Thursday, February 27, 2014

The Importance of Preschool for Preemies

I have become such an advocate for preschool education. In fact, my own personal rule is that I want my kids in part-time preschool as early as possible. I stress that this is a philosophy that we've adopted in our own home, and I would never apply it across the board.

What would we have decided if our kids weren't preemies? I'll never know. Would I have been working full-time? Probably, which would have meant my kids would have been in daycare. But, my personal decision when J was a baby was that I didn't want a babysitter overseeing his therapy, and I was at an in-between place in my career anyway. I couldn't envision seeking full-time employment in the middle of such a difficult time for our family.

Those were our decisions for our family and by no means would I apply what worked for us to other families.

But, I will say this: As babies and small children, preemies are different. They often require trips to specialists, or at least extra visits to pediatricians. They need special protection during cold and flu season, especially against RSV. They often need therapy--and sometimes lots of therapy--to help with eating, walking, and all the other things full-term babies seem to grasp on their own. With J, physical and speech therapy made a huge difference, and I've written about how indebted I feel to his therapists. But, another area that I feel has been a key to his success has been preschool.

We've been lucky enough to have access to a preschool that specializes in developmental delays. It integrates children at or above their ages in terms of development with those who are delayed for a variety of reasons. Interaction with other children does wonders for preemies, especially when the preemie is an only child, as J was. He was so cautious and reserved that he needed to see what other children his age were doing to encourage him to do more. And playing on a playground or seeing kids in a playgroup didn't cut it. He needed the academic environment, the structure, and the proven methods that a preschool can provide.

I could write volumes about our experience with his preschool. They have taken a baby who couldn't walk or talk and encouraged him to be the bright, curious, and energetic boy who was hiding just beneath the surface. J's delays confined him to a body that didn't do so much of what he wanted, and all of the hours at school helped free him. It has been a magical transformation to witness.

And it has been eye-opening for me. I've had people tell me that developmental delays aren't a big deal, that kids will catch up, and while that is probably true, a small child's brain is phenomenally elastic. Studies show that the more a child can do in those first few years, the better that child will do long-term. So, just because many preemies in the past caught up by age 5 or 6, when they were entering kindergarten, doesn't mean that I should be relaxed about helping my kids reach their full potential as early as possible. And the truth is that many of our preemies now have few comparisons. The development of surfactant therapy in 1990 has contributed to the increased health of the tiniest preemies. I doubt J would have lived without it, and he certainly wouldn't be as healthy. Our babies are living in the first decades of increased health for preemies, and along with that health comes increased possibilities.

J and M have received home therapy where someone trained in childhood development encouraged me to try different techniques to help my babies. It was home-based and focused specifically on the needs of my children. Sometimes it was helpful, and sometimes it really wasn't helpful at all. My children do not perform for me the way they do for their teachers and their peers, and I would never claim to be trained or skilled in childhood development the way teachers and therapists are. Not every preemie has access to the kind of resources from which we've benefitted. I know we are so lucky. But, I do think that any good preschool could help preemies who meet minimum requirements for enrollment, such as walking or being potty trained, and I think it's wonderful for preemies to get exposure to other children as soon as they are healthy enough.

All of this is on my mind because M just started attending J's school last week. She is 13 months old now, and I couldn't be more thrilled about her opportunity to learn and grow at the place that has done so much for J. (As a side note, neither of my very independent children cared less when I dropped them off for their first days at school. I thought M might look a little sad, since she is more attached to me than J was, but I was totally wrong. She didn't even give me a second glance!)

From my experience, little kids need interaction with other little kids, and not just in playgroups. But, I've said it before and I'm sure I'll say it many times again: I don't know anything about raising full-term babies. Preemies are all I know!

Thursday, February 20, 2014

How To Love, And How To Hate

Hatefulness. It's what's on my mind today. Not the plain mean hatefulness but the stupid kind. The kind that causes people to do and say awful things, when they should know better but they don't.

Some days I am so worn down. The job of caring for--or corralling, depending on the day--two little kids is so physically and mentally and emotionally exhausting that there just isn't much of me left over. In this exhaustion, I find that I care less about silly matters that might once have worried me. Generally, I believe this whole having-two-tiny-babies thing has made me more relaxed and more sympathetic, a much kinder person.

With one major exception. I just have zero tolerance for ugly human behavior. Bigotry, judgment of others, and hatefulness just wear me out. I don't have time to waste on anything, especially negativity, and I don't have any space in my life for ugliness. Two recent events come to mind, but they're really off topic for my preemie blog. So, I'll just say this: We are all in this world together. We're stuck with each other. And we can either be kind to each other and lift one another up, or we can choose to be miserable and make all those around us miserable too. Today, I choose kindness. Tomorrow, I plan on choosing kindness, and I hope that you'll choose kindness too.

And one more thing: Our babies are watching us. Always. And we are the ones who show them how to love and how to hate.

Tuesday, February 11, 2014

My Day Will Come

I was writing my dissertation and contemplating career opportunities when I had J. I had thought I would finish my dissertation before he was born. The plan was to enjoy a few months with him and then begin the job search.

His extremely early birth rewrote everything. Everything.

Instead, I finished my dissertation in his first months home, in tiny spurts while he was napping. I graduated when he was 10 months old. I was really proud to achieve my dream even during the middle of the nightmare of having a baby so early.

For a year, I was an adjunct instructor. I loved teaching. I loved the freedom of being a part-time employee. I could come and go, teach this semester and take the next one off. It was what I needed at the time.

For months now, I've been sitting at a crossroads, contemplating my next move. It's not all about me any more, which makes the decisions that much more complex.

I am outside the norm of what someone with a PhD does. There isn't much room for a woman like me, someone on an alternative career path. I believe it says something about academia, and maybe something about me too. Despite the outside perception of academia, the demands on faculty can be rigid, and I would not have made a very good professor, nor a very good mother, if I had been forced to do both these last few years. My primary job has been to get my children healthy, and whatever professional penalties I'll pay, I did the right thing.

I had a graduate professor once warn my entire class away from ever taking a part-time job in academia. "Once you get off the traditional tenure-track road, you can never come back," she said. How true that advice is remains to be seen. But, where does that leave the mother of special needs babies? Should I be punished for my decisions?

I do feel punished sometimes.

At an academic conference a few months ago, I was introduced to a colleague of a friend. She noticed that my introductions came with no professional title. "What do you do?" she wanted to know. It was rude and ugly, the way she said it. We should be careful about making assumptions about people, and any middle-aged woman should be seasoned enough in life to know it. I tried to be friendly. "I have two tiny babies. They were both born really early, and I've been getting them healthy," I said. But, she couldn't be put off. "Yes, but what do you do?"

What do I do? What do I do? I am the house cleaner, the shopper, the planner, the cook. I am the school-picker-upper, the nighttime nanny, the insurance caller, the diagnosis researcher, the intervention scheduler, the therapy supervisor, the butt wiper, the closet organizer, the coupon clipper, the child hugger, the boo-boo kisser, the lady who gets it all done. Most days my job begins at 6 am and ends at 10 pm, if I am lucky.

It was one of the ugliest moments of my professional life, when I fully realized how some in the academic world view me. I am a bon-bon popping, feet-propping lady of leisure.

Taking this road less traveled has opened my eyes. I see everything in a new light.

In my area of research, there are disagreements about industry insiders ruining the journalism profession and academics whose research has failed to save a dying industry. People cast stones, point fingers, and squabble about faculty hires, funding, and how to teach classes. Of course, it all matters to the people in the trenches, to the people whose livelihoods depend on the outcome of these power struggles. But, to people on the outside, we're all a bunch of unappreciative eggheads, universally irritating to Middle America.

It used to be that I didn't understand these battle lines. I wandered through grad school trying to decide which camp was mine. After I had J, I realized that I wanted the camp that didn't want to argue, the Get-It-Done Camp. So much is broken in education that I want to spend my energy trying to fix it. I want to teach classes that not only prepare students for future careers but also open their minds to all the possibilities of the world. I want to make a difference in their lives. I want to write books that live on after me, and I want to read books, lots and lots of books.

Lofty dreams for someone who spends days cleaning poopy bottoms.

At the end of every day, even really terrible ones, I say to myself, "At least I don't have a baby in the NICU," and I mean it. I have perspective. The gift my NICU babies gave me is an opportunity to have my life rewritten, to find the independent-minded girl I lost along the way. Gone are the debates about what is the political move, what will look best to the rest of academia. I don't have time to be anything but authentic. I care now about doing the right thing. Not thinking about doing it. I want to be a person my children admire. I refuse to have my successes measured by someone else's stick. I have my own compass, and now I follow it.

That doesn't mean the direction I'm traveling is always clear. It doesn't mean that some of the insults don't still hurt. It doesn't mean that I don't feel frustrated that my professional life is lacking substance. It means that I now know my own strength and value, that I am no longer afraid of the unknown, and that I understand that life's twists and turns have a purpose we often don't see when in the throws of it.

I refuse to be discarded. I refuse to be told there is no place for me. The saying, "Life is the thing that happens while you're busy making other plans." That's me. And I refuse to let circumstances negate my purpose and value. I refuse to accept that a few years of divergence from a straight-and-narrow career path will preclude me from 40 years of potential in my professional life. Close the front door, and I will find a side entrance.

I know my day will come.

Friday, February 7, 2014

Let Her Eat Cake

Today, I'm over at Preemie Babies 101 with a post about Homecoming Day and celebrating first birthdays.

Let Her Eat Cake: First Birthdays for Preemies

Thursday, February 6, 2014


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?

Saturday, February 1, 2014

Thanks, Troll Lady

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

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

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

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

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

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

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

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

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

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

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