Wednesday, February 25, 2009

Playtime

Delightful Finch narrating, Angel (left), Seraph (right)

Sunday, February 22, 2009

And Another Thing....

Seraph and Daddy had a little chat last night.  After that, mommy got a turn (with the camera rolling)!  She was soooo talkitive that I had a hard time leaving for bedtime.

Saturday, February 21, 2009

Floor Time

Seraph enjoys spending more time on the floor now that her reflux isn't as bad.

Wednesday, February 18, 2009

Angel

With her increasing mobility and awareness, Angel is starting to join the kids in games and giggles.  They plop down on the floor with her and vie for her smiles.  She watches them run and wills herself off her tummy.

Soon she'll be racing around with them.  For now, she is still my little baby :)

Midnight Can Be Exciting!

Seraph decided 20 minutes before Midnight (when her calming meds are due) that it'd be the perfect time to rip out her NJ  feeding tube!  So....Sexy Haqon took her on a "daddy-daughter date" to the emergency room.  All the other kids were in bed. I'm supposed to sleep - Hah!

Oh how I miss the days when it was an NG feeding tube.  Then I'd just call her a stinker, let her go without it for a while, and then place it myself when it was time to feed/med her. I think Sexy Haqon secretly rooted for her to pull it out.  He loves seeing her without any tubes.

It's not that fun now that it means an extra trip downtown.....in the snow...

Thanks for taking her, hun.
------------------------------------------
When they got home, Seraph was the happiest I've ever seen her.  She's been letting us touch her a lot more, too.  I think she finally trusts us that we're here family and we're gonna keep her with us instead of letting them keep her at the hospital.

Tuesday, February 17, 2009

The First Tuesday AFter the last Wednesday before I forgot what day it was....

Baby Seraph is having lots of reflux since her feeding tube slipped out last week.  We think it spent some time in her tummy.  It's starting to calm down today - we all slept better last night.  She is happier, too.


Baby Angel wasn't ready to try rice again, so we tried yams.  Yams are yummy, but eating from a spoon can get frustrating!  Luckily big sister, Finch, is handy with a binky.  Thanks, Finch :)

Saturday, February 14, 2009

Happy Valentine's Day :)


......which is also Congenital Heart Defect Awareness day.  

We hope all is well with you and yours - thanks for all the love and support.  *hugs*




Friday, February 13, 2009

Strong Bear's Reality

Mom: Stop!  Baby Seraph is sleeping.  We don't want to wake her up.

Strong Bear: But, I do want to wake her up.  Wake up, Baby Seraph. Wake up!

Mom: Baby Seraph needs to sleep.  She needs to sleep so she can feel better.  Seraph's heart is broken.  Strong Bear's heart isn't broken. Mommy's heart isn't broken.  Daddy's heart isn't broken. Beautiful Rabbit's heart isn't broken.  Angel's heart isn't broken. Strong Bear's heart isn't broken......but Seraph's heart is broken.  She needs to sleep so her heart can get better.

Strong Bear: I heal her. [Then he looked at me like "problem solved".]

---------------------------------------------
What a good big brother!  :)

"Look, Ma, I did it!!"

Seraph pulled out her NJ tube yesterday.  She was terribly proud of herself.  She had the biggest smile that would fit on her face.  She giggled and stuck out her tongue and cooed.  Her oxygen stats went way up. She was convinced she'd fixed the problem.

She wasn't quite as happy at the hospital when they were placing it again.  She did enjoy the car ride.  (Much more than I did.)

Wednesday, February 11, 2009

Angel Loves Real Food


...but she got a mild rash, so we're holding off on more rice cereal for a week.  Here she is enjoying her new spoon:


Friday, February 6, 2009

Friday Night


Tonight I'm just hanging out with the twins.  Haqon took the kids to a super cool LAN party where the kids were invited to come play, too!  Brilliant!!  So instead of hearing "hey, you OK with me taking off all night and leaving you all alone with 5 screaming kids?" It was like "hey, you want me to take 3 of the kids to this party so you can have a bit of a break?"

:)
Angel tried to grab my dinner tonight.  So, I gave her a spoon to chomp on.  She liked it more than all her toys.  Doc says she's ready for rice cereal.  I'm just waiting for this cool spoon.  Look for sloppy rice pics next week!

Angel had a rough day.  She's still feeling icky from her immunizations 2 days ago + tooth #2!  

Seraph slept through most of today. (Wish I had!) I think her RSV shot took a bit out of her.  Hopefully she's busy growing those pulmonary veins!!  



I'm listening to itunes radio--classical:piano whisperings.  I LOVE this stream :)  The girls are both asleep.  I think I'll start a nice murder mystery.  Ahhhhhhhhhh :)


Thursday, February 5, 2009

Hey - I Know You!!


Seraph:  a little freaked out by all the grabbing and touching

Angel:  soooo happy. She gave me the "Mom! I was playing with that!!" look when I rescued Seraph.

Wednesday, February 4, 2009

Twin Stats


7 months + 1 week old










-------------------------------
Angel
Height: 26.2" (40th % for her age)
Weight: 16 lbs  11 oz (40th % for her age)
head:  17.2" (65th % for her age)

Teeth: 1 (yay!)
Drool: endless
Smiles: also endless
Rolls: back to tummy. Why roll on my back, that just gets me stuck?

Favorite activities:
watching Seraph or my other siblings, eating, sitting up until I lean too far, grabbing my toes or toys, chomping on everything, feeling textures with my fingers, getting people to hold me, smiling, warm baths.....reading books with Beautiful Rabbit, chatting with Strong Bear, Sitting on Daddy's lap to play computer games, watching things that move...

favorite sound to make:



Soon I'll be eating rice cereal! My mommy predicts I'll be crawling (possibly army-crawling) in 3 weeks!

--------------------------------------------------------
Seraph
Height: 24.5" (3rd % for her age)
Weight: 14 lbs  2 oz (3rd % for her age)
head:  15.6" 


Part of me feels like I'm just getting to know her.  Part of me feels like I've known her forever.

She knows that I love her and to help her.  She watches me as I walk around getting stuff.  She likes smiles and attention and...white noise..and jungle sounds, cartoons.  She communicates her likes and dislikes very clearly.

Each day she seems to reach out a little bit more.  Yesterday she forgot to be wary as I kissed her hands and toes.  Today she smiled while I kissed her instead of after.  She's been through so much.  I just want her to feel happy...and safe.  not true.  I want a LOT of things...but the happy thing is big on the list ;)


Tuesday, February 3, 2009

About Palliative Care...

I'm sorry, I've been using "palliative care" and "hospice care" interchangably.  I was confused.  Hospice care is one possible type of palliative care--the one that most people are familiar with. Contrary to what I've been telling everyone,  Seraph is NOT on hospice care.


Seraph is home on palliative care.
"Palliative care (pronounced pal-lee-uh-tiv) specializes in the relief of the pain, symptoms and stress of serious illness.The goal is to prevent and ease suffering and to offer patients and their families the best possible quality of life. It is useful at any stage of an illness. And it can be provided at the same time as treatment that is meant to cure you." - getpalliativecare.org

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