Two Years Ago

December 2012 155It was two years ago. In the same house with most of the same people. I felt anxious, exhausted, and so swollen. I had never taken my blood pressure at home. I had never needed to check my blood pressure at home, but as I was lying in the recliner wishing my feet weren’t so swollen, I suddenly knew I needed to check my blood pressure. I had a sinking feeling in the pit of my stomach. On the outside, I looked fine. For the most part, my symptoms could be attributed to entering the third trimester of pregnancy. I don’t know why I suddenly had the epiphany that my swollen legs, my exhaustion, my irritability, and my flushed cheeks meant anything more, but I knew. And when we saw the astronomically high numbers and my mother-in-law calmly suggested we retake my blood pressure to make sure the machine wasn’t malfunctioning, I just knew the baby and I were in big trouble.

My mind keeps going back to the days that followed. I wonder if New Year’s Eve will always be about my almost New Year’s Eve baby, about preeclampsia, about terror and joy, all intertwined. Two years and counting now, and it’s all so fresh. If only I had been assured that this wild child would be mine, that M would not always be so skinny and fragile, that I would emerge on the other side with this infuriatingly independent, fierce, hot-headed, gleeful, mischievous magic child, I would have had some peace.

It’s funny how the most restless, energetic, ferocious, and un-peaceful being brings the most peace.

Christmas M

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.

The Open Wound: Having More Children

Family Pic

In the months after J’s birth, I struggled with what had happened, how suddenly he had entered our lives. I felt paralyzing guilt that I, his safe keeper, had tossed him into the world so early. Before J, I had been the preemie in the family; born at 36 weeks and weighing 5.5 lbs, I had been the success story. It never dawned on me that in a family of healthy pregnancies and healthy babies, I could have a baby born 10 weeks earlier who was half my birth weight.

In the months after J came home, the isolation almost did me in. We had moved to a new city six weeks before J’s birth, and now the timing of it seems spectacularly orchestrated. But, in those lonely winter months, I felt used up, spent, hung-out-to-dry.

As one hard day slipped into another, my baby grew, and then he thrived. We thought it would be a good idea to try having a full-term baby. No one could say what would happen, and everyone said the next time would be different.

And she was.

Again, there was the shock and the disappointment, but this time there was fear not just for my baby but for myself. Preeclampsia is a killer, and anyone who has had it will tell you that it feels like a killer. In the hours before M’s birth, I felt my body coming apart, and because I was already J’s mother, I was terrified at the thought that I would lose the chance to mother him.

I’ve said before that having M freed me from guilt. What has happened defies all reason and is beyond all logic. It makes no sense. And after another NICU stay, I found myself remade. I let go of the doubt and guilt. In so many ways, M healed me.

Except for one: her birth made it clear that I had no business having more babies. It remains an open wound for my husband and me.

I always wanted to have children. I always envisioned being a mother. I always thought I’d have three kids, maybe four and at least two. So, here I sit the mother of these two lovely children, blessed in every way. The logical feeling would be peace; the obvious reaction would be acceptance. And I do have peace about how I had my babies. I cannot separate having preemies from being a mother because it is all intertwined in a lovely chaos. I’m usually a pretty clearheaded decision-maker, and obviously, I shouldn’t tempt fate by having a third biological child. My husband and I already made that decision, with very heavy hearts, last year. But, the truth? The truth is that I am not the least bit mollified by having a boy and a girl. Sure, life might be simpler with two children. I am plenty busy with a bright future ahead of me. I should put my baby-rearing days in the rearview mirror and be glad for it; after all, the last four years have been brutal.

The problem is that it doesn’t feel right. It’s been 19-months and counting, and I still have no peace. I do not feel complete. I’ve donated my baby clothes and consigned my baby toys. I’ve been praised for having the All-American family. But, it still feels like a knife in my heart when people tell me I’m lucky to be done with my childbearing. This decision was never of my own making, and in fact, my husband and I have already agreed that if the decision were ours to make, we would choose another baby.

So, I will say it. I will say the word. Adoption. I can’t say whether we’ll choose it, or whether it will choose us. I can’t say when or how. I don’t know. Maybe never. All I know is that I feel that there is much more to our story. I feel that there is room in our lives; maybe not now, with a wild toddler still dominating the show. But, there is a maybe. Most people with whom I’ve shared this sentiment don’t warn me away from adoption outright, but they don’t encourage it either. I assume they love us, and they’ve seen how we’ve struggled. I’m sure they think our lives will be simpler if we don’t choose such a complicated road. But, I am not the woman I was four years ago. I have changed. What once terrified me is now my normal, and I feel perfectly suited–and even called–to mother another preemie.

In fact, as I write this, I’m simultaneously dredging up difficult emotions and being entertained by a toddler trying on a red Thomas hat and squealing “PEE-PIE” as my eyes meet hers. I have come to see this messy life as such a treasure. Sure, traveling with little ones is trying, much of our house is infested with crumbs and goodness knows what else, and my husband and I don’t get many date nights. But, life is joyous and sticky and full of love. I am witness to miracles on a daily basis, and I’ve fallen in love with being a mother–which is the total opposite of my dark days as a new mother when I cried to my best friend that I didn’t know how I’d go on. Sometimes, you have to be torn apart and thrown asunder to be remade.

So, back to my point. I guess I’m surprised by the reaction, by the stigma against adoption. Just like I always planned to be a mother, I always considered adoption. I discussed it with my husband before we were married. Though we’ve arrived in this place from a journey we never expected, the possibility of adoption isn’t really a radical idea for us.

Maybe more time will bring more peace. Maybe we will feel our family is complete in another year or two. Certainly, our lives are full, and adventuring down an unknown road is frightening. But, when did anything in life become certain? All I want is the freedom to consider the future of our family. Whatever decision we make will be mulled, as we generally mull all of our major decisions, certainly ones of such magnitude. Sometimes, it feels like because we had sick babies who survived, we’re supposed to accept our fate and not want anything more. I think that’s a universal preemie parent frustration, the sentiment that we’ve already challenged fate and won. I would never turn to a family with several healthy, full-term children and tell them to quit while they’re ahead.

The worst decisions I’ve ever made have been fear-based, not doing something because I was too afraid. The best decisions? The ones that involved me jumping off metaphorical cliffs and hoping for water down below. I refuse to live my life scared, not in spite of the last four years but because of them. We were spared nearly everything I wasted my time fearing, and all the things that happened were outside of my realm of possibilities. That will teach you to stop living scared.

So, all I’m saying is the your-family-is-complete topic is extraordinarily painful. So many wounds surrounding our preemies have healed, or at least have begun to heal. But, that one, the one about the size of our family? It is still an open wound.

And nothing about the size of our family has been decided, yet.

The Blood Pressure Monitor

I went to my podiatry appointment this morning. It’s the Monday after the time change, so I was a little groggy. And I felt the doctor was less chipper than usual, probably because he is also groggy. But, I left feeling completely out of sorts, and on the way home, I tried to decipher why.

It’s all for the most ridiculously mundane reason: I had my blood pressure taken, and I wasn’t prepared for it.

How silly is that?

I never even knew what good blood pressure numbers were before preeclampsia. I knew high blood pressure ran in my family but only in people older than 40. So, as a young, healthy person, I paid very little attention to it. I never even thought about it when I was pregnant with J. But, after the shock of preeclampsia with M, blood pressure cuffs give me the chills. They are revolting. The sounds they make take me right back to having my blood pressure taken every fifteen minutes. For days. Lie this way, turn that way, tip your body back, relax, don’t talk, try to rest and hope that the next reading is better. (How do you relax when you’re living by those numbers?!) Now, at a podiatry appointment a year later, someone pulls out a blood pressure cuff, and the fear absolutely floods me. I tried to make a joke about it to the nurse, but it sounded hollow. It really wasn’t funny at all.

The podiatry nurse has daughters born at 24 and 25 weeks, so during every appointment, we chat about how our preemies are doing. We talk about changes in our NICUs and what life is like with preemies and how people who haven’t lived it just have no idea. His youngest daughter recently started walking unassisted, he told me, and she’s two if I remember correctly.

I love conversations about preemies, because now it is my home. It is my world. And I rejoice in it.

But, the stupid blood pressure monitor? I wanted to fling it off of the highest building, which is pretty unfair because it’s not really its fault I have such terrible associations with it.

M helped me make peace with so much of the NICU trauma that I don’t have many triggers, and I guess until this morning I didn’t realize the power the blood pressure monitor has over me.

I talked to the nurse about his triggers. He laughed about how the coffee pot when they first brought his daughter home sounded just like the alarm on her feeding pump. Get a hammer and kill it! But, it’s only a little bit funny.

Even walking into the podiatrist’s office is difficult. It’s on the same floor as my high-risk doctor’s office. When I park the car, I think of all the visits I made here. Each week, I had progesterone shots in the hopes that M’s journey would be different. (Well, it was but not in the way we’d hoped.)

Every time I drive downtown, I am a new mother again with a sick baby in the hospital. When I go to the town where my son’s school is all my memories are of his early years and how difficult they were. When we drive to the town where my son was born all I can think about is that night in the hospital when they couldn’t stop my labor. When I drive to visit my best friend from the NICU, I think of all the trips I made when all our kids were on lockdown and we only had each other.

From the first six weeks we lived here when J was born so suddenly until this moment, everything about this place has been about preemies. I know I can’t make up my mind because one day I say I don’t know how I’ll leave this part of our lives behind because it has changed everything, and today I’m saying the ghosts of the NICU are in every closet and I can’t get away from them.

We are moving this year to a place where the memories aren’t ever-present. They will be memories, not everyday reminders. While I’m sure I never want to forget all my babies’ firsts and while I’ll always hold dear the places that have made my children’s successes possible, I can’t help but think it is time to put all the visceral reminders in the past.

We can leave the house where we brought our tiny babies home. We can leave the cities where our babies were born. We can dust off the NICU cobwebs that seem to be sticking to us, and we can start fresh in a new place.

But, I am probably deceiving myself if I think I can ever look at a blood pressure monitor the same way. At least the next time I see one, I’ll be better prepared.

Why?

I was so busy that I hardly marked the event. It was only later in the day that I realized what I had done. I don’t think anyone else would have thought it was a big deal, but at least my husband frowned too when I told him.

M had her last bottle of frozen breast milk.

She had my milk off and on during her first year, because of a milk protein allergy. It’s largely the reason I gave up breastfeeding in the first place, and it’s such a painful subject for me.

But, I always knew there was still milk in the freezer.

M is bigger and stronger. She’s becoming a toddler and leaving babyhood behind. It’s not that M won’t have any more breast milk, because I’ve come to terms with that fact. Preemies are babies for so long that it’s not like I haven’t had a chance to savor it!

The real heartache is that I won’t have any more babies. It’s that I won’t ever really breastfeed (pumping isn’t breastfeeding). It’s that I will have no more milk for no more babies.

I know life goes on, and I should get over it. Life will be much simpler without high risk pregnancies and NICU stays and long preemie babyhoods. I know the decision we made was the right one.

Well, really, there was no decision. When you’re told not to have more children, that you’re at risk for preterm labor, preeclampsia, uterine rupture, and bleeding to death, what is there to decide? I have two beautiful children whom I need to mother. With J, having a preemie was the shock of a lifetime, and the second time having preeclampsia was a bizarre turn of events. What condition or complication would my body think up next time? I know I can handle preemies, but what if I had a baby even earlier? Too early?

And there was my doctor’s look–my doctor who delivered J on that terrible night. I was just a month removed from M’s birth, and my blood pressure was still swinging erratically. I was weak and fragile. And what I wanted to hear was that somehow next time might be different. That there might be a next time.

My doctor looked me square in the eyes and said the two separate incisions on my never-fully-expanded uterus put me at great risk for bleeding to death. Assuming everything else went fine, which was quite an assumption. No more children. No more.

I called my best friend on the way home, and I told her that she’s lucky. She has yet to have babies, to witness the miracle of their births, to meet these new little people who will dominate her life. And I am envious.

I told everyone that maybe with time I would make peace with the decision that was not mine to make. Plenty of people have much worse to make peace with. I try not to wallow. But, every time I hear someone is pregnant. Every time I see a big belly. Every time I look at my babies who are growing so fast. I feel such a pang through my heart. I just don’t have any peace about it at all.

I look at my two and wonder about a third baby. What would he or she look like? My babies are so different: a boy and a girl, cautious and wild, serious and silly, reserved and gregarious. What would a third child be like? Who would that child be?

It feels like there is another child out there. Like we are missing someone.

A year later, and I still feel the exact same way as I did when the doctor told me. A rush of blood to my face. An ache in my heart. And such sadness.

Why does it have to be this way?

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.

The Face of Preeclampsia

This is what severe preeclampsia looks like. I thought I was just 29 weeks pregnant. Apparently, I was 29 weeks pregnant and carrying about 15 pounds of water weight. This is a few hours before I was hospitalized. When I see the photo of someone who looks just fine on the outside, I still can’t believe it. I had stroke-level high blood pressure, and I wasn’t even flushed! Seven months later, it is still bizarre.