night seizures

Every Thursday I look back at a specific day and time that was spent with my daughter Matilda as she waited for, received, and recovered from a liver transplant. She was in the hospital for 72 days and we remained in NYC until she turned four months old.

October 28th, 2012 - night seizures

About a week before, I got up in the middle of the night and saw what looked like a lady sewing a child's head. It was moments like that when my life seemed like a nightmare. I literally questioned myself as I told Tyler what I had seen or what I thought I had seen - wondering if it was all a dream.

For five weeks I had lived this nightmare. The pain I felt was nothing that Matilda was experiencing, and I never complained. But I was nauseous all the time. My body ached from sitting so tensely. My head pounded from the lack of sleep. And a permanent lump sat steady in the middle of my throat. Watching Matilda fade away was unbearable. I never got use to it. I never felt numb. I never felt comfortable.

I stood staring at Matilda, as I did most nights. So much of her behavior that day reminded me of how she was the first night we spent at Mount Sinai. Her eyes were glazed over and her tongue fell out of her mouth. She didn't look like my Matilda. She didn't look mighty at all. She looked as if she wasn't even there.

I showed the nurse, who showed the resident, who called the attending, who sent the specialist, who ordered the tests - that the nurse had begun preparing for all along. Matilda was suffering from seizures. Her ammonia levels were too high causing encephalopathy. Her blood pressure plunged to a nearly non-existent 20/10 before they got it back up and her blood sugar had sunk equally low (19).

Tyler and I stood holding hands as our nurse fought to keep Matilda alive. The resident that night seemed overwhelmed, maybe a little heartbroken. There was a lot going on to say the least, and although he did everything for Matilda, his eyes were transparent. He knew that Matilda was saying her goodbyes.

How much do you pump into a baby so small before you fold?

Lindsey, our nurse, was not convinced. She was determined to save Matilda. She worked fervently and made opinions clear of what needed to take place and when. She was fast, organized, and unwavering.

I was frozen in the chair next to Matilda's bed holding my breath. I didn't want to move. I didn't want to say anything. I didn't want the moment to pass. Because in that moment, as scary as it was, Matilda was alive. Tyler stood across from her watching the monitors, ready to help if anyone needed. He understood what everything meant and calmly read numbers to Lindsey as she floated around the room gathering materials and administering medications.

The night went on like this. The whole night. There never was a point where Matilda was fine. Because once her blood pressure and blood sugar were regulated, in walked in a small lady, with a TV monitor, a large black bag, and crazy hair. She was the lady I had seen the week earlier in the middle of the night.

It turns out that she monitors seizure activity by sticking leads to different parts of the scalp and weaving them into a cap which is then connected to a variety of machines sent directly to her office. She kept telling us to go to sleep. And even though I rested my eyes here and there, I kept watching her weave wires onto Matilda, onto my one month old baby. This was my life. And right then, my daughter was alive.

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