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Rainbow Twins' Birth Story

When we learned we were having twins, it was a lot to take in. When we learned they are mono-mono twins, occurring roughly once in 65,000 pregnancies (or 1% of identical twins), with extremely high risk of death from umbilical cord entanglement, it was A LOT to take in. But we had many weeks and months to slowly come to grips with the reality of our situation. Although our MFM (maternal-fetal medicine doctor, aka high-risk OB) recommended going inpatient at 26 weeks with delivery by planned csection at 32 weeks, it was still a tough decision to make. We have four children at home, and me being away for 42-45 days was no easy feat for any of us!

As weeks passed and the babies grew, and while I also saw stories of women with proximate due dates lose their MoMo twins, it began to feel urgent to do ALL we could. My personal turning point was when I realized, "Would I live in the hospital for six weeks if it would mean Desmond didn't die?" So obvious that I would, a hundred times over! These girls deserved as much love and sacrifice as any of my children. 

So on Tuesday, July 17, I faced my triggers and anxiety and went back into that OB emergency entrance at The Womens Hospital-- same place I went on July 9, 2016 to register for my inpatient induction after Des had died. It was traumatic, I will not lie.

The day I hit 27 weeks, during inpatient

We got through that. I had asked several times to have a room where when you entered, the bed was on your right. The room where I had Jacinda was like that; the room where I had Desmond was on the left. It was important to me to, as much as possible, create a totally new experience and memory. Antepartum was full so they put me in a LDRP suite the first night. It was fine until I saw the sheet draped bassinet. When we left Des' body behind, it was in something exactly like that. I cried; the nurse took it away. 

I cried a lot the first day. I missed my family, I was terrified, etc. They gave me a steroid shot that caused severe insomnia; I got maybe 2 hours of broken sleep all night. The second day, a room opened in antepartum and I was moved. My new digs were smaller, but had large windows that looked out on the highway and church next door. It also had a fridge in the room and generous visitation hours (as in, no limit). The nurses who work in that unit are very understanding of the complex emotional experience of being inpatient for a long time at a stretch. They did their best to minimize how often they came into the room. They were all, with the exception of one crabby lady, very nice and helpful.

My family visited me once or twice every day.

Wheelchair games

Fly swatter fun. We spent a lot of time in this garden area at the front of the hospital.

The next couple of days were up and down. At first, I was having NSTs (tracking the babies' heartbeats on a monitor with a printout) 1 hour three times a day. After 4 days of boring, baby B decided to have some unusual tracings - a few moments of abnormal highs followed by sudden drops. MFM reviewed it and said let's increase NSTs to 2 hours of every 8, and start doing a lot of ultrasounds. They also convinced me to have a 24-hour magnesium drip to give the babies neuroprotection (against brain bleeds, cerebral palsy, etc). I had been told by many women that the mag drip was horrible. I was told that I would feel like I was on fire for the whole 24 hours, my vision would be blurry, I would have trouble breathing, be unable to walk... and really it wasn't that bad. It hurt going in, but an ice pack on my arm helped. I felt hot the first 30 minutes, then it went away. I had none of the other issues. My limbs felt heavy and tired near the end of the 24 hours, but I was able to walk and use the bathroom the whole time. The worst part was that the doctor wanted me to be 'continuously monitored' while on it and the babies were not having it. For 13.5 hours straight, I had nurses trying to poke and prod and keep the babies on the monitors. Finally at 4am I lost it, screamed I CAN'T TAKE IT ANY MORE YOU HAVE TO STOP. And they left me alone. Until 6am! 

The next several days were pretty chill. Boring, really. I had to be on the monitors 2 hours of every 8, but both babies had to be tracing at the same time. Since mono mono twins can swim all over the womb (no membrane), they would often need to be readjusted. Some sessions took 3-4 hours leaving me with 4 hours off. I developed headaches and back/hip pain from lying on my back so many hours a day. PT came to do occipital release. It did help. Muscle relaxers and migraine medicine helped somewhat with the pain too.

Then things got a little wonky during the 8-10pm session Saturday night, July 28. Baby B had a long extended period of tachycardia (her heart was 200bpm for nearly 25 min nonstop; normal is 120-160). The nurse called the MFM who wanted me to go get a biophysical profile. So I spent 90 minutes in the ultrasound room. The girls both scored 10/10 so they said I could go to sleep. Sunday, just a few dips during morning and afternoon sessions. I asked the MFM if we should increase monitoring. She said it wasn't necessary. My gut said it was, but I decided to speak with my other doctors the next day.

Monitoring strip July 30, 5:30 a.m.

Monday July 30, I woke at 4am for my monitoring session. The first half hour was easy peasy. Then some dips from baby B, down to 80s/90s for 3-4 minutes at a time. The nurse called the MFM who started watching it from her house. Baby A then started having abnormally high heart rates, so neither were in the 120-160 green zone. MFM said bring in ultrasound to get a look. I texted Dave about 5:30am to tell him what was happening. Ultrasound came in, but her machine had to warm up. Several more nurses came in to try and keep a close trace on babies. Sometimes one would drop off, pretty normal usually but it was worrying everyone. I was texting David each step of the way, because I really didn't want to overreact and have him leave the kids home sleeping alone, but it was starting to feel scary. This went on for 10-15 minutes, until I heard one of the nurse's phone ring. She stepped into the corner of the room and just as the ultrasound tech was about to remove the monitor straps and do her exam, the nurse on the phone looked up at all the other nurses and made a throat-slashing gesture with her hand and shook her head, "No." Even I understood what that meant. The doctor had made the call; our babies were going to be born ASAP.

I texted David to please hurry and come. He had to wake up Lucy and tell her. He called my mom and woke her up. She said she'd be over, but she lives about 40 minutes away. While he was doing those things, more nurses came in (where do they keep all these nurses?). One pulled my pants and underwear off. Another took my wedding ring off. Another started shaving me and then swabbing ice cold iodine all over my abdomen and thighs. The anesthesiologist came in and said he was going to try and give me a spinal - but he only had time to try it once, so if it didn't work, I'd have to be put under. I was relieved that a spinal was even an option, because I'd heard that in emergency c-sections they always put you under. I had to get an IV started. There were things happening to me and around me and I just wanted my husband there! Finally he came in about thirty seconds before they started wheeling me out to the OR.

The operating room was ice cold and bright. It was smaller than I'd imagined and there weren't as many people as I had thought there would be. Dr. Leinenbach was there and her partner Dr. Wilking was assisting. A couple more nurses and the anesthesiologist. I guess the neonatal team was in a room waiting. I didn't actually see them.

I got switched to the operating table and then sat up to get the spinal. It hurt considerably going in, but finally was in place in about 3 minutes and I laid back. My friend Hillary had told me to ask about a clear drape, and I am glad I did. It helped me not feel so claustrophobic!

I was worried they were going to start without David there! Everything was happening so fast. It had only been about ten minutes since we'd left my antepartum room and they were ready to start. But then finally he came in, dressed in his white jumpsuit and hat. I felt so much calmer when he was there.

The doctors got right to work. And then suddenly, baby A was out - they held her up for a moment, she was wiggly and pinkish purple and tiny - then she was whisked away. A few seconds later, same thing, repeated! Both babies were delivered so fast it was 6:13a.m. both times. Dave went with them for awhile to watch them get stabilized before they moved to NICU. The rest of the surgery took almost 45 minutes. Dr. Leinenbach got some pictures of our babies' umbilical cords. There was one solid, true knot near the top, then the rest of it was all twisted and braided. The most likely cause of their distress earlier was that one or both were having compressed cords. Since they shared a circulatory system through the one placenta, stress on one would have stressed them both. They needed to get out into safety.

What a tangled web we weave... when we share one placenta and one amniotic sac!

They were taken away so fast, these are the only pictures Dave got of the girls at first.

My view of Dr. Leinenbach, from David's view of me.

Dave came back and stayed with me until the operation was finished. I had a few episodes of severe anxiety but kept it from becoming a full panic attack. The anesthesiologist kept offering me "beer" in my IV, but I declined because I did not want anything that would interfere with my memories later on. I was wheeled to a recovery room for an hour, where a nurse stayed with us and gave me morphine and demerol as the spinal began wearing off a little. I got to eat a few ice chips too. At 8:00, we were allowed to go to NICU to see the babies for the first time.

They were doing well, stable and getting settled. I was taken to my room, in a different part of the hospital. It was very small, very dark, and very noisy. It made me miss antepartum! 

I ended up only staying about 48 hours after their delivery. I was so incredibly sore, but unable to sleep well in the hospital. I tried pumping but only got .2ml  at a time. The girls can't eat yet anyway, but the NICU staff said they use the colostrum when they wipe the babies' mouths out each day. I was just ready to be back at home. We live five minutes from the hospital, and really a 5 minute drive feels as far away as it did being two hallways away but having to get someone to drive me in a wheelchair down to see them.

We are trying to settle into a routine at home. We have been going to see the babies twice a day. They are too small and fragile to hold, or for us to help with their feeds or diaper changes. Hopefully soon we will be able to do those things and then we'd like to be there more. Right now the babies are just trying to get and stay stable. They are doing well considering they were three months early. The neonatologist told us to expect about a 9-week stay, which would put them home in early October. It's hard to see them with all the wires and tubes and alarms attached, but we know they are being watched over 24 hours a day by highly skilled nurses and doctors. (Someone said, "Try to rest at home, your babies are with the best, most expensive babysitters you will ever have!")

We can't believe how fortunate we are that we were able to have not one rainbow baby but TWO, and that our mono-mono twins were some who survived. So many do not. We look forward to having all our family home together soon. 


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