Friday

Had our quickest ultrasound on Friday. Donor baby's Deepest Vertical Pocket had increased to 2.7 cm...more good news. All signs point to a positive aftermath to the laser surgery. We're not in a 'good' place yet, but every appointment shows notable progress. We're still monitoring resistance in the donor baby's umbilical artery (currently at the upper limit of normal) and heart thickening on the recipient baby. Another appointment on Tuesday.

Thank you so much.

Next Appointment---tomorrow

Sorry to have been a negligent blogger. Recent updates:

Last Friday we met our new doctor, Dr. Lynn Simpson, at Columbia Presbyterian Hospital. We had an ultrasound and echo cardiogram, followed by brief meetings with two members of our new medical team. The news was generally positive, though growth discordance between the twins is still large (around 40%). Doctors informed us that we might have to wait some time for the donor twin to catch up. As for other indicators, donor bladder was visible, donor baby had slightly more amniotic fluid, and recipient baby had significantly less amniotic fluid...all good signs. We have another appointment (we may have these every week) tomorrow.

C's mom came this week, replacing C's sister, who had been with us the previous week. Our friends and neighbors continue to stop by, help out, and bring gifts. We are very lucky to know you all. Thank you.

More tomorrow.

Ultrasound/Echo

Sorry for the delay in posting this...

On Monday we had our follow-up ultra and echo; the results were very good.  The most important piece of information that we received was the cardiac score (lower is better) of the twins.  Pre-operation, the score was 7; post-op, the score was 2.  Boo-yah.  That's not perfect (a score of zero is ideal), but it's much better.

The donor has a small but visible bladder and, as a result, some amniotic fluid around him.  Excellent news.  The recipient's heart is functioning better, though he's still adjusting to the surgery and pumping out a bit too much amniotic fluid, which is not ideal.  During the operation, doctors removed 1400 ml of amniotic fluid from his sac, leaving him with a Deepest Vertical Pocket of approximately 6.5 cm.  At the follow-up a week post-op, the DVP had grown to 8.1 cm.  Dr. Johnson informed us that this increase was not uncommon and that the recipient will most likely slow his output of fluid as his body acclimates to receiving the appropriate amount of nutrition from the placenta, rather than the excessive amount he was receiving pre-op.

All told, the surgery and its immediate aftermath have gone as well as possible.  To quote Dr. Johnson, "the only way it could have gone better is if we'd found a sack of diamonds in there."

We're back in Brooklyn now.  C's mom has left us and been replaced by C's sister and niece.  Pretty awesome to have such support from our families.  Lucky.  C is off total bed rest, and is now on modified bed rest (no lifting, traveling, etc...).  Still drinking Ensure thrice daily, but finding better ways to do it (in a milkshake?).

On Friday, we meet our new doctor in NYC, Dr. Lynn Simpson.  She specializes in high-risk pregnancies and comes highly recommended.

Thanks to our friends and family for letting us lean on them.  Thanks to our doctors for taking care of us.  Thank you so much.

Back from Philly (for good?)

Just returned from an encouraging stay in the Philadelphia area. Going back to work now, but will update more thoroughly later on. Thanks for all your support...

Day after Laser

C spent the yesterday post-surgery with a few unpleasant side-effects from the anesthesia: nausea, cramping, and an itchy nose (from the morphine).  Though she was very hungry, she had trouble keeping food down until the evening, when dinner went smoothly.  The nurses were surprised by how quickly she got in and out of bed unaided.

Today, at a follow-up ultrasound we checked in on the twins to find some encouraging news.  The donor baby's bladder, which had been invisible for a couple of weeks, was visible and he was beginning to develop some amniotic fluid around him.  After so many tough days, it was great to get some positive word from the twins.  

I had to return to NYC for work.  (In the train station, I caught myself chanting under my breath "I can see his bladder.  I can see his bladder."  All apologies to the good citizens of Philadelphia, who regarded me with some unease.)  I'll be here until late Thursday night while C's mom watches over her in their lodgings in Jersey.  On Friday, I'll take C's mom to the airport and stay with C until our last ultrasound in Philly (we hope) on Monday.  We'll hope to see some turnaround in the recipient baby's heart at that time.

Thank you all for your support.  Thank you so much.

Surgery

The short story:  Dr. Johnson tells us the surgery went as well as possible.  C stays in the hospital tonight (with her mom and me), but is in good spirits and health.  We'll have another ultrasound tomorrow, then monitor the pregnancy closely the rest of the way.

The long story: we (C, her mom, and I) woke up at 5 am and drove to CHOP.  C was feeling uncomfortable due to increased amniotic fluid around the larger baby.  Left untreated, this excess fluid was likely to increase unchecked and contribute to further complications.  For our doctors, however, this fluid meant more room to operate.  To quote one of the three doctors who performed the surgery, "Posterior placenta and increased fluid?  That's two thumbs up for us."

At 6 am, doctors and nurses begin rotating through our room, prepping us with detailed information and giving C antibiotics and antacids.  Again, we were grateful for the detailed descriptions and attention given by the people at CHOP.  We are told (by Arjunan Ganesh, our anesthesiologist) that C will be given several drugs (including Valium and morphine) that will produce two primary effects: first, the drugs will calm the twins, making them less likely to move during the procedure; and second, the drugs will make C groggy but help her retain consciousness.  

At 7:50 am it was game time.  C, now dressed in a hospital robe and hairnet, walked with us down the hall where the entire surgical team (around 10 people?) greeted us.  When it came time for C to separate from us, the surgical team walked with her through the OR doors.  As she walked away, we could hear her say to the surgeons "So...is everyone feeling rested and alert?"  Everyone laughed.  Her mom and I walked back to the hospital room.

We expected the surgery to take one hour, so we went down to the cafeteria to get some food.  We returned to the room and ate.  We talked about anything we could think of to pass the time, but at 8:50 we sat silently and waited.  The surgery took one hour and fifteen minutes, and I can safely say that the last fifteen minutes were the longest of my life.

C was wheeled (in her hospital bed) back into the room at 9:05.  The doctors and nurses said that everything had gone as well as possible.  In addition to cauterizing 8 vessels (an average number, apparently), doctors removed 1400 ml of excess amniotic fluid (over a third of a gallon) that was around the larger baby.  C is now much more comfortable and noticeably smaller.  I would ask her for details about the goings-on in the OR, but she's sound asleep.

Now, we hope for equal growth between the twins.  Tomorrow, we'll have a follow up ultrasound and echocardiogram.  C will stay in the Philly area for the upcoming week, then have another ultra and echo on 7/13.  Every week thereafter, we'll check in with the twins to see how they're responding to the surgery. 

Thanks for your continued support, emails, calls and texts.  We're sorry if we weren't able to respond to each of you individually.  Much love to you all.  We'll continue to update today and throughout the week.

Philly

Staying in Camden, NJ.  Tomorrow morning at 6, we check into CHOP.  We'll try to update sometime tomorrow.  Thanks for your thoughts...