Tehilla is still sleeping on and off and groggy when awake. She took one sip of water and then later threw up. I insisted the nurses put her back on fluids.
Now that the initial disheartening news has had time to settle, we are feeling a bit calmer.
We're waiting to hear from our doctors the decision that they have come to. It's clear that this situation is more complicated than anyone thought. We won't hear anything until tomorrow.
A dear family friend wrote to Ron and me and said something helpful. He said, "Whatever decision you and the doctors make, know that it is the right decision."
We have, in fact, heard these words of wisdom before. When I was pregnant with Tehilla and we were gathering information to make an informed decision about whether to terminate the pregnancy or not. We were consulting with my kids' previous pediatrician who we had a close connection to. She was advising us and said, "No matter what you decide, know that it is the right decision."
At the time, they were the most helpful words to a very confusing problem. I think that they are comforting now too.
Whatever the decision is, it's the best for Tehilla and we will hold strong in knowing that.
I was chatting with a fellow heart mother, here in the hospital. Her son is 15 and has a different single ventricle CHD. He had the Glenn and Fontan and is doing great. I even asked him if he plays sports and he responded, "No, but that's just because I don't want to. I'm just not interested in sports. But I like English! Keep talking to me in English."
While talking to him and his mother, I was reminded how outstanding our medical team is. His mother even admitted to overhearing me tell our cardiac nurse the results of the catheter and said, "Our doctors are the best. Your problem just means they will have to get creative. But they will find a good answer."
She is right and I needed to hear that.
Our prayers and deepest desires when we started this journey was, "G-d, please let her live. Let her survive so that when people hear about the little girl with half a heart, they will praise You."
That will always be our prayer and that was why she was named Tehilla which means praise.
Shoshana, ever since I "met" Tehilla, I think about her every time I say tehillim, not only for refua but during all the praise parts of davening. She is my daily reminder of the amazing, amazing blessing that God gave humanity of what Rav Soloveitchik calls "Majestic man," the aspect of humans that is enabled by God to achieve miracles of science and technology that save so many lives. What God has enabled medicine to do today is simply staggeringly miraculous. When I say "Hodu l'Hashem ki tov," I always think of Tehilla and her heart buddies. And when I think of Tehilla and her heart buddies, I always think, "Hodu l'Hashem ki tov!" I hope you and Tehilla both rest well tonight, have a calm return home tomorrow, and hear only the most ideal news about the Glenn.
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