Friday, April 12, 2013

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.


  1. You've come a long way baby!! As always, sending happy thoughts and prayers to AZ!!

  2. We will be praying for Zoe and her friends for a successful surgery and quick recovery. Very wise beyond your years Zoe. We send you lots of kisses. And have a wonderful birthday in Disney. We just celebrated Sofia's second birthday there too!

  3. We will keep Zoe and the Lihn family in our thoughts and prayers. I enjoyed your comment about Zoe "really knowing her heart." I have a 7 year old heart baby and he is so wise beyond his years-an old soul we like to say. He recently begged me to take him to the doctor (never does this)because he was not feeling well (he ended up having Influenza B), and I thought- wow, this boy knows his body. I also found it to be bittersweet, finding so much confort in his doctors. I wondered if most heart babies want to be doctors and also feel such a sense of comfort from them.

    I also wanted to thank you for all your work and efforts in helping with the new health care laws. My friend recently lost her job-she carried the health care insurance for her family. They are now on COBRA and have been plagued with paper work, but really are so blessed that the new laws are working for them. She has an 8 month old with HLHS and I just kept thinking how blessed they are that they don't have to worry about the "pre-existing" condition when applying for new health care coverage. I know you were a big part of helping make that a reality-THANK YOU. All the best to you and your family. We will be thinking of you...Love, Kristen

  4. Stacy, Steve's Fontan surgery went so well, even as an adult -- please keep us posted!
    Barb G