Sunday, November 28, 2010


It's always nice spending time with your sister. My sister came to visit for the holidays and I got to see her quite a bit - more so than usual.

We explained to Emmy that mommy and Aunt Stephie are sisters, just like she and Zoe are sisters. I'm pretty sure she wasn't following...

Regardless, we took some cute pictures of the sisters hangin' out.

(Zoe and Emmy)

(Stephanie and Stacey)

We captured a video of Emmy making her sister laugh too; thank goodness for the quickness of the phone camcorder. Unfortunately, no video of Stephanie making Stacey laugh. Maybe next year. Sorry about the sideways view, still need to master the Droid camcorder.

Tuesday, November 23, 2010

A Year of Thanks

This Thanksgiving, I am beyond grateful. I have a new life.

A year ago, I had no idea my life was about to come to a screeching halt.

A year ago, I had no idea that my unborn daughter, 18 weeks gestation, had only half a functioning heart.

A year ago, my life was happy and carefree.

A fellow heart mom and I had a chat the other night. We talked about how our lives have dramatically changed over the past year. About the ups and downs. About the sudden loss of her daughter who battled HLHS. About the wonderful new friends we've met on this journey. We talked about our children. We talked about the pros and the cons of this new life, and all that it entails.

The most important detail we discussed was the fact that we like our new selves better than our old selves. Our old selves being the pre-heart mommy days. It is hard to imagine that such trauma could bring us to this new place in our lives. Through all of the heartache and pain, of watching our children undergo radical medical treatment and recovery, and in her case, the death of her only daughter, we are better people - better moms, better wives, better friends.

I wonder if there is a pathway to get to this new self, without having to suffer so deeply?

I wouldn't give it back, none of it.

This Thanksgiving, just two weeks shy of the day we learned, a year ago, about Zoe's imperfect heart, I am grateful. I am Thankful - for my new life, my family, my friends, and for those that made it possible for my incredible daughter, Zoe Madison, to mold me into a new person.

Happy Thanksgiving to all of our family and friends, both old and new. We extend our warmest regards and thank you for your ongoing support and love.

(Our family, one year ago. With a fourth addition on the way...)

Saturday, November 20, 2010

Same or Different?

The Lihn girls have thus far proven to be quite different.

Zoe was born with lots of hair. Emerson was bald.

Zoe is always smiling. Emerson rarely smiled.

Zoe began teething at 4 months. Emerson got her first tooth at 1 year.

Zoe is in the 20th percentile for weight. Emerson never made the growth chart. And still hasn't.

Zoe has dark hair. Emerson's hair is blond.

Zoe can't stand a dirty diaper. Emerson does't mind so much.

So here they are, my two girls. Even though they are different in many ways, I love them just the same.

(Emmy at 4 months old.)

(Zoe at 5 months old.)

As a side note, much to Daddy's dismay, both of the Lihn girls seem to have inherited Mommy's patience (or lack thereof.)

Wednesday, November 17, 2010

A Week Already?

It's been a week since my last update. Time sure does fly.

Zoe is great.

She turned 6 months old on November 11th and is now 2 months post-op. Now that we are past the 8 week mark, we can now pick her up under her arms, like a 'normal' baby. We've finally forced her into tummy time as well. She's making good progress.

(Tummy Time on Monday)

(Tummy Time on Tuesday)

I have two little girls at home who are so much fun. Emerson is realizing that Zoe is here to stay. Some days (or minutes) she likes that fact, some days (or minutes) she does not. I wonder if we could've done something different so she would love her sister 100% of the time. Instead of being a heart mom at that point, thinking everything has to do with Zoe, and her heart, I resorted to the good ole "What to Expect: The Toddler Years." And, guess what? She's normal - totally normal. Emerson is a 2 and 1/2 year old with a new baby sister. Sure, her reactions may be magnified a bit, given the past several months, but I did not do anything wrong. As a parent, we do the best we can. A wise woman once told me (ok, more than once) that: "as a mother, you don't have to be perfect, you just have to be good enough."

Thank God, because as a mom, I am far from perfect. But I am good enough; perhaps a bit better than good enough.

This last week, we were thrown for a loop when we were told that another member of our family was diagnosed with a CHD - an adult who never realized this fact before. Me, hearing of a CHD in the family, obviously panicked. I began doing research and located several studies indicating genetic linkage to BAV (the diagnosis) and HLHS. Zoe's cardiologist, of course, received a text (seemingly calm to me, but I'm sure he sensed my anxiety) and called me within the hour. I explained to him my fears of Emerson having a missed CHD.

After Zoe was diagnosed in utero, December 9, 2009, a day I will never forget, we scheduled Emmy for a complete cardiac workup. She was given the thumbs up. With the knowledge of yet another CHD in the family, I wanted Zoe's cardiologist's eyes on the echo. He agreed to do so, knowing there can be recurrent CHDs in siblings. He also told me that he is going to throw my computer away. I research too much; but that is who I am. He knows that. Bottom line, we received good news. He reviewed Emerson's echo and stated that her echo looked ok (she was irritable when the pictures were taken) but her aortic valves looked normal.

Thank God.

And, more good news this past week: Zoe's little heart buddy, Will, arrived late last week. He is stable and scheduled to undergo his Norwood procedure tomorrow morning. Please say a prayer, send positive energy and love and light to Will and his parents, Chris and Meg. They will need extra strength as they fight alongside their son over the next several weeks.

Overall, my world is bright, even though I have pain in my heart that will never ease. My heart is often heavy, but more full that it has ever been. With the holidays approaching, I've been more emotional.

This Thanksgiving, I am so grateful and thankful for all that I have.

Who wouldn't be, given these darling faces I have to look at each and every day?

(Zoe having a good laugh on the couch.)

(Emmy doing her best Dax Shepard impression.)

(Zoe preparing to eat, real food.)

(Emmy passed out during a play date with Papa.)

Oh, and check out some of Zoe's supporters sporting their CHD Awareness tees at Disneyland. Way to represent, Vehons!

As always, thank you all for your continued love and support.

Thursday, November 11, 2010

Big Girls Don't Cry

Ok, well, maybe they do when they get shots. Our sweet miracle girl is 6 months old today! Meaning, she got a flu shot for her birthday. And yesterday, she received her first Synagis shot.

Today, Zoe spent her half-birthday with her Daddy and Papa.

Daddy took Zoe to the pediatrician while Mommy went to work. Zoe weighed in at 14 pounds. She is in the 20th percentile for weight, 25th percentile for height and 25th percentile for head circumference. Wow, that is quite a feat for a heart baby. Zoe's pediatrician said she is "doing GREAT!" There, I said it, ZOE IS DOING GREAT!

We have high hopes that we can take all of 2011 off from hospitals, like Zoe's cardiologist suggested last week.

On Tuesday, Caleb, Emerson, Zoe and myself joined the real world and posed for family photos at Boojum Tree Gardens. We cannot wait to see the proofs and share the final product with all of you. If you're ever in need of a photographer (who travels around the world, no joke) I highly recommend Blue Lily Photography.

Thanks for all of the birthday wishes to Zoe on my Facebook page today. We're so very proud of our heart warrior and couldn't be more blessed to have her in our lives.


Sunday, November 7, 2010


This morning, we woke early and headed out for the Inaugural Congenital Heart Walk in Tempe, Arizona. I was truly touched by all of the supporters that came out in their Team Zoe shirts. We felt so loved. Tears crept in more than once, just seeing all of the support and feeling the love for our family. It is truly amazing how many lives one tiny heart can touch.

We managed to get a TEAM ZOE photo before the race. Thanks, Brent!

Then, I ran around like a crazy heart mom, taking photos and chatting with Zoe's fans.

Aside from walking for Zoe, I also wanted to walk in memory of several CHD warriors whose lives have touched mine. Some of whom I never met, but have grown to love through their mommas. Today, we walked for your fighters who were taken from us too soon.

The weather was perfect this morning. We had a wonderful time and met some local heart families and their warriors. For those of you who weren't able to join us this morning, these pictures are for you.

(These cuties made their own Team Zoe shirts!)

(Loved this!)

(Some team members ran the 5k)

(My dad and his man-crush, Aaron Boone, Adult CHDer and former MLB player.)

(Team Zoe's t-shirt design team. Thanks Joel!)

Team Zoe represented well and we were given awards for our efforts.

Thank you, all of you, who made today a very special day for the Lihn Family.

When we arrived home, Zoe was smiling, as always...

Friday, November 5, 2010

Another Saints Fan?!

Good Lord, Zoe has some converting to do.

Soon, very soon, our HLHS family will grow, once again. A new addition will be joining us on or about November 11, 2010.

A new warrior to welcome.

A baby boy named Will.

I have come to know Will's parents, Chris and Meghan, very well over the past few months. Our personalities are very similar. We joke around a lot, but when it comes crunch time, we set aside our humor. I'll never forget a text I received from Chris after Zoe was admitted to Phoenix Children's Hospital just a week or so prior to her scheduled Glenn. The new, soon-to-be heart dad, was already "in" our world. He wrote, "I can't believe how much I think about people whom I've never met before."

It is true. We think of each other often, and rarely do we get to meet those across the country who lend us support on a daily basis.

Please keep Chris, Meg and Will in your hearts and minds over the next week; then over the next month as Will undergoes and recovers from his Norwood.

As you can see, Will is destined to be a Saints fan, like Curtis.

Don't worry boys, as soon as Zoe is old enough to talk, she'll convert you. She's pretty persuasive it seems. She's already picked out Will's bedding for his toddler bed.

Wednesday, November 3, 2010

Good Heart (and lungs)

Wow, I never knew going to the cardiologist with Zoe would be tantamount to running a marathon! Zoe did not want anything to do with tests today. EKG, ECHO, pulse ox, you name it, she was not a fan. She smiled at Dr. Stock and let him listen to her heart but everyone else in the office (nurse, echo tech) was an enemy.

Dr. Stock checked Zoe out prior to her ECHO and gave her two thumbs up. During her exam, while listening to her heart, he said, "Wow, she sounds awesome." God, I love hearing that! Zoe's oxygen saturations were 90, blood pressure and EKG good. Zoe weighed in at 6.14 kg or 13.5 pounds; great weight gain.

Then came the ECHO...

Zoe threw a complete fit from the moment I set her on the hospital bed. She screamed and wanted no one touching her chest. We tried everything: Baby Einstien DVD, flashing lights, Baby Orajel, a bottle and binki. I tried singing ABBA's Dancing Queen, which is Zoe's new favorite song, but even that only pacified her for a few moments. Dr. Stock walked into the ultrasound room, half expecting to see her being tortured. Needless to say, Zoe's complete ECHO turned into a limited ECHO. Not what mommy hoped for, but Dr. Stock saw enough ECHO clips that he reported good heart function.

The plan is to keep her off of the Digoxin and Dr. Stock will see her in 6 weeks. At that time, he'd like to perform another ECHO - with a calm Zoe this time.

When we left the appointment, I was slightly disappointed that Zoe did not cooperate. I was hoping for a complete ECHO with no hanging chads. Caleb reassured me that Dr. Stock was pleased with Zoe's function and clinically, she is great.

Caleb wants to relay that he gave today's cardiology visit an A-, whereas mommy gave it a B. Either way, we both agree that today's visit was rewarding (and exhausting.)

Tuesday, November 2, 2010

Halloween Pictures...Finally

Caleb and I took the girls over to my parents' house for some Halloween photos. As you can see, Emmy and Zoe weren't too interested.

(Zoe the Bumblebee)

(Emmy as Brobee)

(The girls' first Halloween)

(Happy Lihn Family, this picture pretty much sums up the photo session)

Trick-or-treating went a little smoother. Emerson practiced knocking on doors, saying trick-or-treat and thank you before leaving the house. When it came game time, however, she was all mute.

She made it down the street, and back, then squatted down and began frantically trying to unwrap a tootsie pop. We came home and Emmy checked out the goods.

We let her go crazy. She soon was double-fisting her candy.

She was nice enough to share with her little sister, at least.

Emmy must have enjoyed herself, she's already talking about picking out her costume for next year.

On deck for this week:

Cardiology Appointment

Zoe's cardiology appointment is tomorrow. She will have a full work-up and we'll see how her heart is functioning off of her heart med, Digoxin. Positive energy and prayers, please, for a normal-functioning heart!


My sister and brother-in-law are coming into town on Thursday, bringing with them some of Zoe's biggest supporters from San Francisco for the big event on Sunday.

Heart Walk

This Sunday is Phoenix's Inaugural Congenital Heart Walk in Tempe, Arizona. Team Zoe is 45 members strong! Unfortunately, Zoe will not be in attendence as she is still awaiting some very important vaccinations. We can't wait to post pictures from the walk and share this special day with all of you, Zoe's supporters near and far.