This repair is so risky. It's essentially three surgeries in one, complicated by her small size and active endocarditis. Needless to say, we're terrified. Today has seemed surreal. We're going through the motions but our minds wander where they shouldn't. "What if's"creep in unannounced making my stomach drop. I just keep staring at my baby struggling for breath and fighting her ventilator hoping beyond hope that things will change after tomorrow. I hope this surgery allows her to heal and doesn't make things worse. She deserves to be able to heal and grow. She deserves peace, health and vitality. She deserves comfort. She's so uncomfortable. Even heavily sedated she stirs with pain, fear, and generalized discomfort. We've gotten her providers to increase her pain and sedative medication, which has helped but still she's often restless. She strains against the vent, silent screams that pierce your soul. I miss her beautiful eyes and long to see them but feel guilty when I get my wish because she's so uncomfortable.
I was asked this morning how I feel in preparation for tomorrow. I had a dream last night that might explain better than I can.
Sean has been reading and watching a great deal about alpine climbing recently, which is likely why I dreamt about our situation in such context.
In my dream the three of us were climbing what seemed like an 8,000 meter peak. It was cold and we were in blizzard conditions. It was just the three of us. Sean and I could barely make each other out through the blinding snow. I had the baby wrapped snuggly in my arms and was terrified we'd lose her. She wasnt doing well and we were trying our best to save her. We were trudging through deep snow up the mountain via a ridge line. As we climbed we straddled steep drops on either side. I was so angry that we were in this situation. We were all so tired and weary. We couldn't stop or we wouldn't make it. As we climbed the ridge got narrower and the drops steeper. The higher we went the weather began to lessen. We could see the beauty of the summit that awaited us. The last bit would be the hardest part but we had to summit, Avelyn's life depended on it.
I woke before we summited and couldn't go back to sleep. I stayed awake staring at Avelyn and thinking back upon the dream.
I feel we're still on that peak. Tomorrow we'll climb the last stretch-the hardest stretch. We're weary. We're angry. We're determined. We'll summit. We have to. Avelyn will make it through her surgery and we'll get to be the parents we long to be.
Yet recovery won't come easily. I am not fool enough to believe it will. There'll be hiccups and holdups along the descent. Often times it's the most dangerous part of a climb, as too many people rush it. We won't. We'll take it slow. We'll savor every moment of the journey because one day soon we'll look back at the peak we've just climbed with awe. We'll point to the summit and tell Avelyn her harrowing tale. How she triumphed and persevered. We'll tell her how strong and capable she is. We'll ensure she knows of those who's journey led them into the clouds. We'll be sure she remembers each of their names. We'll be sure she knows how blessed she is to have survived and how much she is loved.
Above all we'll never forget our climb. How could we? It's been an experience I couldn't wish upon anyone.
I look forward to such beautiful hindsight.
I know I should look forward to tomorrow. I know this surgery is life saving for my daughter, and I am so thankful she has the opportunity to have it. It's so hard not to dread it though. It's such a risky surgery. It will be so long and complex. So many things can go wrong.
As I often say, she is our little precious wonder. She's our world. All we truly have. She couldn't be more loved.
Please keep her in your thoughts and prayers over the next couple days. She's in for the fight of her life.