heart moms

My little 9lb heart warrior has taught me so much about being mom and a human and not comparing yourself to others for happiness. She won’t ever need to be the first of her age group to roll over or say a word. It will never matter how soon she is potty trained or singing songs. I don’t care.

Harper is taking 4 oz bottles this week 👏 She is a baby like no other who has had days most other babies couldn’t relate to. We’ve had days we were elated because she lost 50 mls of fluid or became free of another med line. I’ve been proud of my child to see her breath on her own, have urine output, and hold a steady blood pressure. This week has been highlighted by a good EKG, clear chest X-ray, and gaining 1.5oz. So I’ll sing from the top of my lungs how amazing my child is, not because she did anything first or best, but because she’s growing and thriving and being her own person, and as a mom sometimes pee can make you happier than a sunny beach day.

“Are you nervous to leave the CICU?” The first person to ask if we were nervous was the doctor hoping to send us to the step down unit. Prior to that it was assumed we were nervous, anxious, on edge. From the moment we got our diagnosis no one asked “Are you scared?” Of course we were. It was the undeniable truth. Instead they stated, “You must just be beside yourself.” Approaching surgery they asked, “How is your anxiety?” Through the unknown they dared, “I know it’s hard but try to relax...”

The moment we began to see the light at the end of the tunnel, other people became confused. They failed to notice that the rain had stopped and the clouds were clearing. It’s now been a month of people asking “How are you doing it?... Are you anxious being home?” Or noticing perhaps that we are not what they would expect and saying, “You seem so happy... Nothing seems to phase you.” And they are not the only ones confused.

When the doctor asked the question I laughed, “No!” I was nervous that day. Nervous it would be another day in the ICU. Nervous to ask if we were close to the step down unit. Leaving the ICU was a momentous celebration. When people ask if we are nervous being home I am so confused.... “Why? Is someone cutting open my baby’s chest today?.... No? Then why would I be nervous?” I have lived the worst days of my life. I have known the worst anxiety. I’m not worried about these easy days. No. I’m worried the hard days will come back. I’m worried someday I will have to endure a storm again.

That’s when I realized, this is my rainbow. All the quotes I found peace in during the hard time, “After the storm there are rainbows,” had come to pass. This is my rainbow. These are the good days. I think the darker the storm you have survived the less it will storm, or rain, or be cloudy. I have faced my deepest fears and I promise you, these are the good days.

“I don’t know how you do it.” Everyone’s favorite thing to say. With everyday. Every procedure. “I don’t know how you are doing it.” As the weeks pass. As the doctors change. As the tubes and wires get added. “I don’t know how you do it.” When we handed her off to the surgeon. With the MRI. With the pain medication. When she came back open from surgery. “I couldn’t imagine going through what you are going through.” With every day that passed. With every complication. With every new hurdle. Through the ups and downs. “I couldn’t do what you are doing.” With the long and steady uphill. The improvements. The steps towards home. “I don’t know how you do it.”

“Neither do I.” Through the unimaginable fear following the life changing diagnosis. Through the sleepless nights. Endless hours of appointments. Team of experts. Nurses. Doctors. Midwives. Social workers. “No one gave me a choice.” Through the weeks of waiting with no clear answers or ability to plan. While preparing for the unknown. Getting closer to the moments of knowing and facing the repair. “How am I supposed to do this?” During delivery when the real journey began. As I handed you back to the nurse. The hour and a half they spent stabilizing you. The walks back and forth to see you as soon as I could just barely feel my legs. The hours, days and nights, sitting on hard chairs just to spend time with you. “But I don’t want to...” watching you suffer. Watching you hurt. Your silent cries. You dazed withdrawn eyes. Your side glare to every nurse. Your one eye open as you tried to rest. Every shot. Every line. “I can’t do this.” Classes to learn how to care for you. Give you shots. Insert your NG tube. Hear that you had chest compressions. Seeing you laying there limp and cold. Waiting to see if you could breath on your own. Keep food down. Come off a drug. Go back on a drug. “It’s too hard. I can’t anymore.” Leaving the hospital without you. Being in the world miles apart. Calling to check on my own baby. Walking into a room and holding my breath to see if you were content or screaming all alone. Entrusting you nurse after nurse after nurse. Surviving day after day. “I have no idea how we are doing it.”

Because no one asked, “Would you like to be a heart mom?” It’s just luck of the draw, win of the lottery, free admission to a club you don’t want to be part of. No amount of preparing that can make you more able to withstand the pain, uncertainty, suffering. I didn’t get a choice.

You don’t know how I am doing it and neither do I. I just do it. I follow her lead. At seven pounds. At five days old. I don’t know how she did it. Every second of every day. With every beep. Every poke. Every check. Every stitch. Every drop of medication. I watched her do it and I followed her lead. My little heart warrior leading the warrior leading the way. My tiny baby stronger than me. Still, I don’t know how we did it, but we did. Because through it all, she persisted.

“I don’t know how you do it.” Everyone’s favorite thing to say. With everyday. Every procedure. “I don’t know how you are doing it.” As the weeks pass. As the doctors change. As the tubes and wires get added. “I don’t know how you do it.” When we handed her off to the surgeon. With the MRI. With the pain medication. When she came back open from surgery. “I couldn’t imagine going through what you are going through.” With every day that passed. With every complication. With every new hurdle. Through the ups and downs. “I couldn’t do what you are doing.” With the long and steady uphill. The improvements. The steps towards home. “I don’t know how you do it.”

“Neither do I.” Through the unimaginable fear following the life changing diagnosis. Through the sleepless nights. Endless hours of appointments. Team of experts. Nurses. Doctors. Midwives. Social workers. “No one gave me a choice.” Through the weeks of waiting with no clear answers or ability to plan. While preparing for the unknown. Getting closer to the moments of knowing and facing the repair. “How am I supposed to do this?” During delivery when the real journey began. As I handed you back to the nurse. The hour and a half they spent stabilizing you. The walks back and forth to see you as soon as I could just barely feel my legs. The hours, days and nights, sitting on hard chairs just to spend time with you. “But I don’t want to...” watching you suffer. Watching you hurt. Your silent cries. You dazed withdrawn eyes. Your side glare to every nurse. Your one eye open as you tried to rest. Every shot. Every line. “I can’t do this.” Classes to learn how to care for you. Give you shots. Insert your NG tube. Hear that you had chest compressions. Seeing you laying there limp and cold. Waiting to see if you could breath on your own. Keep food down. Come off a drug. Go back on a drug. “It’s too hard. I can’t anymore.” Leaving the hospital without you. Being in the world miles apart. Calling to check on my own baby. Walking into a room and holding my breath to see if you were content or screaming all alone. Entrusting you nurse after nurse after nurse. Surviving day after day. “I have no idea how we are doing it.”

Because no one asked, “Would you like to be a heart mom?” There is no test. No discriminators. Nothing I did to cause it. It’s just luck of the draw, win of the lottery, free admission to a club you don’t want to be part of. No amount of preparing that can make the experience easier. That can make you more able to withstand the pain, uncertainty, suffering. I didn’t get a choice. I became a heart mom at 19 weeks. No training. No preparation. No warning.

You don’t know how I am doing it and neither do I. I just do it. I follow her lead. I do it because I am her mom. Because she does it. Because she’s is so strong. Because I have to. Because I love her. Because God gave me strength. Because the sun rose again. I am able to do it because every night I get the chance to rest. To recharge. Be

#HeartMoms