Summertime for Seraph!!

Seraph visited her cardiologist this week.  He was optimistic.  (He is NEVER optimistic).

I think Seraph is entering a summer vacation period of her life.  If we can keep her from getting sick, she won't need to go to the hospital for a whole year!!  She needs to gain atleast 10 more lbs before they'll think about doing her third open heart surgery.  (She's 22 lbs and 20 months old now)  She's soooo close to walking on her own.  Soon we'll be chasing her all around the house.  She's even trying to figure out how to go up the stairs.  Still not much progress on overcoming her oral aversions long enough to eat.

Dr. Cardiology wants to see her again in 6 months.  He wants us to keep the blowby oxygen on her.  He wants to know if she gets sick - especially if it's something that will change her fluid intake/outtake balance like the flu.  Flu very, very bad.

We're still being careful for RSV/flu season.  Sexy Haqon and I are excited for this Summer.  Seraph will be able to walk!  Her twin cousins will be coming to visit!  We'll be able to take all the kids out to places like the zoo!  Haqon *might* even be able to convince me to take everyone on a family trip.

We've plans to live it up and party this Summer.....and I gotta say I am sooooooooooooooooo looking forward to it.


So, if you come to visit, don't bring a cold/sickness.  I wanna keep my baby home this year :)  Maybe I'll make one of those signs:  95 days with no ICU!!

Good Report from Cardiology

Seraph visited her cardiologist today.  She was wary, but playful.  The x-ray was traumatic:  2 gals holding her against the wall while her mommy walked away. :( Everything else went well.  Cardiology wants to see her every 3 months.  She had labs (they might tweak her meds).  Overall the Doc was impressed. He even mentioned the possibility of Seraph being able to have the 3rd heart surgery (Fontan) if her pressures go down.  He's a pretty pessimistic guy, so him acknowledging that hope was huge for me :)

We also found out her cardiologist is also working from the clinic at the new hospital that's only 5 minutes from my house.  They'll be able to do all her future visits and tests there....except for heart caths and sedated echoes.  I'm thrilled!

My emotions have been all crazy lately.  Here's a picture of Seraph last year on Christmas Eve in the PICU:

Last year, after spending ThanksGiving, Christmas, and New Year's in the PICU, she came home on hospice care.  They didn't think she'd live to see her first birthday (in June).  My sweet little girl decided to stay with us.  She's a fighter and God has blessed us to keep her with us for now.  I'm holding my breath, but I really think she'll be home for Christmas this year.  Yay!

She has changed so much since last Christmas.  She's army crawling; sitting by herself; doing baby talk.  She's invented her own sign language to communicate:  "I like..", "I'm happy", and "that's bugging me".

At the end of her appointment today, she wouldn't let me put her down without screaming.  I pushed her stroller out to the car.  As soon as she saw our car, she made her sign for "I like.."  All her tears stopped.  She smiled and giggled and played all the way home.  I think she must've been scared that I'd leave her at the hospital.  I was just as happy to be bringing her home.  Love you, lil girl :)

Thank you for all your prayers and support - and Merry Christmas to you and yours :)