Melts in your Mouth

Seraph is still fed via her gtube....and we're in the process of teaching her how to eat.

Twice a day (it's supposed to be every meal but that never happens), I strap Seraph into her chair and shove three bites of food into her mouth.  Breakfast is apple-cinnamon stars!  They melt in your mouth so I just grind them into her teeth a bit.  The cinnamon is pretty potent for baby food.  Her taste buds are fully in now but she's not used to tasting anything.....so we're working on getting used to tastes.  She HATES it!

I leave a sippy cup in reach.  (Filled with water, but I sometimes add some juice to the water)

The food does NOT go over well. Ever.  But....she often grabs the sippy cup to help get rid of the flavors in her mouth.

When it's over, I have to wait til she's not crying before I can get her down.  I usually hand her the sippy cup or put it down low where she can grab it.  Sometimes I spy her sipping from it later.  Yay!

Today I scooped up Angel and fed her the same way right along-side Seraph.  She was a good helper!  She helped me blow Kix around the table, too.  (Seraph gets a big kick out of blowing the tiny Kix balls across the table...it helps distract her so we can take bites of food more often.)

It's incredibly important to Angel to show everyone that she can do anything her siblings can do -- even her lil sister ;)   So, she LOVES being treated like Seraph....even if it means eating baby food.

When the therapist told us to explore new flavors with Seraph....

I don't think she meant shoes.

Seraph's favorite napping spot.

When our builder said "oh, and we purposely didn't screw in the vents so they'd be easier for you to take off," warning bells rang in my head but I didn't say anything. Seraph loves opening the vent.  She's like a lil ferret--it's her "nest" and everything she loves ends up shoved down that hole.

 Seraph prefers cooler temperatures.  Her heart defects cause her heart to work harder and I think that makes her hotter.  She loves cold. So, this vent is her favorite cuz it blows out cool air AND it's right by the front window so she can see everything outside.
I try to keep the vent covered...but,....
Once I came in to find her standing in it.....
She pushes away strategically placed chairs and bags to get to her favorite hole.

She's also started using sounds to communicate.  When I put her to bed tonight, she came to the edge of the crib and said, "up!"  (no, it didn't work--but I'm happy she tried.)  and she likes to bring me her favorite book and say, "Elmo!" so I'll read it to her.

Slurrrrrrrp

Speech Therapy

Today was our first day with the new speech therapist.  We'll miss our friend, Dee, who'd been with us off and on since Seraph was 5 months old! (It's totally weird not having her over weekly now.)
Angel completely freaked out having someone new in the house.  I had to hold her the whole time.  I thought she'd grown out of this phase.  Nope.
Seraph did well. She played with water and made lots of sounds and successfully played with spoons and cups without food while completely shunning anything that had even a tiny bit of food on it.  She fed me Popsicles...and sorta tolerated it when I snuck her a few tastes.
We're supposed to touch her face more and have her sit at the table during meals and give her stuff to make messes.

The twins on the wheel go 'round and 'round....all day long!

Festival of Trees

Painting with Whipped Cream

Whipped cream painting is like finger painting but the mess isn't as permanent.  We used to do this in preschool.  What better way to trick Seraph into playing with food!!

Finch loved it!!

Seraph was NOT tricked.  Not even for a minute.  It was perfect for Angel, though.

Then I "wised-up" and put Strong Bear's on a plate.  Big mistake.  He barely drew at all!  It went straight in his mouth.

A great holiday (or any day) activity.  Clean up is easy - wipe everything twice with a warm/hot cloth.  Maybe next time we'll try pictionary--naming shapes and letters.

Dinner Music

I was sooooo busy playing card games that I asked my Sexy Haqon to please feed Seraph for me.  When I looked over to see how it was going, she'd gathered a HUGE group of cousins (and an Auntie) to sing to her while Daddy filled up her tummy.
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I was brushing the tangles out of Angel's hair this morning when.....
Strong Bear:  "Mom, you need to stop now.  Her hair is pretty enough.  You're done."
Angel gladly scooted away and showed off her beautiful do.

Gma & Gpa x 2

We had both sets of grandparents up for a visit and it was a blast :)  Seraph wasn't sure about Gpa C at first, but after a game of peek-a-boo where he jumped his whole body in and out of the room, she decided he was too much fun miss. Angel wasn't happy sitting on any lap--had to have the lap Seraph was already on!
So much fun!

Say Cheeeeeeeeeeeese!

I forced Seraph to taste some food today - baby pears mixed with low-sodium saltine crackers.  It smelled like pie!  Seraph hated it!  She pulled the most awful face and started crying.  I ran across the room to grab my camera for a picture of her "hating the food" but as soon as she saw the camera, her tears turned into a huge smile.  She loves loves loves seeing pictures of herself.  She always blows herself kisses.

 After two more bites of food, she was ready to cry for the camera.

 Fingers in the ears is her sign for "stop, I don't like it"

 The "danger" wasn't going away fast enough....so she threw all the spoons on the floor.

 After lunch, when I was upstairs with Angel, Seraph started unloading the dishwasher for me.  She's such a sweetie! She pulled out the dishes and threw them on the floor for me.  Such a big helper!

 Then she climbed into her new favorite chair--mommy's computer chair.  She loves to sit in it and click on the mouse, type a bit, and then turn the monitor around. She may not be eating or talking yet...but she's got the important things down ;)

Snow Day and Cuz

Cousin D came to visit.  He was a huge hit.  Everyone loves him.  Seraph watched through the window as he made a snow bunny then a snow turtle.

 Angel helped - she decided the bunny didn't really want to be left on the porch so she scooped him up and threw him down on the ground.  Bunnies prefer to be on the ground.

 Finch handed me snowballs (I was inside with Seraph) so I could throw snowballs at D and Beautiful Rabbit (not to be confused with snowy rabbit).

 Beautiful Rabbit needs to work on her aim :p  She threw very gentle (and barely packed) snowballs at Seraph's window (before we opened it).  Seraph LOVED watching the snow splat right in front of her face. Giggles all around.

 Ok, I need to get Seraph some boots.

 Cousin D fixed snowy bunny...and then gave him a safe little hideout - safe from Angel and bunnies would rather be on the snow than the cement anyway....

 Snowy Bunny's new house.

It's supposed to snow more tomorrow....and I haven't taken pictures of the snow turtle yet.  He's HUGE!  This was way funner than snowmen.  Thanks Cousin D!!

My kids all took LONG naps after he left - can't wait for him to visit again :)...tehehe

Outside is funner than Inside

Did you know it was Seraph?

My lil Vampyre

Last night Seraph slipped and hit her lip on the bookcase.  It bled like crazy!! (She takes a blood thinner).  She looked all Halloweeny - it was spooky!  I was really freaked out -- wondering if we needed to take her to the hospital.  But...daddy said she'd be fine and a few mommy hugs later she ran off to play.  Today she was hamming it up for the camera again.
She likes to bolt for the door whenever anyone opens it.  She grabs handfuls of lavender and breaks them off and then plays with them like magic wands. Outside is way more fun than inside, even if it's a bit chilly.

Finch Earns a Puppy

 There comes a time when you're willing to stand on your head while singing Elmo's song while juggling a ball with your toes rather than keep changing diapers.  Delightful Finch required just the right set of circumstances, but she is basically potty trained now!

I invite Angel to go potty all the time....and she tries, but nothing ever comes out......until today!  It finally clicked and she just got it.  Sexy Haqon agreed to take care of Seraph's meds/feeds/diapers/etc as well as feeding the kids and keeping the kids from getting bored so I could follow Angel around all day helping her learn this potty thing.
I'm happy with her progress.  At first she was surprised by ummm..puddles...but now she can hold it in for almost an hour before needing to go potty.  Soon, I'll be able to get Finch and Angel on the same potty schedule...and that'll be perfect.
Then I'll only have one in diapers!  I can sooooo handle just one in diapers.  Sooooo much nicer than 4 in diapers.  AEEEEEEE!!! Thank heavens they grow out of that stage :)

I'm lucky my lil Angel is such a good copy cat.  Way to go, lil roo.  xoxo
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Mom: Finch has been really awesome at this potty thing, so I'm gonna go ahead and get her a puppy.
Dad:[omg, are you crazy!!!] uhhhhh - don't you think we should talk about this first?
Mom: why?
Dad: ......
Mom: oooooh, not a real puppy, sweetie, ...one of those Leapfrog Puppies that says, "I love you, Finch" and sings her songs like Angel's and Seraph's.
Dad: Whew!
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Faerie Wings

I usually skip contests, but these faerie wings are AMAZING!! and the contest is so simple:
click for details

 or

and just in time for Halloween.  I mean really, how cool is that?  My oldest really likes sunflowers.  Ok, you should've clicked thru but here's the link again: http://becauseidontscrapbook.blogspot.com/2010/09/enter-to-win-these-gorgeous-wings.html
You owe me brownies if you win instead of me :p

Happy First Day of Autumn!!

My lil Angel had a fantastic day.  We drove through heavy rain to the library.  The rain stopped just long enough for us to run in and grab our books.  We grabbed happy meals on the way home and then played til the school kids came home.
Watermelon for dinner plus way too many of Angel's favorite treats:  gummi bears with chocolate pudding and donut holes.  I forgot to break out the colored marshmallows, so maybe we'll do that today.
Thanks to everyone who called and sent cards for Angel's special day (that she doesn't have to share with Seraph like her birthday.)
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Angel: hey you, buzzy-bee fly!!  Hi-yah!!! [complete with karate chop]
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Finch: Hey, can I have it?
Mom: I dunno, that's Dad's.  You'll need to ask Daddy.
Finch: Oh, Daddy wants you to know that he wants me to have it.
Finch: [smiles sweetly with a "problem solved" look in her eyes]
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Seraph: ssssSSSSSSsssssSSSsssssssssssssssssssssssssssssssss!!!

Wordless Wednesday

Tis the Season...

Yesterday, they started doing radio ads for flu shots. Flu shots? Seriously?? We usually get them mid-November...
Tonight, Strong Bear threw up. Yuck! It wasn't his peanut allergy (phew!)....Is it bad that I am hoping I just food-poisoned him with wilted lettuce? I just don't want anyone else to get it...and I've never successfully kept Seraph out of the hospital when she has diarrhea (her Nissan, for reflux, prevents her from throwing up...)

It's gonna be a long night....

Seraph's Story

When Seraph was born, her heart was like this:

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

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.

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This story brought to you as part of:

(click the image to read more CHD stories and check out Stef's blog while you're there).

Normal Heart Image