Grim Reality

Lately people have commented on how well I'm handling the baby's upcoming surgery. I'll let you in on a little secret. I'm not actually. I am struggling something fierce. I'm stone cold petrified. Every night for the last two weeks, I have cried in the privacy of our walk-in closet. My stomach is in knots and I am having the worst nightmares imaginable.

Dave is doing a little better. He spends every minute of his off days with Nyx. He doesn't care to talk about the surgery or the what-ifs though so I don't push. It probably not the healthiest approach to this but whatever.

I know a lot of our friends and family don't get why we're so stressed over this. They point out the less than five percent chance of serious complications like that should relax us. Well you know what? Nyx had less than one-half of a percent chance of being born with Tetralogy of Fallot in the first place. As I've said before, we won that genetic jackpot so percentages don't provide any sense of security anymore.

Let's be real. This repair requires a heart-lung bypass machine and complete circulatory arrest. This is a complex open heart procedure made even more difficult by Nyx's small size and the funky anatomy of her heart. Her coronary artery is in the wrong place. She has extra vessels branching off the right side of her heart. All of these things complicate the surgeon's approach.

Because Nyx's pulmonary artery stenosis is so profound, the surgeons can't go in through that artery to gain access to the various areas they need to fix. They will have to cut heart muscle to do all the patches in that area. Once you start cutting muscle...well... But we've been assured failure of the right side of the heart in later years isn't as serious as failure in the left. Like that makes us feel better, right?

Worst of all is knowing we'll be right back in this situation in ten to fifteen years. Maybe twenty, if we're lucky. That valve is going to fail. It's only a question of when. And I hate that. I hate that Nyx will grow up with that shadow looming ominously just out of sight.

But back to that five percent.

The morning Nyx was rushed in for her emergency shunt, she was bumped out of the OR for another little girl in desperate need of a new heart. Just hours earlier, someone, somewhere, had died and left behind that most precious of gifts. Dave and I shared the waiting area with this little girl's extended family. Those people were so happy. Their relief was palpable.

When Dr. Fraser came out to speak with Dave and I about the surgery, to let us know it had gone well and Nyx was doing well, we were relieved. We couldn't wait to go back into the CVICU to see her. But as we prepared to head back, the secretary of that floor came down to the waiting room to let us know the floor was closed. Dave and I had read the visitation literature. We knew what that meant. The floor was only closed to visitors during emergencies and codes.

Was our baby coding?

No. It was the little girl with the new heart. She was brain dead.

I will never, not for the rest of my life, forget the sounds of that child's wailing mother. I will never forget the sight of that poor woman tearing out chunks of her hair and beating her chest. I had only been a mommy for fifteen days but I understood that kind of profound and devastating grief. The love of a parent for his/her child is incomparable to any other love, even that passionate all-consuming love toward one's partner.

Dave and I know what that five percent looks like. It's hard to take comfort in the odds after an experience like that.

So we aren't. We're tempering our optimism with a tiny dose of reality and praying for the best. We have the utmost confidence in our surgeon and the staff at TCH. We know Nyx is in the best possible health for this kind of procedure. And that's that.

For now, though, we're enjoying every second with our chubby little pumpkin head and trying to live in the moment.