This morning I spoke with Dr. Bennett. I told her everything that was going on. My biggest thing was that I didn't want to step on her toes or go above her with what I was doing. I didn't want to have a different plan than she had. She said that's not the case, that a lot of the time it's the parents that do all the research, and that she's fine with what I'm doing. Whew!
Tonight I got a call from Dr. Bauer. He gave me the "plan of attack", so to say. This is what he had to say... The biggest thing was that he said he can remove it. He will do the tissue expanders to replace the forehead with normal forehead and the scalp with normal scalp. The first surgery will be to put in the tissue expanders. He will do 2 to start off with. One will go in her left forehead and go towards her scalp. The other one will go behind the nevus, above her right ear, and towards the back of her head. He said that the forehead is the tricky part. He said that there will be a scar at the brow level and at the hairline. He'll put her on antibiotics for a few days after inserting the tissue expanders, to prevent any infections. Then while she has the expanders in I just need to watch for signs/symptoms of infection, and if I see any then he'll put her on antibiotics again.
The second surgery will be 11-12 weeks later and that will be removing part of the nevus. We'll wait 4 months and then do it all over again, but this time only have 1 expander. Then 11-12 weeks later the 4th surgery will remove the rest of the nevus. The 5th surgery will be a touch-up procedure that is reconstructing/refinement of the brows (since he thinks that one may be higher or lower than the other) and making everything (hairline, brows, forehead) symmetrical. Believe it or not he said that this last surgery is out-patient.
He said that after the first set of expanders are put in we'll have to stay in Chicago for 8-10 days and then go back in his office so his nurse, Susan, can teach us how to do the expanding. (This is where Dustin get's a little ticked off at me...He doesn't understand why I don't just tell them that I'm a nurse! Well I'm not a nurse when it comes to my kids. I don't want them assuming I know something. I don't want them to talk to me like I'm a nurse...I want them to talk to me like I'm a mom.) They'll give us all the supplies to do all the expanding at home after that.
Another thing he mentioned was how bad she'll look when coming out of the expander surgeries. He said that she'll be bruised all over, especially down into her right eye. There will be 1-2 drains from each expander. He said that those will be in for a few days to a week and usually the parents take them out.
I asked when we can start this process. He said that typically when he sees a newborn then they start at 6 months, but because he's "seeing" Brooklyn at 4 months, then we can start at about 8 months, or whenever we're ready. Dustin wants me to ask him at the conference if we need to start now, or if we can wait a year or so to save up enough money for at least 5 trips to Chicago. I'm betting that he'll suggest starting sooner rather than later because it grows as her head grows. At birth it was 9cm x 10cm and when we saw Dr. Grosso at 2 months it was 10cm x 11cm. So it may be even more surgeries if we wait just a year. I'll ask him though and see what he says.
I asked him what about waiting until her fontannelles and sutures close in her head and he said theoretically that's a great idea...IF they closed at a year...but they don't! He said that the head does do a little molding when the tissue expanders are in, but once they're taken out the head goes right back to where it belongs. He said he's done over 100 on the forehead/scalp area and it's all turned out great.
After getting off the phone with him and talking to my mom and Dustin I have a few more questions that I'll ask at the conference, such as what about getting an MRI to check for NCM? (NCM is Neurocutaneous Melanocytosis - which is melanocytes in the central nervous system that can cause developmental delays or seizures. It affects about 33% of people with a large or giant nevus.) Also, do I need to worry about satellites appearing? What will her hair growth be like after the surgeries?
I'm anticipating from start to finish to be about 15-18 months.