Sunday, January 29, 2012

Congenital Heart Defects Awareness Week Coming: An Equation

I have to admit that I love math. I love numbers and how each problem has a nice, tidy answer. I don't think I could correctly recall the quadratic equation, but there is another equation that I will never forget:

God >

There is nothing you could put in the right-hand side of that equation to make it false. Nothing.

Not the diagnosis of a missing ventricle


 not open-heart surgery


not even the future unknown.

That equation has brought our family much peace as we've journeyed through the world of heart defects with our little boy. It's a big world. Nearly one in 100 babies is affected. And it's a scary world. Heart defects are the leading cause of birth-defect related deaths.

In my tiny corner of cyberspace, I want to shout from the rooftops that heart defects are a big deal. There isn't a day that goes by that I don't think about my son's heart or the families that have lost their children to a heart defect. Hopefully as more people become aware of the prevalence of congenital heart disease, the more funding that is allocated to research and technology in this field. Many of us heart moms can truly say that without funding, research and the passion to fix these hearts, our children wouldn't be here today.

So I love math and I'm starting to fall a little bit in love with Pinterest. A fellow heart mom has started a board to help promote awareness of and advocacy for these amazing kids (and adults!) born with a congenital heart defect. Pinterest is a virtual bulletin board, a place to pin ideas, stories or images which can be viewed and clicked on. Heart mom Ruth has created a board in honor of CHD awareness called, "The Faces of CHD - Congenital Heart Awareness Week Feb 7-12, 2012". This board is devoted to telling the stories of families affected by the #1 birth defect.

Luke's story is just one of millions, but it's ours and it's unique. Just like his heart.

If you get a chance, click over to Pinterest to see the amazing stories of some amazing kids. And if you ever feel led to make a donation to help this cause, here are some great options:
We love you, Luke, and are so proud to watch you walk this road with spunk. We will always be walking with you.


Tuesday, January 24, 2012

The eighth month

Laney just finished up her eighth month of life. In every way imaginable, it was different from Luke's eighth month.

Luke's eighth month was almost entirely spent at Children's hospital, recovering from the bi-directional Glenn, his second open-heart surgery. It also included an unexpected trip back to the O.R. for a diaphragm surgery. I try not to spend too much time dwelling on how different my children's babyhood has been, but this month the comparison was hard to stop. When Laney was touching her toes in sand for the first time, Luke was hooked to a ventilator, pacemaker, catheter, arterial line and a myriad of other wires. When Laney experimented with baby food and big-people food, we were counting how many cc's Luke was taking by bottle, fearful of weight loss. Laney, in her eighth month, was on two rounds of antibiotics for ear infections. Luke, in his eighth month, was weaning down from 12 medications to six. Laney learned how to sit up and scoot backwards. Luke was on restriction from tummy time and being picked up from under his armpits while his chest incision healed.

That paragraph is sad when I reread it. It makes me wonder how early childhood experiences shape a person. It makes me grieve once again for the pain Luke has had to endure and will have to again. When we were in Maui, I asked Rog if he remembered Luke as a baby being as happy and smiley as his sister. "I don't, but he also had a whole lot to be ticked off about."

It's true, he did. But the beauty of children is that perseverance comes naturally to them. They don't spend their time comparing their situation to another's or accumulating bitterness and anxiety. "Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven."


I look at this picture of Luke at 7 1/2 months ...









and this one of Laney at the same age...

...and am so powerfully reminded that no matter our situation — feeling the sand between our toes or lying in a hospital bed — we are asked to trust. With faith like a child, joy will abound.


On a lighter note, I did want to record more of Laney's exciting 8th month! This girl is getting so darn fun. She uses whatever is big enough to cover her face and play peek-a-boo, getting the biggest kick out of herself. She is babbling up a storm and she cracks us up with her "hiiii". Although she can't know what it means, she sure says it at appropriate times. This is her other party trick, the "bulldog":


video

When I took her in to have her ears looked at a week or so ago, she weighed almost 18 1/2 pounds. Oh, this girl and food. I remember at our six month appointment, Dr. Husarik told us we would have to gauge how quickly she moved through textures. My gauge says this girl is flying through textures. Pureed food? Yeah, okay, if it's my only option. But I much prefer table food! She "chews" and swallows like such a big girl. I gave her a sliced, toasted bagel the other day with cream cheese and she LOVED it. She ate almost half of the half. She's had sweet potato fries, scrambled eggs, toddler biscuits, graham crackers, puffs, noodles, black beans mashed up and cheese. The only thing I really haven't tried so far is meats. She is far less interested in nursing these days and to get any semblence of a full feed I have to take her in a quiet, dark room. Otherwise she wants to PLAY. I have never seen a kid so desirous to see what's going on. Good luck holding her facing towards you, or even on your hip. She has to be facing out and she will flip herself around so fast I've almost dropped her a couple of times! Maybe it's self-protection, to be always watchful of where her brother is :)


Even though her interest in day nursing is waning, she still wakes up once a night to nurse. I've said this before, but consistency is not Laney's middle name. She'll sleep great (from 7pm-3am, then down again until 7 or 8am) a couple of nights, and then we'll hear her fuss the next night a couple times before midnight, eat maybe at midnight and then sleep all the way until 7 or 8am. Do not bank on her! Although the timing of her naps are consistent, 9:30am and 1:30pm, the length can range anywhere from 45 minutes to 2 1/2 hours for her. Maybe some babies are just wired like this?


She still just has her two bottom teeth and I don't feel any signs of her top teeth coming in.


Her disposition is happy and then more happy apart from two main scenarios: holding her ankles to change her diaper and taking paper/plastic away from her/out of her mouth. Oh yes, she does have some fire like her brother.

She is learning to clap and she'll get her arms high in the air for "Soooo big!" She will copy you if you laugh and shake your head. She loves making things make noise. Any two toys she can get her hands on she'll bang together and then look at you with such astonishment that she made that happen.


Laney, we couldn't love you more if we tried. You delight us, sweet girl.

Monday, January 23, 2012

Kung Fu Fighting!

Luke recently discovered Kung Fu Panda: Legends of Awesomeness, the T.V. show on Nickelodeon. He so likes this show he decided to forgo his original idea of a dinosaur party (you read right, he forewent dinosaurs) and instead have a Kung Fu Panda party for his big fifth birthday.


This would be his first "friend" birthday party and I love who he chose to invite. His best buddy, Marcus, of course, and his best friend from school, Kayser. Those were the only two guests his age. The rest were kids from the neighborhood, ranging from ages six to 14. Nonna Yvonne was there to help with the littlest guest, Laney.

Our first activity was "Kung Fu Freeze". We let the kids pick a Kung Fu Panda character mask:


Then we blasted the song "Kung Fu Fighting" and had the kids freeze in a Kung Fu move when the music paused. Whoever fell was "out":


I wouldn't want to meet these Kung Fu masters in a dark alley!

The kids then teamed up boys versus girls and played hide and seek while we got the pizza cooking.

Before dinner, we opened presents and realized Luke's friends know him well! He got a dinosaur Lego, a dinosaur-land mat with dinosaurs, a dinosaur sandwich cut-out, a remote-control raptor and Hungry, Hungry Hippo (a nice deviation from the dinosaur theme!).


Dinner was devoured and then it was time for Pin the Nose on Po.



Time for cake!



Parents would be arriving soon and the last activity of the afternoon was for the kids to hunt for their own favor. Luke and I decorated chinese take-out boxes for each of the guests, put little surprises in them, and hid them around the house.

I sure hope Luke had as much fun as I did at his party. Once all the kids left was when the fun really started though: Clean up!


Guests: Madison, Emma, Amy, Sonny, Nonny, Kayser, Marcus

Saturday, January 21, 2012

Lava Monsters

I'm pretty sure the Lava Monsters creamed Luke's team, the Force, on Monday night. Actually, I'm very sure. I'm also very sure watching four and five year olds "play" basketball is a humorous and delightful experience.

Luke's first game was on his birthday and my newly-turned five year old made his basketball debut doing this:

cheering his head off ...
this:
giving the fans what they want ... (it's hard to tell, but Luke is giving a thumbs up to his "fans" (grandmas and grandpas))

and this:
scoring his first basket!

If you then would have turned the camera on me, you would have seen a blubbering mess. The tears were not because he made a basket. They were because my son was born five years ago with only one ventricle and we never knew if he would be able to run and play with friends.

I dried my tears and continued to cheer on my son; and my God who has been so faithful.

Friday, January 6, 2012

Oh, sweetie ...


... We really need to do something about that hair.

After Laney's first bath in the hospital, when her towel-dried hair was sticking up like a baby chick's, her hilarious nurse spoke a similar sentiment: "Sweet one, it's your first day and you are already having a bad hair day!"

Reminds me of another bad hair day back in 2009 ...

Monday, January 2, 2012

"Maui" Christmas and a Happy New Year!

I'm going to use the old "too-busy-playing-at-the-beach-to-blog" excuse for the month in between posts! The Smiths spent Christmas in paradise (with my parents and siblings), and except for Laney reverting to newborn sleep patterns and getting an ear infection, paradise it was. I already can't believe we were so recently in 80 degree weather, playing in the pool, going for runs (in shorts!) and drinking Luke's new-found love, POG.

It took Luke two full days to trust that his water wings would truly hold him up. By day three and with the added flotation vest (can you say cautious?), he was jumping in by himself!

Laney LOVED the water. Even with an ear infection, she was the best little traveler.

Seriously the happiest little girl.

Finally! It was so cool to watch him conquer his fear and jump in!

And this is the pre-jump position.

No chance of this kid sinking!

Such a water dog! A couple days into our trip, Luke made a friend named Alex and they had so much fun playing in the pool together. This was nice for mom and dad, too, since Luke could far outlast us in the pool!

Uncle Evan playing with Luke in the pool.

We call this beach "Baby Beach" because the waves break hundreds of feet out from the shore. Perfect for the kids!

Thankfully she's a quick learner and we only had to rinse the sand out of Laney's mouth twice.

The girls! Me, Auntie Jen and Laney.

There was some serious sand castle building happening on this trip. I love the sunglasses perched on his forehead.

Too bright, Mama!

Luke and Daddy working hard.


Some brother love before Christmas dinner, Christmas bingo, the white elephant exchange and Hedbanz.

The Smiths!

Laney opening her new blocks on Christmas morning. My stepmom sewed all 13 of us these Hawaiian-print stockings.

Lukey's stocking! Inside were new dinosaurs, Pez, a sweet Timex boys' watch, and a Lego space set.

There's a big tree right outside our condo that we hooked Laney's jumper onto. Nothing like jumping by the pool!

Look at the teeth she got over Christmas break!

Picking out a pearl for Grandma Janis in Lahaina.

Laney's first Christmas was pretty special.


We returned home late on the 27th and have had a few days to settle back in before school started back up today. Now onto party planning for someone's FIFTH birthday!

Happy New Year to everyone!