Friday, January 10, 2014

HOLY GUACAMOLE!

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)
(Back)
If you'd  like to order a shirt, please email me at lihnsc@yahoo.com 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 lihnsc@yahoo.com 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.  

1.  CHOOSE WISELY. 

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."

2.  PREPARATION

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 stacey@sisters-by-heart.org).

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.

3.  PUTTING IT IN TO PRACTICE

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! 

4.  ATTITUDE

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. 

5.  ARM YOURSELF

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...)

2013!!!

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!


Tuesday, August 20, 2013

Back to Normal

Prior to Zoe's Fontan, based on stories I'd heard, I figured it would take a week or so for Zoe to return to her normal self.  Well, that simply isn't the case. 

She woke this morning, happy as a clam - talking about how we need to bring Emmy next time we come to Philadelphia.  She insisted on going for a walk today, so we did.  Lots and lots of walking (with Zoe mainly in the stroller). Hard to believe she's not had any pain medication (including Tylenol) since Sunday evening!

We decided to do some sightseeing and check out historical sites we've not been to, but always had on our list of "things to do... next time."



Zoe, the incredible trooper, insisted on riding the carousel in Franklin Square, shared my hot dog and fries and played mini-golf.  Seriously, this girl was in the Operating Room a week ago today having her chest opened!

Yes, this seal was sanitized!
18 Holes of Mini-Golf (we did skip a few)...
Not following the "no arms above head" rule.

We also visited a place Caleb wanted to check out - City Tavern.  It's the oldest pub in the United States, opening in 1773 and site of the first 4th of July celebration.  They serve beer made from recipes of George Washington, Ben Franklin, Thomas Jefferson, Alexander Hamilton.  We decided to get a flight, since we wanted to try them all. Pretty darn good!

Flight of Washington, Franklin, Jefferson and Hamilton brews

As we were walking around the city, Zoe said to me, "Mom, I'm glad I got my heart fixed."  All this time, I worried she would be angry and sad that we forced this journey upon her.  Today, she showed me that her soul runs deeper than I could've imagined.  She feels good, and is happy.

One of my favorite moments today, Zoe walking in Elfreth's Alley - the oldest residential street in the United States.  She walked up to this house and asked, "Is this Obama's house?"  Apparently, the oldest residential street isn't impressive enough, she wants to go straight to the big house...

Elfreth's Alley
Zoe's favorite on Elfreth's Alley, "Obama's House"

Tomorrow is Zoe's post-op follow up appointment with her cardiologist at CHOP.  We expect nothing but good news.  It's a bit surreal still; we couldn't be more pleased.  We're very much looking forward to heading home this weekend and seeing Emerson.  We've done lots of Skyping this past week, but I really could use a BIG HUG from this sweet princess!

See you soon, Emmy!



Monday, August 19, 2013

Hasta La Vista!

We stayed the course, and all is well.  Zoe woke to the echo tech, then the X-ray tech.  The echo tech showed us Zoe's repair.  Such an incredible sight to see!!!  It's truly remarkable.  

The best part, when the tech told Zoe that her "heart is smiling."  I laughed and he said, "no, I'm serious..." He turned the screen closer to me and pointed out the smiley face that her heart tissue formed on echo.  If I wasn't so ecstatic, I'm certain I'd have lost it right then and there.  I truly feel that Zoe's heart is smiling, so seeing that image (and I apologize in advance for not having my phone in hand to snap a photo) confirmed that her insides are just as happy as her outsides :)

               (Last chest X-ray!)

At morning rounds, the cardiac team continued to be blown away by Zoe's recovery.  We had a few candid conversations with practitioners who indicated the recovery is far superior to what they've seen as of late.  We are so stinking thrilled!

Zoe's cardiologist, Dr. Szwast, reviewed Zoe's pre-discharge echo this afternoon. The repair is perfect.  Her heart IS happy!

WE ARE FREE!!!  It's official... Less than one week post-Fontan and we're outta here!


Today, my wardrobe couldn't be more appropriate!  


We plan on enjoying Philly for a few days while we wait for Zoe's follow up appointment before we get the "all clear" to fly home.  Assuming no fluid accumulation around the lungs, we'll be back home this weekend!  

Aunt Stephie and Uncle Paul are coming Wednesday to help out with Zoe... but, instead of the original plan of being inpatient, we'll be able to visit, continue recovering and celebrate outside of CHOP!

Zoe is super excited to be leaving shortly.  She picked out her discharge outfit.  She thinks it's her perfect wardrobe for today - camo shorts and a Phillies tee!