Chris & I woke early this morning to get ourselves ready for our first appointment with the Houston medical team at Texas Children’s Hospital. We wanted to be fully prepared and were feeling overwhelmed on how to get there, find a parking garage, and locate the right building. Needless to say, we pulled into the parking garage an hour and 20 minutes before our appointment. On “Elliot Time” as we like to call it, that was a miracle in and of itself. We are always late, but definitely not today. We found the building, rode the elevator up to the 20th floor of the West Tower, and as the door opened our experience truly began.
A woman wearing a red shirt who worked there was waiting for the elevator to go down and she smiled at us. She said, “Are you Kathryn?” She introduced herself as Yvonne, the woman that had called to coordinate my appointment on the phone. She gestured where we should check in and said that she would page the doctor to see if we could get an earlier start. We were amazed at the perfect timing that as we walked out of the elevator God placed someone there that would recognize us, direct us, and give us a gleam of hope with her smile. She got onto the elevator and headed to wherever she was going and there we were opening a set of glass double doors to the Cardiology Care Center. As we went through the doors, I began to cry. I sat at a small couch right there at the entrance and Chris began to softly speak to me. It was the overwhelming combination of, “Why in the world are we here” and “thank you Jesus that we have access to this kind of extremely advanced care.” We checked in and waited for our names to be called. The room was filled with all ages of children and their parents waiting to be seen. Out of one of the scanning rooms came walking out a boy about 4 years old with silly google eyed glassed and a sucker. Laughing as they sat down across from us I couldn’t help but grin at his adorable little face. He removed his glasses and his parents sat gently talking and joking with him. I kept praying, “Lord let this be us in four years, please let this be us.”
Our names were called by Lisa who was one of the women doing our echocardiogram. She smiled at us and had such a gentle voice that it calmed my nerves almost instantly. We went to the scan room and there we saw Dr. Nancy Ayers for the first time. They were wonderful to explain to us exactly how the appointment would go and laid out a plan as far as what they would be doing before, during, and after the scan. They must have read my type A brain and knew that I only function well with clear communication and a good plan. We started the scan and they were both so wonderful to make me feel as comfortable as possible.
The room was quiet most of the time as they studied the heart, took the pictures they needed, and searched around for answers. Chris sat holding my hand the whole time and I just began to pray over his little body. I only shed a few tears during the exam, but as we ended Dr. Ayers was wonderful to take several baby pictures for us to take home. We got a profile shot, some toes, his fist, his heart, and his little face. As we saw his growing body on the screen it gave me pure joy. It’s hard to explain how much you fall in love with your little one even as they grow in the womb. I will say that I have a unique bond with Jackson since we found out about this heart condition. I think my already bursting with love mothering heart grew about 10 times the size for him the day we found out that he had his “special” heart.
We consulted with Dr. Ayers after that in her office where she explained that he does have CCTGA (look to the right of the posts to see more about his condition with links). However, they are highly optimistic that because the condition of other worrisome parts of his heart are doing fairly well they have extremely high hopes for his survival. We do know that he will need a pacemaker at some point in his first year of life, but an exact date will have to be figured out at a later time. Carmen, a nursing coordinator for the fetal center joined us during our consult where she explained that her role is coordinating every step of our care from appointments, to questions, to getting us linked to the Ronald McDonald house, etc. We call her our “new best friend.”
She took us on a tour of the facility along with St. Luke’s where I will be delivering and all the intensive care units where Jackson will receive care. We walked through one of centers where there were rows of beds of premature babies, heart babies, and other babies with difficulties. She showed us the type of bed that Jackson will have and explained to us that we will be able to touch and hold him while he is being monitored. This was like music to my ears. My heart skips a beat to even think about holding him some day. Weeks ago we were told the odds all pointed to a stillborn birth and now today to be told that I will be able to hold him alive was like the world’s greatest gift.
Carmen answered so many questions for us and was so extremely helpful. Since we found out about Jackson’s heart I kept asking God, “when will I feel joy, real joy again?” I have had my good and bad days since finding out, but even on my good days, I still feel a very different joy. I can honestly say I felt real joy today again. I felt hopeful.
To all of the staff at Texas Children’s Hospital (Dr Nancy Ayers, Lisa, Yvonne, and Carmen) you are incredibly gifted and wonderful beyond words. In a matter of hours you took us through an amazing experience that I will never forget. It was such an advanced facility medically but at the same time such a sympathetic and caring one as well. There are no words for this team of people who are fighting with us to save Jackson’s life. I feel honored and blessed to be part of an amazing work that God is doing through Jackson.
May 19, 2011. Diagnosis and option to terminate.
June 17th, 2011. New diagnosis. Hope Returns!
?, 2011. Jackson comes home.
Jackson. Defined as my God is gracious. We believe….. Lord, be glorified!