Good news

Yesterday we spent the day at both the Children's Hospital of Philadelphia and the Hospital of the University of Pennsylvania getting tests and consultations. The Children's Hospital was wonderful. Kelly was our care coordinator who had previously spent over a hour talking to Victoria and answering all of her questions by phone with follow-ups. She met us in the reception area and had a printed schedule for our day. She talked us through the schedule and gave us directions to each location we needed to visit, as well as telling us lunch options and even making sure we had our parking validated! She then walked us to the first appointment - a fetal MRI.

After the MRI we went to get a fetal echocardiagram where we found out the heart was doing fine. The technician asked us a question about "her" to which we asked if she saw the sex. She asked if we knew the sex then and Victoria told her we didn't want to know. She then told us she thought she heard Victoria say her and that she wasn't looking for the sex - yeah right, nice recovery ;) This technician then directed us to our next appointment with the geneticist.

The geneticist was a very tall woman, taller than me (think "Duece Bigalow"), and walked us through our family medical histories. She reiterated what we knew from our research, that CCAM is not genetically linked, but she gave us an opportunity to discuss any other conditions we might be concerned about. She was very patient in answering all of our questions and she then asked if we needed directions to lunch! All of the people we talked to each new what our schedule was and each were very down to earth while still being professional.

We also spoke with a financial counselor who showed us our current insurance info in detail. She said that all of our care would be covered, and that if any bills were questionable we should contact her. She gave us her business card. Again very nice and reassuring.

We ate lunch at the cafeteria, where the prices were reasonable and the food was very good. I was able to get a seafood sushi roll lunch for $4.99, can't beat that.

After lunch we headed over to the Hospital of the University of PA for the most detailed ultrasound we've ever seen. The technician was amazing at typing quickly while getting excellent images. They can even see the details of blood flow, both in and out, in color using doppler just like the weather forecasters use for rainfall. She took detailed scans in every direction, and asked if we knew the sex. She warned that she would need to document the sex and for us to look away if we didn't want to know. I did, Victoria didn't, but I could tell she was on the fence. I saw what the technician typed in, "XX." When Victoria asked if I wanted to know the sex again, I told her I already knew. She then broke down and said, "Well if he knows already I might as well know." The technician told us it was a girl and we were both happy to know Brianna was having a sister. Victoria commented that this was less work for her because the baby's future room is already purple.

After the technician finished her work, a doctor came in and looked over some specific things. He informed us that this was not too large, specifically the CVR (volume of head to volume of CCAM) was .57, much less than the worry zone of 1.6. We were starting to feel cautious optimism at this point.

Our last stop was to consult with members of the pediatric surgical team. They presented us with a whole packet of articles relevant to Victoria's questions and a DVD about their facility and procedures. We were told that this condition, while extremely rare for other doctors, is common to them and they see about 10 per week from all over the world. The OB doctor told us that this CCAM is only occupying the bottommost of three lobes of the right lung, and that the middle and upper lobes were slightly compresed but OK. He told us that in his experience the majority of tumors of this size grow somewhat, but not enough to threaten the baby. He expected that we would be able to deliver normally (or "vaginally" as Victoria is fond of saying), most likely in Hartford if things continue to go well. After the birth, the baby will need to get the tumor removed at 4 weeks, after proper bonding at home. Philadelphia is equipped to do the operation and they say the baby will go home in 2-3 days and the lung will grow back to fill in the space. The child will have full, normal lung function in short order.

We agreed on a plan to get a detailed ultrasound weekly, switching weeks between Hartford and Philadelphia, with a final evaluation at week 32. We were cautioned that the tumor could grow to very large very quickly, but it was unlikely. They scheduled our next 2 visits right then and there and we were on our way. What am amazing facility. What a relief. Victoria and I were now much more optimistic and we both feel that we can let down our emotional guard and bond with what we now know will be our little girl.

Thank you again to our amazing supportive family, friends and co-workers.