No News is Good News
It has been a few weeks since my last update, and that is for good reason. Two weeks ago we attended another appointment to monitor the abnormal DV reading. The doppler test and ultrasound revealed that things had remained consistent--meaning, the DV reading was no longer abnormal. However, the technician thought that she had discovered another abnormality. She therefore asked us if we were familiar with TTTS (it has been a different technician almost every visit) and said she needed to speak to the doctor. We sat in the room for about 15 minutes worrying "what is next?". As soon as something seems to resolve itself, another thing pops up. The doctor came into the room and had the technician redo the scan and everything looked normal. The first test was just providing a poor reading. This was a major relief, and we were told that we could go an entire week before our next visit rather than having to do twice-per-week.
The following Monday was the big 20-week ultrasound and doppler test where they also looked at anatomy. This test was much longer than normal, lasting a couple hours. However, everything looked good. This was the first doctor appointment so far where they didn't find something concerning to monitor, which was a relief. Especially given that this scan was an important one. We were therefore told that we could wait another week before our next appointment. That appointment was this morning (5/22/2023) and it was another successful scan. We had the regular ultrasounds and doppler followed by the counseling appointment that is scheduled every four weeks. The doctor said everything looked great and we can wait another week before our next appointment.
It's been an amazing relief these past three weeks as we have had nothing but good news. This is quite the change from weeks 12-19, when it was thing after another. Here's hoping that things remain consistent. Below is the 3D image from the anatomy scan a week ago for Baby A. Although we received ultrasound images the last three weeks, the images have been difficult to read so I'm only uploading this one where you can make out the facial features.
The Rollercoaster Continues
The rollercoaster continues. This entire experience has been nonstop highs and lows. The good news is that when we to the ultrasound appointment yesterday, the doctor discovered that Baby B's ductus venosus (DV) doppler waveform had returned to normal. This is a huge relief. However, they want us to return on Monday. Due to the abnormal DV reading earlier this week, they want to continue to monitor twice a week. If things look OK on Monday, we can go back to weekly appointments. But for now they will be twice a week.
If I do decide to make this blog public one day, I hope people who are going through the same thing will be read this and know not to give up hope. We aren't even to week 19 yet and have been on the edge four times so far. The first was the absent nasal bones on both twins, the second was the high NT score on Baby B, the third was the potential for Baby B to be anemic based on abnormal blood flow to the brain that was observed, and the fourth was the abnormal DV doppler waveform on Baby B. In each of these instances things have miraculously regulated on gone back to normal. The nasal bones developed a week later, B's NT went back to the normal range after a week, B's blood flow to the brain went back to normal after three days, and B's DV waveform went back to normal after three days.
The doctors continue to monitor these things closely twice a week in case they don't regulate and continue to be abnormal, or head in the wrong direction. We are lucky that everything so far that the doctors have found concerning has managed to go back into the normal range, even when the odds were stacked against us early on. So don't lose hope if you have a bad week, as there is a chance things will return to normal. But it's a nonstop rollercoaster ride.
Our next appointment is in a few days on Monday. Below are the scans from yesterday's appointment. We were in a different room than normal using a different ultrasound machine, so the quality of the images isn't as good. They looked fine on the monitor, but the print outs are darker than they usually are. The ultrasounds tech named Baby A "Superior A". When I asked why, she said she accidently hit the superior button on the machine so that was a mistake (ha), but it is included on the image below.
Can't Seem to Catch a Break
We had our weekly ultrasounds today and yet another issue popped up. It seems like we can't ever just have an appointment where the doctor says "everything looks good, see you next week." The issue today is with Twin B, who has been the subject of all of the problems (or potential problems) to this point. The doctor noticed that Twin B's ductus venosus (DV) doppler waveform was abnormal, while Twin A's DV was normal. She explained to us that this can be an indicator of TTTS. Abnormal DV can be a sign of cardiac dysfunction in the second trimester. As this report notes, DV allows oxygenated and nutrient-rich venous blood to flow from the placenta to the myocardium and brain. Increased impedance to flow in the fetal ductus venosus is associated with fetal aneuploidies, cardiac defects and other adverse pregnancy outcomes. And this report reveals that, in twin pregnancies, abnormal DV flow is associated with chromosomal abnormalities and cardiac defects. In monochorionic twins, abnormal flow in the DV in at least 1 of the fetuses increases the risk of developing TTTS.
Given this, the doctor wants us to return on Thursday for another doppler to see if anything has changed. As soon as we jump one hurdle, we run into another one. The stress of this, coupled with my current job situation, has been taking a serious toll on my physical wellbeing. I am stressed to the max and have been dealing with heart palpitations recently as a result. It is also difficult to sleep. Losing my job on top of all of this has just added to the anxiety.
Below are the images from today's ultrasound.
More Ups & Downs
Last Thursday (4/20/23) we went to KU Med for a routine ultrasound. We had been going to KU and a specialist in Overland Park, but KU recommended we do everything in-house there for now. Luckily we only live 10 minutes away, so it is an easy trip. This ultrasound was a bit concerning. The good news is that there was no sign of TTTS and most everything looked OK. The somewhat concerning news was that there was an elevated MCA PSV on Twin B of 1.6 MoM (multiples of the median). Twin A was 1.2 MoM, which is within the normal range.
Twin Anemia Polycythemia Sequence (TAPS) occurs spontaneously in less than 5% of Mo Di twins. Stage one of TAPS is when one twin is anemic with a MCA PSV > 1.5 MoM and the other is polycythemic with a MCA < 1.0 MoM. Although the did not meet this criteria, since B was outside the normal range--being greater than 1.5 MoM--they wanted us to come back on Monday to do another test and make sure that these values had not gotten worse. We therefore had to hold our breath once again.
Luckily, when we went in for the ultrasound and doppler test this past Monday (4/24/23), things had gotten better. Twin A was still 1.2 MoM, which was good, while Twin B had regulated and was down from 1.6 MoM to 1.4, placing her in the normal range. This was a relief, but something that could change week-to-week and will need to continue to be monitored along with everything else. For that reason, we will have ultrasounds every Monday from here on out until the end of the pregnancy. This is week 17 and we have already had six ultrasounds. We therefore will likely have 14-19 more for a total of 20-25 ultrasounds during this process. I think most "normal" pregnancies only have a couple.
I will plan on updating this blog weekly with the latest results, and photos from the ultrasounds when possible. Below is an image of the ultrasound from last Thursday (we did not get copies of the most recent ultrasound images from this past Monday).
Rough Waters Ahead
This post will provide updates on three separate things that have occurred over the last week, in chronological order. The first, and most unfortunate, is that I was laid off from my job. This is especially worrisome given that my wife will not be working in a month, and with the medical bills pilling up and all the expenses on the horizon, I'm not sure how we are going to pull it off. But I'm confident that we will. We have been smart with our money and saved as much as we could over the years, and do not have any debt (except for mortgage). Still, I will need to find something soon, and hopefully a job with health insurance.
I had been at my most recent job for six years. I did not tell my co-workers about this pregnancy and its complications, but three weeks ago I informed my boss on a call because I felt like she should know. I informed her that I would be needing to take some time off on Mondays to take my wife to doctor appointments, and would be using a couple weeks of PTO once they arrived given they could be in the hospital for awhile. After this call I was removed from all meetings and my boss stopped responding to my e-mails. I initially thought it could have been that they were trying to decrease my workload given the circumstances, but instead I received a layoff notification from a third party. All it said was that they "have decided to go in a different direction." That's it. I never received a call, and nobody said goodbye. It was one of the most bizarre and, quite frankly, unprofessional things that has ever happened to me. If this was due to financial reasons or the company going in a different research direction--I get it--but at least tell me that. The radio silence, vague wording, and suddenness of it all does have me wondering if I got axed because they thought I might be distracted in the future given the circumstances. But I don't have time to dwell on that now--need to keep moving forward. I applied a few jobs this week and landed one interview. Hopefully something develops soon.
The second thing is that we decided to look at the gender information. Since the twins are mono-di, they are the same gender. But we were holding off on finding out for awhile. But given the other news this past week, my wife wanted to know. Since we had the NIPT blood test done a couple weeks back, they reported on the gender when we got the results. However, we had not looked at it until this past weekend. And...they are girls! My wife is very excited. I didn't have a preference and would have been happy regardless, but she really wanted girls so I am happy for her. My mom is also thrilled, as she grew up with three brothers, had three sons, and her two grandkids so far are both boys.
The third thing is that we received the ultrasound photos from the week 13 scan that we got from the specialist (the second opinion). I have uploaded those below for reference. Our next ultrasound is next Thursday morning, so I am excited to see how much they have developed over the past month--as I imagine it will look much different.
Life is a constant stream of ups and downs. We had some really low downs when we had the 12 week scan, but then a big up when we had the week 13 scan and NIPT test results, then a down when I lost my job, and an up when we found out they are girls. Just going to continue this ride and see where life takes us. Luckily I have a 50k race tomorrow morning--I could use the distraction.
Yesterday (3/27/23) was an amazing day. We went to the new doctor's office for a second opinion and additional scan. When the new ultrasound was conducted, they were able to locate both of their nasal bones--which had been missing on the previous ultrasound. This was a major relief, and a somewhat unexpected one. When we had the doctor's appointment last week, the lack of nasal bones and high NT reading had them very concerned. And I understand why. When conducting my desk research, I came across multiple articles linking the absence of nasal bones during the 11-14 week ultrasound and trisomy 21. In fact, this NIH study found that the nasal bone was absent in only 0.5% of chromosomally normal fetuses (3 out of 603 observations) during ultrasounds at 11-14 weeks gestation. Which had us very concerned. Given the odds, it was an amazing discover that the new scan showed that these had formed later...or perhaps they were just able to get a better view. Either way, I'm happy we went for this second opinion.
Additionally, the new doctor said that the NT reading for baby A was the same as last week (1.5), but baby B was now 1.7, which is a far cry from the 2.8 reading we had last week. As noted in a previous blog post, several articles claim that the normal NT range is upward of about 3.0 mm. However, this does not tell the full picture--it is not just the NT score, but the NT as a percentage of the baby's size. Baby B is smaller than A and smaller than average, so an NT of 2.8 put B in the top 95th percentile for B's size.
I am not sure why the NT changed so much--is it because B grew more in a week, or because of an inaccurate scan/measurement? This is something I will have to investigate further. But it did have me wondering--if it was an inaccurate scan/measurement...which one was off? The first one, or this new one? I pondered that for a few hours yesterday until we received a call from the first doctor's office. They had our blood test results and it had only been a week (was supposed to be two weeks). The results came back negative for Trisomy 13, 18, and 21--there is only a 1 in 10,000 chance that they will have one of these conditions.
This was a major relief and massive U-turn from last week. I understand why the doctors were so negative last week--the absence of nasal bones and high NT at this stage of the pregnancy was not good, so they let us know that their outlook wasn't positive. We were devastated, but only to find out a week later that things are looking much better. I get that it is a science and they are running off the odds--as a social scientist I deal with data and probabilities every day, so I understand this better than most--but it certainly put us in a tough position mentally. Talk about a rollercoaster ride of emotions.
Although we received this (very) positive and unexpected news, we are still in for a long few months. The biggest and most likely hurdle we now need to overcome is potential twin-twin transfusion syndrome (TTTS). According to the doctor, this occurs in 15% of mono di pregnancies, and is most likely to occur during the 16 - 28 week period. There are also factors that can increase these odds, and the first doctor mentioned the egg splitting later than "normal" is one of those--which they somehow can tell occurred (don't ask me how). Which places us north of the 15% average. Therefore, beginning at the 16 week mark, there will need to be weekly ultrasounds to monitor how they are developing and if TTTS is likely. So, fingers crossed we can make it through that, but for now we are celebrating this major victory. We will cross the next bridge when we get there. Right now I am just taking this one day at a time.
Going to Seek Another Opinion
The overwhelming nature of what we are going through comes in waves. I haven't felt "normal" at all over the last two days, but some periods are better than others. I'm trying to block out things mentally as much as possible, and it's proving difficult. When I was doing my run yesterday, I suddenly became overwhelmed with grief about 45 minutes in and completely broke down. It was as if I was stabbed in the chest and a bunch of emotions came roaring up and I just broke down. Today has been better, but this is a very challenging moment for me mentally.
Sabrina has decided to seek out another opinion with another doctor. I don't think this will tell us much, as we are still awaiting test results that won't arrive for another two weeks or longer. But there are only a few weeks where you can get an NT scan during the pregnancy. She wants to get another one next week to confirm what was found this week, and also see if there is a chance the nasal bones will have miraculously appeared. Part of me thinks this is just a search for false hope, but I am supporting her and will go along with it if it helps give her peace of mind. That appointment is scheduled for next Monday (3/27/22).
Below are some images. The first is from our first ultrasound at 8 weeks, showing both babies. The next two images are from our latest scan this past Monday at 12 weeks. As noted in my previous post, there is a significant difference in the NT in baby A and baby B, with baby B having the abnormal NT. In addition to the measurements provided, the images also reveal the significant difference between the babies. This is in addition to the lack of nasal bone in both A and B.
I just wish that there was something I could do to help them, but I feel helpless at this moment. All we can do is wait and hope.
Fear of the Unknown
I feel odd starting this blog/journal, as I tend to be a private person and this is something that I haven't even shared with my family to this point. Which is why I am making this page/post private as of today (3/21/2023), although my intention is to one day make it public in case others going through the same thing find it helpful. Google can be a frightening place for those of us seeking information about high-risk pregnancies, especially when your wife is carrying mono/di twins. They are rare, so the available data and information that is out there is limited in scope compared to singleton pregnancies--or at least what I've discovered in my limited desk research.
My wife and I started trying for a child in October 2022, and she discovered she was pregnant in January 2023. When we went in for the 8-week ultrasound, the scan showed that she was carrying mono/di twins. Both of them were the same size and had a heart beat of 147. I was excited, she was scared. It took her a few days to get used to the idea, but I could tell she was at peace with it. It was just the initially shock of it all. My mother-in-law visited shortly thereafter for a week, which was helpful.
From the start, I was reluctant to tell anyone. Given the high-risk nature of these pregnancies, I wanted to temper expectations. So we did not purchase any baby-related items and only told my wife's parents.
Yesterday (3/20/2023) we went in for the 12 week ultrasound, which revealed multiple potential complications. The stress that we have both been feeling over the last 24 hours has been insurmountable. I feel sick to my stomach because there is nothing I can do. Hence, I have decided to start this blog today, as I have learned from people over the years that journaling can be therapeutic. So I hope this helps somehow.
The ultrasound revealed two complications. The first is that neither baby A nor baby B have nasal bones. At this stage of the pregnancy, that means both are at very high risk of Down Syndrome. My (limited) review of the medical literature over the last day shows that failure to identify a nasal bone at this stage of the pregnancy means a chromosomal complication in all but 2% of pregnancies.
To compound this issue, the ultrasound also revealed that the babies are different sizes and baby B has a concerning Nuchal Translucency (NT) measurement. Baby A has a normal NT of 1.5mm, while baby B has a much higher NT of 2.8mm. A brief scan of the literature shows that NIH studies put the normal NT range for babies at this stage at 1.1 - 3.0mm. However, this is not the full story. My discussion with the specialist at the hospital revealed that it is not the NT value on its own, but the NT value in relation to the baby's overall size.
This is where the complication comes in. Baby A is 55mm has a normal NT of 1.5mm, while Baby B is smaller at 47mm and has an NT of 2.8mm. So not only is baby B smaller, but the NT is larger. The larger NT, coupled with the absence of a nasal bone, makes the likelihood of DS or other chromosomal abnormality very high. The doctor therefore recommended we do additional blood tests, which were also conducted yesterday. However, the results will not be available for over two weeks. So now we play the waiting game.
To compound the above NT issues and nasal bone absence, there is also concern over the difference in size between A and B. Since they are identical twins, they should be the same size (or so I've read, I am not a specialist in this area). I did find a few NIH-published studies that showed that higher NT and size differences in mono/di twins increases the likelihood for twin-twin transfusion syndrome (TTTS), which can be fatal for both of them. Therefore, even if by some miracle we beat the odds regarding the issues above, we will still have to monitor for TTTS on a regular basis. The doctor told us that the egg split later than normal, which opens up even higher risk possibilities. He is very concerned about baby B.
It's not the doctors' fault, as they are just giving us the facts/information, but they were very clear with us that our outlook was negative and extremally high risk. And I don't just mean for chromosomal abnormalities--which at this point I think is a given due to the odds--but that they survive and make it to-term.
It's difficult to explain the range of emotions I have felt over the last 24 hours. I'm trying to stay off of the Internet in my search for answers, because it's only making things worse for me mentally. The hardest thing to comes to grips with is that there is nothing we can do--it is all outside our hands. So we just wait and see. Physically, I feel awful. I went out for my normal run yesterday evening to release some stress, and my heart rate was significantly higher than normal. I was also struggling because I wasn't able to keep any food down yesterday. Both mentally and physically I feel terrible. Perhaps I will turn the corner in the future as this news settles in and I come to acceptance, but I have not yet reached that point.
I feel at odds about sharing this information publicly. Perhaps I will keep this blog private for awhile and only post after whatever happens. For now it will serve as a personal emotional outlet and journal.