Not what we wanted to hear

For those of you just tuning in, we found out during my pregnancy with Anders that he has a benign tumor in his right lung called a CCAM. During the pregnancy, we watched it grow and then we watched it shrink. For the first time in many months, we have new information to share about Ando-Baby's CCAM, and I wish it were different.

Anders had a follow-up chest x-ray about a month ago, and shortly thereafter we heard back from our regular pediatrician, to whom the report had been sent. She told us that the radiologist called the tumor "more pronounced" but had no other information for us. She suggested we follow up with a pediatric surgeon. The surgeon we had been consulting with throughout my pregnancy, Dr. Jona, has since retired and referred us downtown to Children's Memorial Hospital. When Anders was only two weeks, Dr. Jona had said that the CCAM was the size of a pea and that it would continue to shrink until you couldn't even see it on x-ray. So when we were definitely not prepared for "more pronounced."

We consulted with Dr. Madonna at Children's Memorial on Thursday afternoon. When we asked her if it had grown, she said, "We think so. It's hard to tell because he's grown and because the irregularity is hard to discern on x-ray." I asked her how big it is now and she held up her hands to make a circle about the size of Isaac's fist. I was shocked. "The CCAM is that big?" I asked. She said that if a CCAM can be seen on an x-ray after the baby is born then it will continue to grow, which is the opposite of what every other doctor had told us throughout my pregnancy.

Also possibly of concern is that both the nurse practitioner and the surgeon heard a heart murmur in Anders's chest. Our pediatrician has never heard one, and we had a normal echo-cardiogram when he was in utero, so it's probably not a big deal, but on top of every thing else, it was once again not what we wanted to hear.

Surprisingly, they seemed in no rush to do the surgery. Dr. Jona had suggested waiting until Anders was older than one year. Dr. Madonna prefers to do the surgery earlier, but when we told her our original plan of having it done during my summer off of work (he would be about 16 months old), she was quick to endorse that timeline. He will be in the hospital for three days and will recover quickly, within a week, they said. We feel like even if Dr. Madonna feels comfortable waiting, we just want his foreign object out of our baby! We will, of course, prioritize his health and the least possible risk to him over our work schedules! So we're trying to figure out when to do it.

I was in such shock when we left. I think my first emotions were of anger at all the doctors for the different stories we're getting and for the sometimes nonchalant way they deliver drastic news. This was the first time we had even talked about the CCAM in many months, and it feels like a whole new ball game when you're holding the baby--your baby, who has a name, a face, personality, a place in your family--in your arms rather than the sort of "potential" baby in your womb. This is my Anders you're talking about.

The good news is that everyone agrees that the surgery holds little risk for Anders and is very effective.

Please pray for us. We need wisdom, peace, and good doctors most of all. We'll keep you updated.