Todd and I got checked in with the Fetal and Maternal Center at TCH Friday morning. Everyone we were meeting with had reviewed JT’s records and even knew about Ava. It was nice to be able to start from where we left off in Dallas. Our list of appointments started with a comprehensive ultrasound. The nurse was very sensitive and sweet. She identified the left-sided hernia then started to do regular measurements of all of JT’s organs and cutest little body parts. After about 30 minutes she asked if our Dallas doctors had said anything about the right side. We told her the right side was identified as an eventration. She agreed but then measured a “good amount” of lung tissue on the right side. For the first time since we learned of JT’s CDH, I was hopeful. Hopeful that we will beat this horrible, terrible monster of a condition this time. Hopeful that JT will qualify for fetal surgery that holds a 100% survival rate at TCH. Hopeful, the way I felt when Ava had her boxing gloves on and was fighting for her life.

Then the radiologist came in to take a look. She’s the one who analyzes the pictures the nurse takes. One issue with ultrasounds is that the liver and lungs can have the same appearance on-screen. Unfortunately, the radiologist showed us a hole on the back right side of JT’s diaphragm. The lung tissue identified by the nurse was actually JT’s liver. Is there any lung tissue?, I thought, but could not find the courage to ask at that point. She called it a bi-lateral CDH. I knew from my own research that the most common were left-sided. Then there was a small percentage of right-sided hernias. I had never heard of a bi-lateral hernia before. My hope escaped from me before I could even grab it.

Our fetal MRI showed the same results. The next appointment was an echo of JT’s heart. We met the cardiologist after the scan and received some good news. JT’s heart looked normal and was functioning properly. However, his heart is being “pancaked” in between his stomach and intestines on the left side of JT’s chest and the liver on his right side. Even though JT’s heart is good now, survival depends on how much and how functional his lung tissue is after birth. One word that she used to describe the severity of his condition was dismal. I can’t get word out of my head now.

Our afternoon had been scheduled with consults with fetal surgery and the chief of maternal fetal medicine. The cardiologist let us know we would just be meeting one-on-one with Dr. Cass from fetal surgery. He turned the computer on and showed us images that had been taken throughout the day. Then came the statistics: JT’s lung volume is 11%. Severe is classified at 25% or less. Another measurement for CDH babies is the LHR (lung-to-head ratio). Severe is 1.0 or less. JT’s is zero. And at that moment I felt like that’s about the amount of hope I had left in my heart. Zero. We spoke to Dr. Cass from our hearts. We told him we wanted to try and do everything possible to help JT. He was very compassionate but also straightforward. We do not qualify for their fetal surgery because of the bi-lateral hernia. Their study parameters are only for left-sided diaphragmatic hernias. However, they can consider our case for an off protocol surgery. Dr. Cass is confident in the tracheal balloon when there is a portion of right lung available to grow. He’s only seen a few bi-lateral hernias and could not be certain the balloon surgery would work. We all decided to let Dr. Cass present JT’s condition to the rest of his team to get their expert opinion on whether or not to be considered for the balloon surgery. If they say, “yes”, then our case is presented to a non-biased panel at TCH for consideration. This is a decision Todd and I cannot do alone. We should know next week if they think we can move forward in Houston.

Our trip to Houston was not what we hoped, prayed or expected. Now that I have had a little time to let this all sink in I’m starting to feel hopeful again. I will never let it go completely. I just misplaced it for a while. I will be thankful and hopeful as we continue to take things day by day.

Thank you all for your love, support and prayers.