The Diagnosis

Dr. MFM came into the ultrasound room about ten minutes into the ultrasound, which was really rare.  Usually, he’s like the great and powerful Oz and just watches from behind his green curtain, commenting only after the test is completed.

“You have TTTS.  I’ve called my former colleague in Miami so that you can go down there to see if you can have the surgery no later than Monday morning.”

We asked questions.  I cried.  My husband looked scared.  The ultrasound continued, as they had to give accurate measurements to the hospital and surgeon in Miami.  Dr. MFM came back in and said that because of the situation and severity of the fluid discrepancy, too much for Baby A and almost none for Baby B, they wanted to get me to Miami right away to see if we could have surgery in the morning.

We were told that WITH the surgery, our chances of having one healthy, living baby was 80%.  The chance of both surviving was 50%.  Those didn’t sound like great odds to us.  However, not having the surgery would mean that I would probably have to deliver “two very sick babies” at 26 weeks’ gestation.  The chance of survival for Baby B in particular was low considering the fact that she had lost weight since the previous ultrasound two weeks before, and she now measured more like a 22 week fetus with no visible bladder.

Dr. MFM briefly told us about the procedure.  I would be brought to the operating room, where the surgeon would use an endoscope to go through my belly into my uterus and use a laser to coagulate the blood vessels that the babies shared in the placenta.  That would essentially give the babies each a separate placenta, and it should correct the fluid imbalance and other issues.  If the surgery looked like it wasn’t going to work or if I went into labor, the surgeon would deliver the babies.

We had so many questions.  I think we were just stunned, dumbfounded that we were facing this life or death situation with our two baby girls and that TTTS hadn’t really been mentioned as a possibility in the past two weeks.  Dr. MFM hurried us out of his office, saying that we needed to get in the car and drive straight to Miami.  The surgeon there would tell us more and answer any questions we had.  He told us that he would have called an ambulance, but it would be quicker if we just drove.  There was concern that I would go into labor, because I had such an abundance of fluid.  We were told that we could go home quickly to get some of our things, but we needed to get on the road.  It was almost 1 p.m., and he wanted us to be there by 4 p.m. so I could be assessed that evening by the doctor and his team.

My husband and I left the office and made some important phone calls.  I cried hysterically as I called my parents to tell them, and I asked them to pick up our toddler from the babysitter’s house and take care of him until we returned.  My dad said something in an attempt to comfort me, but I don’t remember what exactly.  I was focused on my husband’s conversation with his own mom.  I listened as his voice cracked with emotion.  I’ve never heard him sound like that before or since.  We called the babysitter and told her what was happening, and let her know to expect my parents to pick up the toddler a bit later.

When we got to our house, we both rushed through to get medications, pajamas, and everything we might need for however long we were there.   Peanut butter and jelly sandwiches were good enough for lunch in the car, accompanied by some baby carrots and water.

The drive to Miami took about three hours.  On the way, I e-mailed my bosses and coworkers and posted a quick post on Facebook that TTTS was confirmed, and we were heading to Miami for surgery.  I also Googled the surgeon who would perform the surgery and found that he was one of the pioneers of the TTTS laser ablation surgery.  The TTTS staging system is called the Quintero staging system, because Dr. Quintero devised it.  Along with apprehension, fear, and sadness, I started to feel a bit of hope that he might be able to save my babies’ lives.

B, one of Dr. Quintero’s team’s nurses, called to give me more specific directions and find out our E.T.A.  She was so helpful and friendly, and I really started to feel like at least we were going in the right direction.

However, the thoughts kept creeping in that if only I had an earlier ultrasound, we might not be in this dire situation right now.  The huge weight gain, the horrible back pain…at least now I knew why I felt so terrible.  I had been to Dr. OB two times, as well as to the hospital two times in the past two weeks.   No one recognized the signs.  Dr. MFM saw me two weeks prior and did not seem concerned about the fluid difference and possibility of TTTS, so how the hell did this happen?  I didn’t have room in my brain to dwell on it, so instead I tried to focus on getting to Miami and through the surgery with two healthy babies still in my belly.

Early September

On Wednesday, September 4, 2014, I had an appointment with Dr. MFM for an ultrasound.  Everything looked ok, except for the babies’ fluid levels.  Normally, the MVP (maximum vertical pocket) of fluid is between 2 and 8.  Baby A had 9 something, and Baby B had 4 something.  I was 24 weeks and 1 day along.  Dr. MFM came in and said that the fluid discrepancy could be the result of Twin-to-Twin Transfusion Syndrome, but he would have me back in about two weeks for a follow-up ultrasound.  I wasn’t too concerned, because he didn’t seem to be.

The next day, I took one of my first pregnancy pictures.  I felt like my belly finally “popped” so I didn’t just look fat, I looked pregnant.  As the days went by, I just felt huge, and I was having trouble feeling the babies move.

On Monday, September 8, 2014, I called Dr. OB because I wasn’t feeling the babies move as much as I usually did.  He sent me to Labor and Delivery at the local hospital, where they hooked me up to the monitors for a non-stress test (which measures the fetal heart rates).  The heart rates looked fine, so I was cleared to leave.  Before I left, the doctor on call came by, stood at the end of the bed, and literally spent 5 seconds asking if anything else was wrong.  He didn’t shake my hand or offer sympathy or any other words of encouragement.  I couldn’t believe how little interaction he had with me when I had concerns about my babies.  We’re still fighting the bill for that visit.

The next day, Tuesday, September 9, 2014, I went to see Dr. OB. My fundal height (uterus) measurement was 40.  Typically, that number corresponds to the number of weeks pregnant you are, although with a twin pregnancy, it’s common to measure 8 weeks ahead.  I was still not quite 25 weeks, so 33 should have been the maximum amount.  I was in pain and feeling so much pressure, and Dr. OB reasoned that it was because I was measuring full-term.  He reiterated that the babies’ heart rates looked fine at the hospital and I probably felt less movement because the babies shifted positions.  He did not want to minimize my feelings if I felt something was wrong, so he said he would order an ultrasound for me if I wanted one.  I said that I trusted his judgment and if everything else looked fine, he was probably right that they just shifted.  I would give anything to go back to that day and demand the ultrasound.

As that week went on, the pain in my tummy and back increased so that I was constantly in pain.  I had difficulty completing assignments for work.  I drank a lot of water and tried to rest as much as possible.  On the plus side, I passed my glucose test!

On Tuesday, September 16, 2014, I visited Dr. OB again.  I was measuring 43, and I had gained 5 pounds in a week (which is significant, as I had lost weight initially and was only a pound over my pre-pregnancy weight).  He prescribed a maternity belt and some muscle relaxers to help alleviate my back pain.  He also wrote another note for work so that I would only be working half-days for the remainder of the pregnancy.  I immediately went to a medical supply store and got the maternity belt.  It seemed to help for a little bit, but I was so uncomfortable and had such a hard time sitting with the computer on my lap to do work.

On Wednesday, September 17, 2014, at 26 weeks pregnant, I really had a hard time feeling my babies move.  I could only feel Baby A; Baby B was just silent.  I called Dr. OB, who sent me to Labor and Delivery again.  When I was hooked up to the monitors for the non-stress test, they discovered that I was having contractions.  I was not dilated, thankfully.  An ultrasound was ordered, and the babies did not pass the test, because Baby A had a pocket of fluid that measured 16, and Baby B had very little measurable fluid.  Baby B also was not yet showing signs of breathing, which could be normal depending on the situation, and she had no visible bladder.  I was admitted to the hospital, and one of the nurses said that I might be there until I delivered.  I was so upset, in part because I rarely spent a night away from my sweet toddler, and I couldn’t imagine spending 8-12 weeks away from him.  I also had no idea what was going on with the babies, and whether this was TTTS or not.  Dr. OB came in around 6 p.m., and the first thing he said was, “Don’t freak out.”

“Have we met?  Of course I’m freaking out!”

He explained that the hospital’s ultrasound machines weren’t that great, so it might look like there’s an issue and there isn’t.  He wanted me to stay overnight for monitoring and be discharged in the morning to see Dr. MFM for a high-level ultrasound, because Dr. MFM doesn’t come to the hospital to see patients.  Dr. OB surmised that I should be able to be on bed rest at home for the rest of the pregnancy if Dr. MFM agreed that was the right course of action.  He did mention that if this was TTTS, Dr. MFM would be able to send me to the surgeon in Miami who performs the TTTS surgery.  I would have no answers until going to Dr. MFM the following day, so I had no choice but to wait.  My parents, husband, and toddler came to visit, and I told a few friends where I was and why.  Mostly, I was so stressed out that my babies might not be ok.  Baby B was way up in my right ribs, and Baby A was free-floating around in the rest of the space.

My husband’s company was having a welcome lunch the following day where they were to meet some of the executives from the home office overseas (the company had recently been purchased by an international company).  I told him to go ahead to work, because I didn’t want him to miss too many more days and not have time available when the babies were born.  Luckily, he did not listen to me.  He came to the hospital in the morning after dropping the toddler off with the babysitter, and we waited to hear when our appointment with Dr. MFM would be.

I was discharged from the hospital to see Dr. MFM at 11:30 a.m.  We were nowhere near as nervous as we should have been going into the office.

To read about the rest of our TTTS journey, click here.

First and Second Trimesters

I can’t say when it really set in that we were having twins.  I don’t think it has yet, and they are five months old now!  After the initial ultrasound, we obviously freaked out.  What were we going to to with five kids?  How would we make it work?  Would they be ok?  Where would they sleep?  How would we ever sleep again?

But life goes on, and we had to continue working and taking care of our existing family.  I was so exhausted all the time, and I had been having morning sickness all day, every day, basically since I found out I was pregnant.  My doctor prescribed some Zofran for me back when I was having my panic attack, but it barely kept me feeling normal.  I tried to eat vegetables and protein, but nothing seemed to make me feel great.  This feeling stuck around until sometime around the 18 week mark.  After that period, I could get some relief from the medication, but if I didn’t take it, I was sick again.

I started wearing my maternity clothes at about 8 weeks pregnant.  With multiples (and with any baby after your first), your belly can grow pretty quickly.

We saw the perinatologist (also known as a Maternal-Fetal Medicine specialist), Dr. MFM, in early June, at about 12 weeks along.  The due date was confirmed as Christmas Eve, and we hoped to keep the babies in until early December.  The ultrasound also confirmed that yes, there were twins, and yes, they were identical.  They had one placenta (monochorionic) and two amniotic sacs (diamniotic), our little Mo-Di babies.  Dr. MFM briefly mentioned that we would need to keep an eye out for Twin-to-Twin Transfusion Syndrome (TTTS), but said there wasn’t anything I could do to prevent it, and there weren’t any real signs to look for.

When we heard they were identical, my husband and I looked at each other and agreed, sadly, “obviously, these will be boys.”  My husband had three boys already, so we weren’t sure he could have anything else.  Not that there’s anything wrong with boys.  My toddler is the most amazing little boy in the whole world!  He’s smart, funny, loving, kind, and just lights up my life.  BUT — I always wanted a girl.  I had a girl’s name picked out (just one, though).  I was ready to have a sweet girl or two to go with my sweet son.

At Dr. MFM’s office, blood tests were performed which can detect genetic abnormalities and also determine gender.  Since our babies were obviously the same gender (identical twins cannot be different genders, unless the girl has a rare disease called Turner’s Syndrome), the blood test would be able to tell us if we were having two girls or two boys!  We were told results would take two long weeks.

After the appointment with Dr. MFM, on Father’s Day, 2014, we made the official Facebook announcement that twins were on their way to our family!  That Wednesday, I came back up to my office after talking to my boss downstairs, and I saw I had a missed call from Dr. MFM’s office.  They had my test results already!  I quickly called back and spoke with D, who said that all the genetic tests looked fine.  She asked if I wanted to know the genders, and I enthusiastically said, “YES!”

“It’s a girl!  Well, it’s TWO girls!”

“YES!  Yes!  Whoo hoo!  Yes!”  My coworkers heard my excitement and figured that I had just gotten word that I was having girls.  I ran (ok, ran is a strong word, but I hurried as fast as my pregnant ass would go) through the office to tell everyone the good news, and then I came back to my computer and sent my husband a message that we were having girls.  Yes, other people knew before he did.  I couldn’t hide my excitement!  I called my mom and my sister and sent text messages to a few close friends before finding the perfect picture to announce on Facebook that we were going to have twin girls!

I started to get excited, but I remained apprehensive because of all the risks.  Multiples have a higher chance of being born prematurely.  Dr. OB said that I would probably be on bed rest at some point and that I would no longer be able to drive an hour each way to work after about 24 weeks.

But life goes on, and we had a family vacation planned to visit my husband’s sisters in Maryland and Pennsylvania.  I would be about 15 weeks pregnant during the trip, but I hoped, however futile, that I would be past the morning sickness.  We decided that it would be “fun for the boys” to take the Amtrak auto train from Sanford, Florida to Lorton, Virginia (Orlando to Washington D.C.).  It was an overnight trip, but we would have our vehicle and not have to rent a car or deal with lugging the stroller and carseat on a plane.  We initially booked two two-person cabins (the toddler would hang out with me), but we were able to upgrade right before departure to a more spacious family bedroom with four bunks.

Now, if you are prone to motion sickness, you know that taking an overnight train ride is probably a bad idea.  If you’re prone to motion sickness and experiencing morning sickness, an overnight train ride is just downright excruciating.  I did not sleep at all.  Each time I thought I was drifting off, the train would jolt and jostle me back awake.  I spent a lot of time in the hallway, trying to catch a good signal so I could post about my misery and look at BuzzFeed.  I also read an entire book on my Kindle, and I vowed that I would never set foot on a train like that again.

The trip itself was ok.  I was pretty miserable, but I didn’t want to be a drag, so I went along with everything.  The worst was a day spent at the Philadelphia Zoo.  It was so hot, and I was so tired, hungry, and trying not to become dehydrated.  While it’s nice to take the kids to have fun somewhere, my heart and my body just weren’t cooperating that day.  We drove back to Florida in three days, and I have never been more excited to be home!

I remained tired and worn out through July.  After a trip to St. Petersburg for a deposition, I could barely move.  My body was just not happy with the long car trip.  Dr. OB wrote a note for my job, saying that I could only work 6 hours a day and was not allowed to travel (other than to go to work).

In August, I continued to be sick, tired, and worn-out.  By the end of the month, I was just about 24 weeks along, and Dr. OB wrote another note which said that I needed to work from home for the remainder of my pregnancy, however long that would be!  I was so glad that I no longer had to drive to work, and I started to get excited about being at the point where the babies would be viable if they were born prematurely.  Obviously, I did not want them to come early, but at least they would have a chance if they happened to arrive after this point.  I even started to get excited about my baby shower, which was scheduled for early October.  It was the first time in the pregnancy that I felt OK with everything and felt like I really might have two living, healthy babies.

To read about the rest of our TTTS journey, click here.

The Big News

The morning of April 14, 2014, I took a pregnancy test.  To my surprise, the control line didn’t even show up.  A dud.  We had been sort of, maybe, not really, trying for a while (as much as you can with a two-year old in your bed), and I thought there was a possibility that I might be pregnant.  I wanted to know for sure before I went to the doctor for my annual exam that day, because if I wasn’t, I had decided that we should stop trying.  Our toddler was just getting to that fun age where he could communicate and make us laugh, and as much as I initially wanted to give him a playmate, I thought he was a pretty great part-time only child.

When I got to my appointment, I told the medical assistant (“MA”) that I thought I could be pregnant.  She had me take a test right then.  When my OB/Gyn came in (“Dr. OB”), I told him that I took the test, and he went into the hallway to check with MA about the results.  She said, “Look, the line is barely visible.  It looks like when I take a pregnancy test.”  Dr. OB said, “Wait, so is this yours or hers?”  (Men.  Sigh.)

So there it was in faint pink and white.  I started to panic and told Dr. OB that my husband was probably going to have mixed feelings, as when his two older boys are with us, life can be very chaotic.  I relayed the story of the day we went strawberry picking in Orlando.  It was a great day: we picked strawberries, went to lunch, played at a park, and met up with our good friends for grilled cheese dinner and frozen yogurt.  On the way home, an hour-long drive, our toddler started to scream.  And scream.  And cry.  THEN, he threw up.  We were 20 minutes from home and just wanted to get there ASAP.  We asked the second-oldest (“Boy 2”) to help clean him up, while the oldest (“Boy 1”), who has Asperger’s, plugged his ears and stared out the window.  We quickly found that Boy 2 is a sympathy puker.  At this point, we were less than ten minutes from home.  Boy 2 and toddler were crying.  I kept pushing napkins to the backseat while husband continued driving in hopes that we would get home before everyone else started vomiting.

Right when we pulled off of the interstate to our exit for home, my husband said, “I’m getting a vasectomy tomorrow.”  Then, the song, “Happy,” (you know the one…”because I’m happyyyyyy”) came on the radio.  I started laughing and crying hysterically.  It was all so surreal.  The car clean-up was quite the ordeal, but my husband is the best, so the car didn’t even smell like rancid dairy vomit afterward.

So yeah, that was the state of our family planning at that time.  Dr. OB and MA thought it was a funny story, and it is.  Dr. OB sent me for an HCG blood test to really confirm, and I started to become excited.  My husband and I had lunch together, where we discussed our excitement and apprehension (yes, you can feel both at the same time).  I got the call later that day that my HCG number was 35, which is fairly low.  Dr. OB wanted me to go back in two days to make sure that my HCG at least doubled.  It was 100-something two days later, which seemed like a great sign.   Although the additional increase could mean multiples, I never even considered that it might.

That weekend, we put the toddler in a “Big Bro” shirt and went to my parents’ house for Easter.  It took ten minutes for my parents to even notice the shirt, and that only happened when my husband said, “Look at his shirt.”  It still wasn’t obvious.  My mom said she didn’t know if the shirt was a hand-me-down from Boy 1 or 2.

Later that week, on Thursday, I woke up around 3 a.m. with severe anxiety and blood pressure spikes.  I thought for sure something was wrong with the pregnancy.  Husband took me to Dr. OB, and my blood pressure was normal.  He said, “I think you’re experiencing anxiety about having another baby.  It probably has something to do with a car full of kids vomiting while the ‘Happy’ song plays.”  Yep.  I started taking anti-anxiety medication that day.

We had my official first pregnancy appointment about a week and a half later.  Typical stuff, just going over paperwork and discussing delivery.  Yes, I’d be having another cesarean section, and YES, I wanted a tubal ligation.  Four kids is a lot, and we already knew that handling three was a challenge.  My first ultrasound was scheduled for that Friday.

I took off work that Friday, because I needed to get more blood work done, and I had an appointment with the allergist on top of the ultrasound.  My husband met me at the Radiology center, and we went back for what was the longest appointment ever.  About 45 minutes in, I saw my husband’s face change.  The technician said, “Let me ask you a question.  Do twins run in your family?”

“NO!  Oh my God, NO!  What the fuck, no!”

OK, so I didn’t react favorably.  The tech called in another, more experienced, tech, who said that we might have identical twins, because she didn’t see a membrane.  We had no idea what that meant at the time, but we supposed it was exciting.

I had a lot of phone calls to make.  One of my sweet friends said, “that’s exciting!  It’s like getting a bonus baby!”  I started to get excited about having two babies.  Maybe we’d have two girls?  We tried to wrap our heads around becoming a family of seven.  We’d need a mini-van and another crib…and we’d need a whole lot more, mentally.

To read about the rest of our TTTS journey, click here.

Well, Hello There!

In 2014, I found out I was pregnant with monochorionic-diamniotic (“mo-di”) twins.  Monochorionic twins share a placenta and are definitely identical.  The twin news was a shock, to say the very least.  Twins do not run in my family (and I have since learned that identical twins have nothing to do with heredity — it’s just like you won the baby lottery and got a bonus baby!), and we were kind of shaky about having one more kid, let alone two!

We quickly found out that mo-di pregnancies can come with a host of issues, as the babies share a placenta (they have separate amniotic sacs), and accordingly, their blood flows back and forth between each other through the placenta.  We were told that around 15% of mo-di pregnancies can develop Twin-to-Twin Transfusion Syndrome, or TTTS, and that we would be monitored with ultrasounds to keep a close eye on the babies.

In September, we received our TTTS diagnosis, went to Miami for intrauterine surgery to correct the condition, and waited patiently for our girls to arrive.  Until they were born, we thought that the only possible issues we would face were kidney issues in our donor twin.  When our baby B was born, we were told that she has microcephaly and brain damage as a result of the TTTS.  Her kidneys are monitored monthly, and we do not yet know if she will require dialysis or a kidney transplant.  Baby A does not have any issues of which we are aware.

Life is unfair, as we all know; but seeing what our baby B could and should look like and be is our constant, heartbreaking reminder of everything we went through.  She’s still beautiful, and she’s still amazing, but she will face so many challenges that her twin will never know.

This blog is my way of sharing our story about our journey and our new normal.  I will go back to some of those toughest days and share the present days’ stories as well.  I am not a medical professional, and this blog is not meant to share any medical advice.  Although I am an attorney, this blog is also not meant to impart any legal advice or create any attorney-client relationships.