Rabbit Spies a Star

What happens when you give a Beautiful Rabbit a video camera?

Good Girl

Angel & Seraph

For a long time now, I've felt like Seraph understands what's going on around her even though she doesn't communicate much.  Lately she's starting to really show that she understands!
When we came home Friday, I ran upstairs to turn off the beeping on her feeding pump.  She immediately burst into tears when I left the room.  (like babies do when they see mom leaving). When I came back, I learned it wasn't me she was missing at all!  On the way home, I'd told the girls we could watch Dora when we got home.  Then, I'd run upstairs before turning on Dora!!  Naughty mommy!  Seraph pointed at the TV and said, "Dora, Dora!!"
Good girl!

We've been sick a lot this month.  I've kept Seraph home for preschool for the last 3 weeks.  Today, as I was helping her get dressed, I told her that she would be going to school today.  After we came downstairs, she started talking about her shoes.  I left to grab a brush....and when I came back she was holding her backpack and pointed out the window and said, "bus!" The bus wasn't here yet, but she knew it would be coming for her :)
Good girl!

She's been letting me snuggle with her lately. Yay :)
Last night she practiced falling (onto the bed) and letting me comfort her.  We played this game over and over. She'd fall.  I'd ask if she was OK or if she bonked her head or if she needed a kiss or if she needed help getting up.  She led me through lots of scenarios.  This is one of my favorite games because....this morning when she really did fall down, I knew exactly what to say.  and she was immediately comforted and went on her way as if nothing had happened.
Good Mommy!

I Can Do it Myself: the MakeUp Edition

The girls like to get into my makeup.  It's a nightmare.  They smear it all over the cabinets, floor, bed.  They mix, dig-out, and dump out everything.  So....we made a deal.  When they want to play with my makeup, they come tell me.  Then I get to help them.  Then it's not so destructive.  So, don't tell Dad, but here's my pretty girls:

Finch applying her eye shadow

Seraph loved the blush best

Angel wanted blue!

she did pretty good for no help.
Her blush was a little low

Finch helped Seraph
and liked the colors

This gives me hope that I'll
be able to do all the girls' hair
before school each morning

Kisses!

Seraph kisses!

Angel kisses
I love this picture!

Halloween Party

The girls woke up early today to attend
Seraph's preschool Halloween Party!

Seraph LOVED being a kitty-cat just like Finch.
She even LOVED wearing her "ears."

the girls played lots of games

Seraph wasn't very interested in decorating cookies.

Instead she found a HUGE spider and
played and danced with it for a LONG time.

Angel making sure she had all her treats

Delightful Finch showing us how to
blow the bubbles

Seraph enjoying her "pet" spider.

Other games included:

• Halloween pictured Bingo (Seraph knew all the pictures, and she'd say the word then put the candy on the correct picture.  My jaw dropped.  Amazing!!)
• "Fishing"
• Ring Toss (onto a blow-up Octopus)
• Cookie Decorating
• pin the nose on the jack-o-lantern
• Halloween bowling (they put socks over the toy bowling pins to make them look like ghosts...and we bowled them with toy pumpkins)
• making Monster hands (food services preparation glove filled with popcorn with candy corn as the fingernails. Seraph loved this one the most because they'd filled a water-table with popcorn instead of water and she thought it was crazy fun to play with the popcorn.)
• Story Center (TONS of Halloween books for us to read to our kids while they sit on chairs or bean bags.) 

We might have been stuck at the story center all day.....luckily they have a fish tank by the main office so I was able to tear them away from the books.  

Rabbit Spies an Angel

What happens when you send a Beautiful Rabbit and Angel outside with a camera?

First they find the flowers!

love the toes!

I love how big sister got her shadow in this one :)

everything is more perfect with flowers!!

Angel

Big Hugs!!  (This is sooooo Angel)

Give me an "A"

My new keyboard came today.  (The spacebar on the old one was half gone...somehow).  I love the new one - logitech - I wanted a keyboard with a sleep button...but not one that's the easiest button in the world to press :p

So, I gave my old keyboard to Seraph.  She was delighted!!

 I didn't expect her to completely destroy it so quickly.  (I didn't even put bbq sauce on it!)
Once she realized I wasn't going to yell at her for biting off the letters, she really went at it.

Once she finished demolishing the old keyboard, she went straight to my new keyboard and started typing on it.  I'd be lying if I said it didn't make me nervous.  But, at the end of the day, my new keyboard was still intact.  Does that mean she can tell the difference between new and junk?

Red

I was transferring the Red Vines to a Zip-lock bag.  The kids were all downstairs except Seraph, so I thought it was safe. Seraph said, "Mommy, I want some RED."
Now, that counts as talking, right?  Can she officially be a talker now?
Yes, I gave her the candy.
Yes, she promptly threw it on the floor instead of tasting it.
I guess one miracle is enough for today ;)

Sun Daze

Sundays are a tiny bit easier than I remembered.  I'm looking forward to the time when the kids are old enough that I can sit next to Haqon at Church.  For now, we stick the kids between us and blow each other kisses.  I like to sit where I can see the tiny babies.  I guess my youngest is old enough now that I'd be getting baby hungry if I wasn't done having kids.  It doesn't make them any less cute ;)
Everyone asks about Seraph.  She is doing well.  I can't say she knows how to talk...but she knows how to sing.  She sings ABCs, Twinkle Twinkle, Head Shoulders Knees and Toes, Wiggle Wiggle, and a few others.  The cool part is that she enunciates well enough for non-family members to understand what she's saying.
She plays with Angel all the time.  It's cute!

Finch, Seraph, Bear, Angel (left to right)

Seraph has been putting food in her mouth on purpose!  She doesn't like to do it when Mom is nearby......but she'll climb up when everyone is gone and poke food with the back side of a spoon and then taste it.  So far she likes Oreo ice cream (ooops, she's allergic to dairy!) and strawberry jam.  What??  When did she start liking sweet stuff??

Her skills at making HUGE messes with food have really developed this past month.  (This is a big step from  not wanting any food to touch her!)

She's added many new words this month, too.  Yesterday she said: "Mom, I need you to give me drink." When I reminded her to ask for water in her cup. She says, "Mommy" every time she sees me...which I just love!!  She's very loving...and gives us hugs and kisses...and her favorite toys hugs and kisses....and my kids' friends hugs and kisses.

She's getting more used to taking the bus to preschool.  Today she frowned, but didn't cry.  Delightful Finch kept asking, "Mommy, where is my bus?  I want a bus to take me to my class!"  She's out of luck as we live very close to the school she'll be attending next year.

Finch is also having a hard time with Angel's potty training.  Finch doesn't understand why we don't all get candy when *she* goes potty. Beautiful Rabbit (as the oldest child) is very sympathetic of Finch's plight.

First day of Preschool

Angel & Finch playing outside waiting for Seraph to come home.

"Hey, where's Seraph's bus?"

"I think I see it!"

"Seraph!!!!  How was your first day of preschool?"

Seraph didn't stop to give me hugs or even
say hello.  She bee-lined  straight for the water
cup I'd left on the steps. It must've been a
thirsty day because usually ignores her sippy cup.

bye bye, bus!

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 ;)

Mah!

When Seraph was little, she noticed that everyone was giving her kisses and she wanted to give us kisses back.  She couldn't quite figure out how to do it. So, instead, she'd push her lips against your face while saying, "Mmmmmmmmmmmaaaaaah!"
Seraph has since learned how to make kissing sounds with just her lips.  So, she doesn't say it anymore.  However, it's become traditional in our family to say, "Mmmmmmmmaaaah!" (even without the kiss) as a loving greeting or  farewell.

"Love you, Mom, mmmmmmmmmmaaaaaah!"

"Goodnight, sweetie, mmmmmmmmmmaaaaah!"

"I'm going over to Jeff's house - mmmmmmmmmaaaaah!"

 "Have a good day at school!  Mmmmmmmaaaaah!"

"Missed you!  Mmmmmmaaaaaah!

:)

Get a Kix out of Food

Kix Cereal is fantastic for feeding therapy. Here's the game we played with Seraph today:

1. get a small bowl and some Kix Cereal (or anything small and spherical) 
2. put one Kix ball just inside your mouth and then blow it out into the bowl and count, "ONE"
3. Now put a Kix ball in Seraph's mouth and tell her to blow it into the bowl and count, "TWO"
4. Let her have lots of turns, but do it again yourself if she starts freaking out.

The beauty of this game is that you're telling her to spit it out.  So, she doesn't freak out that something is in her mouth.  Yet, it's in her mouth long enough for her to lean over the bowl. This gives her time to taste it AND time to manipulate it around her mouth with her tongue.  Put it under her tongue or in her cheek.  Yes, she let me put it in her mouth. The most important part is that you're showing her to spit it out...and telling her to spit it out.  This is what makes the game non-threatening.

Other games we play with Kix cereal:

1. pick up the balls one at a time with fingers and drop them in the bowl and count them
2. blow them across the table
3. put them just inside your lips and then blow them with a puff of air (Seraph finds this game so hilarious, she forgets food is touching her mouth).

Day One

Oral Feeding.
It's time to get this little girl eating.  We took a break from feeding issues for a whole month.  It's been really good for her.  She seems more interested in tastes than before.

I grabbed the NUK/Gerber Healthy Start Training Toothbrush Set

at my local grocery store. Seraph loves them! She chomps away both near her front teeth and near her molars. She likes them even when I dip or spray them with food. Amazing!

She also let me blast her with this sour candy:

Quick Blast Sour Candy Spray - Kidsmania

It just squirts out a tiny bit of the candy when you press the black piece on top. Last time I tried something like this, she'd gag and drool it all out. It helps that her siblings are so excited to try it, too.

I also got miniature marshmallows and threw them up in the air so they'd fall like rain. Seraph thought this was hilarious. I didn't expect her to eat any. But, a few minutes later I saw one in her mouth. She tried it out for a while and then pushed it out of her mouth with her tongue. She really hates anything sweet so this was a huge step for her. 

Goals for August:

1. She will tolerate 5 different flavors 
2. She will put things in her mouth even if they taste like food. 
3. She will sit at the kids' table for at least 5 minutes while we're eating lunch and dinner. 

We're still brushing and flossing her teeth every night. This helps her oral aversions a TON. She LOVES brushing now (used to really hate it, though).

We'll be doing lots of oral play with the toothbrush training set and anything else I can get her to chomp on. (like the rubber ducks. we have about 30 rubber ducks. It started as a collection from doctor's office visits, but now we buy them, too. I don't allow the kids to play with them in the water because I don't want them to get all gross inside.)

We'll also be giving her new tastes of food as often as possible. Hopefully we'll find a flavor that she likes enough to tolerate two tastes of it in a row.

Wish us luck!

First Sentence -

Per the speech therapist's instructions, I don't lift Seraph out of her crib until she says "up" or at least points up.  More often than not, she needs prompting.  Today I was a bit late getting her up.  As soon as I came into sight, she yelled, "UP!!!" Then when I got to the crib she surprised me with her first full sentence: "I need you lift help me to up."

Then when we got downstairs she said, "I need you to help me Dora." Wow. I found the kids' Dora Movie and got her a Dora shirt for good measure.  She's playing along with the Dora Movie and giggling.  Yay!

Footprints

We've been really sick this past week.  Feeling better today.  We rode bikes to the school to check on the class lists. Then Seraph ran over to see the sprinklers.  Bear and Finch were sopping wet in seconds, but Seraph stuck to the outskirts of the water.  Still, she was very brave.

Surgery Date Set for Seraph's Next Open Heart Surgery: August 30th

Angel & Seraph 11 days old
(minutes before Seraph's first open heart surgery)

Beautiful Rabbit (8yrs) holding Seraph & Angel 
the day we brought Seraph home from the 
hospital the first time (1 month old)

Angel & Seraph the night before Seraph's second
open heart surgery (4 months old)

Delightful Finch, Seraph, & Angel 2 months *before*
Seraph's third open heart surgery (3 years old)

----------------------------------------------------

 Seraph's (Fontan) open heart surgery is scheduled for August 30th. We're planning on requesting a day of prayer and fasting for her to be held on the first Sunday in August. More details on that and the surgery later.

This should be her last surgery for 15+ years if all goes well.

Please keep her in your thoughts and prayers.