminating the very tiny target.
Sometimes when I look into Evan's eyes, through his little glasses and I remember. I remember the two laser eye surgeries. I remember our nurse coming in early just to be there in the room with him, knowing we could not. I remember worrying about putting my baby back on the respirator, wondering if he would come off it again. Wondering just how much he would struggle to breathe. I remember sitting bedside as he was extubated, holding my breath until he began to breathe with out the assistance of the respirator...twice.
But all of these things are behind us now, and thankfully I am the only one who has memories of all of it.
We are now making new memories...
Memories of going to the doctor and having them take pictures of our insides.
Yes that is Evan and Ryan reenacting their VCUG's. Really cute, but part of me is really sad that they can recreate such procedures.
Okay, round about way of getting to the point, I know, but it is my blog and I had to get some of that off my chest.
Evan's reflux is gone. YAY. It may come back, we just have to be on the look out for UTI's and if he has any repeat the VCUG. That also means Evan is TOTALLY off all medications, with the exception of Albuterol which is just PRN. Double, Triple YAY!!!
Ryan, as I suspected from my lay persons analysis of the scans, has shown no improvement. We have two course of actions we can take at this point. Continue with the wait and see and the medications, with a one percent chance this will resolve on its own. Or do one of two surgeries. One they inject synthetic cartilage into the valve and hope it helps strengthen the valve. It is minimally invasive as they go up through the urethra. HOWEVER, yeah there is always a but, it is only about 50 percent effective. The other surgery will have them make a 4cm cut into the belly of my baby and fix the valve at the bladder. He will have to stay overnight in the hospital, at least one night (gah). This is 95 percent effective. If it fails, they will go back in after a year and do it again. Our doctor, has never seen the second attempt fail. In his hands he has never seen a first attempt fail. (a little arrogant, yes, but a part of me kind of likes that in the guy who is planning on cutting open my baby, he knows what he is doing, and he isn't afraid to tell me so, overconfidence no thank you, but this, not so bad.)
I agreed to let him put the authorization in for the surgery and it could take a couple of weeks for approval and he is booking out 2 months right now, so, we still have some time to reconsider, a