27 weeks and counting!

We had another follow up appointment on Tuesday and received mostly good news. The day started with an echocardiogram to monitor the boys' heart function. Baby A (our former recipient) still has a little thickening but we've been assured that this will resolve without intervention within the first year of his life. The unexpected news came about Baby B (former donor). It seems his heart has thickened a bit as well. The Doctor expressed that this latest development is not cause for alarm (the thickening is "barely perceptible"); it is just something to monitor. We have a follow up echo scheduled in a month.

We then went to the Neo-natal Intensive Care Unit (NICU) where we met with a neonatologist who gave us a tour of the facility, in case the boys have to spend time there. We are still holding out hope that the NICU is not in our future, but our primary Doctor has been preparing us for this scenario. Thankfully, Columbia's facility is the highest rated NICU in NYC.

Our day ended with an ultrasound and an appointment with Dr. Simpson. It seems the fluid levels for both boys have evened out and are now within the normal range. We were extremely happy to see this balance, as we'd been concerned about Baby A's low fluid for the past week. Dr. Simpson seems to think we're in a good place and doing nicely, so we remain optimistic.

Two other events of the week worth mentioning:

First, Dr. Bebbington from CHOP called us to follow up on the twins. CHOP is so unbelievably awesome. If ever anyone we knew were in the difficult position of needing pre-natal care of any kind, we would recommend CHOP without reservation.

Second, Oxford Health has begun sending us letters (seven in total) that say that continued ultrasounds are "not medically necessary." Oxford is doing its best to stop paying for our care. According to our doctors (who are literally among the WORLD EXPERTS in the treatment of TTTS), these ultrasounds are necessary. The billing department at Columbia has taken up our cause and assures us that we will receive the care we need and not be billed for it. Still, it was upsetting to find out that as soon as we needed the benefits of our insurance, Oxford started doing whatever it could to deny us those benefits. We pay $12,000 a year for insurance. Insurance is supposed to cover us.

As always we continue to be grateful to the friends and family that sustain us. Also, thanks to Drs. Simpson, Miller, Lerner, Bonano, Bebbington, and everyone at CHOP and Columbia.