Thursday, December 31, 2009

Checking in...

We're good - Seraph's home and healthy.  No one is sick.

Seraph is officially crawling - her therapist confirmed it today.  She does a lot of scooting and rolling, too.  She's reaching for things up high.  She loves to practice standing so that's her next goal.

have a happy last day of 2009.  Time to get rdy for next year :)

Thursday, December 24, 2009

Merry Christmas!!


We made it!! BHAAAAAAAAAAAAAAAAAAAAAA!!!!!!!!

Monday, December 21, 2009

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 :)

Wednesday, December 9, 2009

Like a Quilt

Angel.
I took her to get her stitches out.  It was FREEZING cold today!!  Delightful Finch threw a fit when I threw her coat on Angel and headed for the car without her.  It was not OK.

Angel fell asleep in the car, slept through check-in, slept through 20 minutes of Tom & Jerry cartoons (wow, they still play those??), and slept through all but the last snip of the stitches removal.  Her room in the ER was a luxury suite compared to the hospital room I lived in for the 6 weeks before her birth.  It was huge!!  The attached bathroom was twice as nice, too.  *sniff* *sniff*

When I mentioned that to the nurse, she said that sometimes people stay a long time in the hospital for monoamniotic twins.  That's what I was in for!  I didn't get a chance to ask her how she knew about momo twins and their inpatient stays.  (www.monoamniotic.org is working again - yay :))

Angel, looking for her one true love, dropped one shoe in the ER drop-off zone.  Luckily we stopped at the pharmacy so I noticed before we got home.  No prince, but no one had run over her shoe either.

At home, Delightful Finch was jealous of Angel's hospital ID tag (around her ankle--the first one she'd had since birth....Seraph gets them all the time).  I figured if Finch could share her coat, then Angel could share her ID tag.  So, I slipped it off and gave it to Finch.  She pulled up a chair and cried cuz she couldn't get it over her ankle.  I guess the novelty wore off cuz it's sleeping on the floor tonight instead of next to her pillow with her other treasures :)

Glad Angel's finger is stitch-less again :)

Sunday, December 6, 2009

Little Seraph

Seraph is so playful!  She doesn't mind when Angel shoves toys in her face (usually Elmo).  She still cries when one of the girls screeches/screams in delight - a problem because sometimes seeing Seraph is enough to make them scream with delight.

I wanted to post a video, but I can't figure out how to post it on this new editor.

Anyway, Seraph is spending good chunks of time on her hands and knees!  I haven't seen any actual (real) crawling yet.  She still army crawls and rolls when she wants to get somewhere (or away from something) fast.

Today she went from her back to sitting up all by herself!  I'm not sure how...we were playing games at the table and when I looked over she was sitting.  She's yet to do it again, but I'm watching for it now :)

We had some issues with her g-tube leaking (again) yesterday....but a long internet search turned up a quick fix -- stuff folded tissue between the button and the skin.  Crude, but it works.  She's fine on her back, but on her tummy she pushes the button down and then the balloon seal is broken and she leaks.

There's a nationwide back-order on her newest diuretic medicine.  The hospital was almost out so they only gave me a week's worth.  Hopefully I can find someone who has it on their shelves (or someone who can compound it).  None of the weekend pharmacies had it so I'll be trying again tomorrow - wish me luck :)


Friday, December 4, 2009

Twins Together :)

Seraph is home!!!

When she got home, Angel followed her around saying Seraph's name.  Later when we took Angel up to bed, Seraph stretched to watch Angel disappearing up the stairs and burst into tears.

Gma reminded me last night that Angel is always more clingy when Seraph is in the hospital.  

I've often wondered if my girls' twin-bond would be lessened because they spent months apart when they were newborns.  Who knows!  but they sure love each other...and want to play together :)

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