Jinx

It's almost the New Year.

I've always been a bit superstitious. It makes me uncomfortable to say that 2011 will be a year sans surgery or hospitals. I don't want to jinx ourselves.

Dr. Stock told us we could take 2011 off and just enjoy. So, that is the plan. No hospitals, no surgeries, just 'normalcy.'

To end the year, Caleb and I are (for the first time) leaving Zoe overnight with Grandma and Grandpa. We are taking Emerson to the polar express up north. Our trip is still 2 days away, but I'm already growing anxious at leaving Zoe. She will be fine, I know. And yet.

The holiday required some tweaking this year, as Zoe is on lockdown for flu/rsv season. We took her to my parent's house Christmas morning and Caleb stayed home with her in the afternoon while I took Emmy to her great-grandparent's house for our traditional holiday festivities. The girls are extremely fortunate to have their great-grandparents around.

(Great-grandma and grandpa Muenich)

(Great-grandma Olney)

The girls were absolutely adorable in their holiday dresses. Granted, Zoe didn't get to show hers off, but I couldn't let her sit around in her Christmas pjs all day.

Speaking of sitting... Zoe is becoming a champ. The day after Christmas, Zoe displayed her skills for her Aunt Stephie and Uncle Paul - sitting up for nearly 15 minutes unassisted. This is very big news, as we were anticipating some developmental delays due to all of her time lying in a hospital crib.

Zoe seems to be one-step ahead of her older sister. First, with sitting and now with teething. For Christmas, Zoe got her bottom two teeth. Emmy waited until her first birthday to cut hers. At this rate, Zoe will be running circles around Emmy in no time.

Thank you for sharing in our 2010. It's been quite an eventful year. We look forward to keeping ya'll apprised of Zoe's accomplishments in 2011.

Jinx or no jinx, Happy New Year! (as I knock on wood...)

Merry Christmas

Best.Christmas.Ever.

Angels Among Us

I never gave Angels much thought before May of this year. But this holiday season, I have Angels on my mind nearly 24/7. I want to believe they are here with us, keeping watch over us; letting their loved ones feel their presence during these difficult weeks.

The first angel I truly "felt" was that of a precious baby, Gwenyth. I met Gwenyth's mom before traveling to Philadelphia. She, like I, delivered her baby at CHOP. She, like I, feared for her unborn child's life. She, like I, had so much hope for the future. She, like I, never believed "it" could happen to one of our own. Two days after Zoe was born, I learned of Gwenyth's passing. I will never forget that moment - the moment when the reality of my life slapped me in the face.

Of the four women I met and fell in love with at CHOP, two have lost their babies. I cannot fathom what the holidays hold for them this year.

My Christmas tree this year, and for all the years to come, will be adorned with their angels - Gwenyth, Mia and Emma.




These three precious children, along with my Zoe, are a constant reminder that each day is a gift. Each day I am given with Zoe is my Christmas, the very best gift of all.

Much love to Laura, Jenn, Christina and the countless others whose hearts are broken this holiday without their babies. Oh, how I wish life could be different.

Please take a moment to remember these angels among us and their families during this holiday season.

Massages and Make-up

Those of you who see my Facebook status regularly know that Emerson learned about massages yesterday. She witnessed me massaging my own back. She asked "what's wrong, mum?" I told her that my back hurt and that I "needed a massage." A few minutes later, she was rubbing her back, saying "we need massages, my back hurts."

Well that was yesterday...

Today, I went into work. After getting myself ready, I gave Zoe her meds, made breakfast for Emerson and pulled my pumping parts together for a day at the office. I should've known Emerson was up to no good after several minutes of silence. I'd left her in my bathroom and told her I was going to make her a bagel.

A few minutes later, after far too much down time, I summoned her to the kitchen.

Emmy came trotting down the hallway, head held high.

"Honey, what is on your face?"

"Make-up, mum! Make-up!"



Upon closer look, it appears Emmy mistook mascara for lipgloss.

Great, massages and make-up. I've created a monster!

Show-off

That's my girl!

Zoe had a cardiology appointment today. Not just any cardiology appointment, but the full-spectrum, 2 and a half hour cardiology appointment. First, while in the waiting room, I filled out the routine paperwork about how she's been since our last visit. Next, we are escorted back to "Room 4" and Zoe gets stripped down. Today, her blood pressure was taken first (good results) and sats checked (93%) followed by an EKG (completely normal.) Zoe was measured and weighed (26 inches and 14 lbs 13 ounces or 6.72 kg for you heart moms.)

Then, the dreaded echocardiogram. This time, we came prepared. Bottle, check. Stuffed bunny teether, check. Light up spinning ball wand, check. Given the horrific screaming fit Zoe displayed 6 weeks ago, the tech asked that I hold Zoe cradled in my arms while she performed the echo. She fussed at first, but we got through utilizing all three of our props. After the echo, we returned to "Room 4," only to be summoned back because "Dr. Stock wants another picture." I looked at Caleb and said, "Oh great, that can't be a good thing."

Turns out, the tech needed a better picture of the descending aorta, since Zoe's had issues with it being slightly narrowed. Dr. Stock walked into the echo room to observe. Zoe was irritated that she was back in the dimly lit room and threw a small fit. With a series of finger snaps and a little ditty of "just a little distraction" by Dr. Stock, Zoe pepped up. Knowing my personality, Dr. Stock, before we left the echo room said, "her function looks better!" We walked back to "Room 4" and on the way, Dr. Stock looked at her vitals for the day. "93!?, Really?" I said, "yep, she's consistently 92 at home." His response, "She's our little rockstar!"

We sat and discussed Zoe's echo which showed very good function. So good, in fact, that he was contemplating taking her off Enalapril (her heart medication) and leaving her with just aspirin. After a short discussion, we decided to not mess with what seems to be working. With HLHS kids these days, the art of medicine still has much to be perfected. Cardiologists are figuring out the best treatment and medication as medicine evolves with Zoe's condition. All in all, Dr. Stock was very pleased with how she looked both clinically and radiographically. She's still on the growth chart which is a feat in and of itself - a little over 10%.

I then asked the big question, prefaced by, "ok, I know I am jumping like 10 steps ahead here..." and was interrupted with, "you're not going to ask about her next surgery, are you?" Geez, he knows me so well! CHOP doctors, with textbook hypoplasts, generally perform the Fontan around 18-24 months of age. Luckily, Dr. Spray and many of the CHOP physicians and nurses will be in Scottsdale, Arizona in February to present at the annual update for pediatric cardiology and CHDs. Dr. Stock will talk to them about CHOP's ideal time frame for the Fontan.

At the end of Zoe's appointment, the four of us were all smiles (Me, Caleb, Dr. Stock and Zoe.) We won't be seeing Dr. Stock again until February 11th.

After arriving home, Zoe continued to show off and scarfed an entire jar of pears. She usually takes 1/2 a jar...if we're lucky.

Today was a great day, full of good news and positive energy. It always amazes me how after a cardiology appointment, I realize how much stress and anxiety I have leading up to and during the appointment. On the way home, I felt like I could breathe easier, literally. I allowed myself some happy tears and told my show-off how very proud of her I am. She was sound asleep, but I still told her.

365 Days Ago

December 9th is our anniversary - the anniversary of the day we learned of Zoe's congenital heart defect. How ignorant was I, just 365 days ago?

Caleb and I walked into the Fetal Women's Center in Scottsdale, Arizona for a Level 2 ultrasound. I remember thinking, 'how great is medical technology these days that we can, at 19 weeks, be given the sex of our baby with 95% accuracy?' As the ultrasound tech took her sweet time, I grew impatient to find out if we were having a boy or girl. I was certain it was a boy. When she asked if we had a girl or boy already at home, I told her we had a girl. She said, "Well, she is going to have a little sister." Shocked, me.

How ignorant was I, just 365 days ago?

The shock I felt in that moment cannot even compare to what I would learn in the next hour. Even when the ultrasound tech told us that she was "going to spend some time taking pictures of the heart," I did not realize the blow we were about to endure. Only when she left to get the doctor, and I saw the look on his face as he entered the room, did my heart sink. Only to sink even further when hearing his first words. "I have some bad news for you today." As I type these words, the actual scene of that moment re-plays in my mind, as if I was a film director and I could say "cut" and change the events that occurred next.

It was then, at 4:00 p.m. in the afternoon, 365 days ago, that we first heard, "there is something wrong with the baby's heart." Laying on the ultrasound table, I turned my head towards Caleb, with gross fear in my eyes. I grabbed his hand and in the blink of an eye, my world stopped turning.

The next scene I recall is Caleb and I walking down a hallway in complete silence. We were in shock. We were ushered into a consultation room to speak with the doctor, in more detail, about our daughter's defective heart. My mind was racing. What did I do? How could this happen? Am I going to lose my baby girl? We waited for what seemed like forever until the doctor walked in. He had a large medical textbook to explain what our daughter's heart looked like and how it was defective. He also talked about our options. The two options I heard, in a nutshell, were life or death.

Unfortunately, we'd drove to the appointment in separate cars, after work. Now, we both had to drive home, in a daze, weighed down with this knowledge. I called my parents who were at home watching Emerson. My dad answered the phone. All I could say was, "we got bad news," then I burst into tears. The remainder of the drive, I sat behind the wheel, in auto-pilot. The evening of December 9, 2009 is a complete blur.

The next morning, we had our first of countless fetal echocardiograms and met with Dr. John Stock. Dr. Stock reiterated our options, with cautious optimism for cardiac reconstruction. No parent should have to make the list I had to prepare in early December, 2009 - a pros and cons list to help us decide whether to terminate our pregnancy or fight (and suffer) for, and with, our little girl.

Even while discussing the list, we reached the same decision, in our hearts. From that moment on, Caleb and I chose life. At that point in our marriage, we'd done a lot of fighting (literally and figureatively) and we always came out on top. If we had the chance to fight, we knew we could and would give it our all.

And the whirlwind began...

To say that a lot has happened in the last 365 would be a gross understatement. So much has changed.

365 days ago, we began this battle. For 153 days, I fought for Zoe; For 211 days, I've fought with Zoe. I imagine the days ahead, in my mind, and HOPE for countless days that she will be here with me, fighting. I imagine, the movie in my mind, a strong, courageous and beautiful little girl raising awareness for her defect; fighting not only for herself, but for the countless babies to come who will face this same battle. Someday, I imagine, medicine will evolve with awareness and research and we'll no longer have to fight this battle. No more mothers will have to make the choice of life or death when it comes to severe congenital heart defects.

Tonight, the evening before my life came to an abrupt halt 365 days ago, I rocked my baby girl to sleep, reconstructed heart and all. As I rocked her and thought about December 9, 2009, Zoe reached up and gently placed her hand on my cheek. Her gentle touch brought me to tears. I'd like to think she was thanking me for giving her the opportunity to fight. I kissed her forehead in return as she fell asleep, thanking her for the countless and undescribeable ways her life has touched mine.

From this moment, 365 days ago


to today, December 9, 2010, and always...


Thank you, Zoe Madison.

Music is Awesome!

Our excitement for today's surprise began in May, when we were in Philadelphia. It was Emmy's birthday and we purchased her Yo Gabba Gabba Live tickets for the Phoenix show. Today was Emmy's big day; she got to meet her favorite characters. For lunch, she wanted macaroni and cheese so we headed to Red Robin. After lunch we cruised downtown for the big show. I'd told her she was going to meet Brobee, Toodie, Muno, Foofa, Plex and DJ Lance Rock earlier in the day, but it didn't quite click until she saw their trailer.

Daddy went all out for the big surprise and got Emmy front row seats and backstage, VIP treatment.

(Waiting for the show to start...)

Emerson LOVED being front and center. She danced and sang to her favorite songs (so did mommy.) Mommy's favorite is "Balloons."

During the show, Emmy got a hug from DJ Lance who came down to meet some of the kiddos.

She was in shock meeting DJ Lance, but that was nothing compared to what happened next! Biz Markie (a regular on Yo Gabba Gabba) came out on stage to sing his "Biz's Beat of the Day." Emmy was one of a few lucky kids to get to sit on Biz's lap and beatbox. Granted, Emmy didn't do so hot, but mommy snapped some great photos!

Emmy wore her DJ Lance glasses and Foofa headband the entire show. I haven't seen her this excited in awhile. It was so wonderful to get her out of the house, since she hasn't been able to do much with us since Zoe's birth and surgeries.

After the show, we went backstage for a photo with the cast. Biz made a second appearance. This time, daddy jumped in with Emmy. I think Daddy was way more excited to meet Biz than Emerson. In fact, I'm sure of it - just look at his face.

Emmy kicked balloons and danced like a mad woman while waiting in line to meet the cast. I was surprised, when it was our turn, to see her book it towards Toodee. She put her arms up in the air, asking Toodee to pick her up. Toodee gave her two high fives instead. Emmy couldn't believe she was meeting them all. We got a family photo, but will have to post it once we receive it. For now, enjoy Emmy giving Plex a hug. (It was dark and no flash allowed...)

Emmy had so much fun at the show and after party. This smile pretty much sums it up.

Mommy had fun too!

By the end of the backstage party, Emmy was pooped.

Thanks Grandma and Grandpa for watching Zoe. She obviously had fun too and was tuckered out by the time we got home.

Sisters

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.

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...)

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.)

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.

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.

HAPPY BIRTHDAY ZOE MADISON!

HEART WALK

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...