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.

A New Early Intervention Adventure

M has taken a few steps. If we encourage her, she’ll take two or three before she gleefully collapses on the floor and crawls away at lightning speed.

I wrote about her first steps in “Waiting to Walk” and more recently in “The Timing That Is Not Our Own,” but the truth is that we’ve seen no progress on any of her physical goals since she stopped getting physical therapy a month ago.

I’ve heard from a number of people specializing in developmental delays that a toddler’s brain, especially a preemie’s brain that is working overtime to catch up, will often focus on either walking or talking, either on physical goals or language goals. And I have seen that scenario play out in both of my children. The most recent example is with M, who is now picking up at least one or two new words each day, but she’s not walking, though she’s nearly 19 months old.

We had M assessed by the state this week to determine her eligibility for early intervention services, and, as I expected, she has significant delays in her gross and fine motor skills, while she’s completely on par with her peers in language development. Until age 2, our state corrects for prematurity, so M is being evaluated based on when she should have been born and not her actual age. Before we moved, we lived in a state that was more aggressive in the first years and did not adjust for prematurity. There she would still be evaluated as an almost 19-month-old, instead of a barely 16-month-old.

The advantage in M still not walking is that she qualified this week for therapy, and once a child has services and is in the early intervention system, it’s so much easier to increase or alter services. I am so relieved to know that M is now in the system, so she’ll be followed more carefully until she’s 3. Had she not qualified now based on the referral generated by our out-of-state move, we might have had to wait until her delays were even more significant before she received any services.

I am such an advocate for early intervention, because I have seen the difference it has made in my children. I don’t believe in waiting to see what happens. Children’s brains, particularly in their earliest years, are fantastically malleable and incredibly resilient, so the philosophy behind early intervention is to help children bounce back from all the setbacks of being a preemie during the window when a child’s brain is the most forgiving.

So, I’m thrilled that M will receive early intervention, but I’m also surprised that she qualified for occupational therapy instead of physical therapy. Occupational therapy is generally more focused on skills necessary to everyday life.  Our former pt texted me, “What did she not do?” and I texted back, “Walk?” with a smiley face. I think the belief behind the recommendation of occupational therapy over physical therapy was that if we push M too hard physically just when her language skills are blossoming, her talking may suffer as well. And the therapists assessing her all agreed that she is so very close to walking.

But, as her mother, it was my job to say, “Yes, but she’s nearly 19 months old, and she’s not walking. I see that as her biggest issue right now.” And it’s my prerogative to be concerned that maybe we really should be pushing her physically, because she is capable and she is falling so far behind. However, I will reserve my judgment until we meet our occupational therapist and set M’s new goals. Occupational therapy will be a new experience for me, and as long as we can give M the confidence she needs to begin taking steps on her own, I’ll be grateful for the help, regardless of which kind of therapist provides it.

The Timing That Is Not Our Own

Closing on our first house

My husband and I are living in our fourth city as a couple, and as we prepare to move again, I can’t help but see a pattern to all the moves. With each transition, we changed a bit. We met new people, and we changed jobs. Our accomplishments and failures varied. Each place asked different things of us.

I see very clearly why we were here in this place, directly between a city with excellent NICUs to our north and a college town with an amazing preschool to our south. When we first came to look at homes before we moved here, I was newly pregnant, and our realtor had to remind us to view each home as parents. Did the house have a yard? Could you cook in the kitchen and see children playing in the living room? We had wanted a cottage near downtown, but instead we chose a comfortable home in the suburbs because it was close to my husband’s new workplace. We didn’t concern ourselves with the ratings of area hospitals or preschools, because we had no idea what lay ahead of us.

Almost from the moment we arrived with the moving truck, I was unhappy. Nothing about this place felt like home. In the six weeks before J was born, I wondered what we had done. And I knew my feelings weren’t the moving jitters that settle down after all the boxes are unpacked. I had moved enough times to sense immediately that this place would never be Home for me.

But, when we have kids, it’s not really about us, is it? With four years of perspective, I see vividly that this place was never about my husband or me. It was about what our children would need.

And, oh, how their needs have been met. Obstetricians who performed skillful emergency surgeries. An amazing NICU filled with dedicated professionals who cared for our children in all the ways we couldn’t. A pediatrician who has rejoiced with us. A speech therapist who helped J find all the words that jumbled in his head, frustrating him in ways he couldn’t communicate to us. A physical therapist who has known my babies since they were stranded in newborn bodies and who has been the only friend I’ve seen on a weekly basis for the last 3.5 years. A preschool with more devoted and talented teachers under one roof than a parent could ever expect, a place that has become a second home for my kids. These people have been life-sustaining in so many ways, and they have been an emotional oasis for all of us.

The days have been so very long, and I’ve wasted plenty of time yearning for new adventures for our family in a place that feels more like home. But, I’m amazed to discover as our time here draws to a close that it hurts to leave. This was the home of our babies, the anchor during difficult storms, our prison during winter quarantines, and our refuge during days that sucked the life out of us. Leaving here closes the chapter on tiny babies and NICUs. We came to this home as a couple, and we leave as a family.

This place has taught me about timing. We are not the masters of time, no matter how much we think we understand the plan. Having two tiny babies was never in my plan, but I would never change it. And living here might not have been of my choosing, but it was never about my husband and me. Our reason for being here was those babies who needed so much love and care in their early years.

And this week I’ve had one final lesson to underscore the point. Since M was born nearly 18 months ago, I’ve been saying that I didn’t want to leave her physical therapist until she could walk.

M took her first two steps at home this week, and she took four steps in therapy today. She is beginning to walk, the week before we’re leaving.

Sometimes, it is inexplicable how neatly the loose ends of life are tied.

More Than You Deserve

I woke up just as stressed this morning as I was yesterday and the day before. I am fed up with negotiating over the sale of our house. This morning, I felt like I was walking around in a black fog.

Then, I heard M in her crib, and when I went to get her, she was sitting in her bed. She smiled her bright, toothy grin and held up a doll. I asked her if she was playing with a toy, and I took it from her. I kissed it and handed it back to her. She pretended to kiss it. I looked at that precious, joyous gift of a child, and I could feel the black cloud lift. I picked her up, and she started patting my back with her little baby hand, as if she was just overjoyed to see me.

Sometimes, having kids is draining. Other times they give you exactly what you need. And some mornings, they give you even more love than you deserve.

M’s Homecoming Day Party

I wasn’t sure how M’s Homecoming Day party would turn out. We invited about 20 family members, and in the days before the party, fewer and fewer people said they could come. We ended up with so few people that I told my mom and my mother-in-law that I hated that they had put so much effort into a party just for us. But, as it turned out, I am so glad we threw M a party. The time with family was wonderful. M was delightful and put on a show for us, dancing in her high chair and smacking her cake to bits. She loved being the center of attention (probably not for the first or the last time!). As I watched her giggle and glow, I was so happy. A bystander who didn’t know our story would never know M wasn’t always the picture of health. And there she was, so full of life, so precious.

Next year, I intend for us to begin celebrating M’s birthday at her actual birthday in January, and I’m sure we’ll do something small to mark Homecoming Day. But, my advice for anyone on the fence about acknowledging a Preemie First Birthday or Homecoming Day is to do it! Though our gathering was small, it was full of joy, and it was the perfect way to mark M’s first year with us.

My mom made the lemon cake.

And my mother-in-law made all the decorations.

The theme was sunshine, and it turned out so lovely!

Look at that twinkle. She is definitely trouble.

Happy Day, Sunshine!

I am so glad for today.

The last few days my mind has been replaying all the events that led to M’s early birth. But, today is M’s day. Today, I woke up happy. Today, it doesn’t really matter how M got here but just that we have her.

Before we had to take M out of Mother’s Morning Out, the teachers called her their Ray of Sunshine, and they agreed to each take turns holding her because she made them so happy.

We feel that way too. J is kind, but he’s not overly affectionate with anyone other than M. She is irresistible, squishable, and squeezable; we all dote on her. She’s exuberant, both in her happiness and in her irritation.

She squeals and squawks. She grunts like a little piggy. She’s always making some noise. Or kicking. She is in constant motion, unless she’s asleep. M just learned to army crawl across the floor, dragging her right leg behind her. It’s not graceful at all, but it gets her where she needs to go, which is apparently everywhere. She’s a quick learner. I watched her, in less than 10 seconds, figure out how to open a cabinet door and let it slam to make noise. In just a few minutes, we taught her to wave, and a few days later she’d added “Hey!” to it. (I think it’s telling about her personality that hey is her first word.) I swear she said, “Ball!” today, as one rolled past her. It’s like once she’s made her mind up to try something, nothing will stop her, and I see that as an awesome trait–unless she’s made her mind up to pull on the Christmas tree or put pieces of grass from the floor in her mouth or yank a bowl full of cereal off the table. I feel like she will give me so much joy and many gray hairs, but hopefully much more joy than gray hairs.

M does not see obstacles.

She’s so determined…

She just keeps going until she gets where she wants wants!

She and J are polar opposites, and I love it. She is the warmth to his reserve; he is the regulator to her exuberance. She is willing to try anything, when he’s hesitant to do anything new. She has no fear–throw her higher, flip her over, toss her around, and the louder she laughs. J has plenty of fear for the both of them. J is careful, thoughtful, and precise. I always thought he would slow her down until a friend pointed out that she might convince him to do all sorts of crazy things. What I love most are all the things both kids share. They are both so bright and so full of life and so energetic. They will keep me on my toes, that is for sure.

So, on M’s special day, I am so glad we have her. I love that today is her day, and I celebrate what a unique, special, priceless, adorable, fun child she is. She lights us all up. She is definitely our ray of sunshine.

Happy 1st Birthday, M!

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.