ON THE PRECIPICE

It has been a week of life and death, and will continue to be for some time. Lula has contracted RSV and has been in the hospital since Saturday. What we thought was going to be another respiratory infection has turned into a near death illness.

In addition to RSV and pneumonia at several points Lula had what appeared to be several severe seizures. By Monday her pupils were 2 different sizes which is commonly a sign of catastrophic brain damage. When Sam and I arrived she was having difficulty breathing even with a BiPap mask on. The next step if she couldn't maintain her O2 levels is Intubation. It is the most painful moment of my life. Sam and I agreed that we did not want to intubate her, that this beautiful little girl had fought harder than we ever could have asked and that it wasn't fair or right to force her to stay alive. We signed the papers for DNR and DNI. I could barely hold the pen.

They managed to stabilize her breathing on the bipap. Sam and I stayed with her in the ICU that night, thinking it might be her last night. Somehow we slept a little. The Bellevue ICU is small and basic. It has the pallor of a public school and did not even have the ability to perform an EEG. But the staff was remarkable, attentive, warm, caring, incredibly thorough. We didn't really want to leave but lula needed an EEG so after some political wrangling between attendings she was transferred to Cornell where we have been ever since.

That night I went home with a palpable, indelible pain that not even Roans charming antics could temper. I began to see how empty our lives would be without Lula. As crowded and overwhelming as her schedule is, it has created a rhythm that we all live by. Once Roan was asleep I had nothing to do. One dinner, one bath, one bedtime felt so empty. We would no longer need my mom to stay over two nights a week. There would be no night nurse, no endless stream of therapists and meds and doctors appointments. We never wanted any of it, we only ever wanted two healthy children, but Lula has created an extraordinary life for all of us. I have never been so aware of her immense influence.

I woke up the next morning to the thought, once again, of our lives without Lula. Would I still say I have twins? Would Roan remember her? Would he always feel her presence, having lived intertwined with her for 9 months in utero?

Amazingly when I spoke to Sam a short time later the EEG results looked good. She was not having seizures. The CT scan had shown nothing to indicate brain swelling or bleeding. Her pupils were reacting and although uneven they had actually switched so the one that had been smaller was now bigger. She has utterly baffled the doctors with this. I am so glad that we did not intubate her because I know that Lula has chosen to fight to be here. We are helping her in every way we can but we are not doing it for her.

She is still critically ill but the RSV and the pneumonia are things that she can overcome. If she does get through this, however, she will still be Lula with all of her deficiencies and weaknesses and conditions. She will be vulnerable to this for the rest of her life and we all have to live here with her on the precipice of life and death as long as she chooses to be here with us.
Right now she is peaceful and calm. She is hooked up to so many things I can't really pick her up. Now we wait and see. We are taking things one day at a time.