Mister Will

A few days ago, I posted asking for thoughts and prayers for some of Zoe's fellow HLHS warriors. I updated you on Aly and Chase - both with good news.

Now, for an update on Mister Will. He's decided to throw his mom and dad for another loop (a gross understatement.) Will underwent open heart surgery with the intention of completing his Glenn - Stage II surgery. After opening Will's chest, the surgeon did not appreciate the size of Will's pulmonary arteries - they were smaller than they'd hoped and hence, could not go forward with his Glenn. Will's surgeon placed an additional shunt to assist in further growth of Will's pulmonary arteries (PAs). Doctors, in speaking with Will's parents, Chris and Meg, informed them that they will give Will 3-4 months in hopes that his PAs grow with the extra blood flow. If the PAs do not increase in size, Will is not a Glenn canidate and will require a heart transplant.

As a heart parent, I know how devastating that news can be. There was a point in time I heard the word "transplant" come out of Zoe's cardiologist's mouth. It is completely paralyzing.

Will is now one day post shunt placement. For the remainder of his interstage period, which has now been extended to 8-9 months, he will be living with both a Sano and BT shunt placed in his tiny heart. Please pray and send positive, energizing growth vibes to Will's pulmonary arteries. He needs steriodal prayers for the next few months.

He is a fighter, like all HLHSers, but could use some additional help.

Keep the beautiful Kohn family in your prayers. Please.

Hang tough, little man.

Warning:

Hummus may elicit adverse reactions.

Fellow Compadres

UPDATE on Chase and Aly:

All is well and good in the lands of Michigan and South Carolina. Aly's Fontan and Chase's cath transpired wonderfully. Chase's LPA was ballooned open and has good flow. Aly's Fontan was seamless. Chase will likely be released after a night of monitoring and Aly has about a one-week recovery stay ahead of her. Thank you for your support - Zoe appreciates it!

Remember, Mr. Will's Glenn is tomorrow morning. I saw a picture of Will today, sent from his daddy, and he looks strong and ready (unlike his Dad's March Madness Bracket...)

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This week is a big week for several of Zoe's HLHS compadres. Please send happy thoughts, prayers and positive energy to our friends in Iowa, South Carolina and Michigan.

We'll start with the youngest... Will (the infamous Saints fan) is having his Glenn on Tuesday. Congratulations, Will, for a nearly seamless journey to the Glenn. You, of course, had to throw a wrench into your mom and dad's plans just weeks before your actual Glenn. Never a dull moment!

Chase is undergoing a cardiac catheterization to evaluate his left pulmonary artery (LPA). His cardiologist is prepared to balloon open his LPA in order to buy him some time before he needs his Fontan (the final planned surgery in the single ventricle staging process).

And, Miss Aly Jean, who was supposed to have her Fontan two weeks ago, but decided to give up her spot for two kiddos who received new hearts! Aly's Fontan is Monday morning.

Please hold these little ones and their parents in your thoughts and prayers this week as they undergo procedures and forge forward on the road to recovery.

Keep up the fight Will, Chase and Aly! We love you!

Insane in the Membrane

The past several days have been hectic - fun hectic, but hectic none-the-less. The chaos started with a photoshoot for Zoe's cardiology office. The shoot was in Mesa at 4:15 p.m. - great timing for someone traveling with a cardiac kid from the far northwest valley. Thankfully, Zoe slept nearly the entire drive. And so, I thought she would be in a great mood for the photoshoot.

Not so much.

Trying to get ten single ventricle kids, who don't get out much, to sit still and smile for a camera is next to impossible.


Zoe took a few good pics and decided she would sport some serious crocodile tears. At the shoot, she finally met up with her HLHS buddy, Owen.


Zoe and Owen both see the Amazing Dr. Stock. We (the moms) thought it would be nice to get a cute picture of the two buddies together for Dr. Stock. Zoe and Owen were not of the same mind. This was all they gave us...


Sorry, Dr. Stock.

On Friday, it was girls' night. Not just any girls' night, but heart momma girls' night. Our conversation was a bit psychotic at times. I'm sure if anyone overheard our chats, they would think we were insane. We just kept saying (outloud), "we don't get out much..." We had a blast and, of course, Andrea (aka Mary Poppins) brought her camera along. Good thing one of us was using our noggin.


Yesterday, the Lihns ventured out of the house once again - to the Tempe Festival of the Arts. We strolled Mill Avenue and people watched.


We bought the girls matching sunhats, which Emerson insisted she "needed." Apparently it enhances her dancing skills.




Hopefully tomorrow, we can get a little rest and relaxation time before the start of a new week. Between work and play, I feel like my sanity is slowly slipping away. Caleb can certainly attest to that!

Happy Birthday, Jacob!

Today is Jacob Dylan Baker's birthday!

Jacob was born at CHOP and I've come to know both he and his mom, Kathy, very well. Jacob has HLHS, like Zoe. Jacob's journey with HLHS proved to be more complicated than Zoe's and he's proven himself to be one hell of a fighter.

Throughout his journey, Jacob set the bar high as a warrior and I always told Zoe, "Jacob is doing so well, Zoe, and he's been through so much. Be a warrior, like Jacob."

And she has.

Thank you, Jacob, for being so strong and an inspiration to our family. We love you and can't wait to see you again.

Happy FIRST Birthday, Warrior Man!

A Glimpse of Zoes

Last night, I walked into the family room and saw Zoe sitting on the floor with a blanket over her head. She does this when she wants to play peek-a-boo. Sadly, she was the only one playing. I grabbed our new FLIP cam and started filming.

Some of you caught this video on Facebook already, but I didn't want to leave anyone in the dark - she's just too cute to keep under wraps.

So, without further adieu, your first glimpse of Zoes in action. (Note: when you meet her in person, do not mention her large cranium, she's apparently quite sensitive.)

Gwenyth Graham Carpenter

This week brings back a lot of memories. Last year at this time, I was pregnant with Zoe, knowing we'd be relocating to Philadelphia in one month's time. A few of my fellow heart moms (and now, Sisters) were in Philadelphia as well awaiting the birth of their new heart babies.

One of those babies, Gwenyth Graham Carpenter.

Today is Gwenyth's birthday.

Happy Birthday, sweet Gwenyth.

A year ago today, your mommy and daddy amazed me. Your birth story is incredible. Your mom gave me so much inspiration. She hypnobirthed you into this world at the Children's Hospital of Philadelphia. Your daddy made sure that everyone was informed of your progress. I was glued to the computer on March 17, 2010, just waiting for your arrival. I'm pretty sure I checked your blog, a hundred times over, on your birth day. I refreshed and refreshed and refreshed your blog, anxiously awaiting a newly titled entry...

They began:

Now on Pitocin

Update from the Delivery Room

Update from the Delivery Room: Now with Harder Contractions

4cm; 90%; -1

Laura reports need to push; folks are being paged

8cm! We're going in!

She's not resting; she's hypnobirthing! (one of my personal favorites)

Our Cast: The Doctors and Friends

And then, you arrived...

We Have A Baby!

Your dad posted at 7:19 p.m., just 4 minutes after your birth, that you were here. I remember seeing your sweet face for the first time and crying.

I remember seeing your mom's glowing smile and the love in her eyes during your visits together.


I was so elated that your surgery went well and prayed for you during your rollercoaster recovery. I couldn't believe that you were being discharged eight days before we arrived in Philly. I was so happy for you and your mom, but sad that I did not get to meet you in person.

As our journey began on April 13, 2010 in Philadelphia, you were nearing one month old and settling in at home.

I continued to follow your blog and admire your photographs. Your fellow CHD warrior, my daughter, Zoe, arrived on May 11, 2010. In the whirlwind of activity and Zoe's first open heart surgery at 15 hours old, I admittedly lost sight of your journey. I will NEVER forget the day, the moment in time, I learned of your passing. I stood in a Cardiac Intensive Care room, in shock, surrounded by ailing babies, including my own. The pit in my stomach returns as I write this entry. I am still in shock.

Today is your birthday. Your first birthday.

Happy Birthday, Gwenyth - you were the first CHD baby I fell in love with.



Please join our family in sending love and light to the Carpenters today as they remember their daughter. To Gwen's mom, Laura; her dad, Myers and big sister, Lil.


We love you and will hold your precious angel in our hearts, always.

Zoe's Big Day

We did it. We (meaning all four of us) left the confines of our OCD home and went out, in public!

We took the girls out for a late lunch/early dinner to avoid large crowds. We sat on the patio (open-air)... Can you tell this was a well-thought out plan yet?

I'm fairly certain our waitress thought we (ok, I) was psychotic. I used nearly an entire box of Wet Ones to wipe down the table and every square inch of any surface which could harbor germs. Then, once we were all settled, I pulled out the camera. I had to document our first outing as a family. The waitress came with our drinks as I made animal noises in hopes that Zoe would look at the camera.


Perhaps the waitress thought I was a psychotic mom, on vacation...

I sorta was on vacation - vacation just happened to be about 5 minutes from our house!

Emmy was thrilled to be out of the house too, with her sister. This picture pretty much sums up her feelings on our afternoon vacation.


Emmy was so excited, she could barely sit still. Lord knows why Mama Ninfas was playing a hodge-podge of rock, but Emerson didn't mind and jammed to Billy Idol, Spin Doctors, Creedence Clearwater, Asia... you get the idea. Now, here's your visual.


After our linner came, I snapped some more photos and made Caleb get one of just the girls.


Zoe loved being out. The weather was perfect and she is a people-watcher, just like her big sister.


So, watch out Phoenix, Zoe is slowly emerging and making appearances. No, cold and flu season is not quite over yet, so she's still pretty much on lock-down, but it's a start.

I think the sisters are more than thrilled. Our first outing = success!


And, FYI, Zoe will begin physical and occupation therapy next week. After an evaluation by Arizona Early Intervention, she's been referred to the Department of Developmental Disabilities. What, you say? I know, I know. She's not REALLY disabled, but she certainly fell behind after all of her hospital stays and extended recovery times. The therapist believes she'll be caught up in no time and mobility on track - just in time to drive us mad for the summer months!

Are we "normal" yet?

This past week, I've almost felt normal. Our daily routines consist of mom and dad going to work, cleaning the house, dropping the girls off at Grandma and Grandpa's, reading bedtime stories, watching hours of Yo Gabba Gabba, blowing bubbles, taking baths and lots of sister play-time.

Ok, as I write this, I realize that "normal" does not also include morning and evening meds, OCD attitudes about germs, wondering if my baby is teething or going into heart failure, debating whether or not a heart rate of 137 justifies a text to the cardiologist, etc.... but, hey, beggars can't be choosers. As the days pass, normalcy creeps in. And I love it. Sometimes I catch myself and wonder if I shouldn't feel normal; maybe normal isn't good. Abnormal keeps you on your toes and reminds you to take nothing for granted.

Unfortunately, being a part of our ever-growing congenital heart defect (CHD) family does not allow you a chance to feel "normal" - at least not for more than a day or two at a time. There is always pain and suffering and reminders.

So, today, the Lihns will feel normal. Afterall, Zoe turned 10 months old today! Tomorrow, we will take Zoe out into the world for the first time in a long, long time.

We will continue to take life a day at a time and enjoy our days of normalcy, when and while we can.

Pictures of Normalcy...

(Zoe agrees...laundry is no fun!)

("Sassy like Mom" - and bossy too!)

(Emmy "getting Zoesie out" of her crib.)

(Sister love- Zoe is not impressed)

(Chillin' in the playroom)

(Play that funky music, white girl)

Band of Sisters

This weekend, I met the most amazing women. We've been calling ourselves "sisters" for awhile now, so it may seem strange that we've never actually met face-to-face, never hugged each other or shared tears. Well, this weekend, in a 24 hour timespan, we did all of that - and more.

Our purpose for gathering was not pleasant, but something we knew we must do - to be there for a fellow Sister as she grieved for her son - her 16-month-old, unbelievably amazing and beautiful boy.

As I sat in my Southwest Airline seat, I played over in my mind how the next 24 hours would play out. I was "happy-sad," so said my Facebook status.

From the moment I laid my eyes on my dear friend, Amy Bennett, I felt at home. She ran over to me (with her broken, booted foot) and gave me the best hug - a huge heart hug that I'd been waiting for. Amy threw (literally) my bag in the back of her car, we hopped in and sped off to her house where she announced the margaritas were already flowing. It was then, I knew these truly were my Sisters :)

That evening, I met four more heart sisters - all amazing and inspirational women. We sat around a dining room table for hours chatting and laughing. We tried to keep the mood upbeat, knowing the next day would be extremely challenging for us all - a Celebration of Life for our fellow heart sister, Nicole DiCarlo's dear Travis.

The next morning, the breakfast table grew increasingly quiet as we knew the time grew near, to load up the car and drive to San Diego to support Nicole and remember Travis. I'd never met Nicole before that day; seemingly odd since the moment we embraced, I felt like I'd known her for years - and not just known her, knew what lies inside her heart and soul. "I love you" - the only words that left my mouth as we embraced.

As we walked into the room, we were met with hundreds of photographs of the DiCarlo family and Travis' big eyes and radiant smile.



The Celebration of Travis' Life was both beautiful and down-right frightening. As I stood in the back of the room (yes, Trav packed them in,) I couldn't help but wonder when I would be "the mom" needing support. I tried to push that thought out of my mind, but the thought was relentless. I listened intently as Travis' surgeon spoke - the only man who literally touched his heart. I listened as Travis' Nana, Sue's, words were spoken from a letter she'd written but couldn't speak herself. I listened to Nicole as she stood in front of hundreds of family and friends and spoke of her only son. I wondered where she found the strength to stand, let alone speak. But, the love inside the room was nearly palpable.

After the service, which ended with a photo and video tribute, everyone gathered for a balloon release. Guests scrolled messages to Travis in various colors and sent them into the blue skies.

I knew immediately what my message would be...

Bodie, Trav's buddy and fellow HLHS warrior, kissed his balloon before letting it fly. This sweet sentiment brought tears to my eyes.

And so, as we Celebrated Travis, we also celebrated ourselves. We are strong and amazing women. We acknowledge it. We take pride in it. We banded together last weekend, on that day, for Nicole. For Roger. For Travis. For ourselves.

What a gift these women are to my life. A Band of Sisters.

(Jenny, Sara, Nicole, Amy, Kathy and myself.)

I am truly blessed to be a part of this family.