Fontan Time

Today, nearly 3 years to the day we flew to Philadelphia with Zoe in my belly, we had an important cardiology appointment - a decision would be made whether or not to schedule Zoe's final open heart surgery ("the Fontan") or wait another year.

Before we left the house this morning, Zoe said to me, "We're going to see Dr. Stock, then we're going to see Dr. Spray."   No joke, the girl really knows her heart...

With some recent symptoms - purple lips and lowered oxygen saturations, my gut was telling me what my mind has denied for a few months now. Sure enough, Zoe's Fontan will occur this summer.

The details of the appointment for those who want the nitty-gritty: Her echo showed great function, zero tricuspid or pulmonary regurgitation, arch looks good and left pulmonary artery still smaller than the right.   Overall, she looks great and sounds great!

Thanks Daniel Tiger!

Her vitals: Good BP, normal EKG but oxygen sats were low (79-80), even lower than my most recent check at home... So, since her sats are low and coloring fading, Dr. Stock recommends we move forward now while she's strong and well, rather than risk heading into winter (cold/flu season) with low sats.

While Dr. Stock listened to Zoe's heart with a stethescope, she looked up at him, right in his eyes and said, "I want to be a doctor.  I want to fix my own heart."  I wish I'd been recording it.  It was the sweetest thing ever. 

Super cooperative Zoe!

CHOP received the "all systems go" signal and Fontan scheduling paperwork will be filed soon.

Zoe's added bonus:  she got a "purse" today - a holter monitor to record her heart rhythm for 24 hours. I'd noticed some slowing and rapid heartbeats and we felt it wise to monitor her heart rhythm for 24 hours. Quite a few kids/adults with single ventricle anatomy have pacemakers, but I'm hoping its either a fluke (related to illness) or nothing significant requiring a pacemaker.



None too pleased that her "purse" is "not pink!"

So, this is where we stand... mentally and emotionally preparing for Zoe's third open heart surgery.  And for fun, we're planning an early summer trip to Disneyland for Zoe's third and Emmy's fifth birthdays.  We've certainly come along way from packing up and relocating to Philly 3 years ago! 

We have several heart friends gearing up for their Fontans this summer, so please send good thoughts and prayers to Zoe and her friends as many of us enter an emotional and trying summer.

Thanks, as always, for your love and support.

Every Day is Awareness Day!

So, as much as I hate Congenital Heart Defects, we bucked up and did awareness raising this week.  Today is not only Valentine's Day, but International Congenital Heart Defect Awareness Day.  Phoenix Children's Hospital decided (with some prodding) to use the opportunity to share some awareness on their Facebook page, with Zoe as their helper.  I can't blame them, she's freaking adorable!!!

As pleased as I am that CHD Week is coming to an end, I have to say that every day should be a day to raise awareness.  I've seen significant strides since Zoe's birth in getting the word out about this horrific silent killer and great things happening nationwide, but we're far from our goals as a CHD community.

So, continue on soliders - our work is not yet complete!

Awareness What?!

Today kicks off Congenital Heart Defect Awareness Week.  I should be pumped up, right?  I should be shouting from the rooftops so others hear that nearly 1 IN 100 BABIES ARE BORN WITH A CONGENITAL HEART DEFECT.  I should be motivated to tell expecting parents that only 50% of CHDs are diagnosed in utero. 

The truth is, I'm not pumped up.  I'm angry.  As much as I love the heart family that has been my life raft for the past three years, I really wish I was still ignorant.  I wish I was one of those people that muttered to myself when seeing a million social media posts, "what the hell is a CHD?"  I wish I didn't feel guilty and brought to tears feeling as though bearing these feelings will do a disservice to my heart sisters.  But I can't help it.

I hate the fact that nearly every single day, for the rest of my life, I'll cross paths with a mother who will watch their child die, watch their child suffer.  Even I, the most strong-willed and stubborn woman, can only endure so much. 

As much as I'd like to retreat from this world.  I cannot.  I have a duty to warn.  A duty to educate.  A duty to empower.  It is my calling.

So, even though I hate you Congenital Heart Defects, with every ounce of my being... I will give you my fullest intention this week, February 7th -14th, so that someday, a mother can look back on this blog and say, "Oh my God, I cannot believe children were dying on a daily basis from heart defects.  Thank God medicine has evolved since 2012 and we don't have to live in that fear."

Zoe Madison, living with half a heart.
My trailblazer.
My inspiration.

Living Well

All is quiet on the Lihn front (metaphorically speaking, of course.)  We've been living well this winter and enjoying more time outside than in.  Although, with the recent spike in cold/flu season, Zoe's been on a pretty strict lock-down.  There's just no reason to risk it, since the flu usually ends with a hospital admission for kids with half a heart.  No thanks!

We did get out of the house and headed up north for the Polar Express this winter.  Zoe really loved it.  She loved the snow and bundling up.  What she didn't like was the wind.  We pretty much found ourselves snowed in and while walking from the car back to the hotel, Zoe yelled, "THIS IS STUPID!"  I guess she is an Arizona girl, regardless of her birthplace of Philadelphia.

 So, we made the best of it!

We had a wonderful Christmas but shortly after began some minor sniffles and coughs, which we're still getting over four weeks later.

We, of course, celebrated President Obama's Inauguration.  Emmy's love of politics never ceases to amaze; I think her DNC appearance will serve her well in the future.  And just when I worry she's not really learning anything in preschool, she busts this out on us!

 

I'll attempt to update more often, but just remember, when things are slow on the blog, that is good.  It means we're Living Well! 

December 9, 2009

Three years ago, today, I learned about congenital heart defects.  I learned that a human being didn't require a whole heart to live. 

I wish the doctor that first diagnosed Zoe had a crystal ball instead of a medical textbook opened to the "critical aortic stenosis" page.  Had that doctor been able to relay all that our family has been through - both the triumphs and tribulations - I most certainly wouldn't have believed him. 

Three years ago, today, I never could have imagined our lives as they are now.

Zoe's Heart changed everything.  Literally.

Some days I'd do it all over again if I had to; some days I can't take any more.  I can swing from pure anger to pure joy in a manner of minutes.  It's a bipolar existance, really.

December will always be an emotional month for us.  It's the month (three years ago) we met our miracle workers.  Dr. John Stock who led us to Philadelphia and follows Zoe in Arizona, Dr. Anita Szwast who we lean on for Zoe's most critical times and Dr. Thomas Spray... well, he's the miracle worker who's reconstructing her tiny heart.  We were told he was the "world's best" and I've seen his handy work manifest in Zoe for the past two and a half years. 

The second half of my day today, as the clock approached 4:30 p.m. (the approximate time we learned that our baby would have to fight like hell to live), I fell increasingly silent.  It's nearly impossible to explain how vivid that moment is, and how easily I can recall it in my mind.
I played the diagnostic memory out in my head, ever-so-briefly, today.  That day and the days that followed were devestatingly hard.  Those days of devestation is what keeps me working like crazy for Sisters by Heart. 

Life has thrown me some significant curve balls, but I will never stop swinging.  As Caleb and I said from the beginning of this journey - "Whatever it takes..." 

We're proud of our little family - of how far we've come in the past three years. 

This afternoon, right about 4:30 p.m. as we were shopping at Target, a man walked up to us and said, "This might sound really crazy... you don't know me, but I know your family well.  I've been following you guys for some time through your blog."  We chatted for a few minutes.  We introduced him to Zoe.  The timing couldn't have been more perfect.  Three years later, almost to the hour, a complete stranger was brought to tears, in public, sharing in our journey, speaking of Zoe's incredible inspiration. 

Thank you, Chad.  It was a pleasure meeting you. Your timing was impeccable.

(Click on photo to enlarge)

     

Hope in a Dewar

This weekend, we had an opportunity to visit and tour the CBR facility down in Tucson, Arizona.  We're big advocates for cord blood banking, and banked both Emerson and Zoe's cord blood.  By the time Zoe was born, we also chose to bank cord tissue (rich in the type of stem cells used to regenerate damaged heart tissue in adults suffering a heart attack.)  We asked a few of her treating physicians about banking; all informed us there was no stem cell therapy for HLHS at the time, but "who knows what we'll be able to do 10 years from now."  With that, how could we not bank?  Less than 3 years later, we're already seeing progress with HLHS and stem cell research. 

The girls weren't half as interested in touring the CBR facility as Caleb and I.  They couldn't care less that their stem cells were being stored in "dewars" containing liquid nitrogen, or that the backup generator for the entire facility was ginormous, or that the lab which processes all incoming stem cells was on the second floor, or that the cells inside the dewars have already given hope and life to hundreds of families.  Zoe made her disinterest abundantly clear during the near 45 minute tour. 

Thankfully, before the tour, we were able to get photographs of the girls in front of their "dewars" which stores their cord blood/tissue.

Emmy and Zoe sitting in front of Zoe's cord blood dewar

The girls, doing a bit of filming for CBR

Faux excitement about stem cells

Family photo in front of Zoe's cord tissue dewar

Good luck hug that we'll be able crack open dewar 49 someday

Roaming the halls and checking out the lab

 

During the tour, I was impressed with the wall of thanks - a wall with thousands of caregiver names, all of whom collected cord blood and/or tissue for banking with CBR.  I had to snap a shot of not just the wall...

But of the physician who collected Zoe's cord blood and tissue, Dr. Victor Zachian at the Children's Hospital of Philadelphia.  I sure hope Dr. Zachian's hard work on May 11, 2010, in pulling the cord blood and collecting a cord tissue sample, pays off down the road.

The area where the dewars are stored is quite impressive.  Each dewar holds over 8,000 samples - that's a whole lotta hope inside one dewar!

At the end of the tour, I caught a glimpse of Zoe staring at the dewars.  I hope she was willing medical advancements at that moment - so we can use her stem cells to someday strengthen that half a heart and keep it beating strong inside her tiny chest.



A glimpse - on the brink of stem cell therapy

Totally Unacceptable...

Ok, so I realize it's been ridiculously long since I updated...  Things are a bit busy.  Far too busy.

I've come to the realization (with some help from others) that I tend to keep myself over-booked so that I don't have time to "think."  When there is quiet time, it's a bit scary.  In those quiet moments, I actually have time to turn around and stare the boogie-man in the face... HLHS.  When I'm busy advocating, working, volunteering, being mommy to two rambuncious girls, etc. I can fill my mind with "other" things.  It's much easier that way (or so it seems.)  It's been suggested that a concerted effort to breathe once in a while and face the realities of Zoe's heart defect might be a wise choice.  I have an uncanny gift of disassociation.

Don't get me wrong.  I'm faced with it every day (the scar taunting me when changing Zoe's clothes or giving her a bath, when holding her cool hands or seeing her blue fingernails) but those cues are easier to register tangentially than the realities of what those cues really mean.  With Zoe's next open heart surgery, a year or perhaps two years away, I like to forget.  Forgetting, however, doesn't assist in the grief process (which never really ends with HLHS families.)  Grief starts the day of diagnosis and continues throughout our entire lives.  It's hard work.  It's exhausting. 

So, I fill my day with "others."

One of my most favorite "others" is politics.  I'm so extremely relieved that President Obama won re-election.  It means a heck of a lot to our family, and so many families I've come to know and love.  Even the ones who don't realize (yet) how beneficial the next four years will be with Obama as our nation's leader.  I'm ecstatic, proud and so honored to have played a small role in the campaign.

The second best part about Obama's re-election: my conversation with Emerson the morning after Election Day. She asked many questions, particularly geared towards those who were "sad" about the election results.  It was so nice to have an opportunity to talk to Emerson, my four-year-old, about what it means to be respectful, humble, to live with humility, and talk to her about what it means to live in a democratic nation. I think the next four years will be a great learning experience for all of us, our children included.

Since I need to get back to busy, I'll leave you with photos from some of our "other" activities which keep us away from the boogie-man...



(Quality time with Uncle Bri)

(Enjoying Halloweening)
 

(Spending time in Northern AZ)

 

(Play dates - HLHS troublemakers on the right...)

(HLHS troublemakers on the laps!)

(Comparing the Giants)

(Attending the Congenital Heart Walk!)



(Raising lots of funds for CHD Research/Awareness!)