Seraph's AVSD and HeartBabyHome

Last year I shared Seraph's Story. This year I find myself looking back.

This is Seraph:

This was Seraph's heart at birth:

Dextrocardia,
AVSD--Atrioventricular Septal Defect, 
DORV--Double Outlet Right Ventricle,
PFO--Patent Foramen Ovale
1--Coartation of the aorta, 
2--Transposition of the Great Vessels, 
3--Pulmonary Vein Stenosis

I remember driving home from the OB's office, still in shock, pregnant with TWINS!!  I stopped at the gas station, leaned against my tiny, blue car, and took deep breaths.  Unbelievable.  Life is going to be so different.  Wow.

I had no idea....how much it would change.

I remember driving home from my first fetal echocardiogram at the hospital. My parents had been watching the older kids.  I walked them out to their car to speak with them privately. I stood on the curb, picked green leaves off a short tree, and told my dad that we were gonna need a miracle.

I had no idea....that we'd need more than one.

I remember standing in the poring rain by the lake trying to get far enough away to hear the doctors when they called to summon us to the hospital. Seraph was very sick and they didn't think she'd make it through the night.  I remember my family being there for me.  for us.  I remember the doctors being wrong....again.

I had no idea....how hard I could pray.

I remember the red bow they stuck on Seraph's head in the ICU on Christmas Eve. Her meds made her cheeks bright red, too.  Seraph was very sick and spent too much of her first year in the hospital. My two biggest fears (before she was born) were losing a child and driving in crappy weather.  I remember cascades of slushy snow spurting from a snowplow as I edged around it in a blizzard to get to Seraph in the ICU.

I had no idea....how many babies spent their holidays in the ICU.

I remember Seraph's eyes lighting up as she watched videos of her brother and sisters playing at home. I'd throw blankets over her head and she'd giggle.  I'd hold her and rock her and hold her some more. Then I'd go home and call the nurse to see if she was OK. I'd touch her empty crib and whisper a prayer.  I'd wake up in the morning and call her doctor to go over the plan. 

I had no idea.....how fiercely we would love her.

I remember going in to check on her late one night. Seraph was sleeping peacefully. ....her g-tube beside her on the bed, her feeding pump spilling formula everywhere.  I rolled her over.  The hole in her tummy was too far closed for me to put the gtube back.  I'd have to wake her.  Take her to the ER.  They'd hold her down and force it in.  I took a deep breath.  Grabbed the supplies.  Lubricated everything and shoved that gtube in so fast that she didn't wake up.

I had no idea....that I could do that...it was better than shoving that yellow tube down her nose.

I remember sitting on the lawn with my friends picking one blade of grass at a time and telling them about a little boy who'd earned his angel wings while waiting for a heart transplant in Texas. I didn't know the family but my heart ached and I wept. I wondered if the Grinch hurt when his heart grew 3 sizes in one day.

I had no idea....how much more my heart could grow.

I remember sitting in a canoe watching the sparkles dance on the waves and explaining to my husband why I wanted to draw heart illustrations to help moms explain congenital heart defects to the friends and families. That's when www.HeartBabyHome.com was born. It was my birthday.  He did all the paddling while I dragged my feet in the water to steer.

I had no idea.....how wonky hearts could be or how many little hearts would touch my own. Your children are precious and amazing.  Thank you for letting me draw their hearts.

I remember sitting in recovery after a very short heart Cath trying to keep Seraph's leg straight for 6 hours.  Ya right. Miserable. I didn't know how I'd make it through another surgery.  I remember her carefully worded request: 'Mom, I need you to CAR' when the doctor walked in.

I had no idea....her high pressures would rule out the Fontan.

I remember being approached by a young boy at church.  It was the day we fasted and prayed for Seraph.  He had both concern and determination in his eyes as he asked me if Seraph was OK. "She's doing really well today."

I had no idea....how much people would care about my little girl. Thank you.

I remember meeting other heart moms who filled me with so much hope that I'm left wondering if they were real...or angels in disguise. Perhaps a little of both.  I had no idea how closely God watches over us.

Tomorrow will be Seraph's first day of preschool.  Wow. I have no idea.....how I'll survive ;)