Monday, August 29, 2011

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.

Wednesday, August 17, 2011

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

Every Heart Has a Story

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

This was Seraph's heart at birth:
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 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 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 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 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 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 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 was born. It was my birthday.  He did all the paddling while I dragged my feet in the water to steer.

I had no 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 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 I'll survive ;)

Monday, August 8, 2011


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!

Saturday, August 6, 2011

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).

Friday, August 5, 2011

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!


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