Precious Hearts

My daughter, Seraph, had her first open heart surgery when she was eleven-days-old. My husband and I sat in the waiting room taking turns holding her identical twin sister, Angel. They were both under five pounds at the time. (Angel's heart is healthy.)

Twenty minutes earlier we'd begged the doctors to bend the ICU rules so we could take pictures of the twins — their first time together since birth. Seraph, already heavily sedated, lay motionless. Her skin was bloated and yellowish. The whoosh-whoosh of her breathing machine drowned out Angel's timid cries.

I knew she would be OK — if only because I couldn't fathom losing her. I walked next to her glass bed to the doors of the operating room. I kissed her forehead and then my hope faltered. What if this was my last chance to tell her how I felt about her? I whispered that even if things went bad in there, she belonged to me and I would love her always.

Three surgeries later, I still hold my breath at the operating room doors. I know she needs the surgeries, but part of me wants to grab her and run. At home, I double as Seraph's nurse. No one told me I'd have to give blood thinner shots, thread feeding tubes down her nose into her tummy, interrupt my sleep each night for her 4:00am meds, or rush to the ER with a listless preemie.

Most of all I wish someone had told me what to expect from my other kids. While I thought about how tell them Seraph might die, my kids instinctively knew. They know when I'm faking, so I have to truly believe that Seraph will always come home.

So, I tell Seraph that everything is going to be OK. I give my nine-year-old daughter "mommy hugs" and remind her that Seraph's a fighter. I tell my toddlers that the doctors will help Seraph's heart work more like our hearts. Later, I tell Angel to send Seraph messages about coming home because I secretly feel they share that special twins connection.

Last night, Seraph came home from a short hospital stay. I sat her up on the floor. The kids surrounded her. Angel gave Seraph lots of kisses — a newly learned skill. My son patted the twins on their heads and my oldest daughter squealed.  Seraph smiled.

I love that smile. We cheer wildly for each milestone she passes — from learning to track with her eyes to learning to sit up. The uncertainty of her future makes each day special. The less important things get ignored.

My house isn't the cleanest on the block. We greet people with hand sanitizer at the front door. My kids play inside more than outside. They haven't ever been to the aquarium. They ask for mommy hugs when they feel hurt. I let them stay up too late and eat oatmeal cookies for breakfast.  They know too much about hearts and hospitals. They know Seraph's smile means she likes you.

Our hearts are all connected. It feels like heaven when she's home.

Author: Nanette