Mom to Lola
April 26, 2014 – April 29, 2014
Santa Cruz, California
“There’s two in there!”
The midwife’s words, spoken at my first trimester ultrasound in October 2013, came as a delightful surprise. Never in the world did I imagine I would give birth to twins! My husband Kenny and I were very excited. We had suffered a miscarriage just a few months earlier, so we took this news as a happy, karmic reward. Twins don’t run in either of our families, but as I soon found out, identical twins (which is what we were having), aren’t tied to genetics at all. They happen randomly–when the egg splits in two after being fertilized–and occur in about 1 in 300 to 400 pregnancies.
Twin pregnancies, and especially identical twin pregnancies in which just one placenta nourishes both babies, are considered high-risk. While I was fearful about having this label attached to me, I felt more at ease as my pregnancy progressed. Everything seemed to be going okay. I was being seen approximately every two weeks, by either my delivering OB, or by the consulting specialists affiliated with Lucille Packard Children’s Hospital—one of the best hospitals in the nation. (Although Lucile Packard is located in Palo Alto, an hour’s drive away from my home in Santa Cruz, they fortunately have a satellite office/diagnostic center here in Santa Cruz, so I didn’t have to drive too far for my appointments.) And, starting at about 30 weeks, I had twice-weekly non-stress tests at the hospital in town where I would be delivering (Dominican Hospital). I was scheduled to be induced at 37 weeks gestation–on May 1st, 2014. I wanted to at least try for a natural birth, even though I knew that many sets of twins are delivered via C-section.
I didn’t have any real issues until about the last 5 or 6 weeks of my pregnancy. I was definitely uncomfortable as my belly grew exceedingly large, but I felt blessed to be getting “two for one.” Around Week 32 my blood pressure started to creep upwards….it wasn’t super high, but my systolic reached 138 or 140, which was slightly concerning since my base line was around 100. I also started to have some protein in my urine. But I guess my clinical signs weren’t significant enough to be labeled full-on preeclampsia. Instead, it was considered borderline preeclampsia. I went in for my non-stress test on Friday April 25, and after speaking on the phone with the nurse attending to me, my doctor decided to keep me in the hospital overnight to complete a 24 hour urine collection, so that a clearer clinical picture of my urine protein level could be obtained. She needed to ascertain how serious my (borderline) preeclampsia was becoming. Kenny brought some of my belongings to the hospital and stayed with me overnight.
The next morning (Saturday), perhaps around 9 am, my doctor came to see me at the hospital and I told her I felt uncomfortable and wanted to go home so that I could relax and take a bath. She checked my cervix and as it turned out, I was 3 cm dilated. I was in labor and hadn’t realized it. I spent the next hour or so in the bathtub on the labor and delivery unit, relaxing, with Kenny by my side. Then my doctor wanted me out of the tub so I could wear fetal monitors. The next several hours (indeed, the next few days), were something of a blur. I labored for a few hours, and my doctor closely watched the fetal heart tracings. At some point in the afternoon Baby B’s (Lola’s) heart rate seemed to be harder to monitor/detect. There was a strange energy in my hospital room. I remember my nurse seemed nervous as I sat on the birthing ball with Kenny sitting in front of me, helping me labor. The contractions and pain became extremely powerful, and Lola’s heart rate was not within normal range. My doctor was seeing decelerations. It seemed like Lola wasn’t tolerating labor. My contractions were coming one on top of the other, with no space to recover. They broke my bag of water (Nadia’s bag; they couldn’t reach Lola’s). They applied a monitoring electrode to Nadia’s scalp. More and more people entered my room. There was talk of doing a C-section. The anesthesiologist came to speak with me–while I was writhing in pain–and I signed necessary consent for anesthesia. When my doctor finally made the call to do surgery, I think it was perhaps shortly before 4 pm. I was wheeled into the operating room on the L&D unit, surrounded by a bunch of people. In a final effort to see if we could detect Baby B’s heart rate, my doctor had me turn on my side on the operating table. I remember feeling very nauseous. I told Kenny I thought I might throw up. Clearly Lola was in major distress now–as indicated by the problems with her heart rate–so I was rapidly prepped for surgery (in my doctor’s words, she “threw some betadine on me”) and I was put under general anesthesia (intubated). Kenny was asked to leave the operating room. Once I was cut open, Nadia was pulled out first, followed by Lola. The procedure was done so rapidly that both babies’ time of birth was the exact same minute (4:12 pm). Nadia was very red when she was born, and Lola was white as a ghost. She was life-threateningly anemic. Somehow she had been losing blood, massive amounts of it. How could her heart beat have seemed okay for so long? She had to be resuscitated and needed a large blood transfusion. Her Apgar scores were “0.” As we later found out, her hemoglobin level was not compatible with life. The medical team–pediatrician, nurses, and neonatologist–worked hard to stabilize Lola. Kenny watched the resuscitation while I was being worked on in the operating room.
During the surgery, I lost a larger than normal quantity of blood–about 1.5 liters. I have never been so tired in my life as in the days following the C-section. Because it was an emergency C-section, there had been no time to pre-count the surgical sponges. There was no way to reconcile the beginning number of sponges with the ending number. Therefore, in order to rule out the possibility that a surgical implement had been left inside my body during the surgery, I needed to be x-rayed before being brought out of anesthesia. They had trouble obtaining an x-ray; the first machine they brought in apparently wasn’t working, so they had to use a different machine. All of this took time. Finally, after determining that there were no sponges or tools inside my body, I was sutured up. I remember emerging from the fog of unconsciousness and asking the nurse who appeared in front of me, “How are the babies?” She answered, “One of them is fine, the other has twin-to-twin transfusion syndrome.” I didn’t understand. How could one of my twins have TTTS?; wasn’t that a condition that involved both babies? I thought I had managed to get through this pregnancy without developing that risky condition. Did she mean that one baby was the “unlucky” TTTS twin? (TTTS is a problem with circulation in the shared placenta that results in one baby getting more blood and nutrients than the other.) I don’t remember what happened next. I think I was taken back to my hospital room, and at some point one of the nurses brought a swaddled Nadia to me. I felt very numb. I was experiencing the protective cocoon of emotional shock, not able to comprehend that one of my twins had severe, irreversible, and fatal complications. I do remember that I was able to nurse Nadia. I am grateful she didn’t have any problems latching on to my breast. A little while later Lola was wheeled in to my hospital room surrounded by a team of paramedics who were going to transport her up to Lucile Packard Children’s Hospital (LPCH). She was inside of what seemed like a little plastic house. I couldn’t even see her. I just waved to her, feeling very detached. Lola was headed up to the NICU of LPCH to undergo therapeutic hypothermia, which involved lowering her core body temperature in an effort to preserve existing brain function, and halt the cascade of negative consequences resulting from hypoxemia (lack of oxygen). Basically, since Lola had very little blood in her body, she had very little oxygen circulating up to her brain (blood carries oxygen through the body). She had suffered severe brain damage during labor, and possibly in the hours leading up to labor.
Kenny went up to LPCH on Sunday, the day after the twins’ delivery, and I was alone. My parents were to arrive from the East Coast the following day (Monday). Kenny spent the whole day with Lola. Before he left my side, I recorded myself reciting “Green Eggs and Ham” with his phone. He was going to play the recording for Lola, so she would hear the sound of my voice. The neonatologist who had worked to stabilize Lola right after she was born came in to speak with me. I felt numb listening to him talk about what happened. I just remember that he had a French accent and he used the word “catastrophic.” My brain wasn’t comprehending anything. Meanwhile, Kenny had conversations with the medical staff up at Lucile Packard, and it became clear that Lola’s brain function was deteriorating. He asked the maternal-fetal medicine Fellow to call me with an update about Lola’s condition; she told me they were very concerned about Lola’s lack of brain activity. The attending pediatrician who had worked on resuscitating Lola came in my room to talk with me at some point, too. She was oddly unemotional, almost cheerful. She said she has seen them do amazing things with cooling therapy at LPCH. She hoped that it would help Lola. Even at this point, it hadn’t occurred to me that Lola might die. I thought that Lola would survive in a permanently brain-damaged/disabled state. I pictured myself caring for her at home, caring for a special-needs child. It was the social worker who told me Lola might not make it. I hadn’t even considered that possibility. I couldn’t wrap my brain around it. When Kenny returned from LPCH in the late afternoon/evening, we cried and embraced. The chaplain came and spoke with us. Even though I do not subscribe to any particular religion, I remember requesting that he visit us. Or perhaps the referral was made by one of the nurses; I can’t recall exactly. In any case, I was grateful for his presence.
The following day (Monday) my parents arrived sometime in the early afternoon. My mom was pretty sure everything would be okay with Lola. She didn’t seem to understand the situation. We all talked about how to proceed–when would I leave the hospital? When would I go up to LPCH to see Lola? I had been thinking I would leave on Tuesday–the next day. Kenny and my dad went up to LPCH for a couple of hours on Monday and my mom stayed with me. When they were up spending time with Lola, the maternal-fetal medicine Fellow told them that I needed to get discharged from the hospital in Santa Cruz and come up ASAP. Lola would leave us soon; there wasn’t much time. Kenny told me later that he and my dad literally burst into tears when the doctor told them this news. He and my dad left LPCH and came back down to Santa Cruz and we all packed up my things, getting ready for discharge. The NICU nurses gave me some “banked” breast milk with which to feed Nadia. My milk had not come in yet; I had only tiny drops of colostrum. There was a woman who came in with paperwork regarding the twins’ birth certificates. I had to fill in information on some forms. I was in tears, sobbing. She had no idea what was going on. The five of us—my mom, dad, Kenny, me, and Nadia–left the hospital and drove home. We had an early dinner and then got back in the car to drive up to Lucile Packard. Nadia looked so small and vulnerable in her car seat. She had weighed in at about 6 lbs at birth (Lola was 5.5 lbs).
At the LPCH NICU, I held and caressed Lola. We spent time taking photos with Nadia and Lola together. Lola never opened her eyes. She was alive, but there was not much brain activity. Kenny told me that when he had been up there the day before, Lola had wrapped her tiny hand around his finger.
All of Lola’s organs were failing. Still, though, her beautiful soul reached out to me and touched me in the most profound way. I cried the whole time we were with her, and for days, weeks, months afterwards. We took her off the tubes and monitors so we could all gather in a separate room, away from the cramped spaces of the NICU. There, we got to really properly cuddle her. The experience of meeting and holding one of my babies for the first time, while simultaneously saying goodbye to her, was devastating beyond words.
I don’t remember what time it was, but at some point that evening Kenny looked at me and voiced concern about how swollen my face, ankles, and calves had become. I had been put on blood pressure medication at some point over the past couple of days (I can’t recall exactly when that happened), and I had not taken my p.m. dose yet. When he noticed how swollen I had become, I quickly remembered to take the medication. However, we needed to know what my blood pressure was, and I had forgotten to bring my BP cuff. One of the nurses advised me to go to the Emergency Room (downstairs, at Stanford Hospital). Kenny took me down to the ER in a wheelchair, while my mom and dad stayed with Lola and Nadia. I can’t remember what my BP was in the ER, but the ER doctor was concerned. The ER doc also noticed I was experiencing extreme anxiety. She called in an OB consult, and the OB resident wanted to admit me to the OB unit and give me IV magnesium sulfate (given preventatively to stave off seizure, which occurs when preeclampsia progresses to eclampsia). At this point it was perhaps 1 o’clock in the morning. I was so incredibly torn, and confused. I wanted to disappear; I wanted to not be living this reality. I called my dad (who is a retired pediatrician), and he came down to the ER to talk to the doctors. I told all of them I needed/wanted to go home. I couldn’t see how being admitted to the hospital would work: Would Nadia stay with me in my hospital room? She had been in the NICU at Dominican Hospital; would she be admitted to the NICU here? What about my parents and Kenny? Where would they stay? I hadn’t come prepared to be admitted to Stanford Hospital as a patient; I had come to meet and say goodbye to my precious daughter Lola. When my BP was taken again, it had come down from the previous reading. The doctors were still concerned that I could start seizing on my way home from the hospital. I honestly didn’t care. My dad told the docs we were going to leave, and they were angry. They asked for my primary OB’s name (in Santa Cruz) so they could follow up with her and explain their concerns. I signed out of the ER against medical advice (“AMA”). We went back up to the room where my mom, Nadia, Lola, and one of the nurses were. I had had significant anxiety about being away from Nadia and Lola, even for a couple of hours! Since it was about 3:00 or 3:30 am, we decided we needed to drive home. We were all sleep-deprived and completely beside ourselves. Nadia needed to sleep at home in her bassinet. I didn’t know what would happen with Lola. I couldn’t bear the thought of being separated from her, and not being able to hold her, yet I was going to drive home without her. We got home around 4:30 or 5:00 am, and I slept fitfully. The next morning, just a few hours later, my mom, dad, and I took Nadia to her pediatrician appointment. I remember speaking on the phone to my cousin-in-law (who is a midwife on the East Coast) in the car on the way there. I was sobbing, but somehow managed to say “I’ll be alright….” She responded, “Of course you’ll be alright.” I wanted to scream. NO! OF COURSE I’M NOT ALRIGHT! HOW THE —- COULD I BE ALRIGHT?
When we got home from the appointment, Kenny told us he had received a call from Lucile Packard. Lola had passed away that morning. Part of me wanted to die. We all started sobbing in the kitchen, my mom, dad, Kenny and me. Lola had been in the arms of a baby cuddler when she passed.
We decided to have her body cremated. We still have her ashes in the tiny box from the crematorium in our bedroom.
I am forever grateful for all the support we received after the horrible loss we suffered. We had a memorial service for Lola in early June (about 6 weeks later), which took place in our backyard. My sister was here for that event, although my parents had left by then (they flew back east at the end of May 2014). Many people attended the service, including most of the people who were at our baby shower just a few months prior. I wouldn’t have been able to cope without the support of our community of friends in Santa Cruz. There are no words to describe the depths of sorrow I have found myself swimming in since Lola’s passing.
We will never know exactly what happened to Lola. We just know that there was a problem with the placenta on Lola’s side. It seems that a perfect storm occurred: late- and rapidly-developing TTTS, possible placental abruption related to preeclampsia, and possible fetal-maternal hemorrhage. Perhaps a C-section performed earlier would have saved her, but we’ll never know for sure. All Kenny and I know is that our love for Lola is just as present and palpable as our love for her twin sister, Nadia.
You can email Liz at email@example.com