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Today I dared to dream.
I have been a NICU momma for nineteen days. Our family has basically lived in the NICU for all that time. Ever since Christian’s birth we’ve been living day to day, sometimes hour to hour. We are barely staving off the nightmares of what could become of our little family if most of the doctors prove to be right.
But for one moment this morning, my mind drifted. I imagined myself at home with my baby and his daddy coming home to greet us. I was sitting on the couch holding this precious child and the hubs bent down to kiss both of us. It all seemed so beautiful and normal… and special. Something I once would have taken for granted is one of the things I truly want most in this world.
An Abnormal Routine
Each day I can’t wait to rush into my son’s hospital room and tell him good morning and stroke the smooth skin of his face and hands. I read to him, sing to him, and hold him; all the normal mommy things to do with your infant. I’ve grown accustomed to being a NICU momma. Except, that sometime in the late evening, I have to leave him there. I have every confidence in his nurses. They are amazing and I know he’s in good hands.
But he’s not in my hands. He’s not snuggled up with me breastfeeding before bed or safe in the co-sleeper next to us as we sleep lightly listening to every little sound. Instead I leave my newborn son behind every night and tell him “sleep sweet Christian” as I tear myself away from his bedside. I leave seven pounds of my heart behind each night as I go home to bed. And each night it is the hardest thing I have ever done.
The Silver Lining
Yes, I have so much to be thankful for. Every morning I have a reason to get up and get dressed, looking forward with anticipation of holding my little man again. I’m thankful for the thirty minute car ride each morning because it means my little man is still fighting and waiting for me. I’m thankful for an amazing hospital and has taken care of both of us. And for nurses who have become friends and shown us how much they love our son.
But my heart aches every time I see a mother being discharged with her new baby, wishing I could know what that feels like. I hold back the tears as I walk behind a mother walking hand in hand with her three year old son and listen to them chat. Will that ever be me? Out at breakfast one morning I watched so many parents with their children. Do they know what it’s like to live as a NICU momma? I feel empty knowing that I cannot have a “normal” existence with my son. Not yet. And maybe not ever.
Optimism in the Face of Fear
But there is hope. Christian will never be like other children, but there’s a chance he could still come home and we could be a proper family. He is growing and active. He eats well and continues to do well on the ventilator. The major piece of the puzzle is that Christian has to breathe efficiently on his own. His brain has to be able to send signals to filter the air he breathes properly.
When we tried two weeks ago to step him down from the ventilator to a cpap, he failed within eight hours. We are wary to try again, both for his discomfort and our fragile hopes for the future. What will become of our family if he fails again? And yet we do know we will try again. But when? How will he react? Will it succeed this time?
Christian’s story isn’t over and with each day our hope grows as he does. Regardless of the future this little boy is a miracle and is so very loved.