Lola’s neurosurgery followup today was fine. He was happy that her fontanelle was still sunken and thought that she looked good. He took out her stitches, which was a little traumatizing for us both. I don’t know if there’s a better way to do it with a baby, but two people held her down as she screamed, while he tried not to nick her as he cut the suture knots. He was not totally successful – yuck. The wound on her head looks really good. The big one on her belly still looks a little red and raw.

We’re trying to figure out what “back to normal” means for Lola – which at this point I think is somewhere back in December? In December she was pooping every day, consistently eating 5 ounce bottles and sleeping through the night. I think that’s our baseline. With the hydrocephalus and surgeries in January, February and March she’s been pooping only with suppository/laxative, inconsistently eating 1-4 ounce bottles and waking up every few hours during the night. Presently he doesn’t think any of these symptoms are related to neuro because her head is so soft and there is no pressure. He said we should give her a month post-op to recover from this last surgery. Then we can rule out neuro and surgery, and if the symptoms continue we’ll have to go back to the pediatrician to see if there are other factors at work. Gastrointestinal, habit/routine, etc.

The good news is that she really does seem to be feeling better, both from the surgery and cold. She’s seems more like herself – smiling and laughing. We have another follow up appointment next week and will do another head ultrasound to get a post-op baseline moving forward.

• Max & Lola