News from the World of Sophia

Sophia is three weeks old today!

Alas, she's still in the hospital—the third hospital, actually. She started having seizures about 12 hours after she was born. At first the doctors and nurses thought it was a reflux reaction, but overnight observation after her second day led them to transfer her to a bigger hospital for more thorough tests. They had her on antibiotics and phenobarbital (an anticonvulsant) for a couple of days and the seizures stopped, so they stopped the meds. Sophia began feeding by mouth around this time, too. She'd had difficulty with either breastfeeding or bottle feeding because the medication made her lethargic, so feeding on her own was a big step. It was beginning to look like we could take her home soon. Unfortunately, after about four days, the seizures started again. They put her back on the meds and began running tests again.

As far as the tests go, she's had the gamut: MRI, CT scan, blood work, EEG, and a lumbar puncture, among others. She's also had what they call a video EEG; this involves not only hooking her up to all kinds of sensors and electrodes, but recording video of her reactions and general behavior. It's a 24-hour process, and during that time, she must be disturbed as little as possible. That means, among other things, no holding by parents. Nancy was pretty shaken up when this happened, especially because the hospital hadn't informed us exactly when they were going to start the procedure. So when Nancy showed up at the hospital only to be told she couldn't hold Sophia that day, it was really for her.

Anyway, they transferred Sophia to the local Children's Hospital yesterday so that she could get more direct contact with the pediatric neurologists. Their plan, once the holiday weekend is over, is to run another battery of tests, including things they weren't set up to do at the other (second) hospital. They took a blood sample yesterday; Monday's schedule includes another lumbar puncture and possibly another round of video EEG. They have a lot more experience dealing with this sort of thing here, and they have a lot more resources to help them do it. So we're optimistic they'll finally be able to nail down the problem and determine why she continues to have the seizures.

There is good news in all of this. First, the seizures aren't severe. Her breathing and heartbeat remain strong during the episodes, so the risk of long-term damage is minimal. Second, with all the tests, the doctors have been able to eliminate several of the more worrisome potential causes: tumors, intracranial swelling, infection, and the like. At this point, they think the cause of the seizures is most likely either metabolic (which they may be able to treat with medicines or supplements) or developmental (which she may just have to grow out of). Part of the reason for tomorrow's lumbar puncture is to check neurotransmitter levels to help clarify those options.

So the most recent update is this: Sophia is now on phenobarbital, Keppra (another antiseizure medication), occasional Ativan (yet another antiseizure med), vitamin B6, and a B6 derivative called folonic acid. As of this evening, she's had only one seizure in the last 48 hours and is taking almost all of her milk by mouth. She's maintaining body temperature and has been moved out of a warmer unit and into a standard hospital crib. Overall, she's doing pretty well. If she continues to eat well and doesn't have any more serious events, we may be able to bring her home soon and treat the seizures on an outpatient basis.

We are hopeful.

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By the way, here are three more pictures. The first two were taken today, the third, a few days ago. Enjoy!