Intro

Hi everyone! My name is Stephanie, and this is my pregnancy experience that led to a triploidy diagnosis, and our termination at 20 weeks pregnant.

I wanted to write this blog as a reflection on all my husband and I went through during this turbulent pregnancy. Through the painful journey, I found that reading similar stories written by women were sometimes comforting, but sometimes also made me feel a little less strong, or a little more alienated. I wanted to write out my experiences for my benefit, and also to hopefully give women one more voice to identify with. I was raised Catholic, but I don't really consider myself a person of a definitive faith. I feel that is a major source of alienation for me as I read other women's experiences and how heavy they relied on their faith to get them through.

I also had a lot of internal struggles with termination. I went to Catholic school, and I remember going to an anti-abortion prayer service in 8th grade with a few other girls, as part of a retreat requirement. We were surrounded with pro-life propaganda, saw pictures of aborted fetuses, and were sent home with pamphlets and bumper stickers. I can't even use that word abortion in this experience. I do understand the pro-life position, but there is a ton of couples out there that may not have the choice, due to medical reasons affecting the baby, or the mother, or both, like I experienced. I feel like this is widely unrecognized, since I never even thought about it as a possibility. I was lucky enough to be close to a hospital that would perform the procedure. Some women have to travel hundreds of miles to receive this care, and some hospitals may not perform it because of Catholic affiliation. Some women have to travel to other states because they’re past the window their state legally allows pregnancy terminations. Some women don’t have insurance to cover such procedures and care. This is scary, especially when you think about all the issues coming against places like Planned Parenthood. I guess I just want to emphasize that terminations aren’t just for unwanted pregnancies, sometimes they are necessary to save the life of someone you love. 

I'm writing this blog in parts, trying to remember the experience as it happened. I wish I had blogged about it along the way, but I was expecting a very non-eventful pregnancy, as all women probably do! I wanted to write it for myself, but I hope it can help give a perspective to anyone in a similar situation, you aren't alone. xoxo

I have strong respect for everyone and their beliefs, and I just ask the same from you.

And so it begins!

Trying to get pregnant wasn't a major decision for us just yet. We were just sort of like "Let's just see what happens!" It was a crazy time for it to happen, since we were in the process of selling and buying a house, and stress was everywhere. I figured it would take awhile until I was actually pregnant.

But life happens when you're making other plans, doesn't it? I took about 3 pregnancy tests, but wasn't convinced. I wanted a bit longer, took another one that yielded much more visible results. I showed Matt, and he wasn't convinced (I don't think I still was either... I should be puking all the time, right??).

I hear the "pink dye" tests are the best, guys.  (March 11, 2015)

So we made an appointment with my new doctor, two days after we moved into our new house. I expected an ultrasound with someone circling an embryo and saying "You are DEF pregnant!!" or even just some kind of test to prove it. Nope. My doctor asked "Did you take a pregnancy test?" I said yes, and she said, well then you are pregnant, lady. That's all we would do.


Still wasn't super convinced, but we started telling people anyway. Not until April 22nd, when we had our first ultrasound. I swore I would walk in and they would find nothing at all. But Matt and I went in, and there she was! There really was a freaking baby in there! It even looked like she was waving at us. It was exciting and scary. We left with our first baby pictures that day. I said goodbye to beer, sushi, wine and all the good stuff for good, and geared up to be a mom. Yikes.

First Trimester Sequential Screening

At the end of this first ultrasound visit, they set you up for your next ultrasound / blood test, which is a screening for possible issues. They do this in the first trimester, around 13 weeks I think.

1. Sequential Screening is a way to estimate the chance that a baby will be born with Down syndrome, trisomy 18, or an open neural tube defect such as spina bifida. It combines measurements from two blood tests and a first trimester ultrasound, along with other details about you, to give you a more specific risk.

First off, I want everyone to know that this test is optional. I didn't know this, I thought it was all just part of the pregnancy monitoring. My thoughts on this screening test varied drastically throughout the course of the pregnancy, and you'll see why later. 

I went to this ultrasound by myself on May 2nd, since Matt was at the previous ultrasound, and I didn't expect anything crazy to come out of it. They did realize that my first estimated due date was off by a bit, which I already knew based on my crazy 45 day cycle. So my due date went from October 30th to November 13th. 

Everything else was pretty uneventful, although the tech did mention something about the baby's size, and some number and how it was close to being in the normal range. So I didn't think twice about it. 

This will always be my favorite picture of her, she looks like she's playing guitar <3

About 2 days later, I got a call from the testing center at Riddle Perinatal. They left me a voicemail telling me they wanted to discuss results of a test I had gotten a few days ago. My heart dropped. I remember this day so well because I called that number back so many times, and kept getting their voicemail. I was texting Matt like an insane person. He almost walked to the center downtown to demand that someone call me back.

That was a long 2 hours. Finally, someone did call me back. They told me these words exactly – that I tested positive for Down Syndrome.

I want to go back and emphasize that is test is a SCREENING. It’s not a diagnostic test, and it’s not definite. It’s about 85% effective, and can be altered by many factors. For instance, it can be skewed by having the wrong due date (which they originally did). 

I really wish that woman would have worded this differently, knowing what I know now. I asked her for specifics, and she told me that for a woman of my age, the odds of having a baby with Down Syndrome are about 1/300. Due to different factors, like the ultrasound nuchal translucency that they measure, and my HGC level being very high, that raises my risk to being 1/12. So that's a bit scary. They scheduled me to speak with a genetic counselor two days later, who could give me more information and options.

Genetic Counseling

Disclaimer - All of these are purely from memory, I may not be dead on with some of the facts on these tests, so check with your doctor!

 Two days later, on May 15, I had a phone / webinar meeting with my genetic counselor. Her name is Stephanie, and we would eventually become fast friends. (Not really, but she was really great and I'm so thankful for her!)

She sat with me and walked me through all the sequential screening in detail, explaining all the tests. A baby with Down Syndrome usually has the same warning signs that they found with me (high HGC, etc) so that's why my risk was higher. 1/12 can also translate to having a less than 1% chance which sounds way better!

Since this screening was exactly that, a screening, she gave me some next steps that I could pursue for a more definitive answer.

• There's a CVS test, which is more diagnostic, but I was past that point in the pregnancy to do that.
• There's also the cell free DNA test / NIPT test / MaterniT21 test, which is also just a screening, but is much more accurate at detecting the presence of Trisonomy 21, another word for Down Syndrome. This is actually the standard for women over 35, I guess because it's much more common to be high risk as you get closer to 40. Bonus - you get to find out the sex early!
• Going from there is the Amniocentesis, which is the mother of diagnostic testing in pregnancy. They can only do this around 16-18 weeks along, and they stick a big needle in your abdomen and draw out the amniotic fluid. They put the cells in a petri dish and let them grow, then check them for abnormalities. I know a lot of women decline this test because there are risks of miscarriage, it seems to be a controversial topic, which is interesting. 

I had some time to think about this, and what I wanted to do next. I also remember that this was the point when terminating the pregnancy started becoming a recommendation. It seemed so surreal to me. I mean, nobody wants a child that struggles, but I think I could really be okay with having a child with down syndrome. It's even a blessing in some cases. There is also such a high demand for adopting children with down syndrome. If that's the hand we're dealt, then so be it! The unfamiliar is scary, but having a baby in general is the unfamiliar for me anyway! 

I've read a ton on the internet about all of this, and this is the point when most women decline all other tests, because they know they are going to love their baby no matter what, and just want to enjoy the rest of their pregnancy. I was beginning to feel that way. If I had never gotten that first trimester screening, would I be this stressed? There are so many stories of screenings coming back high risk, and the baby is just fine! I took great comfort in that. 

The Genetic Counselor then began offering me more blood tests that could detect the risk of other diseases based on my and Matt's cultural backgrounds.

More stress and worry? Ugh, no thank you. 

The NIPT test, and Gestational Hypertension

With the Down Syndrome weighing on my mind for a few days, I really wasn't sure if I wanted further testing. I wanted to be one of those moms that embrace my baby and all the obstacles I might face in the future. Quality of life is important, but I've done so much research on the subject that by this point, I was feeling okay with it. On the other hand, I was also feeling pretty optimistic, since so many women had gotten the same blood test result and their baby was perfectly healthy.

I went to the OB about 4 days after I spoke to the genetic counselor, and talked to her about the results. She mentioned the NIPT (Non-invasive Perinatal Test), and said that if I wanted to, she could do that test right now. She warned me that it was still a screening, but a much more accurate screen for Down Syndrome. It's just a blood test, so I figured why not? The bonus is that we would find out the sex! I think I probably agreed to the test more for that reason anyway.

At this same visit, the nurse noticed my blood pressure was a little high. This was a worry to my OB because it had been totally normal at the previous visits. I've never had high blood pressure myself, but my mom and sister do, so I figured maybe it was just my time. However, since I was in the second trimester, it's a concern... your blood pressure usually drops in the second trimester. I was prescribed Labetatol, which is a blood pressure medicine that slows your heart rate. I also had to start taking my blood pressure at home, to see if the dosage helped. So I began my meds that night.

Holy headaches.

The next two weeks or so were pretty much hell. I started the Labetatol, and had constant headaches, day and night. I did my best to push through them, and hoped it was just an adjustment symptom. I;m not on any meds and have never been for anything chronic like this, so I figured my body just needed to get used to it. But after a week, I called my OB. My blood pressure hadn't really dropped on the meds, and the headaches were terrible. She mentioned that the hypertension could be causing the headaches, but referred me to a cardiologist just to have a second look.

So I went to the cardiologist the next day. I had an EKG done, and had 2 different people check me over. This was probably the most extensive medical encounter I've had up to this point. They ask me if I had any previous surgeries or anything.. just wisdom teeth! They said everything looked pretty good, blood pressure was a little high, but no other concerning symptoms. They switched me over to Methlydopa. THANK GOD. My headaches went away. No more ice packs on my face every day, or weird ointments on my temples.

Still checking my blood pressure at home, and it still hasn't gone down much, but I feel like the constant stress and doctors appointments might have something to do with that, yes?

NIPT Test Results

It took a few days, but I called the OB on a Thursday to get the test results. Everything looked good!! No abnormalities or signs of Downs!

and we found out it's a girl!!

I'm happy and excited again. Everything is right with the world. I start thinking about the nursery, all the cute things I get to buy, and even start building a baby registry. I make dates with friends so they can come with me to babies r us, since I have no clue what anything is. Matt and I start talking about baby names. Ironically, we started talking about baby names, and all were girl names. It's like we must have already knew.

OB Visit & the Maternal Serum Screening

At my next OB visit, June 9th, I was 18 weeks pregnant. We discussed the happiness that was the normal NIPT test.

As if you can't already tell, when a screening has scary results, we do our best to debunk it. When a screening comes back with happy results, we let it ride!

Despite the happy, I remember going into this appointment feeling a little off. It must have been because I was 18 weeks, and I still haven't felt any movement. I thought that tI probably should have by now, because so many women were asking me. The nurse at the cardiologist asked me, friends and family, but I still haven't felt anything.

Anyway, the OB asked me if I wanted to hear the heartbeat. I said of course, but a part of me was so afraid she wasn't going to find a heartbeat. I had no real reason to worry, so I'm chalking it up to pregnancy paranoia. She checked for it and there it was, loud and clear and right up to speed. :-)

I also had even more blood taken this visit. This was for the Maternal Serum Screening, which checks for abnormalities and checks your AFP levels (Alpha Fetal Protein). I wasn't really hyped for another screening, but it is what it is, especially since my HGC levels were high previously. I felt somewhat confident.

Maternal Serum Screening Results

Monday, June 15 - 19 weeks pregnant

I got a phone call from my OB. The blood test results were back, and she was really concerned about my AFP levels. I think the normal range is around 2, but mine was 8. She sounded pretty concerned, and recommended that I make an appointment for an ultrasound and possible amniocentesis as soon as possible, that same week. I think I was sincerely freaked out by this, because my OB had said previously that she doesn't like to do the amniocentesis unless its absolutely necessary. 

So my happy bubble was shattered once again. I wasn't really sure what this abnormal AFP meant, but I googled it anyway. You know how doctors always say to stay away from google? a girl needs answers and reassurance sometimes! 

I made a ton of phone calls that afternoon, trying to find a hospital in my network that could do an ultrasound that week, and possibly the amniocentesis. I was all set for Wednesday, June 17th. I told my husband it shouldn't be anything major, and that he didn't have to go. I still don't know why I said this, if I was possibly going to have an amnio. I guess I thought I could handle it, like I always think I can handle everything. I mean, how much bad news have I gotten while at work already? I got this.

Ultrasound #3

My regular hospital had nothing available that week for an ultrasound, so I ended up going to a perinatal department in a different hospital. I went alone, because I didn't really think anything was going to be wrong, I guess because I didn't really know the possible reasons for a high AFP.

The ultrasound tech told me she would do the full anatomy scan if she could. This is the full ultrasound most couples go to at 20 weeks, to find out the sex, and make sure everything is okay. We already had that anatomy ultrasound all scheduled for June 29, even though we already knew the sex. I felt like it was a necessary milestone, so Matt and I were going to go to that together. 

I was a little earlier than usual for a full anatomy scan, so she did what she could. That ultrasound took a really long time. She finished up, and then told me she was going to send the doctor in to talk about the results. I thought this was normal procedure, maybe it is, I don't know. 

I remember not being crazy about this doctor. She wasn't very warm or friendly. I honestly can't remember everything she told me that day, but she mentioned that there were some concerns. Knowing what I know now, I can link it all together. She was concerned about the shape of the skull, some extra space int he skull not being taken up by the brain, and some spots on the spine. She also had concerns about the heart, but it was too soon to really get a good look at the heart. She recommended a second in depth ultrasound, as well as a fetal echocardiogram, and possibly a fetal MRI. She had the receptionist schedule those for me, while I just stood there blank. The doctor told me that she would write all this down for me, so I could talk it over with Matt, but I guess we both forgot. 

Once again, she gave me the option of termination. She explained that there could possibly be mental disabilities, physical disabilities, and heart issues.

The funny thing was, I told her that my OB recommended I get an amnio, depending on how the ultrasound looked. This doctor really steered me away from the amnio. she told me the risks, and how she hated how genetic counselors explain the risks. She definitely talked me out of it. 

I left the hospital that day, not 100% sure what it all meant, but that my baby girl had possible brain, spine, and heart defects. My heart broke even more. I walked to my car and cried. 

The Next Day - consult with CHOP

The day after the ultrasound was a flurry of phone calls. While at work, I got a call from the coordinator at CHOP for Fetal Diagnosis and Treatment. She had spoken with my doctor, who just got the notes on my ultrasound results from the previous day. I remember her asking me what info I had gotten regarding the results. I told her I wasn't entirely sure, other than there was a possibility of brain, spine and heart defects. She asked me if the doctor had mentioned anything about Spina Bifida.

I said no.

She went on to tell me that the findings pointed to Spina Bidifa, which is where the spine doesn't form correctly. There are different types, but all signs were pointing to the most extreme case. The spinal cord of our baby was exposed to the amniotic fluid, which was causing the high AFP.  The spine deformation was also pulling the brain down, causing the empty space in the brain.

Once again, my head was spinning.

As she went on, she explained that in cases where Spina Bifida is thought to be the diagnosis, they schedule a two day evaluation where Matt and I could come to CHOP, and they would run all the necessary tests. She told me they have a really great department just focusing on Spina Bifida there. The two day evaluation would be all the same tests I expected to have: the ultrasound, the fetal echocardiogram, and the fetal MRI. All of these would diagnose the Spina Bifida, and the severity. She also told me that pending these tests, I could be eligible for in utero surgery, which will allow them to close up the spine.

I accepted my fate once again and scheduled the first day of the evaluation, which was all set for July 2nd.

My OB called not long after, and asked me if I had spoken with the woman from CHOP. She also told me she received the notes from the ultrasound, and asked me why I declined the Amniocentesis. I explained to her that I felt I was pushed to not have it. She was blown away, and she urged me to get the amniocentesis, as it would actually diagnose the Spina Bifida.

So I scheduled an amniocentesis for the very next day.

A race against the clock

I just wanted to mention here that I really began to feel the urgency in all these tests. Termination was never even an option in my mind, even though it had been brought up to me by every doctor I've seen to this point.

(I never said the word abortion either. I still can't.)

You can legally terminate a pregnancy in Pennsylvania up to 23 weeks pregnant. The window of decision was getting smaller and smaller.

I began to research Spina Bifida, just as I did with Down Syndrome. Is this manageable? What is the quality of life? It all varies as much as mild issues with feet and walking, to full on paralyzed. Since there are different degrees of SB, and it looked like we had the most extreme case, things weren't looking great.

I stayed my optimistic self, even though I know Matt was pretty understandably discouraged by the whole thing. I thought I could just go and had the in utero surgery (risks to mom and baby, but what doesn't have risks at this point??) and things might not ever be perfect, but I still slightly felt in control of the situation. I still had options. I thought that we would get evaluated, they would hopefully disagree with all the previous findings, and we would get our healthy baby girl!

Maybe I was just delirious at this point. I wonder how high my blood pressure was! I can only imagine.

I remember a few nights on occasion during this time where I could feel my blood pumping out of my body. I forced myself to take walks, just to do something. I even had the tiniest bit of wine. I could not relax.

Amniocentesis

Oh man this sucked.

Its funny how many awful painful things you have to go through as a pregnant lady. Blood tests, exams, aches and pains. But you do it all happily because you're pregnant! You get this great reward at the end of it all. You see all those awful tests through the rosy glow, and do them happily with a smile.

But when you're getting tests done because there's a problem, everything seems so different. I began to feel like there was something scary lurking around every corner. I dreaded the doppler because I was afraid there wasn't going to be a heartbeat. I hated getting my blood pressure taken because I expected it to be high. Every test had a potential for disaster. And here I was, going for the mother of all pregnancy tests, high risk and painful and all that good stuff.

I was scared. I was so happy to have Matt there with me. I was going to yet another new hospital, with a new doctor. I knew Matt was really hoping this doctor would look at the ultrasound and disagree with all the previous findings. After all, everyone else was just going off of the notes form the one doctor, they didn't see any actual ultrasound images to agree with her.

He began the ultrasound and started taking a look around. Matt asked him if he saw the same warning signs that the previous doctor did. He said that he could see why there was a reason for concern. Seeing Matt so upset by that was so hard. I thought back to our first ultrasound, how happy and amazed we were, how our little baby seemed to be waving to us! It was all so real and full of possibilities.

Now it just seemed like things were getting worse by the day.

The amniocentesis was not easy at all. Sure, it's a giant needle going into my abdomen and drawing out fluid. It was painful. It also felt a lot longer than the quick draw I thought it would be. They gathered 3 vials of fluid. I focused on a ceiling tile and held back tears, squeezing Matt's hand.

Cardiologist Follow Up

On Monday June 22nd, I went to the cardiologist during lunch for a regular follow up. The only notable thing here is that when they took my blood pressure, it was about 180/90. This was really high, since I've been in the 140/90s usually. I tried to tell the nurse and myself that it was because I probably rushed there, and under so much stress as it was.

Looking back, that was probably pretty scary.

Early Amnio Results (FSH test) - Triploidy Diagnosis

I think it was Tuesday, June 23rd that I got the call about some early amniocentesis results. I was surprised that it was so early, since the amnio takes 7-10 days for results, but they can get some early preliminary results if insurance allows, called the FSH test.

The doctor who called me was the ultrasound doctor who originally talked me out of the amniocentesis, which was weird. I didn't like her very much, and that made the whole conversation very cold.

She told me that our baby had Triploidy, which is an extra third set of the X chromosome. This condition is fatal, and "incompatible with life" as she put it. Most cases of triploidy miscarry in the first trimester, and if they don't they will  be stillborn. The longest record of a child surviving with triploidy is 10 months post delivery. (I'm not sure if this 100% true, this is just the stats she gave me.)

She said all the abnormal tests circle back to this diagnosis. The spina bifida was actually just a symptom of the triploidy.

Things looked bleak.

So make the situation worse, the triploidy was causing issues with the placenta, which was most likely causing my blood pressure to be high. It could also cause thyroid issues, etc.

So I could terminate the pregnancy, or I could continue to carry her until she passed on her own, or give birth and just wait. I don't think they really do much to save a baby with triplody, or at least that was the impression I got, since the diagnosis seemed so hopeless. However, the longer I carried her,t he sicker I would get.

I remember getting this call at work, and taking notes like it was just another call. My game face was getting pretty solid I guess. Or just so used to being the recipient of bad news maybe?

So what are my options?

This topic could be sensitive to some, or TMI.

About an hour after I spoke with the doctor that Tuesday, I got a phone call from the genetic counselor. She went into more detail about the triploidy, my risks if i continued the pregnancy, and what my options were if I decided to terminate.

This was the first time the idea of termination ever slightly seemed like a possibility. It was such a scary thought. Since I felt comfortable talking to the genetic counselor (since we were practically best buds now!) I asked her about how the termination would go. She told me there were two options when you're as far along as I am. I'm almost 20 weeks at this point.

The first option is to terminate the pregnancy, induce labor, deliver the baby stillborn, and then they can give you the time to spend with your stillborn baby, take pictures, potentially have a service, cremation, etc. However, it's possible to be in labor for hours or days even before you actually deliver.

The second option is a D & E (Dilation & Evacuation). You're put under anesthesia, and they remove the pregnancy and the placenta.

Well, both sounded pretty awful, for different reasons. I never thought I'd be in the position to have to make such a decision, and I still hoped I wouldn't. I hoped for a miracle, or I even hoped that she would pass naturally and peacefully before I had to do something so drastic.

Legally, I had about 3 weeks left to make a decision, and I didn't even have the full amnio results yet.

Later that Tuesday...

My OB called me a little later in the day on Tuesday, after I spoke to the doctor and the genetic counselor. She asked me if I had any thoughts on what I wanted to do next, after all the info I'd been given. I asked her all the possible questions I could.

Could the early amnio results be wrong? It's not likely, due to all the results we've previously gotten. The high HGC, the high AFP, the abnormal ultrasound, the hypertension I was having, and the FSH results. 

Why would the NIPT not have caught this major chromosomal abnormality? Why did that test say everything was fine? The NIPT really only looks for the extra specific chromosomes, such as the 21st chromosome (Down Syndrome).

I'm sure there was more, it was a long day. She told me that she was referring me to a hospital in Philadelphia, where they would do pregnancy terminations. There was a doctor there that she wanted me to meet with and get evaluated, and she would give me a better idea of what my options really were.

I called her office around lunchtime to make an appointment. Her nurse coordinator was the sweetest woman ever, and really took the time to explain everything to me, offered to listen, and talked about her own experiences with loss. She made an appointment for me to come in that Friday at noon, so I could meet with the doctor. I had all my billions of doctors fax her over all my records so far, so we could go over them Friday.

She called me again later that night, around 7 pm. She told me that the doctor looked over my records that had been faxed, and she wasn't comfortable waiting until Friday to see me. The hypertension was a serious reg flag for preeclampsia, and the situation could really take a turn for the worse really quickly. She urged me to come in the next day.

Admitted to the hospital

I drove down to the hospital in Philly the next day, Wednesday June 24th. I was 20 weeks pregnant. Matt met me there, and we waited to see the doctor.

We sat in the waiting room, which was full of pregnant women. I can't be certain, but at the time they all seemed like perfectly blissful, healthy pregnant women without a care in the world. A girl a few seats away had her newborn daughter with her, and was talking to the other women in the waiting room about how easy her delivery was. I tuned out as well as I could, but man that felt so unfair.

They brought us back and did an ultrasound again. I laid back and held Matt's hand, held back tears, and secretly hoped that there wasn't a heartbeat. But there it was, healthy and strong.  I think the tech tried to hide it from me too. There was no grand announcement of the heartbeat this time, and she told me that if I heard anything, it was just the sound of the blood flowing through the umbilical cord. 

It broke my heart.. 

The doctor looked at the ultrasound, confirmed the findings everyone else had, and tried to get a look at the placenta as well. Afterwards, we sat down and she went over the different processes for termination. I asked about carrying her until she passed on her own. Thinking about that now, it sounds noble, but waking up every day to wait for your baby to die inside you just sounds awful. I wouldn't even realize most likely, since I still hadn't felt her move. The doctor really advised against this anyway, because of my early preeclampsia symptoms. She told me that if I proceeded with the pregnancy, I would continue to get very sick.

So I agreed to terminate the pregnancy. I felt backed into a corner, but I also felt like it wasn't my decision anymore. If I chose to carry, I could get really sick. My baby didn't have a chance either way. I didn't even think of my own health until now, but I knew I wanted another shot at a healthy pregnancy, and I didn't want to jeopardize that. So I was scheduled to come in the next week for the procedure. It was the soonest she was able to do it with backup that was necessary.

(FYI, summer is not a good time to have any kind of urgent care done, doctors go on vacations like crazy.)

She went on to check my vitals, and I guess she didn't like my blood pressure, it must have been pretty high. Why would my blood pressure be high? I'm only sitting at the doctor's, getting the worse news ever, that my baby has no chance, and that I'm getting sicker by the minute! Oy. Anyway, she spoke with her colleague in the hallway, and came back in to tell me that she recommended that I be hospitalized right away. The way my blood pressure was, I was at risk for stroke, and she didn't feel confident that I would be okay until next week.

So I was scheduled for surgery the very next day. I think that's when Matt and I actually realized that this was serious. I was scared.

Choosing a D & E

I ended up choosing a D & E for many reasons. I hope I never regret this decision, but I'm confident it was best for me.

This is my first pregnancy. If I chose to be induced and deliver, I could be in labor for hours, or days. I didn't want this to be my first experience with delivery. I was already so scared to go through a pregnancy again, knowing all the tests I would have to take again, knowing the results could go wrong again. If I could, I wanted this sadness of a pregnancy to be as different as possible form any future healthy pregnancies.

I also don't know if my doctor would have allowed me to go this route, with my blood pressure as high as it was. I was scared.

I know many women choose to see and hold the baby, take pictures, etc. I didn't think I could handle seeing her like that. I was happy with my little ultrasounds, and I wanted to remember her just like that, before all the scary diagnoses. <3

Sometimes this decision makes me feel a little less strong, like I took the easy road. But I remind myself that I was already on such a hard road long before this. I was making the hardest decision already, among many other hard decisions. I did what was safest for myself, and my husband.

I was prepared to do anything to make my daughter's life the best it could be if I could. But there was nothing more I could do for her.

Hospital Night #1

I've never had a stay in the  hospital before. The most intense medical experience was getting my wisdom teeth pulled. I would say that I was dreading it, but I wasn't. I felt safe and taken care of. I think that I would have been such a wreck if I were to go back home, knowing anything could go wrong at any time, and I'd have to run to the ER. I also love staying in hotels, so I tried to look at it like that. So sad, I know.

The first few hours were seriously chaotic. They put me in a little tiny triage room (I thought this was my actual room at first) and hooked me up to an automatic blood pressure machine, took more blood of course, and Matt ran to get me some dinner, since I couldn't eat the whole next day.

The worst pain so far - having those little seaweed lamanaria sticks inserted into my cervix to begin dilation. Twelve of them! I'd rather have another amnio! Matt held my hand again and I focused on the ceiling sprinklers again. They gave me some medicine to start inducing contractions as well.

My family and Matt's family came to visit! We all squeezed into the little room, I'm sure the nurses were thrilled, but I was so happy to see everyone. After everyone left, we just waited for my real room. Whew.

It was a long night of watching TV, requesting more and more blankets because I was beyond freezing for some reason, and a steady stream of percocets, because the contractions sucked. The nurses were so amazing though. I had a ton, and since I was having my vitals checked every hour or so, we got to be fast friends. Two nurses actually went through the same thing I was going through and they went on to have beautiful babies. It was nice to know I wasn't alone. I think they felt for me because I was in the maternity wing but wouldn't be leaving with a new baby.

Surgery Day

The next morning I woke up and saw the whole lamanaria kit sitting on the windowsill, which meant I was getting them taken out and getting new ones put in. Noooo. L

The doctor came in around 8 in the morning and told me that we still weren’t sure what time they were doing the surgery, since I was an add on, but they were hoping for mid day. I went through the whole lamanaria insertion hell once again. I asked for percocets to hopefully offset that pain, but nope. That speculum was so brutal for some reason! So after that, there was nothing for us to do but wait.

I want to say that I couldn’t have done any of this without Matt by my side. He was amazing. Running home to take care of the dogs, returning back at midnight, sleeping in that awful chair next to my bed, watching crap tv with me, and bringing his laptop so we could watch Friends on Netflix. Love that guy so much.

The waiting wasn’t so bad, because I wasn’t really thinking about the sadness of the whole situation. It was all so medical, it was a distraction. I knew I had to do what I was about to do. Our whole entire pregnancy was a long drawn out series of disappointments and fear, that we were just relieved to finally have answers, even if the diagnosis was so terrible. It was out of my control, and I finally gave that control up. I was in the hands of my great doctor, my great nurses, and whatever path was laid out for me.

We got called for surgery around mid day. It felt like TV, getting wheeled down to the OR on my bed, with those big circular futuristic lights above me. The anesthesiologist was going to give me an epidural to numb me, but my doctor must have argued that and I would up getting gassed to oblivion, with a breathing tube down my throat. Next thing I knew, I woke up in recovery, with an irritated throat, and freezing like crazy again. All these random bouts of freezing must have been because they took so much blood from me, I have no idea. As groggy as I was, I tried to see if I felt any different physically. Maybe just a little.

They wheeled me back upstairs, and Matt found me, along with my mom, sister and her boyfriend, who were waiting in the waiting room during the surgery. I told them to go get some food while I woke up a little, and they brought me back ice cream and funnel cake. I was so happy to eat!  Matt’s family and my friend Gina and her mom came to visit me a little later. It definitely was a welcome distraction. One of the nurses came in while everyone was there with paperwork that needed to be signed, but she said she would come back later.

I can see why she did, they were cremation forms.

I stayed one more night, so they could keep an eye on my blood pressure as they took me off the medicine. I was happy to, I wasn’t ready to be on my own just yet. Unfortunately the air conditioner broke in our room, so that was a little rough. I insisted Matt go home and sleep in a real bed, but he didn’t want to leave me. Love him.

A few hours later, lots more bloodwork, vitals checked, and a birth control shot later, they released me and Matt took me home.

The hardest part was that I was leaving, on my own, and I felt like wasn’t a mom anymore.

Recovering the week after.

I thought coming home would be the hardest part of the whole experience. It wasn't easy.

Physically that week after, it wasn't so bad. I was able to go to the mall with my mom, little errands, nothing super strenuous but I felt okay, and distractions helped a lot. Mid week was really crampy and I felt really sick to my stomach at times, which is normal. Bleeding, of course. I tried to relax as best I could, but being home all week isn't something I'm used to, and I started to get restless. I was allowed to have wine again though, so that helped the relaxation a bit!

Emotionaly, it was hard. Sadness came in waves, but I felt like I was doing pretty well. Everyone was really sympathetic and supportive. But then I would feel like something was wrong with me if I wasn't crying all day. The fact that we both went through such a long period of ups, downs and disappointments really wore us down. I spent so much time trying so hard to be strong and optimistic, I just don't think I had much left in me. I was just somewhat thankful for a conclusion, even if it was the worst conclusion possible.

I still have triggers for sure. That week we tried to avoid most family functions, just because it was too much. I felt like there were a million more pregnant women and newborn babies in public than there ever were before, and of course it just felt so unfair. I knew I couldn't hold it against them, and how did I know they didn't have problems of their own? Things like a cereal commercial with a mom and daughter would bring me to tears, or a little girl riding her bike on the sidewalk as I drove to the bank one day. It makes me wonder what my little girl would have been like if she was that age.

I went back to work after about a week, and that morning was so hard. I felt like everything was going back to normal, even though I wasn't. I took a few minutes to cry on the bathroom floor while doing my makeup, like I've done many times over the past weeks. I'm not someone who feels okay crying around other people, and I've managed to prefect my game face throughout all this, unless it was with Matt. I didn't know what it would be like facing people in person. Would they act like nothing happened? Would they ask me questions? Would I melt into a pile on the floor?

I couldn't help but wonder if everyone I know knew the whole story, whether I lost the baby or terminated it, and whether that would really affect anyone. I think I'm still prepared for judgements if they come, I feel like it's inevitable.

Terminated a wanted pregnancy is just so different.

Choosing a name

I found that it was really difficult to choose a name for our baby girl. It took me weeks. Friends and family had been asking if we decided on a name. I wasn’t settled on a name before all he hard times started, and I almost felt like I would know her name when I saw her. But I never got to see her. 

She had been through so much, and so I felt like her name should represent her strength and her short, delicate life. Many babies with her diagnosis don’t make this far, but she did. She was strong, like her mom and dad. I never got to see her or even feel her move, but I felt connected to her in that way. 

We decided on the name Lily, one of my favorite flowers. 

It’s been crazy how many people I know have told me their stories of loss, and one thing in particular stuck with me. A father with two daughters was telling me how him and his wife lost their first pregnancy. They only ever planned on having two children, and if that first child had made it, they never would have had their youngest daughter. They couldn’t imagine life without her. 

I really believe that everything happens for a reason. Right now this is such a hard thing to deal with, but I do believe that sometimes bad things happen for bigger things to come. 

It’s one of the many things I hang on to so I can make it through this. 

3 weeks later.

I'm currently almost a month post D & E. I'm doing okay for the most part. Last week I had my surgical follow up, and things are looking good. My HGC levels are coming down nicely. They told me that my liver enzymes were almost quadrupled right before the surgery because of the placenta, but those are coming down down as well.

We're also waiting on the pathology report of the placenta, to see if it was a partial molar pregnancy, which can be caused by the triplody.

I had to get a depo provera birth control shot before I left the hospital, which lasts 3 months. I have to get that again in another 3 months. They wanted to be sure all my pregnancy hormones go back down to zero before I try to conceive again, because of the partial molar pregnancy. With the PMP, the tissue can begin to come back and cause the levels to go back up, which can also lead to cancer. So, this means weekly blood tests! Once they level out, I'll get monthly blood tests. We can start trying to get pregnant again once they stay steady for a certain amount of time. It feels like such a long time, but thinking about going through all that pregnancy stuff again just gives me crazy anxiety right now!

Meanwhile, the nursery we never started working just sits empty :-( I try to not get stressed out about being too late to have kids, but my doctors all reassure I have plenty of time.

Pathology Results, no PMP!

Finally some good news! I went for my weekly blood test this morning, and my doctor told me the pathology finally came back on my placenta, and it wasn't a partial molar pregnancy! 

I’m happy because this means I don’t have to go back for weekly blood draws anymore to monitor my HGC levels. I can’t count how many times I’ve been stuck with something over the past 3 months, holy hell. With a PMP, there’s a possibility that the tissue from the placenta could come back and possibly lead to cancer, although it’s apparently a very treatable cancer. So that’s why they want to make sure your HGC is steadily dropping.. if it goes back up it could mean tissue is reforming. I really don’t need any more crazy complications to deal with after all this.

This also means that I don’t particularly have to wait the 6 months to a year to try to get pregnant again, I could try as soon as I’m ready to, which is awesome. 

Our due date.

Today, November 13, would have been my due date.

I've been dreading today for a good while. I can be somewhat of an emotional robot, so there's times when I'm even appreciative that I was the one to go through all of this instead of someone else. I feel like I can handle it, and at least turn it into some kind of purpose or new appreciation for life. Maybe it's big sister syndrome, not letting the emotions get in the way of what needs to be done at the moment, and saving all that for a little later. My brain and heart can usually work things out pretty clearly. I'm sure anyone that knows me will attest to this! Not too many people have seen me cry, just Matt mostly... and the lucky people on the el last weekend. I'm pretty sure I'm not the first person to cry on the el at midnight in Philly, am I right?

I've been doing okay. Keeping my distance from things that I'm afraid might set me off. Pinterest had the great idea to fill my page with baby girl related items that might interest me, and I couldn't figure out how to turn them off, so I probably got a little irrational with the Pinterest people. Other little things, just remind me of what I expect life to be like on that particular day if things didn't happen the way they did. How big I would be, what a pain in the ass driving would be like, what I would be wearing, or how I would be feeling. How that bedroom upstairs would look so different than it does now. 

I don't even really know if I ever got the chance to enjoy pregnancy, or even feel like a mom. I feel like all the little decisions I made for both of us to be healthy, all led up to the worst decision I ever had to make. I know I did everything I possibly could, and I was wholeheartedly willing to do everything I could to give her the best life she could have if she was handicapped. I'll be honest, thinking back on planning to get in utero surgery is pretty scary now to think about. But back then it wasn't even a question. I guess it was almost like the big sister syndrome morphed into being a mom. I know my mom would do anything for us without even thinking about it. Maybe it was in me all along. 

I guess I won't even know until I have a healthy baby in my arms and all of this experience will creep up and punch me in the gut, knowing what I have now have and what I lost back here. I feel like I'm missing something I can't yet understand.

It's not unlike me to try to see the positive in bad situations, just so they don't bury me whole. I guess I never would have thought I wanted a baby this much, and appreciated it so much. I know I probably didn't before. Babies were just something scary that I didn't understand and couldn't communicate with. But OUR baby would be awesome. I know every parent thinks that, and they should! But pregnancy was just something that happened and went off without a hitch. You just ate ice cream and pickles for 9 months, and a kid came out. I know that's not true, but you guys all make it look so effortless!

Holy hell, the things I know now. 

The downside is, that I'll probably never ever have a happy-go-lucky pregnancy ever again. I'll see every test coming at me from miles away and know how bad things could be. That really sucks for sure. But all the worry is just the beginning to being a parent, I guess I'll just get it a little sooner! You do everything in your power to protect the ones you love, but there are just some things in life that you just can't control. 

I just want to thank everyone that's been there for Matt and myself through all this, we are so lucky so be surrounded with such support and love. My parents, my sister, Matt's parents, Sue & Jim, friends, co-workers. My heart goes out to all the parents that have struggled with loss as well. I know that knowing we're not the only ones who have went through this has helped me a lot, and i want you to know that I'm here for you as well. Helping you has helped me so much in return. It's never a group you want to be a part of, but you will never meet a stronger group of ladies.

I couldn't have survived through all of this without Matt. He was there through all of it, being our strength when his wife and daughter were both suffering. He's an amazing man and I am so, so lucky to have him by my side. They say situations like this can bring couples closer or tear you apart. It has definitely brought us closer, and I think it made us appreciate what we are and what we could be so much more. 

I miss you, Lily, and I hope you look down on us and your future big brothers and/or sisters (yikes), you did so much more for me than you could ever know. I will always wonder who you would have been and could have turned out to be. But I know you were already just like your mom, because we were meant to meet on Friday the 13th. xoxo

Our second pregnancy, and our second loss.

Posts for this journal are dated reverse for chronological order, but this is being written in June of 2016.

It’s almost been a year since I lost Lily. The months after that, my body was such a wreck. We couldn’t wait to try again, especially me, because I felt like if I was pregnant again before my previous due date in November, it would somehow make everything a bit easier. I needed something to look forward to. But November 13 came and went. I took the day off to take care of myself and reflect on the nightmare that was 2015. It still didn’t feel like it was happening in real life. But Matt and I made it through together, and I was alive and healthy-ish. My blood pressure was still being watched, and my hormones were a wreck. I was still bleeding for weeks straight, when all I wanted was for my cycle to be back to normal. I didn’t want to feel like my own body was a stranger anymore. I felt so out of control and afraid.

I did feel a sense of relief when November 13 passed. I wasn’t constantly thinking about where I would have been if my pregnancy had worked out, versus my current state. I started feeling back to normal. Eventually my cycle came back, and we didn’t waste any time trying again.

I’m wondering now if we should have.

I found out in early December that I was pregnant again. I didn’t have the same symptoms I had before. I wasn’t sick either time, but last time I was sore and super tired. I can’t really remember if that was the case this time around. I was so excited, but scared to death.

At my first OB appointment, everything seemed good! I asked the doctor about getting a CVS test, which is as reliable as an amniocentesis for detecting abnormalities. He said I was welcome to do it, but there is a slight risk (like the amnio) and that it was very, very unlikely that I would go through what I did before. Triploidy is still considered to occur in 1% of pregnancies, and I was in those odds before. It was really rare for that to happen again. I felt comforted by that, so I didn’t push. I couldn’t have that test until 12 weeks anyway, so I decided I’d see how much of a basketcase I’d become by then.

We had a dating ultrasound done a few days later, with Matt along with me. I could have gone alone, but I was really nervous. The perinatal doctor asked me when the first day of my last period was, and I told him, but the size seemed a little off. I told him I had only had one cycle since the termination, so that probably explained the dates being off. But the heartbeat was there and blinking and good! We got an official due date of August 23^rd!

At the time, a lot of our friends became pregnant as well. It was so exciting to be a part of that circle. Having a baby that late in summer was daunting, I figured I’d be sweating my ass off, but all the summer birthday parties! Summer baby shower! I started to get excited about all the potential. Matt and I nicknamed the baby “Swarles” (How I met Your Mother reference) until we found out the sex.

It was all smooth sailing for a while. I didn’t tell anyone unless it was out of necessity, or if they guessed it when they didn’t see me drinking or something. I really wasn’t ready to announce anything until I knew for sure that everything was going to be okay.

On February 4^th I went in for my 10 week appointment. It was with Toba, the nurse practitioner at my OB office, who had worked with me through my whole previous pregnancy. She was so happy to see me back and pregnant, and gave me a huge hug hello! The appointment started out totally normal, and she used the doppler to listen to the heartbeat, even though she wasn’t sure she’d hear much since it was still early. She tried for a few minutes, only hearing my heartbeat. She didn’t seem completely concerned, but maybe she was putting on a brave face for me. She didn’t want to send me off with a question mark in my head after all I’ve been through, so she sent me to perinatal to get an ultrasound, just to make sure.

I walked to the perinatal department alone and half shaking, but still optimistic. Maybe it was just so early, maybe they still had my dating wrong at the OB office and they were expecting too much, maybe they thought I was 12 weeks instead of 10, I should have asked! I walked into the room to get the ultrasound, and the tech didn’t say a word during the ultrasound. I could see the baby one the screen, but nothing seemed off to me at first. I held my breath the whole time.

When she was done, she pointed out that the one thing missing was the blinking heartbeat. I was devastated. The doctor told me that it looks like the heart stopped about a week ago.

I made the long walk back to the OB office, and had to stop and sit down on a bench for a few minutes. I called Matt at work and just cried to him. It killed me to have to tell him that. I walked back through the waiting room (which was full of pregnant women at the time, go figure) and told Toba the news. She had no words. She told me that I could either choose to wait and let my body miscarry naturally on it’s own, or I could schedule a D & C like I had before. I told her I would think it over, and one of the doctors would call me a little later in the day to find out what I decided. I ducked out the back door to avoid the mass of pregnant women and headed home.

I’ll probably always remember that I stopped at Starbucks on the way home to treat myself to a coffee and 2 birthday cake pops. I texted my sister from my car, and a few people from work that knew, telling them I wouldn’t be coming in to work. I couldn’t call anyone, because I knew I’d just break down.

Matt came home a little bit later, and got me out of the house to get me a much needed glass of wine and distraction. All I could think about was that baby inside me. I didn’t have the guts to wait out a natural miscarriage, especially since it had already been a week. The doctors were surprised I had no pains or anything, so who knows how long it would take. I decided on the D & C, and my doctor scheduled me for first thing  the very next morning.

We woke up and headed to the OB February 5^th at 7 am. This wasn’t going to be the ordeal that the previous one was. This was right in the OB office with no sedation, just local anesthesia. I was going to be completely awake and aware the whole time. And that sucked. Just a shot to relax the lower half of my body, then the procedure in the tiny office, while Matt held my hand. I couldn’t see anything, but I could hear it all and it was just awful. It didn’t hurt much, and I remember the OB telling me I was a champ because I didn’t complain. I felt like a pro at this. It sucked.

I felt okay afterwards, since the anesthesia was still doing its thing, so we went to the diner to get some comfort food. Our waitress was pregnant, of course.Another thing I'll always remember. I don't think I've ever had a pregnant waitress before! But they were totally following me now.

Recovery time wasn’t as bad as before since I wasn’t as far along. Now there was just waiting to find out if we could find a reason for the miscarriage. We did, and it was Triploidy. Again. That super rare diagnosis that was really, really unlikely to happen again. Well, it happened again. It’s just that this time, my body figured things out a little bit sooner.

I know everyone was wondering if there was a reason for this, why two consecutive triploidy babies? That I must be a carrier or something, or Matt must be a carrier of something. I had my blood tested, we spoke to genetic counselors, did research. And Nothing. Just two complete fluke pregnancies. Probably two sperm fertilizing the egg, which equals the full extra set of chromosomes. Which is good and bad. Good, because there’s nothing standing in our way of a healthy conception in the future, but bad, because we’ve obviously defeated the odds twice.

So here I am, and it’s June 2016. My HGC finally leveled to 0 only three weeks ago. Which is an insanely long time. I took a pregnancy test on a whim in April, and still tested positive, which really scared me. I thought there was still retained tissue, which can become cancerous. But it happens. From then on, I had to get weekly blood draws just to make sure my HGC was going down and not up. It finally hit 5 on May 18^th. That’s like 4 months! It’s supposed to be like, 6 weeks. It makes me wonder how long my body really would have taken to miscarry on its own.

We’ve been dying to try again, as scared as we are, but we had to wait until I had a full cycle or two, which is impossible until your pregnancy hormone is gone.

We’re still anxious to get there, and I know we will. <3 It’s been so great to celebrate all my friends as they have their own babies, as painful as it can be at times. But that’s life and I’m thankful that it’s made Matt and I stronger. I’ve been so lucky to have him through all of this. I felt the need to document this experience as it’s still fresh in my mind, and I find myself referring back to Lily’s story to compare pregnancies. It’s been so helpful for this one.

Rest in peace my two angels.