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).

Tuesday, August 24, 2010

Unexpected Results...

My darling, lil Seraph.....
We've been trying to get Searph to take more by mouth.  So, we let her suck on a few of her medicine syringes (no needles involved, these are oral syringes) before pushing the meds via her g-tube.  She sometimes likes the taste of the Argine one (it's a vitamin that keeps her salt levels in-line).  This week, she learned that it's way funner to turn the syringe around and slam it against her mouth.  This squirts all the meds across the room in a big arc.  It's super FUN!!  and it works with the Argine AND any other meds she can get her hands on.  Doh!!

I hope she'll be this happy *after* she learns how to talk.  She's my happiest child, atm...

Sunday, August 22, 2010

New Seraph Cave

Seraph found a new cave in the basement:
 Seraph helped babysit BabyH while her daddy built the shelves cave.
There's a separate-but-equal cave for Angel on the other side. 

And with that, our basement is finished!  Yay!!

We started this project thinking it'd be good to finish it off so Seraph could actually go downstairs.  She was just starting to try the stairs and I was worried about her getting hurt in the unfinished basement. (It's a mom thing, I know).  I didn't expect her to love it so much.  The basement is her favorite (inside) place to be.  The playroom is perfect and I'm soooo happy :)
Oh, and if you're thinking of finishing your basement...I know a guy who does a great job ;) Thanks, B!

Friday, August 20, 2010

My new Heart Blog

Please check out my new heart baby blog:
It really use some new comments (hint hint).
It's been keeping me busy...but now that it's up and running you'll be getting more updates here, too.
thanks, ya'll :)

Saturday, August 14, 2010

How to save a Life: the peanut allergy

Strong Bear has a severe peanut allergy.

Yesterday we all shared a donut Beautiful Rabbit brought home from school.  Then I went upstairs while the kids ate goldfish crackers.  About an hour later, Rabbit came up to tell me that Bear was "throwing up drool".  It's the perfect description.  His throat had closed off so much that he could not swallow his own spit.  He cried and talked and switched between saying he could breath and couldn't breath. It was NOT what I'd expected.

I gave him an EpiPen shot and we got him to the ER.

The shot hurt.  Moms shouldn't have to give shots to their kids.  I always thought  we'd be careful and never have to use the EpiPen. Until last month, I hadn't realized the seriousness of his peanut allergy.  In preparation for kindergarten, we took him to an allergist.  We came home with EpiPens.  If this had happened a year ago, I might have told him to go lay down until he felt better.  Would you take your child to the ER because of heavy drooling? The correct answer is YES. Immediately.

Last week, Sexy Haqon and I discussed exactly what we would do if he had a peanut reaction.  Haqon went with Bear and I stayed with Seraph (and the rest of the kids).

I've learned to read the fine print on labels.  "May contain trace amounts of peanut" is enough to stop my son from breathing.  The weirdest things have it--ice cream, dried fruit, fruit snacks, chocolate.....etc etc.  It happens when stuff is made in the same factory as peanuts.  It's CRAZY how tiny an amount of peanut it takes to send him into danger.

Years ago (before I knew about Bear's peanut allergy), I read an article on peanut allergies and scathing comments of how inconvenient it was to have peanut-butter sandwiches banned from school. I remember being shocked that any mother could be so cold. I hope they just didn't understand the seriousness of the situation--even trace amounts can cause death without immediate medical attention. Shots, IVs, secondary reactions, more shots.  ack!

The allergist said Bear was an unlikely candidate for outgrowing his peanut allergy.  His reaction is too severe and too immediate. I'm sad that he'll have to deal with this his whole life.

He's OK today.  He doesn't hate me for giving him the shot.  (I was worried.) He said Dad took good care of him at the hospital and he took good care of Dad at the hospital. I told him that Seraph's favorite part of going to the hospital is the ride home.  He understands.  He feels closer to Seraph. He used to call the hospital "Seraph's other house".  Now he knows better.

So, how to save a life?  When you're picking up treats for school, please take the time to look for a treat with this image:

OR "made a peanut free factory" 

 Watch out for the: "may contain trace amounts of peanuts or tree nuts". Those ones are very, very bad because you don't expect it.

Man, life is scary enough already without peanuts to deal with, too.  I haven't had a Butterfingers in years!!  Yes, I'm still freaking out a bit.  Breath.  Breath. Breath.

If your child has a peanut allergy (or you think he might) go see an allergist.  Call your pediatrician for recommendations.

Monday, August 2, 2010

A Beautiful Surprise

Sunday I saw the cutest little baby at church.  She was tiny and adorable.  Then someone moved and I saw the baby's twin sister!!!  I almost squealed aloud. I pushed my way over there...and met the girls' mom and then held one of the twins for about an hour.  Ya know, just to help out.  Oh, she was cute.  and tiny!  They're a few months old, but were even smaller than my girls when they were born (at 32 weeks).

It was wonderful to hold someone so tiny without being worried. We exchanged info and I was able to give her some of my twin's matching outfits from when they were tiny.


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