Thursday, April 25, 2019

Pregnant with MoMo Twins | High Risk & Rare

First Trimester: The Shock

I had confirmed my pregnancy with my doctor at around 4 weeks through blood tests for HCG (the pregnancy hormone). They give you one test and then a second 48 hours later with the doctor looking to see if the HCG has doubled. Given how far along I was, the doctor told me she expected to see the hormone level at around 150 and double to 300. I had 400 on my first test and it went up to 1,400 in 48 hours. I asked if this was bad and the answer was not at all you just have a really strong pregnancy! I remember telling Pat and him joking, “What if it’s twins?”.

Patrick and I had gone to the OBGYN to confirm our pregnancy at 6 weeks. During that visit, we had received an ultrasound where we saw one yolk sac and one small flickering heart on the screen. The doctor was able to find a strong heartbeat, which he commented that none of his colleagues would believe he was actually able to find one so soon! We were thrilled, even though it was only 6 weeks everything was looking so strong and perfect.

At 7 weeks I was hit with REALLY strong morning sickness that made it difficult to get out of bed, operate like a normal human, watch any screens, or just literally move. It was like the worst hangover of your life x 10 (and non-stop!). Given how high my HCG was getting at the beginning the doctor didn’t seem surprised since high hormones can cause nausea. Since it was so severe though they wanted me to come in to make sure everything was okay. I went to the appointment by myself because I figured there was no point in having Pat miss work for just a simple morning sickness check-up.

At the appointment I was given a prescription for morning sickness. The doctor said since I was there anyways they might as well give a quick ultra-sound check. The doctor said, “Do you know you’re having twins?” But it wasn’t said in an excited manner or in the way one tells people good news, I know that’s hard to describe but it’s the best way I can put it. I said, “No I’m not!” She said, “Oh you definitely are, look there is two flickering heart beats.” I look at the screen and I see exactly what she’s talking about, except that the two babies (at this point they look like little bean blobs) seem to be right on top of each other or attached. I ask, “Are they conjoined or something?” Her response, “That’s what I’m not sure of, I’ve already paged our ultrasound specialist.” Someone walks into the room and tells the doctor that the specialist is in an appointment and the doctor responds, “Tell her it’s an emergency and she needs to leave the appointment asap.” At this point I’m full on BAWLING tears, I just can’t help it- I’m so scared and I have no idea what’s going on. My husband isn’t there and I ask the nurse to hold my hand while the specialist rushed in and starts looking at the screen with the doctor.

After looking for quite some time at the ultrasounds images; my doctor tells me that while it’s very early she’s pretty confident they are monochorionic-monoamniotic twins (also known as Mono-Mono or MoMo twins), because there were clearly two babies but they were very close with only one yolk sac. She explained that mono-mono means that my twins share a placenta and are in the same amniotic sac, unlike most twins that each have their own. About 300 women in the United States get diagnosed with this a year and you have about a 1 in 30,000 chance of it occurring. It’s not hereditary and it is completely random; a MoMo pregnancy is considered a medical abnormality.

The main issue is that even if both twins are perfectly health, since they are in the same amniotic sac they can tangle their cords or even squeeze each other’s- making it a very precarious situation that you have literally no control over. Once they are considered to be able to be viable in a NICU setting (usually around 24-26 weeks), you get moved to be inpatient at a hospital for daily monitoring with the typical goal of making it to around 32-34 weeks for a mandatory C-section (normal gestation is 40 weeks). Making it to 24 weeks is completely in the hands of a higher power, so going inpatient is considered to be a big goal and huge blessing.

The doctor said that after performing a doppler to check their blood flow they didn’t appear to be sharing any, which meant they weren’t conjoined. They wouldn’t be able to confirm that though until they got bigger. I asked her how many times she had seen mono-mono in her career, she said never.

At this point you begin to be in limbo. Since MoMo is considered a high-risk pregnancy you need to be transferred over to a Maternal Fetal Specialist. But the MFM wouldn’t take me until 12 weeks because MoMo’s only have around a 50% chance of making it until then and really in between there isn’t anything they or I can do. Luckily, my regular OBGYN wanted to make sure to see me once a week between 7 and 12 weeks to ensure fetal heartbeats and separate blood flow. I thank her for this. Not every doctor would want to see patients weekly in the first trimester, but it brought me an incredible sense of peace. By week 9 it was also able to be confirmed that they were not conjoined.

I think the first trimester is one of the hardest in a MoMo pregnancy. It’s filled with a lot of shock, fear, and grief for the normal pregnancy you wish you had. Pair this with horrendous morning sickness and I was one hot mess! I recommend making sure to stay in touch with close friends, your partner, trustworthy people, and even seeing a therapist to help you process this very intense pregnancy. Fear can rob you of the joy of pregnancy but you don’t let it have to.

Second Trimester: The Wait

The good old fashion wait! This can be one of the toughest parts of the MoMo pregnancy because you literally have no control over what happens. As humans we love to have at least the appearance of control- this pregnancy offers none. My doctors said at 14 weeks they’d love to already have me inpatient to make sure and know what’s going on minute by minute with the babies. The problem is that before viability (24 weeks in most NICUs) if something is going wrong with the babies, there is nothing the doctors can do as far as medical interventions that would require them to be out of the womb- like cord entanglement. So the second trimester is really a big ol’ sit, wait, and have faith that you’ll make it to viability.

Something else that changes in the second trimester is that you’ll start having A LOT more doctors’ visits. You’ll always have your MFM appointments, but MFMs tend to not deliver and work in tandem with an OB. So you’ll have your MFM appointments and your OB appointments. In the second trimester I was getting an ultrasound almost every week to check in on the babies. On top of that you’ll have extra special ultrasounds that come with most high risk pregnancies such as the echocardiograms on the babies, extra brain screenings, and the option of having a multitude of different blood tests. MoMos tend to come with abnormalities so the doctor’s like to stay on top of screenings to ensure that when they get placed in the NICU, the team will be prepared as possible for their needs.

If you have a large MFM/OB team at a large research hospital like I do, you’re going to see that each doctor has a differing opinion of what’s best for a MoMo pregnancy. This is because that while research has shown that inpatient monitoring after viability is best, there is not enough data to give a conclusion on the amount or type of monitoring. This leads to varying opinions by professionals depending on how conservative their style is. One of the most important things you can ask any of your doctors is, “How many mono-mono twins have you delivered?” This tells you a lot about their experience and from there you can ask further questions regarding their style of dealing with MoMo pregnancies.

I’m on a MoMo mom facebook group and recently someone at 16 weeks was told by their doctor that there was cord entanglement. A lot of people commented that this was totally unnecessary of the doctor to tell the patient because it’s inevitable with MoMos and will only cause the mom distress over something they have no control over. If you have MoMos ask your doctor to please not tell you if they are seeing cord entanglement unless it’s severe. What’s more important is that blood flow in the cords is good (ask to be kept updated on that!).

At 18 weeks we were told that both babies had a small whole in their heart with one have a small leak. The doctor told us it was nothing to worry about and would most likely resolve itself throughout the pregnancy. But HELLO it’s hard not to freak, right? I got my second scan at 26 weeks and one baby has no whole and the other still has a small whole but now with no leak. The moral of this story is that this pregnancy comes with a lot of screening that most regular pregnancies just don’t get. That means they’re going to catch things that otherwise wouldn’t be caught in normal pregnancy and usually it’s issues that can self-resolve. If a doctor doesn’t really seem concerned with something, there’s no need for you to be either.

Now, a lot of MoMo moms decide not to have any kind of baby shower because they are too nervous about the pregnancy. At first I also did not want to have a shower or even set up a nursery. I thought if something happened, then memories of the shower would just make me too sad. I then had someone tell me, “If you lose the twins, will you actually regret having a shower to celebrate the pregnancy?” My answer was no; it wouldn’t make a difference. Your answer might be different. As hard as this pregnancy is though, I really do recommend trying to celebrate the pregnancy as much as possible. Even still, I held back a lot from telling people about our MoMo status. I didn’t make that public knowledge until I was inpatient as I felt too nervous making that journey a point of attention. All of this though is a personal decision and style- I don’t think there’s a right answer and do what’s best for you!

Third Trimester: The Long Hospital Stay

Okay, so I’m currently in this phase right now so this part of the blog can’t be as conclusive as I’d like it to be. I can say though that I’ve been here for three weeks and have a pretty solid grasp of how things work. If you have a MoMo pregnancy and are reading this, you may have a very similar schedule. As mentioned above though, because there is no conclusive research on us in regards to inpatient monitoring (NST- No Stress Test), the experience can differentiate from hospital to hospital.

From what I see in my MoMo mom group, my time in inpatient is pretty common. When I was first here I was monitored three times a day for 20 continuous minutes as a time. These 20 have to be a solid 20 minutes of having both babies on the monitor at the same time, so while it can be 20 minutes- it’s usually an hour. Getting monitored means that you lie your bed while they have a round sensor placed on each of the babies with an additional one to measure your contractions; all affixed with stretchy bands. When you’re first admitted the babies are usually small and therefore move around a ton. Thus, the stretchy band is pointless and you’ll just have to have your nurse chase them arounds your tummy to get a solid read. It becomes so much easier as they get bigger! 

By the end of the second week though I was feeling like I wanted to get monitored more. The doctors didn’t seem to think it would make too much of a difference but told me if I wanted to move to four times a day, they would be more than fine with that. That very day I asked for more monitoring they caught some decelerations of the baby’s heart rate & contracting that they found concerning so I got bumped up to the Labor & Delivery floor. The issue with the antepartum floor is that they can only monitor for up to two hours at a time and they wanted me on for a longer duration. The L&D floor has the one-on-one staff needed for continuous monitoring, so they felt it was better for me there. The boys ended up chilling out and I was able to return back to my normal room after about 24 hours.

For a week I kept ping-ponging from my antepartum floor to the L & D floor to the point the doctors felt like I should really just be on the L & D floor permanently. They didn’t think they’d need to deliver me soon but wanted the capability of longer monitoring if need be. So currently at 29 weeks I’m a resident of the L & D floor but generally on a four times a day monitoring session about an hour each. While I like that I get the capability of longer monitoring sessions, L & D is a different vibe from the antepartum floor. It’s a much more intense environment and the staff is generally not used to have long-term patients. BUT, L & D has a beautiful view of the water- so I can’t complain too much!

For now, the boys have calmed down and we’re just awaiting their arrival at hopefully their full 32 weeks! I’ll try and update this as the journey continues.


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