Boston

We had a week to prepare for our trip to Boston for the procedure for Jack’s heart. Amid COVID19, being 29 weeks pregnant, and it being the week before Christmas there was a LOT to prepare for. I struggled to focus. I didn’t sleep. Eating felt like a time-consuming task I didn’t want to waste time on. My mind raced all the time. Was this the right decision? Were we risking too much for just a chance? Will the girls be ok when we are gone? Will we make it back for Christmas? Oh my heart; what if we didn’t make it back for Christmas! There was no turning back, this was the decision we made for our son, it was the only answer. In that week we saw Santa, in fact he made a very special visit to our home to see the girls. We baked and decorated Christmas cookies. The girls had their last day at school before Christmas break and the parties that went along with that. We wrapped all presents and had them ready to stick under the tree. And we got in every single snuggle that we could with our girls before we left for 5 days praying that we would be home before Christmas. The love and support we received was amazing and the amount of people praying for us was breathtaking. There were prayers being sent from Canada all the way down to Mexico, from California to New York and everywhere in between. I needed them. And I felt them. As we boarded our flight the attendants said oh Mrs. Binder, we’ve been waiting for you, your seats have been moved let me show you to your seats. What she meant by moved was upgraded to extra leg room. We sat down and next thing we know the pilot leans down and introduces himself. Captain Beau Brant, “Mr. and Mrs. Binder a friend of yours reached out to me and told me about your situation. We wanted you to know we are all here for you and praying for all three of you. Please let us know if there is anything we can do to make your flight more comfortable, thank you for trusting us to get you to Boston safely.” He handed us a small gift that had a sweet card and cute stuffed airplane for Jack.

We looked at each other and both cried. We were so overwhelmed with kindness and support.

The attendant came back and offered me a blanket and snacks. She got Kevin a drink (for free) and a giant bottle of water for me. We would laugh because every so often Kevin would look down in the empty seat next to him and there would be a new snack or drink or something for comfort when we hadn’t even seen her pass us. She was very sneaky and working incredibly hard to take the very best care of us. With all the negative attention airlines had been getting because of masks and young children it was so wonderful to see this amazing service. They are all just humans like us, doing their best to serve others and protect themselves and their families. We arrived in Boston late in the evening and there were mounds of snow covering the city; they had just had a big winter storm the week before. Even with all the trauma my heart was feeling, this Texas girl still grinned with a child’s joy when I stepped out into that winter wonderland.

We didn’t have much spare time while we were there, but we did out best to enjoy what we had. Sunday morning we got up and explored a bit. We marveled at the beauty in the park and froze our southern toes. I had a fetal echo that afternoon with Dr. Wayne Tworetzky who was the head of the fetal intervention team in Boston. We had spoken to him on the phone previously and we really trusted his opinion. He was even more confident that we should do the procedure which was reassuring. He went over the procedure again and the risks and we just talked through everything. Every little question, all possible outcomes, he spent 2 hours with us on Sunday in an office that was otherwise closed. We were so impressed and appreciative of the level of service we had already received from all the doctors and staff at Texas Children’s and at Boston Children’s. We couldn’t have been in better hands and I thank God for putting us there.

The procedure was scheduled for Monday morning. We were exhausted but hardly slept. I couldn’t quiet my mind. So much fear, worry, and anxiety radiated through my body. And I missed my girls. I curled myself around my son and just prayed. December 21st, we went to the hospital and went through the motions, it’s honestly foggy for me and I don’t remember chunks of time. We met dozens of different doctors and nurses. There was going to be about 20 different people in the operating room with me. We were asked the same questions over and over again as is usual and we had plenty of opportunities to ask any questions. One question I specifically remember was about Jack. If his heart stops and they are trying to shock it to get it started again but it’s not successful, do I want them to deliver him preterm and continue CPR? Basically, do you want us to risk a preterm delivery to save his life. I had to decide between his life and not have a c-section. Of course, there was no choice, his life was already a life and I wanted them to do everything in their power to save him just as they would any other person. But it hit me hard to think I had the choice, that I had to make that decision. They came to take me back and Kevin and I squeezed each other hard, I hated leaving him alone. I hated thinking about him sitting there by himself with all this weight on his shoulders.

In the operating room there was so much going on and so many people. Every single person was incredibly kind, caring, and encouraging. I felt so scared and so weak, but it was ok because everyone in that room was holding my fear for me, and they were making me stronger. As I laid there numb, listening to my music through the headphones, tears quietly ran from my eyes. My anesthesiologist (Jack had his own anesthesiologist) sat at my head and dabbed my tears with a tissue. She would say, “are you ok, are you comfortable?” I would nod my head because physically I was. They had me listening to my music so that I could drown out the noises of the operating room and wouldn’t hear everything they were saying. I could hear bits every now and then. “Ok baby is in perfect position, ready to start the procedure...” “inserting the needle now...” “a little further, almost there...” “there, stop, looks good...” I turned my volume down just a little, this was it, the moment that changes our life. “let’s inflate...” And then, a chorus, gasps, “oh my gosh look at that! That’s amazing, look at the flow already…” It worked, oh my gosh it worked, they are excited, I can hear it in their voices, it worked, he’s ok! I turned my volume back up and praised God. The moment they opened his valve the song I was listening to was mine and Kevin’s wedding song. God makes everything so perfect, His hands in all the details is amazing to me. When they took me back to my room I got to see Kevin and smile; it was a success, we didn't lose our boy.

Dr. Tworetzky came in and told us the procedure went perfectly and there were zero complications. Before long I could feel my sweet boy wiggling around again as his anesthesia wore off and I knew we were going to be ok. We still had such a long road ahead of us, but this was our first triumph. We made it home to our girls on December 23rd and I felt relieved for the first time since December 10th.