April, 18

It seems that every 5th day is rough. And sadly, today was the roughest yet. Seizures began lightly this morning and began increasing in intensity throughout the day. By 4:00pm, she had seizures lasting 15 minutes followed by sequential twitching lasting 45 minutes--you could call this one long clinical seizure. She would only have about a 15 minute break between seizures.

The Doctor isn't really sure what caused this series of episodes today. Though there are some clues. Last night she spit up a good amount of her Phenobarbital. This morning they sent some blood to the lab to analyze the level and it came back at 31. The Doctors want to keep the level in the low 40s. They gave her an additional does of Phenobarbital but it is slow to metabolize.

Later, they would try a oral dose of 2nd medication, Dilantin (Phenytoin). It too is slow, so eventually they put IV in and gave her that version of Dilantin (Phosphenytoin). At about 4:30pm, Claire was finally sound asleep without seizures. She has had to eat through a feeding tube for a majority of the day. While I am writing this, they are doing a Head Ultrasound to see if the hemorrhage in her brain has changed at all. We are awaiting the results of the Ultrasound. I don't expect an update until late this evening.

I want to thank you again for your prayers and the outpouring of offers of help. Truly believe, that we want to graciously accept your help. But while we are in the NICU, there is very little even we can do. Rebecca is here full time, managing her nursing and pumping schedule. I am here when I have office work to do or when I am back from visiting clients. We do get home during the night to get some sleep.

It is rather therapeutic for me to do the house work about an hours per day, so there is little to be done at the house. We aren't allowed to eat in the NICU and we don't care to spend too much time away from Claire. So many of our meals are spent in the Cafeteria of this building. It is difficult for us to accept and use meals at this time. Yesterday Rebecca and I took some time out to have a nice dinner at Alessandro's. A nice treat from Autotrader thanks to winning Sales Person of the Month (given to our entire team in the month of March--quite the story in itself).

This week I travel. But, if our prior experience is any indication, there should be very few seizures until Friday, when I return. I purchased a webcam for my wife so I could see my daughter via Skype while I am away. Please keep us in your prayers, it truly is the best gift we can receive right now.