CAOS

As an almost-finalist in the 1990 Coconino County Spelling Bee (until things went awry-ask my mom), let me assure you that there is no misspelling in the blog title. CAOS is the acronym for my eventual diagnosis during my pregnancy with Weston: chronic abruption with oligohydramniosis. This blog post will be really full of personal pregnancy symptoms.

During the first half of my hospital stay, it was just a wait-and-see game. Lie in bed, bleed, stop bleeding, get an ultrasound, lie in bed some more. But, as I approached 22 weeks, things started to get very serious and very scary.

A bleeding pattern emerged over time and eventually settled into a heavier bleed every 3-4 days of about half a day's duration interspersed by periods of lighter bleeding. However, as time went on, the heavier bleeds got heavier and lasted longer, and the "in-between" bleeding got heavier as well. I had to undergo two very uncomfortable and scary vaginal exams.

I had ultrasounds once or twice a week to check on the baby. At one ultrasound (I don't remember when), it was pointed out that my amniotic fluid was low. During pregnancy, the baby is encased in a sac full of amniotic fluid, which provides nourishment and protection from infection for the baby. When your water breaks at the end of your pregnancy, it is actually your amniotic sac breaking. What I didn't know was that amniotic fluid is also crucial for lung and other organ development during pregnancy.

Typically, there should be 12 to 15 centimeters of fluid surrounding the baby. When I first learned about the low fluid, I had slightly less than 6 centimeters. This sounded very low, but I was told that it was not low enough to actually warrant the low fluid diagnosis of oligohydramniosis. That came later. There can be several reasons for low fluid, including leakage, a bad placenta, or kidney problems with the baby. It is very difficult to detect leakage, especially if the mother is bleeding continually, as I was.

I will never forget 21 weeks 6 days and 22 weeks of my pregnancy. At 21 weeks 6 days, I had an ultrasound, but Dr. G insisted on being the one to tell me the results. I knew that was a bad sign immediately. Also, I think I'd had a particularly bad bleeding episode a day or two before that ultrasound. I did know that my fluid was still low, but I didn't know any other specifics. After the ultrasound, my grandparents, mom, and Caroline came to visit. Right as everyone was getting there, my phone rang.

It was my midwife. Against my better judgment, I told her what was going on without asking my family for some privacy. She said that, although this was out of her practice area, she would not be against an amniocentesis if recommended by Dr. G. An amniocentesis is a relatively invasive test that can diagnose many conditions in utero. It is usually recommended to pregnant women over 35, and it carries a small risk of miscarriage. When my midwife brought this up, I immediately thought to myself, "Why would I increase the risk of miscarriage, ever so slight, with such a precarious pregnancy?"

She continued, "Maybe the low fluid signifies some condition that makes your baby incompatible with life. And, you know, you have another child to think about." Oh, so she was suggesting I terminate the pregnancy! And choose one child over the other. Because every woman considering terminating a pregnancy would FIRST put herself through three months of bed rest and then check into the hospital for an undetermined amount of time! This signified to me that everyone was losing hope for my baby's survival. Was I completely crazy for thinking he was fine?

I have no idea how I got through the next few minutes on the phone. I did have my wits about me enough to ask my grandparents to take Caroline in the hall so she wouldn't have to witness her mother having a complete breakdown. And, of course, even though the full anatomy check turned out perfectly, now the thought had been put into my head that my baby had a condition making him incompatible with life. Because an abrupted placenta and low fluid was not enough! Words cannot adequately describe the horror of that night, and I barely slept.

The next morning was even worse. Dr. G broke the news of the ultrasound result: it showed that my fluid levels were continuing to drop, warranting the CAOS diagnosis. The baby's kidneys were fine, and there was no sign that I was leaking fluid, so the culprit was my bad placenta (which was still partially detached, or abrupted). In a nutshell, the placenta was not delivering sufficient nutrients to my baby. There were two possible outcomes: the placenta was going to stop functioning, causing the death of my baby, or my bleeding was going to get so bad that it was going to cause me to go into labor. Although there are drugs that can be administered to stop labor, I was not a candidate for those drugs, because, in Dr. G's words, my uterus would have to be "emptied out" if bleeding caused labor to start. Otherwise, I could die.

This conversation was completed with Dr. G offering a prescription for a sedative "to wait out this very uncomfortable situation" and/or a sleeping pill.

Without a doubt, those were the two darkest days of my pregnancy. In fact, they rank up there with a couple of the darkest days of my life, although Weston's death has been far, far worse. I do not like pills at all, but I did opt for the sedative that day. I desperately needed sleep, and I couldn't have Caroline see me in such a distraught state.

One of my favorite nurses, E, came in later that morning. I could not control my emotions and told her, through many tears, what had happened. Despite everything I had heard, I had a feeling that my baby was ok, and I relayed these feelings to E. His heartbeat was always strong. My belly was getting bigger. Although I couldn't feel him move much (it was still early in the pregnancy, and I had an anterior placenta, which meant that it was on the front of the uterus and buffering any movement from Weston), the nurses could tell he was moving around a lot when they used the Doppler to check his heart beat. I told that to E, and she said, "You need to hang onto that. You can't give up hope; it's the best thing you can give your baby." I tell you, I did hang onto her words over and over. To a large degree, I credit her with preserving my sanity those last couple of weeks.

CAOS is an exceedingly rare condition, so rare that one of my nurses had to Google it. One of the resident physicians told me they only see CAOS once or twice a year, one of the other perinatologists told me that I had the strangest-looking placenta she had ever seen, and Dr. G told me at my post-c-section checkup that CAOS happens in 1 of 2,000-3,000 pregnancies. Lucky me. I refused to do any Internet research on CAOS until after Weston was born. I learned that no one knows what causes it, but that is occurs at a slightly higher rate in lower socioeconomic demographics (probably from poor nutrition and lack of prenatal care) and cocaine users. A lot of good that clean living did me...

I have mentioned previously that I had a natural birth with Caroline. But I knew that Weston's birth would be fraught with fear: a far cry from the joyful occasion of bringing Caroline into the world full-term and after weeks of preparation in my Bradley class. I had prepared and prepared for dealing with the pain of labor in a natural way with Caroline, but I had not had time to do that this time around. However, I knew that my mind and my heart would not be prepared to deal with the physical pain of natural childbirth with the inevitable premature birth of Weston, so I decided, after much internal conflict, that I wanted an epidural. I had always been scared to death of a c-section, so it was out of the question in my mind.

The days ticked by, and Weston and I were hanging on. We made it to 23 weeks, and people became a little more optimistic. I had a pretty bad bleeding episode right at 23 weeks. It scared me, because it lasted almost all weekend. Even after bleeds let up, I would just be waiting for the next one, always wondering if it was going to be the one that started labor.

But Dr. G began talking about delivery. My internal conflict over the epidural went away when he said I would have to have a c-section. A baby as small as Weston and with virtually no amniotic fluid (we were down to 1.5 centimeters) would never survive a vaginal birth. I was actually relieved, because I was so afraid of the birth process with such a small baby. A neonatologist visited me to tell me what to expect with a 24-weeker. The bleeding let up enough that Dr. G even told me I could go home for a few days, but I would need to check back in when I hit 24 weeks. Ultimately, I decided to stay, because I would only have been able to go home for about two days.

I had lost enough blood from the bleeding episodes that I needed an IV infusion of iron. I also had to start wearing compression socks that were hooked up to my bed to prevent blood clots. They didn't hurt but were very annoying, especially when I was trying to sleep. Worst of all, the constant lying in bed produced horrible leg pain. It was worst in the early morning hours after several hours in the same position, and I usually woke up around 4:00 or 5:00 am in excruciating pain. I had a couple of sessions with a physical therapist, which helped. Even though my belly was growing, I was losing weight, and I could actually see the atrophy in my muscles. The bed rest was starting to really affect my body, but I was so relieved that these symptoms were not affecting Weston. I would have put up with all of these inconveniences for as long as necessary.

After the bleeding episode at 23 weeks, the bleeding really tapered off. And we got some great news from the ultrasounds: first, Weston was growing normally. In fact, he measured at the 79th percentile. The next ultrasound, which made Dr. G very happy, showed completely normal blood flow from the placenta to the baby. This ultrasound was done around 23.5 weeks. Dr. G said that, if things continued to go well, he would expect my placenta to finally crap out (my words, not his) around 30-31 weeks. While 30 weeks is still quite early, I was obviously ecstatic to hear that we could make it that far!

With my placenta being so ratty (again, my words), normal growth and normal blood flow was nothing short of miraculous. I attributed it to the fervent prayers of so many people, and I knew God was watching over my baby. I had so much hope and optimism that last week, and we set a new goal of 28 weeks. Weston was born just on the cusp of viability at 24 weeks 1 day (more on that later). The timing of his birth represented hopes dashed and hopes fulfilled...the CAOS was over, but the chaos continued.