Thursday, July 31, 2014

Moving Day

I've been working on the new blog site for the last week. It's not perfect yet (is anything ever really?), but it's time to move over there permanently. Find my new home at: Thanks!

Friday, July 25, 2014

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.

Wednesday, July 16, 2014

Preemie Birthday Blues

I've written about how preemie birthdays are tricky here and here and here and here! And that's probably not even the extent of it.

I used to think after the big First Birthday, preemie birthdays would get better. And they have. But, the Dark Days are still like skeletons in the closet or ghosts lurking in the room: I don't want to acknowledge them, but they're present no matter what I say or do. I can't change what happened, and I can't change that it haunts me, even though the passage of time gives me so many good memories to outweigh the bad.

On a preemie Facebook page, I once saw a mother ask if anyone else had felt sad leading up to a preemie's birthday, and it was like someone unleashed a dam. A torrent of women rushed forward with their experiences, saying they thought no one else understood. They felt guilty for their feelings, as if they could force their way toward happiness for a day that should, in theory, be a joyous one.

And then there were the naysayers, those women who must take some satisfaction out of digging their heel into people already down: "I realize the blessing my child is, so I choose to celebrate the day." "I could have lost my baby, so of course I enjoy his birthday!" AND, my favorite, "According to the Bible, you can't question the will of God and be truly grateful at the same time. I am grateful for my daughter, so I don't dwell on how she got here."

I won't get into a religious debate, but I have a totally different take on it. I don't think that sadness and gratefulness are mutually exclusive. Besides, we're discussing feelings here. Someone can't help how she feels. You can choose what you do with your feelings, but you can't erase a feeling just because you don't like it. That's terrible advice! And acting superior to someone, especially in the Preemie/Special Needs community, because you aren't troubled by something that troubles others is problematic anyway. I kind of think it makes you a self-important, unsympathetic, a-hole, truth be known.

I've also noticed a difference between preemies born before 32 weeks and after. Here's where I get on my soap box about how all preemies aren't created equally. Some preemies skate out of the NICU in a few hours or days or weeks. Those parents are probably--but not always--less traumatized than say the families with babies hospitalized for months. So, I always want to congratulate those moms who say "I had a 34-weeker, and I'm fine with her birthday." Good for you, but I'm not at all okay with either of my babies' birth stories, thank-you-very-much.

So, now that I'm approaching my 4th birthday post-NICU with my first 2.5-lb baby, I can say this: It does get a little easier, but I'm still counting down the days. I'm still thinking about the girl I was four years ago. I'm thinking of that day and how it all went down. I'm remembering things said and things unsaid, things done and undone. It's all there, just as fresh as yesterday.

The biggest difference between J's first birthday and now? I don't feel the need to apologize for my feelings. Birthdays are hard for me, for all the reasons I've said, and maybe they'll always be hard for me. As the kids grow, I'll celebrate with the best of them. We'll have parties and we'll laugh and we'll eat cake. But, I'll never forget where I was on that day and what happened. After all, I am my children's mother. Even if no one else feels the pain of their early months, surely I do, and I'm entitled to it.

I accept the Preemie Birthday Blues for what it is: the anniversary of the beginning of a very difficult time, which also happened to coincide with the miracle of my baby's birth.

Tuesday, July 15, 2014


Having preemies affords some unique life experiences.

Like being friends with quadruplets.

I met my friend Not-Jane* in our Parents' Reaching Out meetings at the NICU. After J's birth, I was in desperate need of a support group. I was lost in the unknown, and the group of women I met in those meetings were the first people to validate my feelings. I am still in touch with a few of them.

I saw Not-Jane at the first meeting I attended. She was slim, and I had absolutely no clue she had multiples until she introduced herself. It turned out that J was only two days older than her four babies and that he was about a week more premature. I liked Not-Jane almost from the beginning, and I was curious about her experience of having four babies. After six weeks of passing each other in the NICU corridors, we became friends.

Not-Jane was a bright spot during long days, and I looked forward to daily check-ins with her. I remember huddling next to J's bassinet, lost in frustrating thoughts, and seeing her walk through the doorway. We shared information and a little NICU gossip, and some of my clouds began to lift. Her friendship provided a sense of normalcy in a situation so outside the norm.

After J was discharged, I visited her at the Ronald McDonald house until the last of her babies was transferred to the NICU in her hometown. Then, I drove an hour and a half from my house to hers about once a month. It was RSV season, so we didn't take our babies into public, for anything. Visiting her was respite from a very lonely winter.

I'll never forget watching her juggle those babies. She lined up Boppies and marked bottles and organized a system to meet her babies' needs. J was a very difficult baby during his first year, but seeing her conquer chaos was a reminder to me that my problems were temporary and could be overcome.

We celebrated surviving that winter with our first March of Dimes walk in April. We did it with other families we'd known in the NICU, and I was the only mother there who didn't have multiples. With us were a set of twins, triplets, and quads. I was amused at all the double-takes and questions, because I could watch from the sidelines. No one noticed my singleton.

Every public outing for Not-Jane came at a price. People asked the most intrusive questions, like whether she had used fertility treatments to get pregnant. (When did that become an acceptable question for strangers to ask other strangers?) During our trips to the zoo, streams of people would stop us and ask if her babies were quads, and most of the comments were repetitive: "I don't know how you do it!" and "I couldn't have four babies!" and "They're ALL yours?" Not-Jane had apparently heard the same things over and over at restaurants and grocery stores and everywhere in between because she appeared unfazed, but one time she leaned toward me and said, "What is my choice? I'm not going to stop going places because I have four babies." I always admired that attitude, that her kids shouldn't be punished because they were multiples, and as a result, her kids were excellent in public, even with people staring at them.

My favorite comment was when J was still a baby, and all five of our babies were lined in a row. Someone said, "You have FIVE BABIES!" Not-Jane replied, "Yes, we have quints," and we laughed. We often met for lunch in the city. One time we streamed into a restaurant with our toddlers, who still looked like babies, and we occupied every high chair the place owned. I looked around the table at all those kids in all those high chairs, and I heard Jane's voice saying, "We are the lucky ones." I wanted to proclaim to the rest of the diners in the restaurant our success story, all the statistics these children had beaten.

And then I added M to our preemie brood, and Not-Jane mourned the fact that I'd missed out on another full-term pregnancy. I didn't have to explain it. I knew she understood. She was one of the first people I told that I didn't feel like I was done having kids, even though I'm done having babies. I knew she would understand that too.

Over the last year, circumstances have made our get-togethers more rare, and now I have moved five hours away. But, Not-Jane held my babies before most of their families did. She was one of three people I texted that I was being hospitalized with preeclampsia with M. I remember her kids as they were in the NICU, what each one of them looked like, and I can tell you most of the challenges her kids have overcome.

Some people sweep into your life at just the right moment. They laugh with you, worry with you, and cry with you. And no matter where they go in life, you feel a connection. With so many little people to consider, we seldom see each other, and when we are together, our conversations are punctuated with the chatter of six other voices. But, I am always glad to see Not-Jane, and I can hardly remember all my NICU firsts without thinking of her.

*Clearly, Not-Jane is not her real name. I'd like to protect her privacy, since she doesn't go blogging all over the Internet like me. One of my favorite bloggers Beth Woolsey gives pseudonyms in this form, and it always makes me smile.

Thursday, July 10, 2014

The Worst Goodbye

I knew it would be hard. I said it would be hard. But, it wasn't hard. It was excruciating.

Leaving the kids' school for the last time was gut-wrenching, and I'm not even exactly sure why.

I know I'm terrible at goodbyes. I hate watching people I love walk out of my life. But, I've said goodbye to plenty of people I love. I've left places I love. I've known I was closing chapters in my life before, but nothing compares to this goodbye.

I was completely unprepared for how it hurt me.

That last day, I watched from the booth on the other side of the one-way mirror for the last time, knowing that I might never again observe my kids in such a way. There is something amazing about witnessing your kids as they are when you aren't visible, when they are standing on their own two feet without your presence to guide them.

That last day, I collected their art projects and extra changes of clothes.

I teared up as I individually thanked every, single person I saw, because they all are part of my children's successes.

Their faces were sad too, because J had been at the school for longer than probably any other child. The age limit increased at exactly the time he would have aged out, so instead of getting nearly two years there, he had three.

I could see how much J meant to all of his teachers. That child isn't the most exuberant one or the funniest or the silliest. But, he is solid and reliable and thoughtful and kind. His loyalty is rewarded by a small circle of people who love him fiercely. And maybe that's what hurt so much about leaving. I was prepared for saying goodbye to people whom I respect, people who devote their lives to the service of helping children. I knew that leaving a place where we were all so comfortable would sting. But, we were leaving people who knew my children better than most. The purpose of coming home was to change that, to give my kids a chance to grow up around family and dear friends. But, in their early years, the dearest friends my children knew were their therapists and teachers.

Every teacher who said goodbye to J had tears in her eyes. They rubbed his head for the last time and patted his back and sent him off into the world a boy instead of a baby.

One of J's teachers even walked us out into the parking lot, as if she couldn't bring herself to say goodbye. She watched us walk away. I was so touched, but I stitched my face into a smile for the kids as I buckled them into their carseats. I managed a cheerful "Say goodbye to your school!" as we drove away.

And then I silently cried all the way home.

Wednesday, July 9, 2014

I Came Home

I went to see a nurse practitioner yesterday because I probably have a minor hernia because I might have picked up a large box while moving. Thanks to two emergency C-sections and three incisions, my abs aren't what they once were.

Anyway, I hadn't seen the nurse practitioner in seven years, since we last lived here. She walked in the door, looking down at her chart, and then her green eyes met mine. I was in the process of babbling that she probably didn't remember me, and she interrupted me with, "Yes! Yes, I do remember you. And I always wondered what happened to you." I briefed her on grad school and why I left in the first place, and then she asked, "Do you have babies?!"

Why yes, that's an interesting topic. So, I told her about having preemies, and then a totally foreign thing happened. She told me her little girl is now a teenager who is babysitting, and just like that I have my nurse practitioner's cell number and her daughter as a third babysitter. We just went for six months with no babysitter and no backup plan and no date nights, and without even trying, I have a list of people to call in a pinch.

I've spent the last four years with kids in school and therapy in a suburb in one direction and babies in a hospital in the city. And I lived in between, in a place where I knew almost no one. When I dashed to the grocery store, I knew I wouldn't see a friendly face. One time I was surprised to run into my neighbor. I wanted to exclaim, "What are YOU doing here?!" until I realized that sounded ridiculous because the grocery store is five minutes from our neighborhood.

Having kids puts you in all sorts of pickles. You need to take one to the doctor--or even worse, the ER--but you don't want to take your other child. You need to be in two places at once. You lock yourself out of the house, and you're stuck outside with kids and no one to call. We're just not meant to do it all alone, and for the last four years, I've had wonderful support for the kids but not really for me.

I feel such relief not to go it alone any more.

As I was leaving the nurse practitioner's office, she gave me a big hug and said, "I'm so glad you're back."

That's why I came home.

Monday, July 7, 2014

Journaling in the NICU

I've been inundated with the exhaustion that only moving out of state with two little kids can provide, so I haven't been writing. But, my most recent piece "The Power Journaling in the NICU Can Give You" appeared today on Preemie Babies 101. It's about my experiences journaling in the NICU. Thanks!

Wednesday, June 18, 2014

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.

Friday, June 13, 2014

Modern Fatherhood

I said something to my husband last week that I almost immediately regretted. And the more I thought about it, the more stupid the sentiment behind it was.

He was frustrated with the kids, and I was frustrated with the kids and with him. I spouted off, "I don't think you're capable of taking care of both of the kids by yourself." (Is there any wonder where M gets all her attitude?)

Nope, not my finest moment. I apologized, and he graciously accepted. But, the statement made me think about the man I chose to be the father of my children and of our roles as parents. For now, I work inside the home, and my husband works outside the home. What I was taking for granted was that he defers to me on the day-to-day raising of the kids not because he's inept but because he respects me. He knows that I am the one talking to their teachers and scheduling therapy and putting them down for naps. I spend many hours a week alone with the kids, so I do know their always changing patterns and tendencies. But, his deference should never be mistaken for an inability to care for the kids or for his lack of involvement.

After all, he is the person who was much better than I was at changing palm-sized diapers with his pinkies. He was fearless in the NICU with those tiny babies, and that is the man I want my children to emulate.

This week, I've seen so much discussion on TV and online about modern fatherhood and how involved so many dads are. My own father has resented the image of dads on television shows and movies. He was never bumbling, and he was always present in our lives when we were little. He is still a guiding force for his adult children. Because of his example, a deal breaker for me in finding a partner was a man who didn't want children or who wasn't interested in being an equal parent. In a country where men have little to no guaranteed paternity leave, where they are disparaged for staying home with their children, and where changing tables are almost exclusively in female restrooms as if fathers don't change diapers… I should know better than to fall into a stereotype that demeans both my own father and my children's father.

So, I made a promise to myself. I will not say disparaging things about my husband in front of the kids, especially when it comes to his role as their father, because I want them to see parenting as a partnership and to have strong relationships with both of us.

(And as evidence of his capability as a father, my husband, bless him, is putting the kids to bed while I write this post.)

So, as Father's Day approaches, I just want to add my voice to the chorus of people praising involved fathers. Our society often portrays dads as bumbling when in reality so many fathers are excellent parents. And my husband happens to be one of them.

Wednesday, June 11, 2014

Writing A Letter, And Other Odds And Ends

I disappeared from the blog this week to take care of sick kids. Poor M has had her first serious illness--well, really it was a combination of three minor illnesses that sent her into a spiral. She had hand, foot, and mouth disease, which is so common among 18-month-olds, on top of an upper respiratory viral infection and an ear infection. Her body just freaked out on Sunday morning, and she had a febrile seizure and turned blue before we could get her to the ER. Honestly, I'm still struggling with the febrile seizure--even though I've been assured that the seizures themselves aren't life-threatening--and I can't even write about all that happened yet.

But, M is feeling better, which always makes Mama feel better!

I'm also trying to get our ducks in a row for our move at the end of the month. Though we've moved plenty of times, this is our first move with children, and I dread it. I mostly hate taking the kids away from their school and their friends, and I know it will be a challenge to keep things relatively normal for them during the actual move. I try to remind myself how flexible kids are and that this will be a good thing for our family.

My writing project for this week is to compose a letter to J for his 4th birthday, which is in a month. How did this idea just now dawn on me? I think I'll make it a tradition for the kids, but I really wish I had started it years ago. The upside to being the firstborn is that you get all the firsts and all the pictures. The downside: your parents learn as they go with you!

My letter idea is that it's a way to reflect on how the kids have changed in a year, what they love at a specific age, and all the funny things they say and do. I'm behind on editing photos, I gave up on baby books (I guess I understand why my mom left my baby book incomplete), and I should have finished J's scrapbook nearly three years ago. But, one thing I know I can do? I can write a letter.

Thursday, June 5, 2014

Why Women Leave

Me, when I used to be a teacher
Last year, I read Lean In. I am a mother with a Ph.D., so a discussion about women in the workplace touches on sensitive issues for me. I keenly feel the decimation of my career--or, on an optimistic day, the delay of reaching my professional goals--so I don't really need anyone to remind me that I took my nine years of higher education with me when I left the workforce. And I agree that it is a terrible shame.

But, I always feel that the discussion about women leaving the workplace occurs in a vacuum. It doesn't take into account real life. Yes, in theory, I would have a tenure-track job, and I would be awesome at it. In my time at home, I'd also be a wonderful mother, wife, daughter, sister, and friend. And then I'd do some community service for good measure. In theory, my kids would go to an affordable, safe, enriching full-time preschool, and I would have no guilt about leaving them there. And in theory, I would make at least half as much as my husband, and his job would come with the flexibility to pitch in on all the extras having kids require.

That is not reality.

In her book, Sheryl Sandberg acknowledges that life's demands are complicated. But, I always feel that the conversation is one-dimensional. It lacks the curveballs that life throws us, and we all, men and women, have them. Nothing goes just as planned, and for many of us, we find ourselves on journeys that carry us away from traditional employment. I always want to know when the discussion about women deserting the workplace includes women who are battling cancer. Or caretakers of elderly parents. Or military wives whose husbands move every year, limiting their ability to find employment. Or mothers of sick kids. Where do we fit? Because women leave the workforce for all sorts of reasons, and it is simplistic to discuss us as one monolithic mass of disappointment.

My first love before I met my husband and before I had my babies was reading. I devoured books as a child. I grew into a grammar nerd, and by far the best hourly job I ever held was as a grammar editor when I was just 18 years old. I always admired teachers and how honorable the intention of teaching is. A great teacher really can change a person's life. Both my parents were teachers, at different points in their professional lives, and I think in my heart of hearts I always believed I would combine my three loves--learning, writing, and teaching--into a career. And I did, for a short time. I was going to be a professor, before I had preemies.

I never made a conscious decision to leave, and I have never made peace with the fact that I am gone. Never. So, to the woman at the academic conference who said ugly words of judgment and to the people in the grocery store who see me as a sweet, young, little mama--I am more than either of those characterizations.

Women like me may yet return to the workforce, but in the meantime, do you know what we're doing? We're giving back to the world around us. We're getting well and taking care of our parents and holding down the fort and watching over babies in the hospital. These jobs are not easy, and the pay does not come in the form of dollars. But, is everything in this world about money? Sometimes, the hardest jobs are the ones with no paycheck and no vacation days.

I was handed a set of circumstances, and I would not exchange them for someone else's. No matter how discouraged I may get, I am never sorry for the choices I've made. If I had it to do all over again, I would choose those two tiny babies: the ones who didn't ask to be born and who suffered greatly in their first days and weeks.

Lean in? What I want to know is: when I can lean in, will the workforce accept me? Will it accept all of us who left for our own very good reasons? Or will we be asked what we've been doing for the last four years because a resume can't define where we've been and why we left?

We still have prejudices in this country about what constitutes work and what makes a good employee, and I think any discussion about leaning in should also include the issues of affordable childcare, equal pay for equal work, paid leave, part-time employment, and flexible hours. We could do more as a country to retain good employees. And we could keep more women in the workforce. But, first we'd have to address why women leave.

And that answer is complicated.

Tuesday, June 3, 2014

It's Time To Move On

I think we sold our house today.

I won't trust that it's sold until we have the check in our hand, but in the short term, it really makes no difference. It's now time to begin rapidly packing up, shutting down this life we've made here. It's time to put all our treasures in boxes and pull up stakes and move to a place that I hope will become a final destination, the place my children will call home.

I hate moving, and it's always sad. This is our fifth out-of-state move in ten years. But, this move is different, and what is painful about this move is so different. It's not the friends I've made, because I haven't made many. It's not the people I see on a daily basis, because I don't see many. I'm not leaving a job behind or a school. The most important people in my daily life will all be going with me.

I am most sad to leave my kids' preschool. The teachers there have been fundamental in shaping my kids, in giving them confidence as well as knowledge. They have pushed my babies to high standards, encouraging them to achieve new goals. They have loved my kids, cherished them in a way I never could have expected. I was so worried to leave J that first day at school when he was a 16-month-old baby who couldn't crawl or walk or stand on his own. Literally, he couldn't stand on his own two feet, and now? He runs and talks and laughs. He has a pack of boys he plays with. He is independent and confident and more outspoken than I could have imagined two years ago when he wasn't speaking at all. The transformation in just the last six months has been phenomenal.

I am deeply saddened that M won't have the same experience. She has only had four months at the school, but she already has such a joy and exuberance for learning. Her teachers thrill her. She watches for their reactions, and she soaks up their attention. M looks straight into the face of each little friend in her class with such excitement, as if they're all her new best friends. I have no doubt she would love for me to just leave her at school everyday. And I would, if I could.

And our physical therapist. Our pt. Oh, how will I leave her? These last 3.5 years, she has known both my kids better than most of the people in their lives. She knows their personalities. She has been aware of the big and little things happening in our lives. She is one of the only friends I have here, one of the few women I see on a regular basis. During this time of such loneliness for me, she has been an island of reassurance and kindness. I don't have to explain what has been hard about this life to her, because she already knows. But, she's also a steady reminder that other families have it so much worse. She gives me the freedom to fret and question and wonder, but she also has great suggestions and advice just when I need them the most.

All the people I am dreading hugging goodbye are related to this difficult and beautiful journey we've been on. I swear everything about this place from the time I arrived five months pregnant and only six weeks away from delivering J until this very moment has been about having preemies. This entire chapter of my life's book is about the magic of these kids.

And it doesn't matter how ready you are to start writing a new chapter, closing the book on a place is difficult. Especially when it's the place where you had your two tiny babies.

Monday, May 26, 2014

All Preemies Aren't Created Equally

M, a few days old
In the NICU, everything is relative.

The term preemie can mean a multitude of things: everything from a baby born at 36 weeks and 6 days gestation who weighs 7 lbs and never spends a night in the NICU to a baby born at 22 weeks who weighs 14 oz and spends 200 days in the hospital.

Sometimes, strangers tell me they know a preemie who was the tiniest baby they've ever seen--their "tiniest" baby was my two-month-old. M weighed exactly 5 lbs when she left the hospital at 60 days old. At her smallest, she weighed 1 lb. 15 oz.

In fact, I was our family's preemie until my kids showed up. I weighed 5 lbs 6 oz at birth and was born 4 weeks early. Everyone talked about how tiny I was, how my head fit in the palm of my dad's hand. Little did we all know that a whole baby can fit in the palm of a hand!

I remember when J was first born, I wanted desperately to know what his survival odds were, but I was too terrified to ask anyone. The doctors and nurses didn't like discussing a baby's prognosis because no one really knows. A 23-weeker can surprise you by coming home with no oxygen six weeks before her due date, and a 32-weeker can linger long after everyone thought she would go home. I knew a baby with a brain bleed whose doctor told his mother, as a way of explaining his brain damage, that he would play on the football team but he would not be the captain. Now, at 4-years-old he's Leader of the Pack, well above his developmental goals and smart as a whip.

Taking J's temperature when he was about a week old.
While J's odds of survival were around 80%, he had a 66% chance of having a disability at age 3; he has no disability. He was born too fast for steroid shots to develop his lungs; yet, he was only on the ventilator for a few days. He didn't catch his first cold until he was 17 months old, and his first serious illness was this spring as a 3.5-year-old.

How he did this well remains mostly a mystery to me. He was healthy in the womb, he was in the 70th percentile when he was born, and my obgyn was so proud of the fact that he was intubated immediately after birth so that he never went without oxygen. He responded well to the surfactant given to him after birth that helped his lungs inflate properly, which meant less time on the ventilator. Less time on the ventilator reduced the scarring in his lungs, which impacts lifelong respiratory health. One bit of good fortune translated into more good fortune, but that addition doesn't always work. Sometimes, it just seems that there's no rhyme or reason to the outcomes.

J is not the norm for a 26-weeker. In fact, our pediatrician loves to show him off to visitors in her office, always asking my permission to share his story. J shows us what is possible with preemies. A few times this year, I've seen the cost of saving preemies thrown around with so little consideration for what those numbers mean. Sure my children together racked up over $1 million in hospital care, but their excellent care at birth has hopefully paved the way for decades of healthy living in which they will need little healthcare. So what if it is expensive to save babies? I hate to see our priorities when we as a society say we are unable or unwilling to give babies a chance at life.

Much has changed in NICUs in the last 30 years that has expanded the possibilities for preemies. More and more kids like J go on to live relatively normal lives thanks to all the advances. But, what is surprising is that there is still so much disparity from one hospital to the next. Within my own town, two hospitals will attempt to resuscitate 22-weekers, while another one won't intervene until the baby is at least 24 weeks gestation. Sometimes, a baby's chances depend on the medical care available in those first critical minutes. And the disparity doesn't stop there. The quality of the doctors, nurses, specialists, and therapists can vary widely. Techniques common in one hospital are rare in another one, and conveniences such as bedside breast pumps might seem like perks when really they can alter the health of a baby at a time in their lives when breast milk is medicine.

So, my 26-weeker isn't someone else's 26-weeker. One preemie's path in no way defines the journey for other babies.

I'll admit that I am a preemie snob. Please forgive me. It's not just my own children but all the other babies I've met along the way who give me pause when a grandmother brags about her miracle born five weeks early. I don't doubt that baby is a miracle--all babies are treasures of good fortune--and I don't doubt that any hour with a baby in the NICU is a miserable one. It's just that it's challenging for All the Preemie Mamas to keep our mouths shut. We want to brag about the miracles we've seen, the things that shouldn't have happened, all the dozens and dozens of babies we watched work their way through the NICU who wouldn't have lived more than a few hours or days just three decades ago. Their accomplishments shouldn't be diminished by the preemie down the street who weighed 4.5 lbs at birth, was breathing on his own at 33 weeks, and spent only two weeks in the hospital. That story is amazing, but goodness could I tell you some humdingers.

Like the barely 24-week twins whose mother was prepared to lie about their gestation to make sure they were resuscitated at birth. Or the 26-weeker who came off oxygen at age 10. Or the set of quads whose mother was encouraged to abort two of them to increase their survival odds. The stories go on and on and on.

Preemie stories are just as unique as the babies who inhabit them, each one of them different and special.

Seriously, I should write a book...

Friday, May 23, 2014

The Preemie Lifestyle

There is a myth that when you bring your baby home you put the NICU journey behind you.

It's what we all want to believe when we're struggling through the emotions of having a hospitalized baby. We keep focused on that beautiful day when we'll peel out of the hospital parking lot for the very last time with the baby in tow. And it's a good thing that we have a goal as we trudge in and out of days in the NICU.

But, the crashing of fantasy and reality can be brutal.

After a couple of months of struggling through sleepless nights, a punishing pumping/breastfeeding schedule, and what I call the Two-Month Screaming, I began to fall into a depression. We were under our winter quarantine, I felt isolated, and the days were long and taxing.

I'll admit that I wondered to myself, "What have I done?"

Parenting is rarely what you imagine, envision, or daydream. It is both better and worse. But, when you start out with a baby in the NICU, you drain so much of your emotional reserves in those early days. I found that I had little left for the journey after the NICU.

I came to a realization when J was six months old and he was evaluated for therapy. A social worker had mentioned all the services available for preemies as we were leaving the NICU, but I had no idea the kind of delays J would have. He wasn't even rolling over at six months old. In fact, he didn't roll over until he was closer to 9 months old and had spent three months in physical therapy.

It began to dawn on me that leaving the NICU wasn't the destination or the endpoint. Having a preemie was a lifestyle. It involved Synagis shots and physical therapy and teachers who specialized in developmental delays. I wiped down surfaces with the zeal of a woman who feared one illness might kill her baby. Our entire family was vaccinated. My career disappeared into the background indefinitely. Getting J healthy was my singular focus. I felt that I owed it to him to give him as good of a start as I could, especially because I had evicted him from my body at 26 weeks.

Once I had M early too, this way of life really did become normal. I talk regularly with other preemie parents. I blog about preemie issues. I strategize on ways to help M catch up with her peers. Not a day goes by that I don't think about where we've been. Raising preemies is a lifestyle, at least while they're small children and maybe forever. The jury is out on where this journey goes, but for now it is all-consuming.

For a long time, I lived from one developmental goal to the next. I always focused on where we were going. But, sometimes we just need to slow down and appreciate where we are.

These children are hilarious and bright and energetic and enthusiastic. And so resilient. They could be poster children for all that is possible.

Would I see them this way if I hadn't witnessed their beginning? Holding your baby in the palm of your hand changes you. Watching your two-pound baby breathe all on her own challenges everything you've ever believed. I've written before about the magic of having preemies, and it is so true. For all the difficulties, some of our moments in the NICU could take your breath away with their beauty.

Victories are sweeter, because they are so hard-fought. Walking isn't just putting a few wobbly steps together; it's the pinnacle of an uphill climb that began at birth, it's the achievement built upon months and months of therapy. So what if everything takes longer, if it all seems so challenging, if sometimes I am so exhausted at trying to be a great mother? They are worth it all.

I didn't choose the Preemie Lifestyle; it chose me. And I wouldn't trade it.

Thursday, May 15, 2014

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.

Wednesday, May 14, 2014

Brake Lights And Bumpers

This is my first time selling a house. It will be our fifth out-of-state move but our first with kids. I thought I was managing the stress.

Last week, I was talking to J in the car, and I thought I had waited until the garage door opened. But, when the garage door reached out and bit the back of my car, I realized that it must not have opened all the way before I started backing up. My husband fixed the garage door, but we'll need a new brake light.

The very next day I locked myself out of the house. When my husband came home early from work to open the door, he found my keys. In the garage. So, really I wasn't locked out. And he didn't need to come home early.

On Monday, I started the week by backing into a car at J's school. In my defense, I was parked on a hill, and anyone who drives an SUV or a van knows that there's a huge blind spot behind the bumper. A car must have pulled right behind me just before I started checking my mirrors, and I never saw the car. I guess I'll try not to choke on the $600 for a repainted bumper.

I'm on a roll. And not in a good way.

So, I decided to get back on an exercise regime. I clearly need a better way to manage my stress, and walking is much cheaper than brake lights and bumpers.

Wednesday, May 7, 2014

Mama Bear

One evening, about a month into J’s NICU stay, my cell phone rang, just as my husband and I were walking into our house. We had left the NICU about an hour earlier, and then we’d sat in rush-hour traffic. So, I was just hanging my purse on a chair when I heard my cell phone.

I saw that someone from the NICU was calling, and my stomach did a free fall. We rarely heard from the NICU; they called maybe four or five times over the 91 days J was hospitalized. I was generally able to repress the fear that when the phone rang it would be the NICU telling us something was wrong, but I still jumped every time I heard my phone ring. And now it really was the NICU on the phone.

When I answered, it was a nurse calling (oh heavens), and though blood was rushing to my head, I managed to hear her say that J was fine but that the cardiologist wanted to speak with us (oh heavens).

We had been told weeks earlier that J had a heart murmur but that it wasn’t the kind most preemies have and that heart surgery would be unlikely. That week a nurse had informed us that a pediatric cardiologist was scheduled to see J again, but the NICU rarely communicated any specifics about specialists—they probably weren’t always entirely sure when a specialist would make rounds.

So, on that evening, not only was I surprised to get a phone call from the NICU, I was completely unprepared for any news from a cardiologist. The cardiologist on the phone was not the kind, quiet man I had seen passing through the NICU. It was a woman I’d never met, and she had such a thick accent that I had a difficult time understanding her.

She told me that J had pulmonary stenosis, which meant that one of the arteries into his heart was too narrow. It was causing a pooling of blood in his heart, which accounted for his heart murmur.

And that is about all the information I got.

That’s it.

I had what felt like hundreds of questions hit me like sand in a dust storm. Would he need surgery? Would he live a normal life? Could he be active? Would this condition worsen?

I kept thinking that we’d weathered so many concerns for his health in the early days. He had proved to be so healthy for a baby born 14 weeks early. And now this.

When I began to ask some of my questions, the doctor cut me off. I was confused. Why would someone call and give me a diagnosis and then refuse to provide any information about it?

So, I asked if her written report would be available in J’s hospital records, so that I could read it for myself.

J’s medical records were a sore spot for my husband and me. Parents were not supposed to open the binder of medical records that sat openly on the table next to our baby’s bedside. Any Tom, Dick, or Harry from the hospital could pop by and open it up to see any number of private facts, but J’s own parents—and legal guardians—were supposed to ask permission and then wait for a doctor to watch us while we opened the binder, just in case we had questions. Some nurses were rude and vigilant in their enforcement, while others encouraged us to access the information in it at our whim, which completely confused us in our early NICU days. We were never formally told of the policy, only chastised when we failed to understand the Golden Rule: do not open the binder. When we realized the extent of the dysfunction over medical records, it became an undercurrent of irritation for my husband and me. I know that J’s medical records legally belong to me. I have access to them whenever and wherever I choose, but we walked a fine line. I felt that ruffling feathers at the NICU and having a knock-down drag-out over medical records was an unnecessary distraction from J’s medical care—unless it became a crucial fight. So, for the most part, my husband and I just waited until no one was watching, and then we opened the binder to check for the most mundane facts, like when J last pooped. “The Chart-checkers” is what we named ourselves.

Anyway, I knew the cardiologist would write a report, and since she was less than forthcoming, I thought I’d just go to the trouble of requesting permission from a NICU doctor to read the report.

But, what she said stopped me. Cold. Before I could say another word.

“I’ll write a report, but you won’t understand it,” the cardiologist said, with an unexpected harshness.

Not: you might not understand it. Not: it will be hard to understand. Nope, my incompetence, it seemed, was a sure thing

For a second, I thought maybe I had heard her wrong. My brain kept trying to process her response, and then when it finally did, my blood pressure shot off like a cannon. This time it wasn’t swirling blood in my head and a sinking stomach. I just felt fire. A raging fire inside my head.

First of all, I’m not stupid. I know I’m not perfect, but I’m darn sure about one thing: I am not stupid. I not only deserved information on my baby’s diagnosis, I needed information, because I would be the one taking him to follow-up cardiology appointments. It was my legal right to see the report, regardless of whether someone thought I’d understand it. And, um, I can read. At that point, I had almost earned my Ph.D., which would certainly qualify me to read. I was plenty capable of asking for clarification for something I didn’t understand, and, seeing as how I wasn’t supposed to read any medical records without supervision, I could ask the doctor or nurse standing over my shoulder for help.

I could feel myself coming unglued. All the emotions I had bottled. All of the frustration and sadness that I had shoved into the dark recesses of my brain. It was all escaping and wreaking havoc on what little shred of patience I had left for a pediatric cardiologist who had been practicing medicine just long enough to forget how powerful her words were.

I’ll admit that I’m pretty sure I screamed into the phone, “You don’t think I will understand it? I won’t understand! I can ask if I have a QUESTION!” And then I pulled the phone away from my face, as if I could look her in her emotionless eyes. I shoved the phone back against my ear and yelled, “I CANNOT talk to you. You’ll have to talk to my husband.”

She probably had no idea why I was so angry.

It was the best I could do. I had completely flipped my top, and I knew there was no going back. Maybe in person a look of kindness from her would have slowed my rage, but over the phone, I could see no sympathy, and all I could hear was her stunned silence. I knew that I was so offended and so hurt that if I kept speaking with her, I would just scream obscenities, which would do nothing to help J. So, I threw the phone at my husband, and I told him, through gritted teeth and plenty loud enough for the emotionally-removed pediatric cardiologist, “She won’t answer my questions, and she doesn’t think that I’ll understand.”

My husband, while furious on my behalf, was patient and deferential. He was able to extract a few more answers from her. Just a few.

The next day I opened the medical binder, in front of God and everybody, and I plunked myself down in the chair next to J’s bedside to read the report. I saw a nurse or two look askance at me, but this time I wasn’t sorry. I wasn’t going to wait a few hours for a doctor to find time to be present. One nurse passed by and kindly asked if she could help, which was, I’m sure, her pleasant way of reminding me that I was supposed to leave the binder closed. I explained that we wanted more information about my son’s diagnosis and that the doctor was less than forthcoming, so I was reading her written report. The nurse seemed to understand, and she left me alone without reprimanding me.

The report was simple. It listed J’s condition and explained that it had worsened over his short lifetime. It recommended a cardiologist see him again before he was discharged and that he be followed after he left the NICU. He was in no immediate danger, but it was cause for concern.

I was relieved. Just seeing the explanation in black and white helped fill in the many gaps, and I had a better understanding of J’s condition and what questions I needed to ask his doctors and nurses.

And I understood the report perfectly. It seems that I do, in fact, know how to read.

We never spoke to that pediatric cardiologist again. From then on, we saw her partner, the kind, quiet man I had seen in the NICU. He didn’t say much, but he always smiled. And he always asked if I had any questions.

I think one of the hardest parts of having a sick child is being an advocate. It can be gut-wrenching, exhausting, and frustrating. But, looking back I'm not sorry for any of the times I was Mama Bear. Not one. I'm only sorry for the exact opposite, the times when I wasn't Mama Bear enough. Which is another story for another day...

Monday, May 5, 2014

Waiting For the Shoe To Drop

A month ago, J was as sick as he's ever been since his discharge from the NICU. For a 26-weeker, he has always been amazingly healthy, even in the NICU. We have had plenty of frustrations and roadblocks, but he has never been truly ill.

In fact, he went an entire year without a sick visit to his pediatrician.

But, this year he had one cold after another cold after an ear infection. All winter long. I guess I shouldn't be surprised. He attends school for twice as many hours a week as he did last winter, and now he has a younger sister who shares germs with him. The cold and flu season was also much longer because of the colder winter.

So, it was nothing new to have two kids with ear infections in late March. I took them to the doctor on a Tuesday afternoon, and both kids needed antibiotics. M started looking better almost immediately, but J became listless on Wednesday, which has never happened before. He rarely runs a fever, he has never lost his appetite, and sitting on the couch all day is the exact opposite of the kind of child he is. But, I really became alarmed on Wednesday night when he had trouble sleeping, so on Thursday morning, I took him back to the doctor. I was positive that something was wrong.

And I was right.

Apparently, the antibiotic was working on the bacteria in his ears, which looked much better, but while his body was busy with that infection, another bacteria attacked his lungs. Within 36 hours of seeing a doctor for ear infections, he had developed a completely separate case of pneumonia.

So, the doctor gave him a shot of Rocephin, a high-powered injectable antibiotic, and she changed his prescription to a stronger oral antibiotic.

But, he didn't get better. In fact, all of Thursday he continued to go downhill. I called Friday morning and made the first available doctor's appointment, which, of course because I was in a panic, was at 10:45 a.m. J's fever was nearly uncontrollable, and his skin was so pale it was nearly translucent. His lips weren't blue--a sign of danger I learned in the NICU--but he was wheezing. So, I called the doctor's office back and told them that I was bringing him right then.

The doctor saw him immediately, and she gave him another Rocephin injection, a dose of steroids, and two breathing treatments.

That night, I began to see him turning a corner.

I learned at a follow-up appointment the next week that his case of pneumonia was aggressive and that if he hadn't responded that day to all the medicines, she would have hospitalized him.

What amazed me was not how vicious pneumonia can be, because I was hospitalized for it twice as a kid. What shocked me was how fast J went from being mildly sick to dangerously sick. I asked if his prematurity had anything to do with the rapid progression of the pneumonia, and the doctor told me no. He's never showed signs of lung damage or asthma before (amazingly), and now that he's nearly four, many of his risk factors for illnesses are no different than other children.

Whatever made J so sick was just an awful virus or bacteria. J and M had mirror illnesses, but she had her last Synagis shot the day I took the kids to the doctor for ear infections. She improved immediately, so maybe the Synagis shot boosted her immune system. Or maybe it was just a fluke that J caught something else.

I thought I was managing the stress of having a sick child, but I'll admit it: I almost had a nervous breakdown when the nurse put the oxygen mask on J for his first breathing treatment. It was another of those NICU flashbacks! I was transported back to that time when he was so tiny and his breathing was so labored and I couldn't see his face for all the tubes. But, what kept me from teetering over the edge was J's need for me. I didn't want him to know that his illness was scary.

When we left the NICU with J, I always felt like I was waiting for the other shoe to drop. It was inevitable. All of our good fortune would catch up with us. I just knew it. A baby can't be born as early as J under such emergency circumstances and have no complications. It just seems impossible to me.

Even more miraculous is that when the other shoe did drop and J had a terrible case of pneumonia, he wasn't a baby or even a toddler. It wasn't the result of RSV. And the doctor didn't treat him any differently because he was a preemie. He was just a kid who got really sick.

Do you know what that means to me?

Wednesday, April 30, 2014

The Spot I Will Miss

The backyard before we made it our own.

I had a dream last night that we sold our house. I must be practical even in my subconscious, because I worked through the entire negotiation phase in my sleep. And when we were done, I was so happy. I didn’t feel any sadness about leaving this house at all.

When we put our house on the market a few weeks ago, it was with great relief. After months of weekend projects and nonstop cleaning, I couldn’t wait to be done with it all.

With each showing, I ask myself if I’m really ready to leave this place.

This was our first home to own. When we bought it four years ago, I walked around the perimeter, examining each brick, thinking to myself: I own every brick on this house.

When we bought this house, I was newly pregnant. Everything was fresh and exciting. The world sparkled, and those four walls housed so many hopes for our future.

Nothing turned out as I had planned it.

I discovered the house was fine, but I desperately wanted to relocate it. We had moved three times before, and never had I disliked a town like this one. I felt stuck before I even knew how stuck we were, because six weeks after we moved, we had J 14 weeks early. Now, that is stuck. When you have a baby in the hospital, then you know what stuck is.

Our house was both a refuge and a prison, depending on the moment. I both loved and hated it. It was solid and well-built. We made it our own. We made it a home, but it was always temporary. And we were always looking toward the future, when we wouldn’t need downtown NICUs and high-risk doctors and specialists, when we could cut our ties with this place.

After we listed it, I walked around the house and took notice of all we have done to it. Our touches are in every room. I am so sentimental, and this is the home where I brought my NICU babies. So, I was surprised to discover that everything that matters really can be boxed up and taken to our new life. The house has so much baggage for me that it won’t be a bad thing to start over again, in a place where the world sparkles.

I commented to my husband that for every good memory in this house, I have a sad one.

But, there is one spot that I will miss, a place in the middle of the deck my husband built. It is where J took his first steps. Where I sat, pregnant with M, and watched J play in the backyard. Where I pushed babies in a swing. Where we dined outside at our travertine table with company. Where my husband and I listened to the chatter of birds as we discussed our future. It is the only part of this house that is all joy and no sadness.

There it is, the one spot I will miss.

The winter before the deck was finished 

A tired mama sunning with her baby

I looked out the back door one morning to see this...

J and his kitten

I was pregnant with M when this photo was taken.

The wisteria in the spring 

Lunch with NICU friends