Friday, June 19, 2015

The Normal Life

I visited our blog today (to find a link for a new HLHS family) and couldn't believe my last post was over a year ago! Whoopsies, my bad.

The past year flew by and I'm happy to report that all is well. And Normal.

Zoe started and finished pre-Kindergarten - which was way more difficult for mom than Zoe! She loved it, and ended the school year with not one, but two, boyfriends.

Zoe and Ryder (aka Batman and Batgirl)
Zoe and Hudson

Both of our little ladies took up gymnastics and are loving it. I regret not getting Zoe into community activities earlier, as she's already built muscle tone in her little arms and legs - and, new research is showing that exercise is important for single ventricle kids as it improves circulation.

All of us have been extremely busy this past year - with school, traveling, advocating, and opening a new business - Thies, Lihn & Simpson. Thanks Obama! No Really, thanks Obama for making it possible for individuals with pre-existing conditions to become business owners!

Many may be unaware, but after Zoe was born, Caleb decided to go back to school and get his LL.M. in Estate Planning (with a specialization in special needs and elder planning). An LL.M. is a "Master of Law" degree with advanced study in a specialized area of law. Inspired by Zoe, Caleb wanted to use his law degree to help other families raising special needs children and individuals often overlooked by our system.

I couldn't be prouder of him - and his two partners - for making this venture at the beginning of the year. And, honestly, proud of myself for not freaking out more in taking this leap!
With Zoe's heart in good shape, we've done some traveling and exploring - taking our first trip to San Francisco to visit Aunt Stephanie and Uncle Paul

And braving the elevation with Zoe in the Colorado Rockies. As you can see, she fared perfectly. We had to get this picture of Zoe at 9,331 feet with great oxygen saturations to send to her cardiologist - who advised us to drive home if she got cyanotic or lethargic. Clearly, Zoe wasn't going to let half a heart get in the way of a great vacation!

White Water Rafting down the Colorado River
We'll be doing quite a bit of relaxing until school starts up again in August.  Zoe and I are headed to Philadelphia at the end of July for an annual post-Fontan cardiac work up. It's hard to believe her last surgery was two years ago. The further out we get, the more and more normal we feel. Cheers to countless years of normalcy!

We hope everyone enjoys the remainder of the summer and we'll do our best to update more than once a year! Cheers! 


Sunday, April 20, 2014

Live it Happy

One thing I've often heard, from some wise cardiac practitioners, is:  "Families whose HLHS child is doing well, are not sharing their journeys online - they're busy living their lives."  I always thought, "yeah, that's probably true..."

Well, it must be true. 

My last blog update was in January!  We've certainly been busy living our lives.

Life post-Fontan is beautiful.  We've very much settled into normalcy.  Zoe is doing incredible.  We actually saw this (a definite first) last week:

100% oxygen saturation!!!
Zoe had a cardiology appointment in early March and Dr. Stock was impressed with her clinical presentation - so much so, she bypassed an echo.  She'll have another full work up before starting pre-K this fall.  Yep, my baby is going to school!

This spring, we were blessed to finally meet a few HLHS families we've known via social media, but never had the opportunity to meet in person.  We're thankful we live in Arizona where so many love to come and visit!

Jozie (North Dakota) and Zoe

Zoe, Will (Iowa), and Emmy
With the continued "spirit of living" narrative, we've spent some time up north, in Strawberry.

Papa and Emmy play badminton
Thus far, spring in Arizona is treating us well.  We have a few trips planned this year, mom has some speaking engagements lined up and dad is being admitted to the U.S. Supreme Court in June.  All in all, 2014 is another year to live well and be happy.
How could we not - with these two smiling, silly, and incredible little girls?!

May, our busiest time of year, will bring many more smiles.  Two birthdays, one anniversary (15 big ones for Caleb and I), and a Kindergarten graduation. 

As we near summertime in Arizona (ouch), please join us in our summertime mantra! 

Friday, January 10, 2014


The title of this post - one of Zoe's favorite most appropriate expressions - and my reaction when I saw our last update is from September 2013!!!  Yikes - someone's been busy!

I won't go into great detail about the last several months, but as you can probably imagine, life is good.  Zoe is flourishing with her Fontan circulation.  She's growing, slowing gaining some weight and becoming a bit too smart.  The mix of intelligence, feistiness and determination is both good and bad.  We're down to giving medications once per day and her oxygen saturations are in the mid-90s. Phew!

Emmy is doing incredible in Kindergarten.  She loves school and brings home perfect test scores almost weekly.  She's in a liberal arts prep school and I can just see it now - a UPenn Medical Student!  That Doc McStuffins sure is a good influence!

Caleb and I are staying busy between work, kindergarten (nightly homework) and play.  I've expanded my duties and am assisting the National Pediatric Cardiology Quality Improvement Collaborative, bridging my duties with Sisters by Heart.  It's really a great opportunity to unite parents and clinicians, to work together improving HLHS treatment and care.  Of course my full time job as a paralegal is priority, but I find fulfillment in both arenas, so I'm doubling up!

Don't you love how this post turned into a seemingly Christmas-card-esque annual wrap up?  Ugh, so not what I had in mind. 

I'll leave you with some family photos from our traditional year-end photo shoot with Blue Lily.  The setting - an auto junkyard.  You see junk? We see beauty!

Sunday, September 22, 2013

Team Zoe: Arizona Congenital Heart Walk

It's that time of the year again; time to fire up Team Zoe and get ready for the Arizona Congenital Heart Walk.  The walk is on November 3, 2013 at Tempe Diablo Stadium at 10:00 a.m.

Team Zoe 2012
This walk is always important to us as the money raised benefits The Children's Heart Foundation and the Adult Congenital Heart Association to fund research which contributes to better outcomes and lives for children and adults with congenital heart defects.  In fact, when we were in Philadelphia in August for Zoe's Fontan, her interventional cardiologist, at CHOP, told us about a study he is currently conducting, which was funded by The Children's Heart Foundation.

2013 Team Zoe shirts are available for purchase.  The shirts are $12 each ($17 each if out of state shipping is needed) and all proceeds benefit The Children's Heart Foundation and the Adult Congenital Heart Association.   The design for this year's shirt:

(Front - shirts are navy blue)
If you'd  like to order a shirt, please email me at with size and quantity.   (Adult S, M, L, XL, XXL, XXXL, 2T - 5T, Youth Small, Youth Medium and Youth Large.)  Payment for tees can be made via PayPal to or send a check to:

Stacey Lihn
G & K, P.C.
2575 E. Camelback Road
Phoenix, AZ 85016

We'll need all orders by October 14 to ensure printing and delivery in time for the Congenital Heart Walk on November 3. 

You don't have to walk with us to purchase a shirt.  BUT, we'd love to have you join us on November 3, 2013 in Tempe, Arizona if you're available.   To sign up to join Team Zoe at the walk, click here, or to make a donation to Team Zoe, click here

Donations will benefit the Children's Heart Foundation/Adult Congenital Heart Association and are tax deductible.  When donating, know that you are making a difference in the lives of those living with Congenital Heart Defects (CHDs).

With awareness comes funding. With funding comes research. With research comes hope. With hope comes life. 

Help us make a difference for Zoe and the millions living with Congenital Heart Defects.
Zoe's strongest walk yet; 24 hrs post-open heart surgery

Saturday, September 14, 2013

Our Fontan Success Story

Zoe rocked the Fontan.  Period. 

Immediate extubation without consequence, great pain management (off all pain medication day 5, including Tylenol), walking less than 24 hours post open heart surgery. 

Zoe's post-Fontan stroll...

With such great results and speedy recovery, I've been asked a few times, "what's your secret?"  I thought, while it's fresh in my mind, I'd share our Fontan story.  I am confident that each step we took, set Zoe up for her best possible outcome.  So, here are my collective thoughts on how we got to where we are today.  


By far, this is the first, most important step in this HLHS journey.  From the day of Zoe's diagnosis, we educated ourselves and did our research.  We received three opinions (local and distant) on her heart defect.  We compared outcomes and data provided to us from differing centers.  We met face-to-face with surgeons and cardiologists who may be part of Team Zoe.  And, we followed Zoe's current cardiologist's advice... "always go with your Gestalt" - that gut feeling, what you know and feel is right for you, for your child.  We did.  And landed ourselves in Philadelphia with experts in HLHS.  Our surgeon, Dr. Tom Spray, is by far one of the fastest, most skilled surgeons in the world.  His bypass times are unreal, his technical performance is noticed (yes, even on echo).  The experience of our Philadelphia team increased Zoe's post-operative performance and healing.  If you know how to manage post-operative complications appropriately, you cut down on significant complications and permanent damage.  We know that a large portion of Zoe's current success begins with our wise choice to travel for her invasive care.  Here at home, we chose wisely and receive her local care with a cardiologist who works well with the rest of her Philadelphia team (and, most importantly, with us)!  For more information on this subject, read this well-written article by Dr. Anthony Rossi on "How to Choose a Congenital Heart Center."


Prior to Zoe's Fontan, I conducted a LOT of research.  In fact, over the past three years, my brain has been a sponge - absorbing all things HLHS.  My brain really ramped up the last few months leading up to the Fontan.  I play an active role in Zoe's medical care.  I'm informed, I educate myself, I ask questions.  I asked myself, therapists, fellow Fontan families, and her cardiologists, "what can I/we do to enhance Zoe's Fontan outcome and recovery?"  The answers received helped mold our plan of action. 

First, I managed what I could control: eastern medicine and holistic modalities.  Most hospitals in the United States do not offer eastern medicine techniques as complimentary treatment... so, I took it upon myself to learn.  I researched Reiki - a form of energy healing, interviewed Julie Motz (who worked in Dr. Oz' operating room as an energy healer), familiarized myself with essential oils and talked to therapists about best practices to prepare Zoe for her upcoming open heart surgery. 

I began using essential oils at home, approximately 6 months prior to the Fontan.  Zoe grew familiar with their scents and I knew which oils gave her a sense of peace and calm.  I became certified as a Reiki Master a few weeks prior to Zoe's Fontan.  In talks with Julie Motz, I knew the practice of energy was crucial to a speedy and successful recovery.  In fact, I was pleased to see that Children's Hospital Boston has Reiki Masters on staff, within their cardiac unit. 

Communication played a very large role in Zoe's Fontan success.  I talked to her, in depth, regarding her past surgeries and the Fontan.  She watched video and looked at photographs of herself pre- and post- Norwood and Glenn.  She UNDERSTOOD that although she was having open heart surgery, she would also recover - heal, feel better, and go home.  Her mind and body were in concert with this narrative.  She looked at photographs of this process (her birth, her family support system in the hospital, her surgery, her recovery, her return home).  The process of what was to come was very clear in her mind.  I also spoke to her about the operation itself, what Dr. Spray would do, what her body needed to do to recover quickly.  She voiced to her body what her liver needed to do, what the role of the chest tubes were, etc.  Much of my dialogue with Zoe was derived from pointers from Julie Motz, which I'm willing to share with anyone interested (just email me at

Prior to leaving for Philadelphia, we incorporated a lot of play therapy (at home, led by mommy).  Zoe has a doctor's kit and we took her stuffed animals' blood pressure, pulse ox, placed IVs, performed echos and ekgs, etc.  If I knew how to do the Fontan, we'd have done that too!  We read Franklin Goes to the Hospital to help Zoe comprehend that having surgery, and her feelings, weren't abnormal. 

All-in-all, this preparation piece is key.  Preparation prepared not only Zoe, but also myself, Caleb, and Emmy on what was to come.


Zoe received Reiki treatments (with regularity and surgical intention) a week prior to her Fontan.  As many of you read on prior blog posts, myself and Zoe's "Uncle Brian" both gave Reiki - during surgery and immediately following surgery.  We focused on her heart (obviously), liver, grounding her, emotional well-being, and gastrointestinal tract.  Zoe's infamous for blood chemistry being off following extubation, so our main initial goal was the liver, where anesthesia and toxins are processed.  Zoe received, in total, five hours of Reiki in her Cardiac Intensive Care Unit immediately following her Fontan.  We were quite encouraged by the support of her nursing staff - who've seen Reiki assist in recovery.  During Reiki, we played soft, soothing music (Garth Stevenson) and diffused essential oils (yes, we had a private room). 

For gastrointestinal issues (i.e. constipation), we also had Zoe doing yoga poses (twists in bed) and abdominal massage.  This proved to be VERY EFFECTIVE!  Zoe held this pose for several minutes with assistance.  We did use quite a few of these modalities together (i.e. reiki the gut, DiGize oil, twists, and massage).

In addition to reiki, aromatherapy (suggested Young Living oils are Lavender, Trauma Life, JuvaFlex, DiGize, Valor), yoga and massage, we also played some of Zoe's favorite tunes (music playlist created by dad and Zoe).  The music proved particularly useful when she began recovering, walking, and becoming more active.  We held dance parties in the CICU! 


Never, ever underestimate the power of a positive attitude.  From our beginning talks about the Fontan, we remained positive and encouraged Zoe that this was simply part of her journey.  Were we scared? Of course!  But we knew we'd done everything possible - compiled a great team, created a plan and all would be well.  Our kids feed off of our energy, so I wanted Zoe to feel our positivity and make it her own.   Nurses in the CICU and step down unit were amazed at Zoe's positive attitude.  They commented that many HLHS children coming off the Fontan go into a "funk" and are "depressed" for a few days.  I can honestly say, Zoe (while yes she grew cranky and wanted to leave), she never felt despair or depressed. 

Day 4 - post-Fontan

In fact, the day after discharge from the hospital, as we were walking in Philadelphia, Zoe turned to me and said, "Mom, I'm so glad I got my heart fixed!"  Pretty amazing statement coming from a 3-year old just one week post open-heart surgery and acclimating to a brand new systemic circulation. 


One of the greatest tools we had during recovery was - incentives!  We created a "wish list" on Amazon for Zoe's friends and family to show their love and support.  Each time Zoe had a particularly rough event at the hospital (IV placed/removed, chest tube removal, catheterization, blood draw, drinking required fluids, etc.), we provided her a present from her wish list.  We included items on her wish list that would brighten her hospital room as well - window markers and wall stickers.  Not only did the presents provide entertainment, but we told her who each present was from and why they sent it - creating a loving and supporting environment... AND LOTS OF FUN! 

Another great tool is the Beads of Courage program.  I'd never actually strung Zoe's beads, but found this a huge benefit post-op because Zoe had a great time stringing her own Beads.  The program was created here in Arizona, at the University of Arizona.  You can read more about the program HERE

I hope you find some benefit from our Fontan story.  I know some or all of our modalities may not be for everyone, but take or leave what resonates with you.  Explore your options and empower yourself and your child. 

I'll leave you with Zoe's display of Fontan emotions... 

Heart hugs from the Lihns - and Uncle Brian!

Thursday, August 29, 2013

Home, Sweet, Home

Even though we've been home for 5 days already, we're still unwinding. The emotional upload that occurs before a surgical trip takes a while to download from.  This picture pretty much sums it up...

Upon returning home this past weekend, I choked back tears as I watched my little girls so excited to see one another.  It feels great to be home, and having Zoe doing so well is icing on the cake.  I was concerned we'd return home and she'd need close monitoring, but that's not the case.

Zoe had her follow up appointment with her local cardiologist, Dr. Stock, today.  He's been our lifeline in Phoenix for the past 4 years and it was great to see his face light up when he saw how wonderful Zoe looked.  He fed her ego, calling her a Super Star; then let her rule the office for a good hour.

Overall, Zoe sounds and looks wonderful.  She had a full work up (minus chest x-ray which wasn't necessary).  Her ekg, spotless.  Sats 87-88 (normal with her fenestrated Fontan).  BP normal.  Echo, great.  She has no tricuspid regurgitation, LPA looks wider than ever, aortic arch looks great, no fluid around heart or lungs, function is very good.  Liver is a "2" (measurement of how taxed the liver is from new pressures) and will decrease as her body acclimates to her new circulation.  All-in-all, we're doing great and Zoe's heart is still smiling.

During her echo, Zoe asked if she could see her heart smile again.  The echo tech was super confused :)  When the tech showed me her Fontan, she said, "wow, who did her surgery?"  I told her "Dr. Spray" and she smiled.  Pretty impressive scary when the echo tech can tell the difference between surgeons.

Zoe is due back for another cardiac visit in three weeks.  We're beginning to wean her diuretics today and she'll be completely off of them in 2 weeks.  Again, I'm so impressed with Zoe's ability to recover and heal.  Dr. Stock is happy, we are happy, Zoe is happy.  It's time to LIVE and GROW UP and BE HAPPY. 

One of my favorite "must get photos" is Zoe and I in Rittenhouse Square (a fabulous little park in Center City).  Every in-patient stay at CHOP, ends with the same photo.  I look forward to this photograph every year.  It's a marker of our journey and we'll be growing the collection as they years go by.

(2010, 2011, 2012, and...)


For all my heart moms heading into the Fontan soon (I know there are several), I'm planning a "Our Fontan Success Story" post soon - to highlight, what I believe, played a large role in Zoe's success.  Stay tuned...

Thursday, August 22, 2013

Green Light

As many of you know, Zoe had her post-op visit with Dr. Szwast yesterday.  This was our "stay or go home" appointment. Admittedly, I was nervous.

It turns out, Dr. Szwast had nothing but good news for us.  Zoe's Echo and chest X-ray looked great. She has no valve regurgitation, function looks great and flawless repair with a "smaller fenestration." Her liver is doing well and didn't take a hit, which can sometimes happen with this new anatomy. 

Plan is, a lifetime of follow up to keep an eye on her heart function and liver.  Post-Fontan is wonderful, but as I've heard many times over, it's "a faulty circulation," meaning it isn't ideal and can cause significant complications.  Given her speedy recovery and her body's quick acceptance to the Fontan, Dr. Szwast is very happy.

High fives from Dr. Szwast; Zoe was too fast!

A great appointment means... we're free to leave!!!  We're staying for suture removal on Friday and heading home Saturday.  Zoe is so excited to go home. She's looked forward to returning home since the second day we arrived in Philly! We're so happy it's sooner than later!