We did not know there was anything going on with Scarlett when we took her to her appointment. Now that we have more information, there were a few signs that we see now and would not have known to look for.
1. Bruise: This is the only thing we knew about. A small bruise on her forehead that stayed purple and red for a few weeks. We were concerned, but had no idea what it meant.
2. Veins: Everyone always mentioned how her head always was very veiny. All of the blood vessels are very visible, especially on the left side where the tumor is. We always thought, and were even told by doctors early on, that it was just her thin, fair skin. It is actually caused by the pressure exerted on her skull by the tumor, as is the bruising.
3. Head control: The week before this all began, we were at an infant massage class (highly recommended, by the way). The nurse who led it mentioned that Scarlett was not turning her head equally, so we needed to do more tummy time exercises. When she was born and in the early weeks, Scarlett moved her head a lot and we were always warning people when they held her that she looked wherever she wanted. Her ability to move her head has dwindled, and now she usually turns to one side and can no longer lift her head when on her stomach. Her head lolls to the side of the tumor because it is heavier than it should be. A physical therapist is already consulting and has given us positions and tips to help.
4. Eyes: We just started to notice yesterday that one eye is not centered anymore (good catch, Daddy!). The surgeon looked today and said that is seems there might be some pressure on the nerves to her eyes, causing the off-center eye.
5. Fontanel: The soft spot on the top of Scarlett's head was "full" at her appointment. I had no idea what it should look or feel like, but it was enough that the first doctor noticed right away.
We are hoping that most of this will be fixed by the release of pressure after the tumor is removed. I try not to feel too guilty for not knowing to check these things; there was no way to know.
Hospital life is not settling well with Scarlett this time. She is very fussy, and the nurses and doctors keep trying to give her different things to ease it. We are trying to take turns going home to sleep, since only one of us can be comfortable in the hospital room. It will be hard once Chris has to go back to work; luckily my family is coming to give us breaks. Mostly, we're just anxious about what comes next, and watching for any signs of problems before surgery.