(Not Entirely) Wordless Wednesday 2.5.14

When she was born, I didn't know if I were going to live to take care of her, having been diagnosed with peripartum cardiomyopathy shortly after her birth.

As a newborn, I kept her bassinet pulled up next to my side of the bed, sleeping with one hand inside, because, although it was entirely unfounded, I had a fear that something would happen to her while she slept.

And this week, she turned 15.

Happy birthday, beautiful girl. 

To Make A Long Story Short - Nah, It's Just Plain Long

My daughter is always trying to get me to write a blog post about her. Every time she brings it up, I never fail to mention that my blog is actually about ME, and if she wants a blog post about herself, she can start her own blog. But today, her 14th birthday, I will write about her birth.

We had recently moved to Joplin from Los Angeles. I was 38 and pregnant. My medical file had   "A.M.A." written on it in big, red letters (that would be Advanced Maternal Age - isn't that sweet?). I had a three year old, was busy moving into a new house ("Can you lift your end of the couch a little higher?" This said by my husband. To me. Honeymoon phase obviously over.) and  I was TIRED. In spite of my A.M.A., I passed prenatal tests with flying colors until the Alpha-Fetoprotein Screening, a test which assesses the probability of genetic disorders, which came back indicating there was a chance my baby had Down's Syndrome.

I chose to have an amniocentesis (a test done by inserting a needle into the amniotic sac and extracting amniotic fluid, which is then tested for genetic abnormalities), because I wanted to become as prepared as possible if the baby did, indeed, have Down's Syndrome. The test is done at around 20 weeks, which means halfway through the pregnancy, and carries a risk of miscarriage.

My doctor was explaining this to me shortly before the procedure, telling me one in 400 amnios resulted in miscarriage.

"But I've never had a patient have a miscarriage after performing an amnio," said my OB.

"How many have you done?" I asked.

"Around 300," he replied.

"Then we're far enough from 400 that it should be good."

I mean, seriously, if he were on 370, 380, I would have figured his streak was close to being over. 

The amnio was performed without incident (although the ultrasound that is performed simultaneously to allow the doctor to properly insert the needle showed my baby's tiny little fist reaching for that needle. I kept telling him, "Don't poke my kid!"), and the waiting game began.

Apparently, I wasn't a very happy person to be around those two weeks I spent waiting for the results. But the doctor's office finally, FINALLY, called with the good news that everything was fine. No Down's Syndrome. Then I was asked, "Do you want to know the sex of the baby?" 

Hmmm. We DIDN'T want to know with our first child (and it's a good thing we were pretty stupid about ultrasounds, because it was apparently pretty obvious it was a boy). But after the stress of the past few weeks, I decided I didn't want any more surprises (famous last words) and said yes. And at that point, that bulge in my belly became "Emma."

My biscuit oven must be a comfy, cozy place, because neither of my babies were in any hurry to leave it. My son was taken out through a trap door, and for those of you who have actually done it the way you're supposed to, his head was still freely floating. Had not dropped a smidge. My daughter had the same plan to set up housekeeping in my uterus and also was scheduled to leave via the trap door (the SAME trap door, in case you're curious).

I was given a spinal anesthesia for this delivery. All was fine, until a few minutes after my OB started the procedure, and I began to notice a roaring in my ears. I didn't say anything at first, but as it got louder and louder, I thought I had better speak up. I did so by saying, "Is anyone concerned that I have roaring in my ears?" 

I don't remember much after that, although I certainly got the hint that yes, indeedy, the nurse-anesthetist was VERY concerned and summoned the  anesthesiologist. I remember my hands, which were strapped down out to my sides (the same Jesus-on-the-cross position I was later in for my bilateral mastectomy), getting numb, and they put some kind of mask over my face. I remember trying to wiggle my fingers, so I could signal to my husband that I was okay. I remember hearing the words "too high" spoken with reference to my spinal.

At some point, a nurse showed me my baby girl, wrapped up in a blanket, then they whisked her away to the nursery, taking my husband along with her. 

The roaring went away and at some point, the mask was removed. I remember telling my OB I could FEEL him putting me back together, but he swore that he was nowhere near the area in which I felt pain.

Finally, I was in the recovery room, being tended to by a lovely nurse named Michelle (you can read about her here and here), who told me I was having premature ventricular contractions, meaning too-early heartbeats that originate in the ventricles and disrupt the heart's normal rhythm (thank you, clevelandclinic.org). An anesthesiologist was called into the recovery room. A cardiologist was consulted. Michelle kept talking to me cheerfully, telling me that it wasn't uncommon to have PVCs. 

One of my delivery room nurses came in to check on me, asking if anyone had brought my baby to me yet.  When she found out that I hadn't seen her, other than the quick glimpse in the delivery room as doctors and nurses swarmed about me after my spinal went too high, she marched off to "get that baby girl" for me. Finally, more than two hours after she was born, I got to see her. The nurse had to help me hold her, because my hands were still a little numb.

She was beautiful.

After about four hours in the recovery room, I was finally taken to my room, where my parents, husband, and three year old son were there to greet us, and everything seemed to be back to normal. But it wasn't. Someone came in the room to hook up a Holter monitor, so my PVCs could be monitored. (If you've ever worn a hospital gown before and wondered why there was a little pocket in the center of the chest, this would be why.) The monitor was about the size of a hand-held video game and had about a half dozen very thin wires that attached to electrodes which were placed on my person in various places. When I would nurse the baby, the monitor would clunk into her. She would clutch the wires in her fingers while she nursed, and I would have to untangle her with one hand while holding her with the other.  The nurses brought in a roll-away bed for my husband, so he could stay with me. Some kind of special iv needle was inserted in the back of my hand "in case they needed it." Sleep did not come easily.

The next morning, the cardiologist ordered an echocardiogram, which is an ultrasound of the heart. The technician who performed it was very professional and never said a word during the procedure, but we could tell by what she WASN'T saying that something was very wrong. Later that afternoon, the cardiologist, Dr. Craig, came in to give us the results.

They weren't exactly encouraging.

I had peripartum cardiomyopathy, a relatively rare, life-threatening condition characterized by left ventricular dysfunction and symptoms of heart failure that can occur in a previously healthy woman, occuring in the last trimester of pregnancy or up to five months after delivery (Thanks again, clevelandclinic.com). The heart becomes weak and can't pump blood efficiently. This causes the heart to enlarge, which then causes the mitral valve to leak. 

It can lead to heart failure.

The statistics were grim. One-third of the patients with peripartum cardiomyopathy get better. One-third get worse. One-third stay the same. It is worse with subsequent pregnancies, so I was not to get pregnant again. I would immediately be put on digoxin, a drug used to treat heart failure and which helps the heart work more efficiently, and a blood pressure medication so the heart wouldn't have to work too hard. I would not be able to breastfeed. If I did not improve, then I would need valve replacement. Or a heart transplant.

These are not words a hormonal woman wants to hear.

My brother and sister-in-law were there when we got the news, and they took on the task of telling my parents for me. The shock of the diagnosis, the possibility of surgery, the possibility of heart failure were impossible to fathom. But telling me I couldn't breastfeed my baby, when there was a very real possibility that I might not live to do anything else with her, had me inconsolable. So much so that the OB on call (naturally it was the weekend) spent hours doing research to find a blood pressure medication that would be compatible with breastfeeding. The downside? I would have to take it every six hours, around the clock, as long as I was still nursing.

I spent the next 24 hours feeling very scared and very sorry for myself. Then I decided it was time to suck it up and be positive.

For the next year, I got up every night at 3 a.m. (even though the baby started sleeping through the night at five weeks old) to take the blood pressure medicine. (To this day, if I happen to look at the clock at 9:00 or 3:00, a.m. or p.m., I jump a little, thinking it's time for my medicine.) I went to the cardiologist every month. Follow up echocardiograms showed my heart slowly returning to a normal size (kind of like the Grinch's heart). It turned out I was one of the lucky one-third who got better, and after three years, I was dismissed by the cardiologist.

I still have PVCs, especially after surgeries, and they continue to trouble my dear recovery room  nurse Michelle. And my oncologist has certainly noticed them. My husband used to take my pulse while I was sleeping, making sure my heart was beating, checking on the frequency of the PVCs. They are not dangerous, in and of themselves. 

I dodged a bullet with the cardiomyopathy. I dodged one with my breast cancer. I'm hoping no more bullets come my way, but if they do, I'll don my Wonder Woman bracelets and deflect those, too.