September 22

Tuesday's appointment was something of a rollercoaster.

At our morning ultrasound, we found that both babies had reasonable overall growth, but baby B (our former donor) had an abdominal circumference below the 5th percentile, while his head has begun to make up a greater percentage of his overall weight. All his vital signs were good, but Dr. Miller recommended (in consultation with our primary doctor, Lynn Simpson) that we go to the triage nurse at the Labor and Delivery Unit to have a Non-Stress Test (NST). NSTs monitor the fetal heart rates and check for irregularities. Because we neglected to ask about the ramifications of 'failing' the NST, we were pretty anxious on our way to Labor and Delivery.

At triage, we waited for hours while more pressing cases (a C-section, a woman in labor, etc..) were seen before us. Finally, we were ushered in to an exam room, where two monitors were strapped to C's belly. Unfortunately, every time the twins moved, the monitors had to be moved and the test began again. After an hour, the test results were in: the twins looked "beautiful." Heart rates were "excellent".

We met with Dr. Simpson at the end of our day, and she told us that the results of NST were reassuring (we preferred "beautiful"). There was some discrepancy between Miller and Simpson's predictions of our delivery date. Miller suggested that it was highly unlikely that we'll get past 32 weeks, whereas Simpson held out hope for a later birth. If at all possible, we'd like to make it to 34 weeks, when pre-term complications are much less likely.

While I returned to work (after a 5 hour hospital morning), C went home and went about trying to find out the results of a fetal MRI that she'd undergone over a week ago. The doctor in charge of reading the MRI results had gone to Europe for a week and had, for whatever reason, not been able to give us the results immediately upon her return. With all the other stuff that's been going on, not knowing the MRI results had become just another focal point of nervousness. When C called and finally got the results, the exchange went something like this:

Nurse: Ok, so I'll read from the chart.
C: Great, thank you.
N: "Baby A MRI results are reassuring. Fetus shows no visible signs of neurological impairment. Baby B MRI results are reassuring. Fetus shows no visible signs of neurological impairment."
C: Oh, thank god.
N: And at the bottom it says...um...
C: It says what?
N: This doesn't make sense...
C: Sorry, would you mind reading what it says, please?
N: Um..."There is evidence of cerebral hemorrhaging."
C: What?
N: That can't be right...umm...I'm going to call the doctor and call you back. Ok?
C: Ok.

(five minutes later)

N:Hello?
C:Yes?
N: The doctor wanted to apologize. That was a typo at the end of the chart. It should have said "NO cerebral hemorrhaging."
C: Oh. Ok. Thank you.

That's the worst typo we've ever heard of.

That night, C took me to dinner at Marlow & Sons in Brooklyn. She had also bought me a painting from a local store. It was my birthday. We celebrated and it was great.

Much love to our family and friends, who keep us in good humor and good health. More (less eventful?) next week. Thank you so much.

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.

Follow up Ultrasound

Today we had a follow-up ultrasound to assess the fluid level in baby A. It seems things, for the most part, have remained stable. They were able to find one pocket with 3cm of fluid (normally a good indicator), but the tech noted that there may actually be less fluid than on Tuesday. All dopplers and heart rates remain normal and C's cervix is still long and closed, so the babies are in no imminent danger. The doctor on call let us know this low fluid is just something to monitor, and until baby A has no fluid at all, we shouldn't get too concerned. We were sent home with a prescription for rest and liquids for C. So, we continue to hold out cautious hope that our boys are doing just fine.


We have another appointment on Tuesday and will update then. Thanks again for all thoughts, prayers, and well wishes.

26 weeks and 3 days

Something of a hiccup at today's growth scan. All Dopplers and growth were good, both babies had grown on target and heart rates were good. Baby B's fluid was normal. However, Baby A, the larger 'recipient' baby, appeared to have less than normal fluid around him. His Deepest Vertical Pocket was measured at 2.1 cm (3-8 cm is normal). This finding was pretty unusual, since Baby A had always had more of everything--more nutrients, more fluid--it was surprising to find that he may have lost fluid. Dr. Miller was quick to point out that the DVP measurement is not perfect; when the baby is oriented in different positions, his distance from the membrane changes. They've scheduled a precautionary follow-up fluid scan for this Friday in the hope that Baby A will demonstrate regular fluid levels then. If things aren't better, we may have to admit C to the hospital for closer monitoring.

Thanks for your support. We'll follow up Friday afternoon.