One Week Countdown

One week countdown

Written Mar 20, 2012 8:18am by Amber Gannon Medina

A week from today. Surgery. 

Five months ago. After giving birth to a baby, having her hooked up to a million lines in the NICU and then having to go through my daughter's first open heart surgery, I didn't think I would have a more difficult week. This one feels just as bad. Maybe worse.

I don't know if I've talked much about that first week of Mira's life. I think it will always feel like it wasn't real. I am not even sure if I was "there". I remember snapshots, bits and pieces and feelings that rose through a haze of me just trying to survive. 

I remember Mira crying miserably and the nurses telling us that she was very very hungry and we were not allowed to give her any food. So I watched Mira cry out with hunger and I felt helpless. 

I remember being able to hold her, and after awhile passing her to John. I remember this simple pass causing an uproar in the NICU unit because we should have let the nurse do that and now they had to give Mira another xray because last year a baby died when her lines were jostled and migrated into her heart. 

I remember spending a few hours with her the morning of her surgery. Looking at her perfect chest and knowing it would be sliced and cracked open in a few hours. I remember the worst part of that morning was letting the doctors take her away while she was screaming. I didn't know if I would see her again, and I knew she would be sick for a long time if I did. 

And last but not least I vividly remember her surgery. I remember being alone when I got the update that she was doing very well and that her surgeon had been able to keep her two ventricles intact. I remember feeling the flood of relief followed by tears. After the nurse left, I remember feeling a horrible sense of foreboding. 

An hour later, I remember hearing that Mira had to be "converted" to a one ventricle and that they were proceeding with a Norwood. I've never felt so terrified, disappointed, sad, or heartbroken in my life. I will never forget the feeling that I was being pressed between two panes of glass, that I needed to escape and that I had no idea how I was going to make it through that day, week or year. I still don't know how I did it.

Although, many of the old emotions and terror are resurfacing, this surgery is different because I know Mira. I've spent 5 months with her and fallen in love. I've seen how much she loves everything and how enthralled with life she is. It may sound selfish or naive, but I believe I've seen how much shedeserves to have a wonderful life. Obviously, I have so much more emotion and time and heart invested in the outcome of this surgery. That sounds so term paperish, but simply put, she is my sunshine and my life and more than anything I don't want her to die. I want a good life for Mira, one where she is not limited, one where she can actually breathe fresh air every day and feel the sunshine on her face. This time around, I know what I have to lose, and I feel it in my core. My heart will be following Mira's gurney into her operating room.

And yet, if I have learned anything through all of this, and learned it the hard way-its that (of course) I don't have any control over this. Sometimes that pisses me off and at other times it comforts me. But it always terrifies me. 

So now my days consist of smelling Mira's hair, holding her close, stroking her cheeks, making her smile with my routine of Mwah Mwah Mwah and la la la, watching her sleep, laughing at her antics (one of my new favorites is her eyebrow wiggling) and memorizing every part of her. I know firsthand how fragile life is, and that no one can predict what's going to happen. I choose to use all three of my wishes, I am praying to every god there is and I am bribing Mira with all the things she gets to do once she is better-stay awhile, my love. Stay a long long while. Go to school, get your first apartment and job, fall in love, travel the world, get a dog, eat good food and wine.....grow old.