GREAT NEWS!!!!!

We got a call from the surgery coordinator. The hospital has agreed to write off any expenses that our insurance doesn't cover! Both surgeons have already offered to do the same which means we should come out of this NO MEDICAL BILLS!!!!

it's a match!

Ember and I have the same blood type, yay!! I have an appointment on Tuesday to donate my blood for her. They will do whatever prep they have to do to it, and then ship it to the hospital so it can be used during Ember's surgery. I'm glad she won't be getting a stranger's blood. I mean I'd gladly take it if that were the only option, but I feel much better about doing it this way.

On the insurance front, a friend of mine reminded me about the out-of-pocket maximum for the calendar year. I checked in our insurance handbook and did the math. Since the birth was this calendar year too that takes the max down by about half. So whether they pay 70% or 80% it really doesn't matter, I think we'll hit that max either way. That's a lot of stress relieved.

frustration

We had our last appt with the neurosurgeon yesterday. It went well, he just answered questions & set things up with the blood bank. Unfortunately the surgery coordinator informed us that our insurance is refusing to bill us as in-network. I called to double check that there aren't any in-network options for surgeons because it would cost less to travel for the surgery than to pay out of network charges. It turns out there is not a single pediatric neurosurgeon in the network - anywhere. There is also no pediatric plastic surgeon, no pediatric craniofacial team of any kind. But they still will not pay. I don't get it. It's not like we have any other options. We're not just choosing to go out of network, there literally are no other options. We got the bill for the office visit with the plastic surgeon, I sat there staring at the bill thinking "it was only 30 minutes!" I can't even imagine how much the surgery is going to cost. We're going to appeal, of course, but the lady I talked to on the phone said that they have been appealed before by other people & have never budged on it. She did encourage me to go ahead & try though. So insurance companies are horrible & rotten. BUT we have been shown a tremendous amount of kindness by our doctors. Both the PS and the NS have offered to waive any surgery charges beyond what the insurance is willing to pay. I am so thankful for that. It still leaves us with hospital and anesthesia bills though, and those are the big ones. I'm so frustrated. We worked so hard to pay off all our debt too. Oh well, it was nice while it lasted. Such is life.

we have a date

Ember's surgery is scheduled for Thursday, November 6th. We have to be at the hospital at 5:30 am, and surgery will start at 7:30. It's a 4 hour surgery, but the plastic surgeon said that 2 hours of that is anesthesia. She'll spend the first night in the pediatric ICU, and then if all goes well she'll be sent to the regular pediatric floor the next day. They expect her to spend 3 nights total, which means she should be able to go home sometime that Sunday - of course it depends on her progress. We have another visit with the neurosurgeon next Tuesday, figure out when to go to the blood bank, and that's it! Then we just wait for the 6th to roll around. I still haven't gotten her infant pictures taken and I really want to do that before the surgery so that is high on the to-do list. I want to make sure her pics are taken in her "original form." I have no doubts about the surgery at all, I KNOW this is what I want to do for her and I am positive that this is the decision she would make for herself. Oddly enough though, I feel a little strange and really kind of sad about changing the way she looks. I've looked at that face every day (and several times each night) for 3 months and I think it's absolutely perfect. She's gorgeous exactly how she is.

Our meeting with the Neurosurgeon

We met with our neurosurgeon (NS) this afternoon. Um, not sure where I should start. We don't have a surgery date yet, but he did say that it will be in about a month, give or take a week. We will be meeting with the plastic surgeon (PS) probably on Friday - our appt with the NS went late & the PS's office was closed by the time we were done. They'll call us with our appointment time tomorrow. After meeting with the PS we will go back to the NS to schedule the surgery & start getting things in order. Ryan, Ember & I will all go get our blood tested and if one of us is a match to her we will give our blood so she won't have to get a stranger's blood during the surgery. They'll help us get stuff figured out with our insurance. Our insurance considers this surgical team to be out-of-network, but because there are only 130 doctors in the country that can do this kind of surgery they will be able to work it out so that our insurance will cover it. Anyway, about the surgery itself - it's going to be a lot worse than I thought. I was under the impression that they would only be cutting the skull bones apart at the suture - sort of creating a new suture. I was wrong. The NS be making an incision from above one ear, up to the top of her head, and back down to the other ear. Then he will cut the bone along that same line and remove the front part of her skull completely (her whole forehead). The PS will take that part of her skull & work on it to make it the right shape, then the NS will screw it back on. That's really difficult information to deal with, I really didn't think it was going to be such a major surgery. Anyway, that's all the new information I can think of right now.