The day before...

Tomorrow is coming. The one that haunts me every day - The one where we got the phone call - THAT phone call, as we tried to catch a few minutes of sleep in the "emergency" parents room next to the NICU. We rushed into the NICU in a haze of sleep deprivation and watched you quickly decline in my arms. Within an hour or so, I was holding your tiny, lifeless body next to mine and I had never felt so broken and defeated in my entire life.

I don't know what is harder to face right now. Today, which was our last full day with you, or tomorrow, the horrendous day of watching you die, and then having to leave the hospital carrying only your boxes of posessions. I will never forget looking back at your empty bed in the NICU as we stood at the nursing desk to say our farewells. My eyes searched for you and I could never imagine that there could ever be a more primal desperation that what I felt during those very moments (and have continued to feel during those times when the grief is so much more powerful than me.) I will never forget what it felt like to drive back to our town without you, knowing that the only time you would ever be coming "home" would be for your burial. Knowing that you would never get to go for walks in your stroller to the park with your sisters. You would never feel the breeze off the lake. You would never feel the warm Spring sun on your face. I will always feel your absence with everything I do. Even just the simple things that most people take for granted to be able to do with their children.

I know that today will be filled with so many thoughts that will go through my mind... The hardest being that if I could go back, I would do things so differently. I want to yell "STOP! HELP MY BABY!!!!!!" I want to change my mind about Palliative Care. I want her to be cared for just as any other baby with a heart condition would've been. I want to know exactly what was happening with her as we watched her go downhill quickly. Why was her heart rhythm abnormal? Why did she require more pressure and oxygen from the CPAP to maintain her sats? Was her decline a result of the VSD? Pulmonary hypertension? Congestive heart failure? Something else? Did it have something to do with the fact that labs weren't being drawn at this point and monitoring was minimal? I need to know exactly why. Why weren't we given details? Why didn't I demand details? I do have her medical records... Hundreds of pages of medical records. I went through a few pages of them last year, but I want to go through them again with the knowledge I now have. I can't bring myself to do it. I'm not even sure there are answers in there for me. Everything I remember reading seemed to simply blame "trisomy 18" for her decline, and eventual death. How could so many important details be left out? Like the actual, physical REASON for her death. She had a body, with a heart and lungs and brain and every other organ just like everyone else. Why is "trisomy 18" a good enough reason for her death?

I can picture so clearly this last day with her. And in my imagination, I can picture so clearly going back there and changing the outcome of tomorrow. I'm torn between two worlds - Reality, and this other place in my mind where I can somehow miraculously change the outcome and play it all out perfectly in my mind, if I just think about it hard enough. And then it hits me again and again and again. I can't change it regardless of what I think or do. I know this place of "what if's" isn't rational, but I don't know how to stop myself from going there almost daily. I don't know how I will ever be able to reach that place of acceptance when I can think of a million ways that I might've been able to save her from dying. Would life have been better than death? How was I supposed to make decisions of this magnitude? I feel nauseated and my chest feels so heavy it is hard to breathe when I think about the responsibility and decisions that were placed on us.

Hoping/wishing/praying/etc that tomorrow can come and go as peacefully as possible with everything that will be going through my mind.