Tuesday, April 4, 2017

Please send your MoMo Stories!

Dear Monoamniotic Monochorionic Families,

We haven't been very active on this site but success stories meant so much to us while we were expecting.  We'd like to update the blog with some recent stories.  If you want to share your success story please email us at monoamniotictwinmoms@gmail.com and we will be happy to share it!  Email your story as well as a picture (or a few pictures) if you want to share your beautiful MoMos!

Monoamniotic Twin Moms

Oh my goodness, Twins!!! (August 2015)

     I was about 20 weeks pregnant when I went to my first pregnancy appointment with my OB.  Since this was my sixth pregnancy, I felt like I knew what to expect, so didn’t feel the need to make any appointments earlier in the pregnancy.  My doctor joked with me about my being too busy to bother with appointments, since I work full time.  I complained to her about my new health insurance, which had a high deductible, so she commented that we’ll have to make sure this is a vaginal delivery (cheaper than a c-section), and I remember thinking, “Of course it will be vaginal, all of my others were...”  Then she started doing the ultrasound scan, and she turned to me and said, “There’s two”, and I responded, “You’re joking, right?”, thinking that she was teasing me.  She turned the monitor to me so I could see the two fetuses, at which point I said “But, twins don’t run in my family”.  “They’re identical; it’s not genetic, just chance” was her reply.  I was so surprised, I think I said “But it should be genetic!”  As my doctor kept scanning, her entire demeanor changed from the light, friendly attitude, to a very serious one.  She told me that she didn’t see a dividing membrane, but at that point, I really had no idea what the implications of that were.  She hurried me out of her room and called a maternal fetal specialist for me, and got me an appointment the next day for the 20 week detailed anatomy scan.

     I went to the anatomy scan blissfully unaware of the high risks of my pregnancy.  After a long appointment, during which both fetuses were scanned very carefully and were thank God found to healthy and defect-free, the doctor came in and explained in a very matter-of-fact manner that my twins were monochorionic monoamniotic, which is high risk for cord entanglement that can lead to fetal death, and if one twin dies in utero, that frequently causes brain damage to the other twin.  He told me there is no treatment or “fix”, we just monitor weekly until ~28 weeks, at which point in-patient monitoring is recommended, and that delivery is via c-section between 32-34 weeks.  I remember my head was kind of in a whirl after the appointment.  I went out to my car, called my husband, and told him the whole thing.  Then, wanting to share with someone else, but not yet ready to freak out my mother, I called my friend, who happens to be a nurse.  We talked, and I was feeling a little better, until I checked out a link that she had emailed to me, which quoted a 40-50% fetal mortality rate.  That’s when I remember that it really hit me, “Oh my goodness, my babies can really die in utero at any second!”  I spent the rest of the day, although I was at work, googling monoamniotic twins.  I also read a lot of case studies and articles published in medical journals, since I have access to those via my workplace.

     For the next eight weeks, I went to weekly ultrasounds, praying each time that the babies would be alive.  At 28 weeks, I checked in to the hospital for in patient fetal heart rate monitoring.  It was really weird checking in to the hospital, since I felt totally healthy, and wasn’t in labor, so it felt wrong to be in a hospital.  But I kept reminding myself that this isn’t for me, it’s for the babies.  Initially, I was on intermittent monitoring for one hour, three times a day.  Every evening I would pray that my babies would survive through the night, and every morning, when the heart beats were found on the monitor, I would thank God that they were alive.  I also had weekly ultrasounds in the hospital, and got steroid shots when I first arrived.

     Although it was much more comfortable to be monitored only three times a day for one hour, I didn’t completely understand how that would help if the babies were in distress at some off-monitor time, and I had lengthy discussions with my OB and the specialists about whether cord knotting is sudden, or are there detectable signs of fetal distress prior to something catastrophic.  The difficulty is that since monoamniotic twins are so rare, there’s just not a lot of data.  Also, my specialist group had three doctors, and each had a slightly different opinion, which added to my confusion.  One felt that the way the cords were tangled in my particular case, which was a big ball, not a long twisted braid, was actually more favorable, and he felt one hour 3x a day was sufficient.  Another doctor felt, the more monitoring the better.  I actually found out that my friend’s cousin had monoamniotic twins a few years ago, and I spoke to her to hear her experience.  She was in a top hospital in NY, with a top doctor, and she was monitored basically 24/7, with only 5 minute breaks here and there for bathroom, etc.  Hearing that actually made me more nervous, since it seemed like my monitoring protocol was too lax relative to that!  In the end, my OB and I settled on as much monitoring as I could tolerate, with freedom to unplug whenever I wanted, for however long, and no monitoring at night.  I kept myself busy with lots of reading, talking on the phone, surfing the web, and praying.
It was really hard being in the hospital away from my husband and kids, and I missed them terribly, especially at nights.  They came twice a week to visit, but when they left, it exacerbated the loneliness.  They would call me every evening, and I would read them a bedtime story that I found online.  That was my virtual parenting, and I even told the nurses that I coined a new term “teleparenting”.

     After I passed the 29, then 30 week mark uneventfully, thank God, I started pressuring my OB about a decision as to whether to deliver at 32 or 34 weeks.  She wanted a wait and see approach, but I’m very goal oriented, and needed a date to look forward to.  My OB pretty much left it up to me, so I asked for a consult with the neonatologist to hear about the difference, both short and long term, between a “32 weeker” and a “34 weeker”.  In the middle of the consult, when I was 31 weeks, Baby B began to have decelerations.   There’s nothing as nerve wracking as hearing from the monitor the sound of your baby’s heart rate drop.  The nurse rushed in, put me on oxygen, rolled me on my side, and was grabbing for the phone to call the attendant OB.  I remember thinking “Oh my, it’s too early, I’m not ready!” and praying to God that my babies stay in a little longer.  After a tense minute or so, Baby B’s hear rate picked back up.  I was put on IV to increase fluid intake, and remained on the monitor the rest of the day.  Thank God, both babies heart rates looked fine for the rest of the entire day, so the decision was made not to deliver.  Based in the discussion with the neonatologist, and after reading whatever relevant journal articles I could find, my OB and I kind of settled on delivery at 33 weeks.

     At 32 weeks, I got another round of steroid shots.  The next day I had an ultrasound, and though the heart rates and blood flow looked OK, both babies appeared to be sleeping, as there was no movement, and no visible chest rise indicating breathing.  We waited about 40 minutes, which is the typical in utero “nap time”, and we prodded and vibrated, but got only minimal movements.  The specialist concluded that since the main risk in my case was cord entanglement, and blood flow and heart rate look good, we don’t need to be concerned.  He mentioned something about steroid shots potentially making the fetuses sleepy, so he dismissed me back to my room.  The heart rate tracings for the rest of the day were in the right range, but had much less variability (rises and falls) than before, which isn’t a good sign.  I went to sleep praying that my babies will be OK.
The next morning, at 32 weeks and 4 days, the specialist turned up in my room with the portable ultrasound machine.  I remember thinking, “Wait, you said yesterday that you weren’t concerned, so why are you here now?”.  He scanned me, and it was much the same as the day before - good heart rates and blood flow, but minor movement and no breathing.  Again, he reached the same conclusion as before, and left.  About an hour later, Baby B had a decel, and I was rolled on my side and put on oxygen.  At this point, my OB was getting worried about the whole situation, and decided that was it, I was being delivered.  I remember thinking “wait, we wanted to get to 33 weeks, it’s still early!”, but I trusted her call.  

     I called my husband and informed him that they wanted to deliver me now.  He didn’t realize that now meant “now”, and by the time he dropped off the kids at various locations, he arrived after the delivery.  Meanwhile, I was prepped for a c-section, given some terrible tasting antacid to drink, since I had eaten lunch (a no-no for anesthesia, but we hadn’t planned on delivering today!), then rushed into the OR for delivery.  Everything was super quick, and within the same minute, doctors delivered two 3 lb. baby girls.  I didn’t hear the babies cry, and wasn’t given the babies to see or hold, so I was a little concerned.  At that point, my husband showed up, and told me that the neonatologists said the babies seemed “stunned” and not very responsive.  Both babies had very low initial APGAR scores (I think 1 and 2), and were put on CPAP right away.  Later, I was wheeled in to the NICU to see them in their isolettes- it was so hard not being able to hold them after the whole stressful pregnancy!

    The next morning, I got the report from the neonatologist, and thank God, both girls had perked up after their first few hours of life, and become more responsive.  At one point during the night, they thought they might have to intubate Baby A, but then she started breathing OK again with the CPAP.  After about 2 days on CPAP, they were switched to room air.  After a head ultrasound at two days of age, I was finally able to “kangaroo” them, though only one at a time.  They stayed in the NICU for only two and a half weeks to learn how to feed and gain weight.  They went home on the same day, weighing approximately 4 lbs.  And they’ve been doing amazing ever since!  Every day, when I look at them, I thank god for my miracle girls!