Recent Preemie Babies 101 Posts…

I’ve been so out-of-touch that I failed to even link to my most recent posts on Preemie Babies 101…

Making Peace with My C-sections

and

Vaccinations and Your Preemie

Mothers and Preemie Daughters

Baby MI just read a Huffington Post article about a new “Human Placenta Project,” which aims to better understand the organ that makes growing babies possible. If the placenta fails, the pregnancy fails. If the placenta suffers, the pregnancy suffers. Amazingly, such an important organ is little understood.

It is thought (and I stress thought because no one really knows) that early-onset preeclampsia is related to a poorly performing placenta. Why and how and what to do about it are all questions up for research.

After I had J, I thought a day might come when I’d put preterm labor, J’s traumatic delivery, and the sorrowful months of his babyhood behind me. I knew they’d marked me, that they’d marked all of us, even our extended family. But, I thought as J grew and his health improved and we had big, healthy, full-term babies, that it would all seem like a dream.

In so many ways, M changed everything. Not only was my life forever marked by the way my children entered the world, not only was my childbearing over, and not only was this a way of life that I began to embrace…

M was a girl.

It’s different having a preemie who is a girl. A huge question looms: Is this genetic, beginning with me? Could M have preemies, like me. I have nothing to warn her against, because I never received a single diagnosis about anything. Maybe it is just me, but what if it isn’t? I want M to be resilient in the face of adversity, but do I wish this adversity on M? Never.

All the Preemie Mamas out there know exactly what I mean. All the parents out there probably understand too. But, I know the Preemie Mamas hope one day they’ll have the satisfaction of holding big, healthy babies and watching their children have the beautiful experiences they missed.

It’s even deeper than that, though. I am afraid for M, because preeclampsia was deadly. And it felt deadly. It was shocking how rapidly it took hold of me. It was a thief in the night, ready to take M and me both. And what if M weren’t as fortunate as me? What if she lost her baby, or her life, or both?

Sometimes, I feel like because so many people have healthy babies in our day and time that we’re complacent on research into pregnancy and pregnancy complications. Too many babies die unnecessarily around the world because of our lack of knowledge. Once things go haywire in pregnancy, it’s a crapshoot.

For my daughter, I have to believe that things will be different.

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If you’re interested in the Huffington Post article, here’s the link.

5 Things I Wish I’d Known When Choosing a High-Risk OB-GYN

I forgot my post about choosing a high-risk ob-gyn appeared on Preemie Babies 101 today…until I saw a belly in my Facebook newsfeed. I thought, “Hey, that kind of looks like my belly.” And then I realized it was.

Blogging about pregnancy and childbirth sure can be awkward sometimes.

Click here if you’re interested. In high-risk ob-gyns, not my belly in front of a Christmas tree. There I go feeling awkward again.

Childbirth Small Talk

January 2013 078At a kids’ party last week, I realized something: I am very uncomfortable around any discussion of natural childbirth. Like sweaty palms, looking for an escape, must use my baby as a buffer kind of uncomfortable.

I was those women, before I had my own babies. I watched The Business of Being Born and complained about the high rate of C-sections and how doctors rushed long labors even though both mother and baby were healthy. I might have even questioned women who actually chose C-sections or bottle-feeding over the more natural options, though I am no longer in any position to judge, if I ever was.

In many ways, I tend toward a naturalist way of thinking. I believe in recycling and reusing and reducing consumption. I cloth diapered both of my kids. Ask our contractor if I don’t love me some trees, and I’ve proposed adding chickens to our future garden. I love organic produce, and I only use cleaners made from natural and harmless ingredients, most of the time. I have a hippy bleeding heart for the natural world.

So, on one hand I totally get the sentiment that in pregnancy and childbirth, less is more when it comes to intervention, but I feel so uncomfortable when the topic of childbirth comes up. And with a bunch of women with small children, it’s bound to come up.

I can small talk with the best of them. My husband says I can talk to a fence post. But, childbirth is not a topic of chit-chat for me, and I can’t small talk birthing babies.

I remember the things I was asked to do in the trenches of emergency childbirth, and I am confident about the kind of woman I was when I was trapped in that dark corner. I know I was tough as nails. I know I was a fighter. I know my husband and family were proud of me. And I forgive my body for what it did to all of us.

But, in a conversation about the ills of C-sections, what do I say? Somebody, please tell me? Yes, so many women have C-sections for all sorts of reasons that probably don’t justify the risks and the expense of major surgery. But, I wasn’t one of them. Without medical intervention, my husband would be a widower who lost both of his tiny children. That is my reality.

What a conversation killer.

So, I keep my trap shut and don’t say a word. But, then I haven’t done myself or other women like me or the women who speak of things they don’t understand any favors at all. It’s all still too painful for me to casually mention that my body in pregnancy was like the bad apple in the Berenstain Bear book I read as a child: perfect on the outside and a mess on the inside. I don’t want to shock or frighten or sadden, so I do the worst possible thing, which is shut down completely. This is no way to make friends. This is no way to advocate for preemies. Shutting my mouth is no way to raise awareness about how more research is needed to understand even the basics of some of pregnancy’s most common disorders.

I sit there like a lump on a log, contributing nothing. Why do I clam up?

I am afraid. Of being judged. Of being pitied. Of being misunderstood. Because it feels worse to open up and then be shut down than to ever open up at all. I realize this sentiment translates to so many of us, and I wonder what kind of people we would be if we didn’t feel so isolated. The larger our communities get, the more lost I fear we are, away from the people who know us best. Some of my dearest loves in life who are my soft place to land are scattered–no lie–all over the world.

I realize that at the kids’ party I didn’t even give the childbearing-discussing women a chance to be curious or understanding or sympathetic. I prejudged them. But, then I picture myself in that situation again, the odd woman out talking about one of life’s most painful topics for me, and I still can’t imagine what to say or where to begin.

Thanks, Troll Lady

I saw a discussion on Facebook on another Preemie Mama’s page about C-sections and some of the negative feelings women have about emergency deliveries. A woman posted a comment that I found striking. She was discussing full-term births, which is an entirely different realm from preterm births, so her perspective is clearly different from mine. But, I found what she said so dismissive of preemie mothers, of the heartaches and challenges. It’s not her opinion that matters to me, and I don’t need her permission for my feelings, either. It’s just that I’m blown away by how callous she is.

She said that she is appreciative of her children, and she realizes they wouldn’t be present without the intervention of a C-section.

Valid points but a bit misguided. You can love your children and dislike the way they entered the world. It’s not mutually exclusive. Just because I adore my daughter and could eat her chubby cheeks up with smooches doesn’t negate my right to detest the sickness, the suffering, the fear, and the overwhelming sadness that surrounded her birth.

But, the thing the woman said that really amazed me was that you can’t feel cheated and blessed at the same time.

Why does that statement upset me so much? Trolls say awful things all over the Internet, and usually I just sweep that sort of negativity under the rug and carry on. People who understand this journey buoy me and give me strength. They are the ones I look toward when I need reassurance. Not some Troll Lady who has had both a natural birth and a C-section with her full-term babies, which apparently makes her an expert on all birthing. By all mothers. Everywhere.

I never knew women could be so unsupportive until I became a mother. And not just a mother, but a mother to tiny babies. It’s like when I needed a big hug from mothers everywhere, I was thrust into a lion’s den. I’ve lost a few friends over it, because I no longer have room in my life for such wasteful negativity. But, it never ceases to amaze me, this tendency for mothers to criticize and judge and dislike and interrogate and intimidate and chastise other mothers. Somehow, just when we should become our most humble–because we’re wiping poopy bottoms and leaking breast milk all over ourselves–instead we become hardened to the experiences of others.

But, my reaction to Troll Lady is more than just a distaste for mommy judgment. When someone uses the word blessed, it has a spiritual connotation, which puts that person on really dicey ground. How dare someone question my ability to feel both cheated and blessed? I am entitled to my own feelings, and I have had many internal dialogues with my God over how all this stuff went down. And I’m quite sure He knows that every day that I wake up to my two miracles, I buckle under the weight of my gratitude. I know I am blessed. Because a few short decades ago, my husband would be living alone. Without his son, his daughter, or his wife.

The more I thought about the Troll Lady’s comments, the more I actually appreciated them. I had never given much thought to the words cheated and blessed. As a matter of fact, those words and their relationship pretty much sum up the baggage I’ve been carrying around for the last 3.5 years. The push and pull between them is exactly the conundrum I feel.

So, I couldn’t help myself. I had to respond to the troll, which is probably the worst thing you can do. You can’t fix stupid or mean. But, just in case she’s misguided and she ever comes across another preemie mama, for public service reasons entirely, I replied:

“You may be right. It might be a preemie mama thing. But, feeling both cheated and blessed at the same time is actually the best way to describe how a preemie mother feels. I’ve never heard it put so simply before.”

And I meant it. Thank you, Troll Lady. Because I finally have the concrete definitions for the emotions I feel: terribly cheated but incredibly blessed.

New Year’s Day 2013

New Year’s Day will never be the same. Gone are lists of how I’ll improve myself or what I’ll do differently. Gone are lazy days of reading books I bought with Christmas money. Gone are all the other associations I have with a day that has always been a holiday for me.

For the rest of my life, it will be the day before M’s birthday, the day we raced across three states from one hospital to another, outrunning the inevitability of preeclampsia. M would come early, and she would come soon. The question was only: how soon?

I have always been a spiritual person, and I have always believed in a higher being. It’s a very personal part of my life, and I was raised to make my own decisions in the religion department and to only share them with others when invited to do so. I think very much about making purposeful decisions, ones that either make me a better person or give happiness to those around me. But, I don’t pray much in a formal sense, and sometimes when I do, I feel a little guilty, like I’m daring to ask for more when I’ve already been given so much.

Throughout my life, I’ve had significant moments and amazing coincidences that were more than coincidences. I’ve had moments of clarity when I felt pushed forward in a direction, and I’ve felt consoled in dark times when I reached for something more profound than any person could give me. I’ve begged for my life, and I’ve begged for the lives of my children. I’ve sent request after request for the safe travel of friends and family, but I have only once in my life asked my God for a very specific request. I have only once asked my friends and family to pray for that one request.

And it was answered on New Year’s Day 2013.

While on vacation in Texas last December, I took my blood pressure because I wasn’t feeling well, and I knew as soon as I saw the results what it meant. The question was not whether M would come early, as J had, but how early. So, during the 36 hours I was hospitalized in Texas, I did not ask to carry M full-term. And I did not ask for my preeclampsia to be reversed because it didn’t feel right asking for something I didn’t feel could be changed.

My simple prayer request was that I somehow make it back to my hospital at home. The one 8 hours away. The one where J lived for 91 days. The one where we knew all the doctors and nurses who would care for M. The one where my high risk doctors had privileges. The one 30 minutes from our home. The one that would keep our family intact during M’s NICU stay.

Reclined on my left side in the hospital, I marveled at the pickle I was in. How would I survive the stress of the NICU with my husband and son away from me? How would my husband work knowing M and I were several states away? How would my son manage without the mother who had been his sole caregiver for two years?

The obstetrician on call was so kind about our situation. He and the nurses had discussed my dilemma throughout the day, he told me. But, New Year’s Eve was a stormy night, and my condition was no better. He simply could not let me go home. As he said the words, I knew he was right. He told me he’d schedule me for a C-section on January 2, assuming I was stable until then, so that the steroid shots for M’s lungs had time to mature them for her premature delivery. Then, he told me goodbye and Happy New Year.

My husband and I were awake as one year rolled into the next, he on his cot and me in my hospital bed. I told him that I only had one request, other than a general one for my health and for M’s: I just wanted to find some way to get home to a familiar NICU, to a hospital where things would be a little easier for us.

It didn’t look good.

The next morning, as I was eating breakfast, the new doctor on call strolled in. He was handsome with dark hair, and he smiled brightly at me, as he pulled a chair to my beside.

“How do you feel this morning, ” he asked. Was this a trick question?

“Pretty good, all things considered,” I told him.

“Do you feel like going home today,” he asked. And then he smiled. I’m sure my expression must have been amusing, because I was in shock.

“You’re stable. For today. I don’t know when you’ll have this baby, but it won’t be today. You have a window to get home, and I’d like to see you go,” the doctor told me.

Whether or not you’re the praying kind. Whatever God you do or don’t believe in. Sometimes life is miraculous, when you are handed just the one exact gift you’ve requested. Not more and not less. Just exactly, exactly what you’ve hoped for.

The doctor told me he’d woken up thinking about me, that he’d put himself in our shoes. He’d thought about what he would have wanted for his wife, for his family. He’d gone against conventional wisdom, against all logic, against all the norms about what you do with a pregnant woman suffering from severe preeclampsia who must have a C-section within a few days in order to save her life and her baby’s life. He did exactly the opposite of what he was trained to do. He thought with his heart, and he did what felt right for our situation.

He let me go home. He released me, knowing that he was responsible for that decision. And with his decision, the prayer I had said over and over again–more forcefully and with more clarity than I have ever allowed myself to pray before–was answered. My one request honored.

My husband was stunned too. He was amazed, because like me, he hates to ask for help, even for help from above. We’ll ask for help for others, but it feels greedy to do it for ourselves. But, we had begged for help, for ourselves and for our children. And we were in awe of the response we’d gotten.

We still are, really.

It was crazy what we did, leaving the hospital in a rush. I’ve never been discharged so quickly. We were off to the races, me reclined on my left side in the front seat of the car. Our toddler hardly asked a question, barely needed us to stop to feed him. Everyone was in cooperation to get home fast. Every time we stopped at a rest area for me to use the bathroom, I wondered at the world going on around us. Didn’t they know we were in a mad rush home? Didn’t they know I was very sick? Of course not. I didn’t even look sick.

And when we pulled up to the hospital, to the entrance that had become so familiar during the months we were visiting my son, I was relieved. So relieved. Because I’d been given the chance to do it all over again with another tiny baby in a place where I was comfortable.

So, New Year’s Day will never again be just a quiet day to welcome another year. My mind will always go to what we were doing during the first hours of 2013.

Haunted at Christmas

We have been celebrating Christmas for the last two weeks with our family scattered around the region. No matter how much fun we’re having, it’s never far from my mind what we were doing last Christmas. I was sleeping propped up, because I’d never been 7 months pregnant before and I thought nothing of being so uncomfortable that I couldn’t sleep flat. (This is the same line of thinking that allowed me only to notice I was having contractions with J once they were five minutes apart. Either I have a high pain tolerance or a high denial threshold…)

I was feeling bloated and tired last Christmas, but I was loving my big belly. I reveled in being pregnant, because, after all, everything was going well. There were no signs of early labor at my weekly high-risk appointments. Of course, no one was taking my blood pressure or checking for protein in my urine, both of which would have signaled the coming storm.

Instead, Christmas was a quiet day spent with family. J loved opening presents. My parents and sister were staying with us. It was a happy time. It was just a few days after Christmas that everything started falling apart.

I was a basket case in the month around J’s first birthday. So much pain came to the surface, along with a crippling gratefulness. I almost couldn’t get past what had happened and what could have happened. How were we so lucky? J was so tiny, so fragile, so delicate. He was born at a cutoff. Had he been any earlier, such a healthy toddler would have been impossible. And for him to come home without oxygen, for his heart condition to prove to be insignificant, for his whole body to overcome the start my body gave him. Miraculous.

M’s health wasn’t quite so desperate, but I was so sick. My body turned on us both. I had stroke-level blood pressure, blood blasting through my veins. My organs were beginning to fail me, and fluid so inundated my abdomen that breathing was painful.

For the last few weeks, my mind has been going back there. I feel the pain. I feel the fear. First birthdays with preemies aren’t just about the joy of having a baby; they’re about suffering too, the baby’s suffering and yours. I was so burdened with emotion with J that I could hardly appreciate the joy of the day. His second birthday was much more joyous. I thought maybe it was because J was my first baby and my tiny preemie, but I feel it all coming back again with M. It’s a beautiful time of year, and I am happy. But, I’m also a little haunted too. And history tells me it probably won’t subside until after M’s birthday.

A Pivotal Moment

I’ve noticed a human tendency, especially among athletes or people whose identity is found in their physical fitness, to equate health with achievement. Having just spent a couple of days sleeping on my cold bathroom floor, I’m certain that health is a gift.

I’ve thought lately about pivotal points in my life. Every person has them, the moments that separate your life into before and after, and certainly having preemies must rank somewhere near the top of mine. But, as I sort through memories that play like horror movie reels, what one moment stands alone?

J’s delivery was so rushed. Once the doctors and nurses realized that my labor could not be stopped, they prepped me for not just an emergency C-section but for emergency surgery with full anesthesia. As I lay tipped back in the hospital bed, practically standing on my head with my feet toward the ceiling, controlled chaos was all around me, a rotating door of people handing me waivers, advising me of my rights, asking me to choose a NICU downtown, explaining the procedure, taking my blood pressure, informing me on all the ways they would try to save J’s life. It was too much way too fast. My mind was whirling around in on itself, stuck trying to process: I am having this tiny baby now. As they rushed me to the operating room, I was completely disoriented. Someone forgot to tell the interior decorator that if the ceiling is white and the bedsheets are white and the hospital gowns are mostly white, all the patient can see as she’s wheeled to her fate is white, as if she’s already dead and on her way to Heaven. As they popped open the operating room doors and the bright light hit my eyes, I yelled back to my husband a goodbye, a pathetic, last-second, nearly-forgotten goodbye, and I had a pivotal moment. I was lying on an operating room table. All I saw was white and steel. All I could feel was cold. Would I live? Would J live? Would both of us meet on the other side?

Three things strike me about that moment. The first is that you don’t know how many moments you get in life like that, moments when you are certain that your life is either about to be spared or ended. Most of us don’t have many. And when you are spared, nothing in life ever looks the same again. I would say that moment marks the loss of the girl in me and the birth of the woman.

The second thing that strikes me is that I wasn’t alone. An army of people buzzed around me, prepping me for surgery. My doctor was there readying herself to perform one of the more dramatic deliveries of her career, since it’s not everyday you deliver a surprise 26-weeker in the middle of the night to someone you’ve never met. But, I felt more alone than I’ve ever felt. The anesthesiologist and the nurse anesthetist did more than perform their clinical duty; they stepped in for my loved ones. They stroked my cheeks with their fingertips and calmed me with gentle words. I’m glad I didn’t know that some of the best and most challenging work anesthesiologists do is emergency surgery on pregnant women. They made me feel like their only job was to soothe me, to give me some peace. They were incredibly compassionate in a dark place for me. As I waited to fall asleep, all I could see were their eyes. Their smiling eyes I’ll never forget. Their eyes, as I went to sleep. We should all be so compassionate, in whatever it is that we do in life. So much in this world doesn’t matter. It is people who matter, and each one of us deserves love, respect, and compassion.

The last thing that strikes me about that moment is that should I be on an operating table like that again in my life, I want to know that I did the important things and I did them well. Maybe I’m not famous. Maybe my life’s achievements don’t win any awards. But, awards aren’t the measure of a life well lived. Recognition is icing, but it’s not the cake.

Which brings me back to my original point:

Health is a gift. Our choice is what we do with it.