Sunday, July 29, 2012

A Little Bit of Everything

On Friday morning, our first order of business was to take Zoe to CHOP to participate in a research study.  We dropped Emmy off at Poppa and Grandma's room and took Zoe for the three block walk from our hotel room to CHOP.

Shortly after arriving at CHOP, we met with a cardiologist who interviewed us, examined Zoe and took several measurements of her legs.  She also had an ultrasound of her abdomen and both legs.  The study director is Zoe's interventional cardiologist, Dr. Glatz.  The purpose of the study is to look at potential damage to the anatomy from catheterizations in infants younger than six months.  We always knew Zoe had a fully occluded femoral clot in her left leg, but we didn't know exactly what, if any, long term complications she'd experience as a result.  We learned from the leg measurements that her clot leg is 2cm shorter than her other leg.  According to pediatric standards a leg discrepancy of greater than 2cm typically requires some level of treatment.  Even before this study, Zoe's physical therapist observed a discrepancy and recommended we consult with an orthopedic physician.  Since we knew we were traveling to CHOP, we decided to squeeze in an ortho appointment.   We will find out on Monday morning, what the orthopedic surgeon recommends for her discrepancy.  After we completed the elements of the study, the research assistant who coordinated the testing, told us that Dr. Glatz wanted to come say hi, and see Zoe.
We couldn't convince Zoe that Dr. Glatz wasn't going to try and cath her.
During our conversation with Dr. Glatz, he indicated that, from what they've seen, of kids with post-cath leg clots, approximately 90% of kids have them absorb into the body. Zoe is in the 10% who's clot remained.  The clot is the likely culprit for the leg length discrepancy.  Dr. Glatz said that Zoe's 2cm discrepancy is one of the bigger ones they've seen so far in their study.  Although she obviously didn't come out unscathed from the cath she had at one month old, it was necessary, and life saving, since it discovered her narrowed BT shunt which, if not discovered when it was, could have led to her death.  One of the many reasons we love Dr. Glatz.

After spending a few hours at the hospital, we decided to head to Sesame Place, for some fun.  It was a bit humid, but the girls had a blast. 

Zoe loved the carousel. 
Which Elmo should I get?
Keeping cool in the tide pool.
My sister and mom riding the coaster.

On Saturday, Caleb and I went to CHOP for their annual Heart & Mind Day.  It is designed as a day of learning for parents and patients affected by congenital heart defects and an opportunity to interact with CHOP doctors and nurses.  We enjoyed socializing with many of our heart family friends.

HLHS Moms - Katrina, Jackie, Stacie, and me.
We also learned quite a bit.  Two of the quick facts, that we found interesting, and wanted to share are:

The number of babies born each year with a single ventricle (including HLHS) is equivalent to the number of new cases of childhood leukemia, 2,500 a year.


In the 1970's HLHS was 100% fatal shortly after birth, in the 1980's it was 80% and today it is down to 20%.

While we learned quite a bit of positive information, we also learned that single ventricle children are, in large numbers, demonstrating hearing loss starting around age 4.  They don't yet know the reason behind this.  We also learned that liver damage in HLHS children is more prevalent than originally thought.  Because the liver is directly below the heart, and because the HLHS heart, even after the third surgery is a less than optimal circulation, the circulation in the liver is forever compromised.  Now that surgeries are resulting in greater numbers of children surviving into, and beyond, school age, physicians are collectively appreciating greater numbers of liver scarring.  This is one of the main factors behind delaying the age of the third surgery (the Fontan) from 18-24 months to 3-4 years. 

I'm glad we were able to attend Heart & Mind Day, and we definitely want to attend again in the future.  While we were learning and socializing, my parents and sister took Emmy and Zoe to The Crayola Experience.  The girls LOVED it and brought home lots of cool arts and crafts.

The girls sent us a message while we were at CHOP

Saturday evening, after we all met back at the hotel, we decided to get cheesesteaks from Jim's Steaks, the best in Philly.  Soooo good!!
Zoe was a fan of the cheesesteak with Whiz and onions.
On Sunday, we had brunch at White Dog Cafe, one of our favorite brunch spots in Philly.

Someone pointed out that Caleb and Zoe appear to be mimicking two of the characters in the painting behind them.  Total coincidence.  

We then walked into Center City for a day of hanging out in the park and shopping. 

Emmy and Zoe tackling Poppa.

Aunt Stephie and Zoe smelling flowers.
Emmy and Zoe looking for the perfect flower.
Exploring the park.
Family photo. 
The photos above are all from Rittenhouse Square Park.  When Zoe was a month old, after we were discharged from CHOP, we were required to stay in Philly for a week, for observation, before we flew Zoe home.  Besides getting from CHOP to our hotel, and our hotel to the airport at the end of the week, Zoe was out of our hotel room for about 10 minutes.  Just enough time to get a picture of her in Rittenhouse Square Park.  Since then, every time we come to Philly we try to get the same picture.  Here are pictures of her, at that same spot, at one month old, 14 months and 26 months:

As you can see Zoe has come a long way and is growing up quickly.  To give her the best chance at a long life, on Monday we return to CHOP for a long day of appointments.  At 8:30 Zoe has an appointment with orthopedics to assess her leg length discrepancy.  Then at 10:00 she has her first appointment with the NeuroCardiac Care Program (NCCP).  As part of the NCCP, in a span of four hours, Zoe will be seen and evaluated by a pediatrician, cardiologist, neurologist, physical therapist, occupational therapist, speech therapist and a nutritionist.  By the end of the appointment, they will author a joint report assessing Zoe in each of those areas.  We are anxious to see how Zoe's NCCP appointment goes.  We will, of course, post an update on Monday, after the appointments.  

We're having a great time in Philly and look forward to continuing our tradition of annual trips, for many years to come. 


  1. LOVE the pics. Looks like you guys have been enjoying your time in Philly! Saying many prayers that the rest of your appointments go well and the the ortho has some news on Zoe's leg.

  2. Replies
    1. You have a beautiful family as a only child I feel I missed out on a big family.