Sunday, August 29, 2010

Seraph's Story

When Seraph was born, her heart was like this:
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
Her identical twin sister's heart was like this:
At birth, Angel was whisked off to the NICU and Seraph was whisked off to the PICU of the hospital next door.  10 days later, they were together again just before Seraph's first open heart surgery:
Angel & Seraph (11 days old)
The first year of her life, Seraph spent a lot of time in the hospital - Thanksgiving, Christmas, her first birthday... She was away so much, my son re-named the hospital "Seraph's other home".  She was 5 months old when she had her 2nd open heart surgery (bi-directional Glenn). She almost didn't make it back to us.  The hospital released her to us on palliative care - telling us she might have only days to live..possibly up to 6 months.
Seraph & Angel (1 month--hours before Seraph came home for the first time)

We prayed.  We slept by her bedside. We pushed meds, re-adjusted pulse/ox monitors, changed diapers, sang, rocked her, and prayed some more. The kids gave her kisses and brought her toys.  7 months later, the doctors took her off palliative care. She got a g-tube, and started physical therapy.

Seraph is toddling now. (She graduated from physical therapy).  It'll be atleast a year before she could have her 3rd open heart surgery (the Fontan--which is now back on the table). I still peek in at night to listen for her steady breathing on my way to bed. I pray for 80 more years of her sweet smile.

Seraph & Angel (2 years old)
Seraph is expressive even without words.  She loves fiercely.  She is all smiles (until she sees a doctor's labcoat). She loves music (but has no trouble letting you know if a certain song does NOT count as music.) She explores. She screams when her siblings fight. She blows kisses. She likes Elmo and rubber duckies. She likes books and playing with my computer.  She is so full of happy.

A few days ago Seraph took my left hand and Angel took my right hand and we walked across the grass together--all smiles and giggles!

I believe in miracles.  May God comfort you in your hard times, and may compassion fill your heart so you can't help but help others along their way. Look for silver linings...and they'll light up your whole world.

This story brought to you as part of:
Every Heart Has a Story
(click the image to read more CHD stories and check out Stef's blog while you're there).


Stefenie said...

I had no idea the true struggles that you have all faced. Thanks you for joining my blog event and sharing an inspiring story! What a little miracle!

Fine Art by Jennifer said...

What a beautiful story! We've been with you all along, thanks to your wonderful blog. We are so happy for the miracles. We love you so much!


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