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Chapter 5

What Do We Do Now?

I slowly emerged from an anesthesia-induced slumber to the incessant beeping of the heart and oxygen monitors. There was a dull pressure from the IV in my arm. The elastic, adhesive tape had been wrapped around tight and was digging into my skin. And of course, there was the nausea that never seemed to fully dissipate. Ed was at my bedside, holding my hand. He asked me how I was doing.

“To be honest, I feel much less like a blowfish,” I croaked, my throat a bit raw from the anesthesia.

Ed laughed. “You look less like one.”

I would’ve slapped him if I didn’t have an IV stuck in my arm.

He told me that the surgery had gone really well. Dr. Miller said both girls looked okay; he had been able to get a good separation of the placenta, meaning that the fluid imbalance and the blood flow problems should improve. After the laser ablation was done and the blood vessels had been blocked, which apparently only took fifteen minutes, Dr. Miller drained the excess fluid from the recipient‘s side of the sac. This apparently relieved a lot of the pressure that I had been feeling—the reason I knew something was wrong in the first place.

“But, Houston, we do have another problem,” Ed said.

“Are you serious? What now?”

“So, the doc nicked a hole inside ya.”

He‘s joking, right? Not cool, I’m still all drugged up.

“Ed,” I said as I rolled my eyes, “what the heck are you talking about?”

“When Dr. Miller inserted the needle into the umbilical sac, it caused a small hole in the inter-twin membrane.”

“Oh, crap!” I said. “Is that something they can patch up?” I asked.

“No, and it‘s actually not as bad as it sounds, but it is something they’ll need to monitor,” he said, reassuring me.

“Katie and Lauren are safe—and so are you.” He reached for my non-IV hand and gently kissed the top. “And that‘s all that matters.”

For the first time since I had learned of the diagnosis, I let thoughts about the long path ahead sink in. The ablation surgery had just been one step along the journey, the most daunting step, perhaps, but still the first of many. We had weeks to go before the babies had even a remote chance of survival in the outside world. Twenty-three weeks. Even if they were born then, there was still just a slim chance that they’d survive and they’d almost certainly suffer from cerebral palsy or some other condition. Every week was critical. Every day was critical.

I stayed in the hospital overnight even though I was ready to go home. Everything was fine with me, but the doctors wanted to do another series of scans in the morning to check on the girls. Dr. Miller was performing another laser ablation surgery, his second of the week. Dr. Cooper came to the hospital to check on me and conduct the primary examination. I hoped, since he had delivered good news to us, before that he would be delivering good news to us again today. I waited nervously as he turned on the sonogram. He gently placed the probe on top of me and began to move it along the surface of my belly, obtaining various views. He stared at the two little images on the screen.

After a few moments, he said, “The good news, kiddo, is that both babies look like they’re doing well, and Dr. Miller got a good separation of the placenta.” He paused.

Oh gosh. Here comes the bad news. I braced myself.

“The bad news is, that during the procedure, a hole was created in the inter-twin membrane that separates the babies. See, sometimes Dr. Miller and his team do this deliberately as part of the treatment plan for TTTS. A septostomy, which is the term we use, is the intentional rupture of the septum that aims at balancing the amniotic fluid pressure in the two sacs leading to a correction of the placental circulation. In your case, I don’t think it was their intention, but it‘s a small hole, and we had all hoped that the membrane would stay intact. But, it looks like one of the babies poked through this hole and started making the hole bigger. We all knew this was an issue yesterday but hoped that they would just leave it alone.”

Well, nice going, girls. Of course, our girls couldn’t let things be, they had to go fiddling with this inter-twin membrane thing. They were going to be mischievous meddlers those two.

“Katie and Lauren probably got into a cat fight—their first of many as sisters, I’m sure—and tore the membrane,” Ed joked.

“Ed, really?” I turned and glared at him.

“So, what problems could this cause?” I said turning back to Dr. Cooper.

“Crystal, do you remember when you came here for an ultrasound a few months ago? We checked to see whether there was an inter-twin membrane? We confirmed that there was indeed a membrane and determined that you had mono-di twins—same placenta, different sac. Remember how it took us a while to see the membrane that separated the two amniotic sacs? Monochorionic-Monoamniotic twins don’t have that membrane. So it‘s like they’re sleeping together in one sleeping bag. There‘s no barrier that separates their umbilical cords. In addition to TTTS, the big risk is that their umbilical cords can become entangled or compressed, which can cause one or both of them to die.”

More talk of dying.

“So, if the cords get tangled, there‘s a chance they’ll die?” I asked.

Given the girls had already shown a desire to tear apart the membrane that separated them, I didn’t think they could make it another ten weeks without doing something else risky in their now-shared umbilical sac.

“No, the cords will always get tangled to some degree. It‘s only if the cords get tangled in a certain way, or are pushed up against something, that there‘s a serious problem. We’ll definitely need to deliver them early, as the risks of problems increase significantly after the thirty-second or thirty-fourth week of pregnancy because of their growing size.” And then he let his other shoe fall.

“Kiddo, I want to have you admitted to the hospital sometime in the next week or so for monitoring.”

“What? The hospital? For how long?”

“As long as we can keep the babies in—the longer the better.”

“Are you kidding me? I’m only twenty-three weeks pregnant. It could be months before they are born.”

“How soon can she be admitted?” Ed asked.

I shot him a dirty look.

“I’m thinking about the babies, Crys. I think we should do everything possible to ensure Katie and Lauren‘s safety.”

“I know, Ed, obviously the girls’ safety is our first priority,” I glared at him.

This was unbelievable. We were falling further and further down the rabbit hole with these bizarre high-risk occurrences.

“Stay in the hospital the whole time? No breaks? For the remainder of my pregnancy, is that what you are saying, Dr. Cooper?” My voice cracked.

“Yeah, kiddo. I want to play it safe.”

I didn’t need clarification, but I asked anyway. I knew exactly what this meant. It still came as a shock. A long-term hospital stay would be excruciating on me and Abby, Ed—our whole family.

“So when are you thinking Crystal should go?” Ed asked.

“That depends on the insurance carrier‘s policies,” Dr. Cooper explained. “Typically, they won’t admit patients for in-hospital stays until twenty-five weeks.”

“What? Why is that?” Ed asked.

“Just because there isn’t a whole lot they can do until twenty-five weeks. We’re monitoring to ensure everything is fine, but, if it‘s not fine, our only option is to deliver. Until the twins are at twenty-five weeks, there just isn’t much chance of them making it if we have to go that route. You’ll just need to take it easy and hope for the best.”

Hope for the best? Are you serious? That wasn’t exactly what I wanted to hear. I wanted a treatment that was more proactive than sitting around for a couple of weeks hoping nothing bad happened. And, the fact that some analyst had looked at the cost paid out to the hospital for a week of inpatient care and decided that any benefit conferred wasn’t worth the cost was beyond frustrating.

Dr. Cooper signed my discharge paperwork, and Ed and I left the hospital. There was a week of waiting at home before I would go inpatient. The only thing I could do was stick to the regimen of bedrest as best I could even though Abby would want to play with me and jump all over the bed. Dr. Cooper‘s version of bedrest meant me literally staying in bed most of the day with allotted trips to the bathroom and to shower once a day. I even had to be in bed as I blow dried my hair and applied make-up. To kick start my bedrest party, Dr. Cooper sent me home with a care package containing all kinds of goodies—leg compression socks, a device to help with blood circulation, a stack of preemie magazines and a few hospital parking passes. Ed was going to need those. The only things missing were a bottle of bubbly and some chocolate covered almonds.

The news about our twins being Monochorionic-Monoamniotic—or MoMos, as they are also called—was disconcerting. I tried not to think about the whole umbilical cord entanglement. I tried to stay positive. We had survived the laser ablation surgery. Our little recipient, Katie‘s, heart condition had improved dramatically in just a couple of days. They’d still monitor her heart throughout the pregnancy, but both Dr. Cooper and Dr. Miller seemed legitimately impressed with her progress. We had beat one challenge—TTTS—and were now just dealing with the collateral damage that the laser ablation had inflicted. One big battle down, but another one—a long, drawn-out one—was just beginning.

Okay, I told my unborn daughters. I know that this hole y’all ripped in the membrane has put us at the highest risk possible for something to go wrong. But I have to admit, that if y’all made the hole so you could stay together in there—that is pretty darn cute. No, actually, that‘s the sweetest act of sisterly love I’ve ever heard. Now let‘s just pray nothing goes wrong.