Friday, September 10, 2010

Testing, testing...a day at CHOP

Our long day technically started at 3:30 a.m. ET when we finally went to sleep. The 3 hour time change is not doing us any favors. Between the stress and the beeping from Zoe's pulse ox monitor, a good night's sleep was not ours to have. We awoke at 7 a.m., got ready and headed to CHOP for a day of testing.

Zoe's day went a little something like this: weigh in at 5.3 kg, oxygen sats tested (multiple times), met with researchers, EKG, chest xray, echocardiogram, consult with Nurse Practitioner and Dr. Szwast, blood work and ultrasound. Quite a busy, busy day! At the end of the day - 5 hours altogether - Zoe passed out on the ultrasound table.

Even after the ultrasound tech finished, Zoe continued to sleep.

We opted to participate (Zoe, unknowingly) in 2 out of 3 research studies currently ongoing at CHOP. The first, is a simple blood test (which they will obtain during her cath) to study Zoe's DNA. The purpose of the study is to investigate how genes contribute to the development of heart defects and to study their role in clinical outcomes. Although heart defects are often diagnosed and successfully treated early in life, little is known about why such defects occur. In addition, researchers do not understand why children with the same type of heart defect have different clinical courses and outcomes. Studies suggest that genes contribute to the cause of heart defects and influence how each person does clinically. In addition to Zoe's blood, Caleb and I will also give blood for this study.

The second study Zoe will participate in is to assist researchers in identifying the presence and function of cardiac factors that exist in the human heart. There are specific molecules that exist in the body that are responsible for the growth and renewal of specialized cells. Physicians at CHOP have identified some candidate molecules that appear to fulfill the criteria for cardiac growth factors and may give rise to congenital heart disease. Researchers aim to discover how these molecules work in the heart. This study will require Zoe to give blood and heart tissue. Both items will be taken under anesthesia during her Glenn. Dr. Spray will remove heart tissue, as is routine in the Glenn. Instead of tossing it in the trash, Zoe's heart tissue will be used to help further understand these complex CHDs.

The third study, which we've opted out of, studies cerebral blood flow in the brain in single ventricle hearts. The purpose of this study is to understand how cerebral blood flow is affected at different stages of single ventricle surgeries and how it affects neurocognitive development. Zoe would have to undergo an extra hour of anesthesia and 2 MRIs one hour before the Glenn. Caleb and I felt that with all she has been through, we didn't want to put additional stressors on her, particularly one hour before the Glenn.

It has been a long, long day and we are exhausted. Time to get to bed...but first a few pictures of Zoe's travel adventures from yesterday.

Zoe's cocoon, to keep germs away, in the airport

Zoe in her BFF shirt, to honor her BFF Mia Grace whom we miss dearly

And a yummy bottle in flight, to help pass the time

Our weekend will consist of rest and relaxation before the big week ahead. Sunday football and naps! We'll keep ya'll posted as the days progress.

Love from Philly,
The Lihns


  1. Zoe is so beautiful!! Get lots of rest this weekend.. Monday will be a long day. I'm still recovering from our cath day.

    I think it's great that you have the opportunity to be a part of such a great study into CHD's. Good call on passing the third one.. I don't think I could do it either.

  2. happy to hear every thing is on track...lots of hugs,prayers,and happiness for the weeks ahead!! <3

  3. Glad you all made it safe and pre op went so well. We will be keeping you in our thoughts and prayers on Monday!!