Tuesday, December 31, 2013

In Just 365 Days

What a difference 365 days make! It's kind of crazy, really.

Sunday, December 29, 2013

The Dark Days

This is terrible to say, but it is my truth: I cannot wait until M's first birthday is over.

Do other preemie parents understand what I mean?

It's lurking, even when I'm busy with holiday meals, family activities, and cleaning up after two little kids. There it is. A sinking, sad, dark feeling.

One year ago today, I was on vacation in Texas with family. One year ago today, I was blissfully unaware at how our lives would be upended. Again. One year ago today, I was touching my belly when no one was watching. I kept my hand near my daughter, loving every second of my time with her. One year ago today, I still had no idea that her growth had plummeted from the 30th percentile to the 17th to the 5th. I had no idea my body was starving her. One year ago today, my husband and I were still optimistic. We still had a chance for a full-term birth. One year ago today, I still answered the question of whether M would be our last baby with a casual, "We'll see how this one goes," even though I'd already decided I wanted another one. And one year ago today, I was still clueless that so many decisions about my family, about my body, and about my future had already been made for me.

On most days, I sweep it under the emotional rug, because we are so fortunate. But, today I will admit it: I am in mourning for the youth and naivety this journey has stolen from me, I am in mourning for the traumatic way I had my babies, and I am in mourning that every time I look at those two joyful beings, I know I cannot create another one. I am in mourning that my husband will never feel a baby kick in my belly, I am mourning that we will never have a baby shower, and I am in mourning that so many of the best memories of our children's early years are so intertwined with the worst memories.

These are the dark days, the hard days, the sad days.

And the thing that makes me the saddest is that they come just before M's birthday, that I cannot separate her spectacular existence with the spectacular disintegration of my pregnancy.

But, because M is my second preemie, I know that this darkness will pass. Once the year mark is behind me, I'll pick up steam. Things will get easier. Life will get brighter. We will travel farther and farther from the hospitals, the stress, the hardest of hard days.

It's just the first anniversary that always gets me.

Tuesday, December 24, 2013

Haunted at Christmas

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

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

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

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

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

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

Wednesday, December 11, 2013

Thank You To Our PT

The same physical therapist has been coming to our home weekly--and sometimes twice a week--for almost exactly three years. Three years of opening the door to her smile. Three years of asking her questions. Three years of watching her work with my babies. Three years of chatting with her. Three years of seeking her advice. Three years of her knowing my children better than almost anyone else.

How do you measure that? How do you quantify what she has done for us? Whatever she's being paid, it should be tripled. And then tripled again.

During dark days and quiet days and lonely days and frustrating days and days on end of no contact with any adult other than my husband, she was a bright spot for me. She was something different to spice the weeks up when J and I were under house arrest and we only saw each other.

How can I explain to someone who hasn't had a special needs child what it means for someone to be a lifeline for you? What words define what someone means to you when she's encouraged your child to goals you weren't sure were possible?

Some days when I miss teaching, when I miss writing, when I miss feeling like I'm making a small difference in the world, I think of people like our pt. Whatever I've done to help people is nothing. Nothing. I have been witness to real heroes, and I'm not one of them. I wish I'd excelled at science so I could have been a physical therapist or a NICU nurse. These are the people who on a daily basis affect real change on the world around them.

We are only one family of dozens and dozens our pt helps. My children are just two of hundreds she has helped. I know it must be stressful at times working with babies and children who struggle just to hold objects, roll over, and sit. But, I hope that she can rest her head easy at night knowing that her life's work is so meaningful.

It isn't a permanent goodbye yet. We are following our pt to her new job at a clinic, and we'll hopefully keep seeing her until we move. But, our weeks won't be quite the same once she's no longer visiting our home. I will miss her tremendously.

Life with preemies is unexpected. And unexpectedly hard. But also unexpectedly wonderful. I wouldn't trade all the hard because the good is so good. And it's people like our pt who have made it so.

Thank you. Thank you. Thank you, K.

Monday, December 9, 2013

In Just 12 Months

As M nears her first birthday, I've been sorting through photographs of her. I'm always amazed at how much a preemie changes in just twelve months.

Here was M in January:

And here she is now:

It's something I love most about having preemies. It is miraculous how a baby who weighed 1 pounds, 15 ounces at her smallest now weighs more than 16 pounds. It is incredible that she could almost double her length in twelve short months. Her progress gives me so much encouragement. Look what we can do in just one year!

Saturday, December 7, 2013

Potty-Related Adventures

I have learned that kids do crazy things. And that crazy things happen when you have kids. And that sometimes you will look around at all the crazy things in your life and wonder what the heck happened. Especially when it comes to pottying. Life with kids is full of potty-related adventures.

Like the time my husband was changing M and poop sprayed--sprayed--against the wall. You're just never prepared for that.

Or the time I smelled something in the back of the car. When we were in a hurry to pick up J from school. 30 minutes away. And M had poop from her neck to her toes. No lie. And when I opened the diaper bag, there were wipes--thank goodness--but no extra clothes. (Why do I always forget to check the diaper bag before I go places??)

So, recently we've been potty training J, which has thrown us into an entirely new world full of discussions about poop and appropriate sanitation and who is wearing underwear. Since J could walk, privacy in the bathroom has been negligible. But, now that he's actually paying attention to what we're doing, there are all sorts of uncomfortable questions when--let's be honest--I really just want to be left alone.

Which brings me to our potty-related adventure at J's school this week. J finally felt ready to wear underwear to school, and I worried about him the whole morning because he'd told me he was afraid he'd potty on himself. When I went to pick him up and he still had the same pants on, I celebrated. The only problem was that he'd refused to potty at school. All morning. So, I took him to the school potty. And first things first: I hate public restrooms, even the mostly clean ones. But, there I found myself putting his bare bottom on the potty and trying to act all calm. Until I noticed a puddle forming at the base of the potty. I apparently don't understand the physics of boys pottying, probably because I'm a girl. So, I told him to stop--which amazingly, he did--and I repositioned him. Except that this time, he peed on his pants. Which was EXACTLY what his biggest fear was. So, I pulled everything off, including his shoes. In the public restroom. (Which might have been my biggest fear.) And now, he won't potty at all. He just asks for a diaper.

And this is why parenting is so hard. Because even when you're trying your best and you think you have it all together, you don't. There's always a potty-related adventure right around the corner.

For this reason, I feel very sure that there will be another blog post titled "Potty-Related Adventures, Episode 2." It's inevitable.

Friday, December 6, 2013

Another Synagis Odyssey

Last night I opened the mail. A letter informed us that M will no longer receive secondary insurance, as of last week. Our secondary provider covered last month's Synagis shot and has approved her for four more. So, this morning began yet another odyssey for a Synagis shot. I spent an hour on the phone trying to work out why M is losing coverage six weeks early. The best I can hope for is one more Synagis shot for her, but, as any Preemie Parent knows, that one Synagis shot--especially during the holiday season--is worth all the hassle.

As I was getting off the phone with the staff member at our pediatrician's office who oversees all the Synagis approvals, I told her, "I am so thankful that I don't do this for a living!"

She laughed, but then she said something that surprised me. "Actually, it's all worth it when a child we didn't think would get Synagis does." That made me smile.

Surviving the Long Winter Quarantine

Today, I'm over at Preemie Babies 101 with my first post.

Surviving the Long Winter Quarantine

Thursday, December 5, 2013

Waving the Preemie Flag

A few days ago, I was reading posts on a preemie message board for a popular parenting site. I had no idea such online support existed when I was struggling through the NICU. I now know of several wonderful preemie websites and Facebook groups. But, I'd never been to any of the preemie boards, and I wanted to see what was there.

One of the questions on the message board was about a toddler in a baby gymnastics class. The toddler is a preemie and, as a result, is small and developmentally-delayed. The mother wanted to know how to handle questions about how old her baby is. Most of the advice surprised me. The moms agreed that since the toddler is older than a year, the mother should just say the baby's real age and not adjust for the prematurity--that there is so much disparity in development after a year that it shouldn't matter. While that might be true in many cases, the toddler in question was in a class where her delays were apparent because all the other children were walking while she was still crawling. The comments that really amazed me were the ones advising that any unsolicited information about the toddler being a preemie might put off other parents by giving them more information than they really wanted.

My gut reaction was to totally disagree, and I decided that clearly this message board was not for me. Even days later, the question still nags at me. Why?

Because I believe prematurity is something to be celebrated. Because the roads our babies have traveled have been long, rough, and full of bends, but when they get to their destination, we're all stronger for it. Why should we not celebrate the miracle of life when life should not have been possible? Why should we hide what makes us unique? Why distract from a very real issue, that far too many babies in this country--in this world--are born far too early and we should do more to prevent it? You don't have to wave the Preemie Flag everywhere you go, but if someone asks you how old your baby is in a setting in which it's apparent your baby is not able to walk when other babies can, why should you hide the truth?

Some of the mothers were worried about giving too much information or wearing people out with the discussion of prematurity. Maybe some people get sick and tired of hearing me say preemie, but you know what? This is my life. Every second of every day I am reminded that I am the lucky one who left the hospital with two children. I wake up to the noise of toddler feet on the carpet next to my bed, and I fall asleep listening for cries from the nursery. My day rises and sets on the schedule of two little bodies. So, when asked about my children, am I not supposed to give an honest answer? "She is 11 months, but she's a preemie so she's like an 8-month-old" only takes a second longer. If someone doesn't want to hear that answer, then why ask me a question in the first place?

J was 9-months delayed during the time when he didn't roll, crawl, walk, or talk. He was the size of a baby when he was a toddler. If I hadn't said that he was a preemie, what would I say? It was obvious that he wasn't your average 15-month-old! Maybe that's the difference. Maybe waving the Preemie Flag isn't so necessary when your child catches up within a few months of birth, as I did. But, I was born 4 weeks early, not 14! I guess what troubles me the most is the sentiment that other mothers asking about my children might be offended or bored by an answer that takes approximately 10 additional words. When did we become so immune to those around us that we didn't take the time to listen? When did our world start spinning so fast that we couldn't be bothered to really connect with other human beings? We need to collectively put our iPhones down and take a breath if we're too busy for a good human interest story now and then. I love to hear other people share their stories. For me, that's what makes life fascinating.

And if I show up for a gymnastics class with my small, developmentally-delayed preemie and you ask me how old she is, you will get the truth. If it puts you off that I give you more information (as in 10 additional words) than you expected, why even make small talk in the first place? Because prematurity in my little family has been like a glacier that remade the shape of us. If we aren't allowed to be open about our journey and you aren't willing to share yours, then I don't think we can be friends.

Sunday, December 1, 2013

A Window Into A Preemie's First Year

A few weeks ago, several friends on Facebook alerted me to a video that was circulating the Internet. It's a video montage of a preemie's first year of life. Of all of the NICU photos and videos I've ever seen, this one comes the closest to really depicting our journey. As M nears her first birthday, it resonates even more.

The video is lovely, uplifting, and tragic all at the same time, just like the NICU journey. Here's the original link, if you're interested.