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)

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 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.