Merry Christmas

To all our friends and family we want to wish you a very Merry Christmas. Chloe's enjoying a nice little siesta while we take a break from present opening (Santa first, then family stuff later - these blended families are complicated). :) Hope everyone is enjoying the holiday season and getting time with special loved ones. Very merry. . .

For all the heart moms, this hits the nail on the head!

You passed me in the shopping mall...(You read my faded tee)
You tapped me on the shoulder...Then asked...`"What's a CHD?"
I could quote terminology...... There's stats that I could give...
But I would rather share with you...A mother's perspective.
What is it like to have a child with a CHD?
It's Lasix,aspirin,Captopril....
It's wondering...Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held her...(I'd waited so long)
It's knowing that I need...to help her grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking her sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths,x-rays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do her nails look blue?
It's cringing inside... at what she's been through.
It's dozens of call to her pediatrician...
(She knows me by name...I'm a mom on a mission)
It's winter's homebound...and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching her sleeping...her breathing is steady...
It's surgery day...and I'll never be ready.
It's handing her over...( I'm still not prepared...)
It's knowing that her heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that she'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected...
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching her chasing...a small butterfly...
It's the moment I realized...I've stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.
And no...we'll never be the same...It's changed our family...
This is what we face each day...This is...a CHD

Thanks to Samantha Lloyd for sharing this!

So Lucky

A good friend of mine is fostering a sweet little girl who is eight months old and I was having one of those moments as she crawled circles around my 16-month-old Chloe. She easily pulls up to stand and gets around with such ease. I was looking at the little girl with a pang in my heart for Chloe, who struggles to stand and although gets around quite well, doesn't have the ease that typical children do. With some hestitation, I mentioned my feelings to my friend. "Chloe's the lucky one" she said. "She gets to be with her family who loves her very much and cares for her". So true. Chloe IS the lucky one. She may have troubles but she DOES have a family that loves her so very much and IS there with her every day. She has a family that would die for her and no one is here telling us we can't be together. I am so thankful to my friend for putting it back into perspective for me. I hope I will not waste another moment feeling sorry for Ms. Chloe, as she is amazing just the way she is and together our family is complete!

Choo Choo - Train Pics!

All hooked up to her feed and cozy in her seat on the train! All ready to go!


Xander with his new IPod Nano.


Me, Chloe and Xander, all so happy we're on the train and not in the car!

Me and mom (AKA "Nana")

Chloe getting some "crawling time" on the seat.

Xander passed out on our luggage listening to his IPod!

Uncle Phil and Brooke meeting us for dinner in the train station!

Great Nana and Chloe share a very special moment.

The whole gang (with Xander behind the camera) at the Smithsonian National Museum of Natural History.

Sick again. (but still darn cute)

Daddy and Sadie comfy on the train home.

Chloe fast asleep. She slept about 3 hours on the way home. Woohoo! :)

So Far So Good

So Chloe has pink eye and a bad cold, but we THINK her ear infection has cleared. Hard for the doc to know for sure since he couldn't actually see her ear drums. He said to keep an eye on her and if she starts showing signs of being uncomfortable or sicker then we'll go to the ENT to have him take a look. She slept from 7:30pm til 10am, albiet restlessly, so I'd say she's definitely fighting something, but she's been a happy little girl all day, playing with no nap. So I'm not worried. Just another annoying cold I think.

Sick Again

Argh! She's sick again! We were up off and on all night with her tossing and turning and occasionally crying. NOT like her at all - she's a GREAT sleeper. We gave her Motrin at around 1 and at some point last night she started running a fever again. I was anticipating a bad trip on the train today, but then she after some Tylenol on top of the Motrin, she perked up. We've been up since some time after 5, but she's been happy since about 6:20am. Hopefully she'll be able to sleep on the train. It's a 5 1/2 hour ride so I'm hoping for the best. The trip down was amazing, so I'm hoping for a repeat, but I'm cautiously optimistic. Wish us luck! ;)

Down in VA

Well, here we are down in VA for the weekend. It was a successful train ride down. We got GREAT seats at the end of the train with plenty of room for Chloe's stroller and for me to maneuver around for her tube feeding. (thank goodness for that!) She slept for a bit, but spent most of the time awake wanting to crawl around on the floor. We kept her up on the seat and gave her a small little area on the seat to play around on. All 3 kids did great though and I got some cute pictures that I can't wait to share.

Xander was adorable today driving around DC seeing the sights. "This is the best vacation of my life!" he exclaimed at one point. And after driving through the snowy streets of DC we spent some time in the Smithsonian National Museum of Natural History. Xander was totally in his glory today. My 92 year old Nana joined us, so it was a very special day for us. I got a cute picture of her holding Chloe's hand this morning. Like I said, I've got some great pics to post when I get home.

It's hard to travel with a kiddo with a g-tube. I forget about the demands of her schedule and routine when we're not at home. It's so hard to be out and about and get her feeds in. But we're doing the best we can and we'll be heading back on the train tomorrow so it's only a few days of discombobulation. I don't know how my friends with more complicated situations do it! I'm always impressed by them (you know who you are - wink wink). :)

We're thinking of dear Sweet Ella Grace and her family as they wait for test results. Say a prayer for them.