Thursday, July 18, 2013

And So It Is... Fontan Prep

Not surprisingly, in anticipation of this final planned surgery for Zoe's heart defect, I've been doing lots of research, planning, and stressing. 

Zoe will undergo an intracardiac lateral tunnel Fontan.  Essentially, Dr. Spray will enter her right ventricle and finish the tunnel to complete her full-body circulation. Zoe's heart will look like the one photographed here (her right ventricle will have two parts - 1) a tunnel for deoxygenated pulmonary flow and 2) a chamber for oxygenated systemic flow, aka a lateral tunnel Fontan).  

(Note the very small/non-functioning left ventricle)
Following the Fontan, as her half heart is working double-time to make up the work the left ventricle is not able to do, Zoe will require a lifetime of care with cardiologists.  There are obvious risks which we've known from Day One, but this currently is our best and only option. 

As promised, we've created a "wish list" for Zoe - items to keep her distracted and busy during her hospitalization.  If you'd like to browse Zoe's list or send her a get well gift, feel free to visit the Amazon link HERE.  Our amazing friends in Philadelphia, the Jackleys, will be collecting the items and bringing them to us upon our arrival.

Another way to show Zoe that she's loved and supported is to send an eCard, which is offered on The Children's Hospital of Philadelphia's website.  http://www.chop.edu/ecards/ecards.cfm

And so it is. 

Pre-op Appointment, August 9th
MRI/Cardiac Cath, August 12th
Fontan, August 13th

Thank you for your love and support for our fighter.  She's gonna show us all, once again, that she's tough as nails.  In the next few weeks we'll be doing what we can, to prepare Zoe for what she's about to experience.  I'm all but certain, this may be the hardest part.  We've already begun showing her photographs of her first year of life.  She's obssessed right now with watching her First Year video and seeing "Dr. Spray and mommy!" and when her post-op photos pop up, she exclaims, "oh, that's not good!" quickly followed by a "Zoe's getting better!"

We're looking forward to getting past the "oh, that's not good" and onto the "Zoe's getting better" part.

I'm sure it'll take a while post-op before we see this beautiful smile again, but it'll come... and she'll be back, with a vengence!

Saturday, July 13, 2013

Beach Days

The highlight of our summer was our trip to San Diego, with the entire family.  A week full of activity and lots of time at the beach.

The girls loved playing on the beach and making themselves "mermaids" in the sand.  We visited the Zoo, Balboa Park, watched fireworks oceanside and enjoyed the no-demand week. 

Heart-shaped Fireworks!

While in San Diego, we decided to have a family photo shoot.  So glad we did!

 



Now that we're back, it's really time to start preparing for our upcoming trip to Philadelphia for Zoe's Fontan... no more denying it.  It's just around the corner. 

Many have asked what they can do to help.  My biggest concern is how to keep this little fighter pacified while recovering in the hospital.  So, we decided to create a "wish list" for Zoe on Amazon.  Items to keep her entertained and spirits up while recovering.  Stay tuned for the link to Zoe's wish list and an update on our Fontan Plan.

And, like Zoe's shown us through her amazing spirit from day one, we're going to trek forward and keep on smilin'!