Dear Family and Friends,
I wanted to update everyone on some recent consults and tests we’ve had with JT. Todd and I went back to Houston for further consult, the family meeting we never had before, at the beginning of July. Fetal surgery was still being considered by the doctors and the fetal review board. During our family consult we received so much more information about the severity of JT’s condition, risks and possible outcomes. Unfortunately, we are talking about statistics gathered by few bi-lateral hernia cases since they are so uncommon. JT’s condition was classified as lethal. I kept thinking, couldn’t they come up with a better word? At best case scenario, they could expect fetal surgery to double the size of his lungs. So, it could bring him from 11% estimated lung volume to 22% which is still classified as severe. We would be required to stay and deliver in Houston which meant months to possibly a year in the hospital. Our consult lasted about two hours and we had questions answered and support given by expert CDH doctors from around the world. It was informative and we needed to hear these details. We had the following week to make our decision, again, about fetal surgery. That weekend Todd thought we should have one more MRI in Dallas to see where lung volume was 4 weeks after our last MRI. If his lungs had grown we would move forward with fetal surgery. We had counseled with our pastor and found some peace and comfort in his words. We will have all the information we need to make this big decision for our family, for JT.
The following week we were once again going over MRI results with Dr. Twickler. She could not identify any lung tissue on the left and estimated only 6% lung volume on the right side. Tears were shed by all 3 of us. It was quiet in the dark room that displayed images of JT across computer monitors. There was not much to say. Our hearts were breaking as our minds tried to wrap around, why, why, why?
As sad as the test results were and as hard as it is to think about the severity of his condition, I went to bed that night somewhat relieved. Relieved that we made the right decision, although an almost impossible one, for JT. I let go of the anxiousness I had been living with since we found out JT had CDH. I told Todd the next day I wanted to enjoy the rest of our pregnancy and time together with JT. I want JT to hear his brothers laughing as much as possible. I want JT to hear the ocean. We are headed with the boys and my parents to Galveston next week. I pray with JT, I sing to JT and I talk to him to let him know we will always be together. If I cannot hold you in my arms for long, I promise I will hold you in my heart forever.
We had an appointment today with Dr. Lo, who will be delivering JT. She’s a dear friend and will hold our hands through this process. We talked about some details of comfort care at delivery. I don’t think I can write about those right now. We choose a special date of October 2nd for induction. My Grandfather, Willis, and Great Uncle William were born on October 2nd.
We sincerely appreciate the continued support and prayers from our family and friends. A card, phone call, text or inspirational gift will arrive at just the right moments. Even a neighbor on my doorstep to spend a few hours talking about nothing and everything can keep my chin up. Todd and I are truly blessed with the most thoughtful, generous and kind family and friends.
Love to each of you,
Jennifer
3 boys and an angel 