Welcome to the universe.....

On Tuesday, at 32 weeks and 3 days, our ultrasound revealed low fluid around Baby A.  Past 32 weeks, our high-risk doctors suggested that we have C admitted to the hospital for monitoring.  In case we had to deliver early, steroids were administered to aid lung development in the twins.  C was given twice daily non-stress tests from Tuesday through Thursday, when she was also given another ultrasound.  NSTs were great, but the ultrasound confirmed the low fluid in Baby A's sac.  To our surprise, doctors recommended that we deliver that night via c-section.  

We had hoped for 34 weeks, but 32 weeks and 5 days was as far as we would get.  Doctors assured us that "32-weekers" routinely had "successful outcomes".  We called our families, who came as soon as they could.

At 8:19 on Thursday, October 15th, 2009, Truman Richard Kayne and Fisher Daniel Kayne were born.  Truman weighed 4.5 pounds and Fisher weighed 3.2 pounds.  Trying my best to be partial, these are damn good-looking boys.  Their Apgar scores were both 9 of 10 (Columbia doesn't give 10s, since newborns 'never' have full color in their hands and feet, so the boys are already testing well).  More on Apgar here: http://www.babycenter.com/0_the-apgar-score_3074.bc

Tru and Fish were whisked away to the Neo-natal Intensive Care Unit (NICU), where they were given some assistance breathing (standard care for preemies) and put on monitors.  It's a bit jarring to see the boys hooked up to machines, but they're receiving the best care on the planet and they're doing well.  The tubes hooked up to their noses help them breathe, as 32-weekers have trouble breathing on their own (again, this was to be expected).  They get their nutrients intravenously and are kept in isolettes (http://tinyurl.com/yf8ra8j).

As of today, Truman has been made to lay on his right side to treat a small pneumothorax (another minor complication common among preemies, pneumothorax is air around the lungs that prevents complete expansion.  Often, a pneumothorax will be reabsorbed easily.)  While adults breathe 21% oxygen, Truman's assisted breathing is pumping 40% oxygen, while Fisher has gotten as low as 25%.    The closer they get to 21%, the better...that's when they can start feeding.  Fisher has been doing well enough that he fed (on colostrum that C has been pumping...http://dictionary.webmd.com/terms/colostrum) today.  We're hoping that Truman will be able to feed soon, but we're not rushing him.

C, unfortunately, is still itchy as all heck.  What we had thought was Obstetric Cholestasis has turned out to be a pregancy rash called PUPPPS (http://dermatology.about.com/cs/pregnancy/a/puppp.htm).  Good news: it will go away on its own.  Bad news: it may take up to 2 weeks after delivery.  Carrie is toughing it out, but it's torture.  

We'll update periodically, and thank you all so much.  Our boys are doing well, though they may be in the NICU for around a month, we're happy to have them in the best hospital and with the best doctors.  We're hoping the parents aren't too shabby either.

thank you thank you thank you.

Obstetric Cholestasis, Non-Stress Tests, ugh...

Yet again, apologies for the delayed post. Things have become a bit hectic on our end.

Since the beginning of her 3rd trimester, C has been itching a bit, but as of a week ago the itching became unbearable and unremitting. Today marks the 6th consecutive day without sleep, and she is covered in self-inflicted scratch marks. Apparently, in roughly 7 of 1000 pregnancies, women develop a condition called Obstetric Cholestasis (OC). In OC, bile acids enter the blood stream and cause severe and unrelenting itching. OC is very rare, but more common in mothers of twins than in mothers of singletons. I have no idea what 6 days of sleeplessness is like, but I do know that sleep deprivation is form of torture used on enemy combatants. C has just been elevated from generally amazing to superhero/sainthood status.

There is an entire support group devoted to moms with OC (www.itchymoms.com) but most of the messages posted attest to the frustration of those who suffer from it: the itchiness, in many cases, does not subside until delivery.

After a week of normal ultrasounds and echo-cardiograms, Dr. Simpson recommended that we begin bi-weekly monitoring as we cross the 32 week threshold (which passed this weekend). Today, Baby A's fluid was low enough that C was again admitted to triage at the Labor and Delivery unit for Non-Stress Testing, which we passed without incident. However, Dr. Miller has asked C to be admitted to the hospital and receive steroid shots in case Baby A's fluid situation does not resolve, in which case we would probably deliver in the next few days. During this time, C will be monitored closely. At this point, we're unsure if she will be staying in the hospital for several days (or weeks?).

Still, we hold out hope that we'll make it to 34 weeks (10 days away), when risk of pre-term complications diminishes greatly. It's no great comfort that our primary doctor (Simpson) is out-of-town while these decisions are being made, but Dr. Miller has given us excellent, if cautious, care up to now. Simpson returns on Monday.

For now, C is in hospital, I'm at work, and one of her best friends is by her side. I'm heading home to grab stuff for this unexpected hospital stay and we'll play it by ear.

Thanks to everyone for everything. We're in the home stretch now.

Thursday's ultrasound

Nothing new to report on Thursday. Baby A still looks good, but with slightly low fluid...Baby B still looks a bit small, but with ample fluid. All dopplers still look perfectly normal.

On Tuesday we have another growth scan and echo-cardiogram. More then.

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.