We gathered our courage (and our baby) and made our way back into the hospital for our first clinic visit as outpatients yesterday. The purpose was to check up on her, do her counts and generally make sure we weren’t bungling things too badly at home.

It was a good visit overall. Her blood pressure was the best we’ve seen since before she was initially sick with the bronchial mess about 1.5 months ago: 83/44. That’s normal for an infant, clearly Zoe is happy to be at home too. She spent a great deal of the weekend sleeping without being poked, suctioned, tested or stuck, and it paid off.


  • WBC: 1.5
  • RBC 2.93
  • Hemo: 8.7
  • Platelets: 381 (wow, this one had the doctor grinning ear to ear)
  • BP: 83/44
  • Temp: 98.4

Our outpatient visits will take place 2x a week, on Mondays and Thurs for now. We’ll be doing checkups on Monday, and on Thursday she gets her Etoposide dose over several hours along with a LP (spinal tap) for the next week or two.

We feel gratified so far that we pushed to get her out of the hospital when her BP stabilized. There’s just a feeling of diminishing returns after awhile in the hospital — a greater chance of reinfection and a loss of will and spirit in the face of the daily grind. A peaceful sleeping baby is an amazing sight after the past few weeks.