Sunday, December 28, 2008

Holiday Update

Well, the holidays are pretty much over for our family. We all were blessed with our health, our happiness, our family, our friends, and many gifts. Grace and Meghan were filled with the magic of the season. Both were very happy to sing along to Christmas music and very much enjoyed trimming the tree. They also enjoyed making or selecting gifts for their loved ones, which also included our family cat, Winnie. She very much enjoyed rolling in her catnip and playing with her sparkle balls.

Both of the girls received brand new Our Generation dolls, and those were a bit hit. They enjoy playing dolls, and making Mom or Dad put the doll clothes on or off. Gracie got her best wish and received a gigantic Fur Real Kitty. It is well loved already, and then Uncle Matt and Sarah gave her a twin version. She is in heaven as both the cats enjoy playing together. haha Meghan greatly enjoys her Swim to Me Puppy along with her Moon Sand too.

This mama thinks we need to go through our older toys and select some for children who need them more than our over indulged beauties! ;)

Finally, Grace gave us a bit of a scare yesterday. She bounced off my in-laws couch and hit her right cheek bone on the corner of the coffee table. She has a huge bruise, and hopefully, it will be less visible by the time she returns to school next week.

Oh and big sister, Kesa, is here. Hooray! The girls are literally beaming with love and excitement to have her with us. I think that is certainly their best Christmas gift of the season. I hope all of you had a wonderful holiday season.

Face Time

Holiday Fun

Friday, December 26, 2008

Television Show Featuring Alpha-1 Antitrypsin Deficiency

Healthy Body, Healthy Mind (HBHM) takes a look at Alpha-1 Antitrypsin Deficiency and helps viewers to understand Alpha-1. The show is currently running on the Public Television Network, so contact your local Public TV Station, the TV Guide or visit the Healthy Body, Healthy Mind website for listings.

The Alpha-1 Foundation web site is currently hosting the TV show here:

It is also available here:

Sunday, December 21, 2008

Happy 1st Birthday Hailey

One year ago today, your mama, Tante, delivered you 12 weeks early. Your angel sister, Marol Carol, followed one short minute later. With the joy of your arrival, came the sadness of the loss of Mary Carol. Twin-to-twin Transfusion Syndrome endangered both of your precious lives, but an angel here on Earth named Dr. De Lia helped save your life with his pioneering surgical technique. Your mommy was the true hero in bringing you into the world with her bedrest and protein drinks.

We are blessed with your presence, and today we celebrate the first year of your life. You've already dealt with so much, and I hope you have smooth sailing from here on out.

Lots of hugs and kisses,
Godmama Jen

Saturday, December 20, 2008

A Christmas Carol by Gracie...

O ninety-five! The stars are brightly shining,
It is the nine of the dear Saviour's birth.
Long lay the world in sin and error pining.
Till He appeared and the soul felt its worth.
A thrill of hope the weary world rejoices,
For yonder breaks a new and glorious morn.
Fall on your knees! Oh, hear the angel voices!
O ninety-five, the nine when Christ was born;
O nine, O Holy nine, O ninety-five!
O nine, O Holy nine, O ninety-five!

Sunday, December 14, 2008

Oh Boy...

There's a boyfriend in Kesa's life now.

Wasn't I just recounting how Grace had startled me by saying that Joseph is her boy friend? haha

Guess we've just entered new territory.

Yay Kesa! ;)

Once Upon a Time...

Once upon a time
Their chests squeezed with all their might
To inhale life

Once upon a time
Their livers erratically managed
To maintain their lives

Once upon a time
Their bodies seemed amazingly and wrongly
Too small

Once upon a time
Their mommy cursed her body and its inability
To sustain their lives

Once upon a time
Their tiny toothpick sized fingers wrapped
Themselves around my gigantic pointer finger

Once upon a time
Her eyes could not yet open
To see the world around her

Once upon a time
Her skin and eyes glowed so pumpkin orange
That she needed phototherapy

Once upon a time
Her heart rate flatlined and a team of doctors and nurses
Rushed to save her life

Once upon a time
A central line required her first hair cut
To save her life

Once upon a time
A generous blood donor donated O negative blood
To tranfuse the life back into her body three times

Once upon a time
Monitors measured breaths, heart rates, and temperatures
To alert their nurses of their vitals

Once upon a time
We spent long hours bedside at their incubators
To never miss set backs or much desired progress

Once upon a time
Praying for progress and hoping for miracles
Was a minute-by-minute ritual

Once upon a time
We experienced jealousy at what should have been
Even though it felt wrong to have that emotion

Once upon a time
Precious babies around our girls
Earned angels wings

Once upon a time
We thanked God for each new CC added
That didn't result in a residual or stopping feeding

Once upon a time
We praised the miracle of modern science
As apnea monitors blared in the dark of night

Once upon a time
We had daily homework of OT, PT, and speech therapy
To make sure their bodies worked right

Once upon a time
We were forced to become members of a NICU club we did not want
To join

But with time and acceptance
We've learned that our former preemies
Are miracles who still need our special protection and love

And a NICU reunion reminds us that we are
Life time members of that NICU club who will always know
That former preemies will always be preemies inside and out and do not just catch up

Friday, December 12, 2008

Did She Really Just Say That?

Tonight, I watched the final episode of Boston Legal online. As the show was wrapping up, two of the characters kissed one another in a pretty benign way.

Grace saddled up next to me, and said, "Mommy, who are those people?"

"They are characters on this pretend show."

"Why are they kissing?"

"Well, they are boyfriend and girlfriend, and that is why they are kissing."

As I returned to paying attention to the dialogue, Grace added plainly, "Joseph is my boyfriend."

(Insert sound of Jen's brain registering the fact that her first grade daughter just announced that she has a boyfriend.)

I stuttered a response. "You have a boyfriend, Gracie?"

Her blue eyes met mine, and she added flatly, "Uh huh. He is a boy, and he is my friend."

(Insert sound of Jen's relief at Grace's continued naiveness.)

"Sophie and Lavette think it is funny that I have a boy friend. They giggle when I play with him. We made a snow fort on the playground, and we like to pretend we are animals. I love, love, love to be the kitty. I love kitties."

"It is fun to have boy friends, isn't it Gracie?"

"Yes, Joseph is really fun and nice."

"When I was in first grade, I liked to play with boys too."

(Insert Jen's memory of chasing an 8th grade boy all over the playground because I "liked" him and wanted to marry him.)

(Now wrap this up to insert Jen's continued relief that her little girl is still a little girl at least for now...)

Tuesday, December 09, 2008

The Count Down Begins...

The stockings were hung on the railing with care

In hopes that Saint Nikolas soon would be here

The morning arrived and they crept down the stairs

To find stockings of red, green, and white there

Filled with special trinkets and sweet treats if they dared

Their eyes were still sleepy along with wild heads of hair

But they danced and they pranced on what seemed like air

At the contents Saint Nikolas left on the stairs