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.

Saturday, November 30, 2013

Wishing I Could Do More

As I've had to do so much this year, I had to step away from the blog--from all creative activities actually--because the kids were sick. We traveled the weekend before Thanksgiving, and both kids came home with colds. I try to temper my frustration with having sick kids so often this fall with gratefulness that the kids are strong enough to handle most common illnesses now. And relief that at least M has had a Synagis shot this month!

I've been moved lately by the preemie stories that have come my way. Since I'm usually the only Preemie Mama people know, they pass along all sorts of photos, videos, and stories my way, which I love! I'm already inundated with preemie stats and concerns, so learning more about this community is rewarding for me. Some of the stories mirror my own just enough to feel familiar but they are tragic enough that they disturb me. They remind me that someone always does have it worse and that even during our darkest days, we were always blessed with healthy kids.

Lately two stories stand out. The first is of a friend of a friend who lost her husband in a car accident a few months ago. Then, she was hospitalized for bleeding complications due to placenta previa. She had her baby girl at about the same point I had M. She also has a son at home, a son she cannot care for while she's tending to her baby in the hospital. I find myself thinking of her a good bit. I do not know her name. She does not know me. But, I know just enough of her journey to hurt for her. I cannot imagine going through the NICU without your spouse, because my husband was the only other person who was in the dark place with me. We always had each other, and I think how unfair it is that someone should be stripped of her partner just before such a traumatic time in her life. I called my mom after I heard the story, and I asked her why some people get too much grief at one time. I know some of us have more faith than others. They would say I just don't know the big picture, and maybe they're right. But, I can't help but have a gut reaction, frustration that one woman should be given such a load at one time.

The other story that has been on my mind is of a woman who just had a baby abroad. Her husband is in the military, and they're stationed in South Korea. She had her baby at 31 weeks; she almost made it to the 32-week threshold that separates long NICU journeys from short ones. And yet her baby is struggling. He is having a difficult time breathing and eating, and I can't help but be haunted by a critical factor: it is not customary for parents to hold preemies in Korean hospitals. The mother has been told she may not hold her baby for months, even though he's already three weeks old. Her milk production is faltering, and, in my opinion, her son would be happier and healthier if he had a little contact with his mother. Human babies, no matter how early, need physical contact, which is why kangaroo care is essential. Of course, a 2-pound baby can't handle all the stimulation of a newborn baby, but he needs his mother's warm body, heartbeat, and steady breathing to help his own body remember all the jobs it must now do that it is no longer in the womb. Kangaroo care allows the baby to relax, to be soothed, to have some solace and comfort during a stressful time. So many studies across the world support the science of it. And it's just common sense. No one soothes us the way our loved ones do! So, the idea of that poor baby being separated from his poor mama just haunts me. I also wonder about preemies around the world and how just a few alterations in care could dramatically change the outcome of so many little lives.

I only wish I could do more.

The preemie stories keep coming, and I keep filing them away, hoping that one day the full scope of what the heck I'm supposed to do with all this knowledge and this newfound passion will present itself.

Sunday, November 17, 2013

The Magic of Preemies


Today is World Prematurity Day. Instead of dwelling on the negatives, all the risk factors and statistics, I want to celebrate my preemies today, because there are so many blessings to being part of this community. So much of what I write is raw as I'm working through complex feelings about traumatic events, but as my preemies get bigger, older, and healthier, I've realized that I also love being a mom to preemies.

These are some of the reasons why:

1. It's not just the hard parts about having babies that are extended with preemies. All the delightful things extend well into the first year too. Chubby baby cheeks; tiny fingers and toes; sweet, toothless grins; nighttime cuddling; swaddled, sleeping babies; cooing baby chatter; tiny infant clothes; and sweet baby kisses on velvety skin. I wonder what it's like to have babies for a few months when I have them for more than a year.

2. I have been inducted into a community I never knew existed. From Michelle Duggar to preemie mama bloggers to friends from our NICU, I now witness the successes and accomplishments of preemies across the country. Even if I don't actually know all of these children and their families, I revel in their achievements, because I know the struggles and odds they've overcome to do the simplest things. There is a common language among preemie families. We throw out O2 numbers and how many bradys our babies have had. We discuss therapy and developmental delays. We share suggestions for where to buy tiny clothes and how to store breast milk. When we talk to each other, we can drop all the explanations. This kinship replenishes drained emotional reserves.

3. Much of my identity is now intertwined with what it means to be the mother of preemies. I'll admit that in my earliest days as a mother, this fact weighed on me. I had no friends with preemies, and I knew no one to give me any guidance. Because I wasn't a mother before J, I had no mommy friends to give me strength, and everything I knew about parenting seemed to have its root in J's prematurity. Now, as the kids get a little older, I find that I still have an entirely different set of experiences from many moms, but it doesn't discourage or defeat me any more. All I know are preemies, but they give my life so much meaning and purpose.

4. I always wanted to be a person who didn't sweat the small stuff, but small stuff definitely gave me the sweats. Until J. The last few years have been difficult, but they've also forced me to focus on what is most important in life. And everything else is just noise and chatter. It has also given me the freedom to see my career ambitions in a new light and to explore them from a different perspective. In J's earliest days, so much of my world felt lonely, dark, and shuttered from the daily lives of everyone around me. I see it all differently now. I see options, opportunities, and chances everywhere I look, and I also have the patience to realize that just because I can't do it all right now doesn't mean I can't do it all one day.

5. I still wouldn't call myself patient. As most mothers, I am constantly telling myself to be more patient, to speak more kindly, to be more understanding, to take more time to enjoy the chaos of life with small children. I have much work to do, but I believe one of the gifts of life is the opportunity to constantly smooth our rough areas, to better ourselves to become the best person we can be. If 150 days in the NICU, if two emergency deliveries, if two long babyhoods of little sleep and much problem-solving, if all that won't teach you at least a little patience, then I guess it's hopeless! I do find myself ignoring whining, overlooking faults and foibles, and listening to the big fears that come from small bodies much more than I ever thought I would.

6. The lows of having preemies can be pretty low. Like the day we found out J had a heart defect. Or the night my in-laws drove us to the emergency room because my blood pressure with M was stroke-level. But, the highs are so much higher. I won't ever know how good it feels to bring a full-term baby home after a few days in the hospital, but what about the elation you feel wheeling a 6-lb, 3-month-old out into the sunshine for the first time? What about watching your 17-month-old who never rolled or crawled finally...finally...finally take his first few steps, watching him gain his hard-fought independence for the very first time? The simplest things take on new meaning: smiling, talking, walking, eating, and even breathing. I cried at the sight of my 2-lb baby girl breathing on her own, and I told my husband that I probably would have cried at the miracle of any baby that small breathing. But, given that it was my own daughter, it was a spectacular moment. Absolutely spectacular.

7. My best friend who has known me for 26 years told me after she saw J in the NICU that I was previewing him. At the time, all I could think was that I didn't want to preview my baby. I wanted what every other mother wants: a big, healthy, full-term baby. But, the more I thought about it, the more what she said resonated. It realigned my perspective. I could not look at him and expect to see a baby who had enjoyed 14 additional weeks of growth and development in utero. I had to see him for what he was, a 2-pound miracle, a pre-baby, the tiny baby who would become the baby I would take home and raise. And then I also started to realize that I was getting to witness J's phenomenal growth and development despite great odds and that I was getting to know his unique personality months before I was supposed to even lay eyes on him. Besides, how many people ever hold a 2-pound baby?

8. The people I've met have been amazing, such as NICU nurses who love on palm-sized babies with tenderness and incredible skill. They have an arsenal of tricks to cure most of what ails the tiniest bodies, and they manage to navigate the treacherous emotional waters of parenting babies whose parents have to leave them behind everyday. Sometimes, they make all the difference with a smile or a kind word of encouragement in an otherwise awful day. The doctors I met were dedicated and devoted to a chosen profession with so much heartbreak. The volunteers were so giving of their time. What mother wouldn't love the lady who rocked her screaming baby after a transfusion when he couldn't eat? How can you possibly thank someone for that? And I cannot heap enough praise on the team of therapists and teachers who have encouraged my kids toward each milestone. After our PT leaves, I see the results in M immediately. After I pick J up from school, I hear the confidence and enthusiasm that his teachers, skilled in developmental delays, have instilled in him. This phase of my life has left little time for friends, and there have been weeks when the only people I talk to are these teachers and therapists. They have been not just a lifeline for my kids. They have saved me.

9. The last time I did kangaroo care with M, I memorized her tininess, the way her fragile body felt against mine. She fit in the cavity of my chest; it was like holding a furless kitten. I measured her minuscule fingers in my own. I stared at her dots for nostrils and her pinpricks for fingernails. I felt her skin, her nearly translucent skin, against my own. I listened to her breathing, breath out of a mouth the size of my pinky fingernail. I knew it would be one of the most beautiful moments of my life, witnessing a magic so few witness. And it is magic.

Thursday, November 14, 2013

We Have To Keep M Healthy

This is the saga of Synagis.

Anyone with a preemie born before 32 weeks has probably heard about Synagis, a monthly vaccine given to small children at great risk from the side effects of RSV, a virus that causes cold symptoms. Nearly all toddlers by age 2 have been exposed to RSV, and most parents have never even heard of it because for healthy kids with strong lungs, it's more of an inconvenience than anything else. For preemies and small babies, it could mean lifelong respiratory challenges, like asthma, or it could even cause death. Tiny lungs simply cannot withstand the virus's attack and all the fluid and mucus that accumulate (see this post). Parents of preemies during RSV season (usually October through April in my area) are encouraged to wash hands, keep their children out of public spaces, and avoid sick people, but one of the best tools for protecting susceptible lungs is Synagis. It helps keep RSV in  the nasal passages as a head cold, protecting the lungs. And it doesn't come cheap. It's needed every 28-30 days, and it generally costs $1000 for each vaccine. However, if you factor in one night's hospital stay or a lifetime of asthma medication, it's actually a bargain.

The problem with $1000 vaccines that must be given within a short time of delivery to a doctor's office is that pediatricians won't be liable for the vaccine and refuse to order it without prior approval from an insurance company--even if families are willing to pay for the vaccine themselves. The prior approval process usually begins in September or October and can drag into the holiday season, as insurance companies hedge their bets on whether or not a few $1000 are worth it. This process, in my experience, limits parental involvement but depends on parental involvement, and therein lies the fantastically frustrating contradiction that is the state of healthcare in the United States. Whatever your take on how to fix it, surely no one who has ever gone to battle with health insurance companies, doctors' offices, and pharmaceutical companies can be pleased. It can be a nightmare, and I am so grateful our experiences have been limited to the NICU and preemie care.

So, in August at a doctor's appointment, one of our pediatricians said she thought M would get Synagis this season with no problems based on her prematurity, weight, age, and other risk factors (like her exposure to her toddler brother and other babies in Mother's Morning Out). I was cautiously optimistic, because I had experienced the Synagis Approval Roller Coaster with J. In early October, our regular pediatrician put in another request to have Nurse S contact our insurance company, because we'd heard nothing from the first request in early September. That doctor also thought M would definitely receive it. The next week I called Nurse S to see how the process was going. She said that we'd received a denial. Of course, no one had informed me.

I was disappointed, because I cannot protect M the way I protected J. M is not our only child who can simply be sheltered at home all winter. A few days passed, and then it dawned on me that our state is our secondary provider for M's first year, because of her prematurity and birth weight. We declined that help with J, but we had a hiccup in our insurance during M's NICU stay and realized the value in having a back-up plan. So, I called the secondary. Of course, all infants are eligible for vaccines through their program--that was the answer I got. I tried to explain that this is no ordinary vaccine. I can't just go to a clinic to get it, and prior approval is required before a doctor's office will even order it. Finally, I spoke with someone who assured me that if the primary denied it, the secondary would cover it.

I didn't feel very assured.

So, I called Nurse S and told her. She said she'd follow up with them. Days passed.

I received a denial letter from the secondary. It said that we could have an appeal, so I called and said we wanted to appeal the decision.

I called Nurse S and told her, and then I called our primary to verify that they had denied M too. They said no decision had been made. What?? Apparently, the first request had come before the technical start to RSV season, so our doctor's office had to repeat their request. So, I called Nurse S back and told her that news. Clearly, she already knew that the primary was still considering her second request, and by her tone, I should have known too. Nurse S deals with very frustrating situations, so I try to understand that her tone has nothing to do with my stupidity. But, sometimes I can't help but wonder if the doctors and nurses at our otherwise wonderful pediatrician's office really understand. What would you do if you were protecting your baby's health? Really, what would you do?

So, I waited. We were in RSV season by this point. M had been sick for the better part of a month, and my husband and I decided that M needed to have a break from the germs at Mother's Morning Out. I was envisioning how her winter would go with drooling, runny-nosed babies. Of course she'd get exposed to RSV!

Then, I got a letter from our secondary. I was excited, but it was just confirmation that they were appealing the denial.

Another week passed. In the meantime, we received notification from our secondary that we had three weeks to gather all of our financial information--and I mean ALL--for a review over whether M will receive secondary insurance after her first birthday. If we didn't submit the paperwork by the end of the month, her secondary insurance would automatically terminate. I felt defeated. I'm quite sure she won't be eligible, but on the off-chance that our secondary insurance gave her a few Synagis shots before her eligibility expired, we decided we had to comply. So, my husband spent much of his free time during one week on that task.

Then, I got another letter from our secondary. I couldn't believe it said that we'd won our appeal. They were approving Synagis!

Except when I called Nurse S, she said she'd heard nothing. She called the secondary. She called me back to say that yes, M was approved, but only if the primary issued a denial and informed the secondary on the reason for the denial. Okay, awesome. But, how do I do that? Nurse S and our pediatrician called the primary. I was miffed because the last I'd heard from the primary was that they were considering M's case. I had no idea they'd made a decision and they'd failed to directly notify the secondary. Nurse S called back to say that the primary was in the appeal phase on their denial but that our doctor had stressed that since it's now November, a month into RSV season, and our secondary has already approved Synagis for M, it would be fantastic if they'd finish their appeal and notify our secondary.

Another week passed.

Yesterday, Nurse S called and left a voicemail asking me to call the office. I prepared myself for the inevitable no--no vaccine for whatever convoluted reason. I'd already accepted it when Nurse S said, "Synagis is here!" Wait, what? I know I should have asked more questions like "did the primary finally officially deny her?" but instead I just made the doctor's appointment for the first available time. Better get the vaccine before someone changes his or her mind!

Nurse S helped give M the vaccine. I looked at her, really looked at her in her eyes, and said, "Thank you. Thank you so much. I know this was a pain, but I really appreciate everything you've done." And she smiled, shrugged her shoulders, and said, "We have to keep her healthy."

When I wonder if people like Nurse S understand, really understand, it's a moot point. Maybe she does and maybe she doesn't. But, even if she doesn't, she understands enough. Because in the aftermath of a two-month insurance battle, just one of many I'm sure she fights on a daily basis, her answer is exactly what I would say.

A shrug of my shoulders as if all of this were just child's play. We won after all. And we have to keep M healthy.

Tuesday, November 12, 2013

Thank You?

I was at the zoo last week pushing the kids in the double jogging stroller, and I was wearing jeans, a boxy pink sweater, and running shoes. Like most of my days with two small children, very little effort went into my appearance. Which is why the following conversation surprised me.

Two women were pushing their strollers toward me. As they passed me, I could feel one of them looking at me. Then, I heard her say, "And look at her. She has a baby, and she doesn't even look like she's had a baby!"

I actually glanced around to see if any other women with babies were walking by us at that very moment, but she must have been talking about me.

First of all, thanks. I'll try to take that as a compliment.

Second, looks are deceiving. Yes, I do have a baby, but she's not nearly as young as she looks. She's 10 months old now, four months older than she looks.

Third, women shouldn't judge themselves so harshly. I am wearing my regular jeans again, which I do consider to be an accomplishment because it's been a rough year. And I do have two small kids. But, what that lady didn't know is that I don't have babies. I have two-pound kittens, which explains why I don't look like I've had full-term babies. I haven't.

Fourth, it always stings a little when people say things like "you don't look like you just had a baby." I know it's meant as a compliment, and I understand the intention. But, I always think back to those tiny babies and those awful deliveries. And it actually feels like an indictment, like a reminder of some major failures in my life. I always want to ask if someone would really trade being a few pounds heavier with seeing her tiny baby struggle for life.

So, thank you, I guess?

Wednesday, October 30, 2013

Fraud Mama

In the hours and days and months after J was born, I was a fraud. A fraud of a mother. Certainly, mothering takes all shapes. No one mother is the same, and no one mother does it just right. But, in all of the ways I believed I would be a mother to J, I was nothing.

For starters, there was his birth at 26 weeks. Boy, that was a flop. I'm pretty sure you're supposed to at least get to your 9th month.

Then, there was the manner of his birth. Emergency C-section wasn't the route I had planned. I'd chosen a highly-dignified yet hard-fought natural birth in which I'd be quite the champion. Instead, I turned out to be a chump at labor and delivery.

To add insult to injury, I had J at a hospital that could only care for babies born at a minimum of 32 weeks. It never crossed my mind to seek out a hospital with a NICU any larger, since I was planning on that full-term, natural birth thing. So, just hours after J's birth, he got his first ambulance ride to a hospital 30 minutes away. He now loves anything with wheels, so surely I get points there?

I'm pretty sure I lose ground on the next one, though. I met J for the first time just after my anesthesia wore off. The doctor wheeled him to my bedside, and then he was gone. I didn't see him again for two days. His own mother didn't visit him--couldn't visit him. Other family rushed to town to see the tiny baby, but does that make up for missing a mama?

And then there's all the bonding we missed. I didn't hold him until his 5th day, and even then, it was just kangaroo care, not at all what I'd had in mind when I pictured snuggling my newborn.

In my mind, this list went on and on. I accounted for every mistake, every failure, every way I let J down. It began at his birth and continued for two and a half years. Years.

Of course, I loved him with my whole heart. I sacrificed in every way. I gave until I had nothing left to give him. And I walked through the world, unable to relate to most mothers I met who had birth stories I envied. Every, single subject was painful for me to discuss, from breastfeeding to walking, talking, and eating. Every thing I knew about parenting revolved around prematurity, and nothing I knew seemed to have a place in a regular parenting conversation. I knew better than to compare myself to other mothers, and I knew it was unfair to blame myself for J's birth. But, I could not forgive myself.

Until M.

She is the result of preeclampsia, another surprise for me. She is a preemie too. She is sweet and giving, a ray of sunshine, people have said. She and J will have each other. With her birth, the entire dynamic changed. This story is no longer about J and me, about what I did or didn't do; it is now the story of our whole family. Prematurity is a bond we all share. It is a uniter, not a divider. And, slowly, as the shock of M's arrival waned, I realized so did my shame.

When I talk to mothers in the NICU, they are so full of anger at themselves. It is painful for me to witness because I want to save them. I spent so much energy punishing myself, but it's not an anger I can quell in someone else.

Every mother has to reach her own place of forgiveness, in her own way.

Somewhere along the way, in the middle of long days and longer nights of parenting two preemies, Fraud Mama disappeared.

Here I am, in her place.

Tuesday, October 29, 2013

A Pivotal Moment

I've noticed a human tendency, especially among athletes or people whose identity is found in their physical fitness, to equate health with achievement. Having just spent a couple of days sleeping on my cold bathroom floor, I'm certain that health is a gift.

I've thought lately about pivotal points in my life. Every person has them, the moments that separate your life into before and after, and certainly having preemies must rank somewhere near the top of mine. But, as I sort through memories that play like horror movie reels, what one moment stands alone?

J's delivery was so rushed. Once the doctors and nurses realized that my labor could not be stopped, they prepped me for not just an emergency C-section but for emergency surgery with full anesthesia. As I lay tipped back in the hospital bed, practically standing on my head with my feet toward the ceiling, controlled chaos was all around me, a rotating door of people handing me waivers, advising me of my rights, asking me to choose a NICU downtown, explaining the procedure, taking my blood pressure, informing me on all the ways they would try to save J's life. It was too much way too fast. My mind was whirling around in on itself, stuck trying to process: I am having this tiny baby now. As they rushed me to the operating room, I was completely disoriented. Someone forgot to tell the interior decorator that if the ceiling is white and the bedsheets are white and the hospital gowns are mostly white, all the patient can see as she's wheeled to her fate is white, as if she's already dead and on her way to Heaven. As they popped open the operating room doors and the bright light hit my eyes, I yelled back to my husband a goodbye, a pathetic, last-second, nearly-forgotten goodbye, and I had a pivotal moment. I was lying on an operating room table. All I saw was white and steel. All I could feel was cold. Would I live? Would J live? Would both of us meet on the other side?

Three things strike me about that moment. The first is that you don't know how many moments you get in life like that, moments when you are certain that your life is either about to be spared or ended. Most of us don't have many. And when you are spared, nothing in life ever looks the same again. I would say that moment marks the loss of the girl in me and the birth of the woman.

The second thing that strikes me is that I wasn't alone. An army of people buzzed around me, prepping me for surgery. My doctor was there readying herself to perform one of the more dramatic deliveries of her career, since it's not everyday you deliver a surprise 26-weeker in the middle of the night to someone you've never met. But, I felt more alone than I've ever felt. The anesthesiologist and the nurse anesthetist did more than perform their clinical duty; they stepped in for my loved ones. They stroked my cheeks with their fingertips and calmed me with gentle words. I'm glad I didn't know that some of the best and most challenging work anesthesiologists do is emergency surgery on pregnant women. They made me feel like their only job was to soothe me, to give me some peace. They were incredibly compassionate in a dark place for me. As I waited to fall asleep, all I could see were their eyes. Their smiling eyes I'll never forget. Their eyes, as I went to sleep. We should all be so compassionate, in whatever it is that we do in life. So much in this world doesn't matter. It is people who matter, and each one of us deserves love, respect, and compassion.

The last thing that strikes me about that moment is that should I be on an operating table like that again in my life, I want to know that I did the important things and I did them well. Maybe I'm not famous. Maybe my life's achievements don't win any awards. But, awards aren't the measure of a life well lived. Recognition is icing, but it's not the cake.

Which brings me back to my original point:

Health is a gift. Our choice is what we do with it.

Thursday, October 24, 2013

Curing the Chaos

My children have a new daytime sleeping routine. They tag-team. My husband calls them whack-a-moles. One pops up, and the other goes down. At 10 a.m. M takes a morning nap. At 12 p.m., just at J is falling asleep for his nap, M wakes up. At 2 p.m. J rises, and they overlap for a few minutes. Then, I put M down for her afternoon nap. The synchronicity of it is unbelievable. There is not one minute in a 12-hour stretch that I truly have to myself.

The end result is chaos all over the house, from the kitchen to the mail bin to the laundry pile. The bonus room has a splattering of toys from one end to the other, like someone stood in the middle and threw toys in every direction (which he probably did).

The chaos is also in my head. Gone are orderly days when I planned anything, even something as minute as when I wash the dishes.

At 2 p.m. today, I took my first look in the mirror, and what a fright I found in a robe and sweatpants. "I am a skunk!" So, during my daughter's afternoon nap, I put Sesame Street on for J, and I took a shower. I got dressed. Then, I looked around the mess to see where to begin, an attempt to put things back in order.

And I sat down to blog instead.

Wednesday, October 23, 2013

A Season Of Illnesses

Where in the world have I been?!

Well, two weeks ago we went on our first vacation in 18 months. Trips with the kids aren't stress-free, but they're still a welcome change from our routine. We spent a week at the beach with some of my family. J is just now old enough to really appreciate that we're on vacation, and some of his questions were amusing. Why are we at the beach? Why is Papa not at work? Why are Pop and Mae here? (His whole world has changed with his recent discovery of the word why, and he now uses it A LOT.) We had to teach him the point of a vacation because in his world it makes no sense to leave home to go stay in someone else's condo.

Unfortunately, while we were on vacation, both kids came down with colds. On the way home, we had to stop in a CVS MinuteClinic for J to see a nurse practitioner, who confirmed that he had a double-ear infection. Then, a few days after we arrived home, we had to take M to the doctor, and she also had an ear infection. In fact, hers was so bad that her ear drum had ruptured, even though she'd never run a fever and wasn't overly fussy. The next day J ran only the second fever of his life, which brought on another doctor's appointment. A test showed he actually had the early stages of mono, though his virus has now traveled through the whole family, making mono an unlikely culprit. The end result is that we have been one sick--and busy--household for weeks now.

All this illness has made me extremely nervous about RSV season. Before J, I never worried much about cold and flu season. Being sick was an inconvenience for sure but not life-threatening. J's first winter was a terrible one for me, because we were housebound. But, I kept him illness-free until he was 17 months old, giving him some extra time to get bigger and stronger.

M is a different child and a different story. She's 9 months old going into RSV season, instead of 3 months old. She has an older brother who exposes her to all sorts of illnesses. I think she is stronger than he was because she was less premature and she's older. She's been in Mother's Morning Out for a few months, and until recently, I was sure we were making the right decision by exposing her to other babies.

I'm no longer so sure. It is unlikely she'll receive the Synagis shots to protect her from RSV, even though our doctor has been advocating for her to get them. And with all the illness lately, I'm really pondering what is in our best interest.

Pulling her out of Mother's Morning Out would have career ramifications for me. I've already abandoned most of my professional life, because caring for these two tiny babies has been my job, more than a full-time job. But, I'm having to make some hard decisions now that will largely dictate the next several years for me, and I am struggling. I think I know what I must do, but it doesn't make the decision any easier.

Wednesday, October 2, 2013

Overjoyed


I was going through photos, and I found this one. This is the very first time we took J into public. It was a beautiful April morning, and we ate at our favorite breakfast spot. Two things strike me about this photo. 1) You totally can't tell that J was already almost 9 months old, but you also can't tell that he was a 26-weeker. He already just looks small for his age. Small but healthy. 2) The joy on my face is so visible. After a terrifying early delivery, many long and exhausting NICU days, and an entire lonely winter spent at home, I look overjoyed to be coming out of a dark period. I look absolutely deliriously happy! And I was.

Tuesday, October 1, 2013

The Space Where NICU Parents Meet

Parents with babies in the NICU have such a weariness about them. It's not just the lack of sleep; it's the constant stress. All the worry about all the things worth worrying about. Every parent has such a fascinating story. Each parent comes from a different place in life to this common ground that we all share. It doesn't matter your education, your socio-economic status, your birthplace, your color, your religion, your marital status, your gender. We are all NICU parents. We all have a long haul ahead of us. We all have baggage that we can't seem to leave behind. And we stand in the middle of the emotionally-draining, frightening, lonely NICU, and we wonder if we'll ever make it out of here. And not just here, as in the NICU, but here as in the emotional space where walking this road strands you. Having a baby in the NICU challenges everything you believe, everything you dreamed, and everything you love. It turns you inside out. Your pain is written all over your face. You feel as if people on the street must pass you by and feel sorry for you. They have to know that you're walking around without your heart, the one you left by your baby's bedside.

I remember so vividly that hollowness, that feeling of despair, that antsy desire to be anywhere but here and nowhere but here all at the very same time. Nothing is right in the world, and nothing is the same. Everyone has a different piece of advice, but none of them sound like what you need to hear. You are tied in knots, fit to be tied, tied down, ties flapping in the wind, hogtied. You don't even know what you are. One minute you think you have all this heaviness under control, and the next minute you're in the bathroom, balling your eyes out. You freeze people out, to save yourself from explaining. You wall yourself up, to hold it all in.

I wish it were socially acceptable for me go up to these NICU parents and hug them. I wish it were okay for me to kiss them on the cheeks. I have to maintain a distance, so they don't think I'm crazy, but I want to give them some warmth to take with them throughout their cold days. I want them to know that they are not alone. No matter who you are, being a preemie parent is a test in emotional endurance. We all have good days and bad days, and then we wake up the next day to keep going for those tiny babies.

The help I can offer feels so minute compared to the depth of their pain. I wish I could do more.

Monday, September 30, 2013

Oceans Apart

Yesterday, I went through our bins of preemie and newborn baby clothes. I was surprised at how little emotion I felt as I methodically separated the clothes into piles: donate to the NICU, sell at consignment, and keep for the kids. There were only a few items that I kept for the kids, just a few reminders of their time as tiny babies. I thought I would be sad as I pilfered each bin, ruthlessly getting rid of the clothes my babies wore when they were tiny. When they were in the NICU.

In an odd way, it was the realization that I will never have another tiny baby that made me sad. It's not about the clothes at all.

So, as I worked at my task, J wandered over to me. He now has two favorite words: no and why. I love both of them, because they mean he's developmentally where he should be, challenging and questioning everything about his world. Until he asks me "why?" over and over and I run out of answers. This serves me right for all the questions I asked as a child.

-------------------------------------------------

J: "Mama, what doin'? What doin', Mama?"

Me: "I'm sorting through your baby clothes. These are the clothes you and M wore when you were tiny."

J: "Why?"

Me: "Why am I going through the clothes?"

J: "Why, Mama?"

Me: "I'm going through the clothes so we can give some away."

J: "Why?"

Me: "Because we don't need them any more."

J: "Why?"

Me: "You're big, not tiny any more. You and M can't fit in these clothes."

J: "Why, Mama?"

Me: (Sigh...) "Because you grew."

---------------------------------------------

I held up a tiny onesie, one that I'm keeping for J. It's the size of my hand. It shows how small three pounds really is. I held it up for J and told him that when he was little he could actually wear this onesie.

He looked at it, he looked at me, and then he ran off. The conversation was over. And he has no idea what I'm talking about. For him, the idea that he was ever tiny makes no sense. He still lives in the here and now. The past is too far gone for him to appreciate, especially a past he can't remember.

But, some days I feel haunted by his past. His past was the one that marked me, changed me, shifted everything in my life. His past is the one that terrifies me with what ifs. Now I know so much more than I knew then. Thank goodness I had no idea how fragile his life was.

What if that tiny baby hadn't lived?

I know one day he'll be bigger. One day he'll have more perspective. One day he'll have his own big babies, and he'll be amazed by the trinkets I've saved from the NICU. That onesie will shock him when I hold it up, a witness to how tiny he really was.

But, now? Now, it means nothing. J and I are oceans apart. All he knows is being big and healthy. He can't imagine that he was ever separated from me, that he ever lived in a hospital, that his life was anything other than it is now.

And I keep imagining him as that baby, that tiny, fragile, fit-in-your-pocket baby.

I'm glad he doesn't know what I know. Actually, I hope he never knows. I want him to know his story. I want him to read the journal I wrote just for him. I want him to grow up knowing he's special, that his life has meaning and purpose. I want him to sift through the trinkets I've saved, the microscopic blood pressure cuffs and the tee-niny hospital ID bracelet. I want him to appreciate where his journey began, and I hope that he'll love that his mother and father tried so hard to make the most of his first days in the world, though they were spent in a hospital. Maybe he'll even read these words. 

But, do I want the man whom J will become to ever know what his mother and father actually felt? Never. I hope he has big babies. I hope he rejoices in his big babies, and I hope he never has to see them in a hospital.

I hope his babies are so big that they skip newborn onesies. I hope J's wife complains that her babies didn't even wear all their newborn clothes. I hope I'll smile to myself and think about how J was six months old and wearing his newborn clothes. I'll think about that first onesie he wore, the one his daughter can't even fit on her doll. And I'll be so glad for him.

In some ways, I hope J and I are always oceans apart.

Thursday, September 26, 2013

Inside A NICU Reunion


Last weekend we went to the NICU reunion. It was our 3rd reunion, and this time we had two preemies. Two preemies who can breathe without oxygen. Two preemies who can eat without a feeding tube. Two preemies whose brains remember to tell their lungs to breathe, all without a nurse to nudge them toward life. Two preemies whose bodies don't show the scars of all the needle-pricks and procedures. Two preemies whose minds don't remember being left by their parents, day after day and night after night.

NICU reunions have games, crawling races for babies and bouncy houses for the big kids. There are free snacks and drinks, and we go home with t-shirts for the kids. Some of the staff dress in costumes that match the theme of the reunion, and doctors and nurses, dressed in real clothes instead of scrubs, pose for pictures with all the preemies they once nurtured. It's all fun and games.

Except for the parents.

Am I the only one who smiles at each child running? Every baby here is a miracle. The boys and girls jumping in the bouncy house? Their parents weren't sure they'd live, much less walk. And to see them jump? They feel they've hit the lottery.

There are meltdowns and temper-tantrums and babies crying. There is laughing and talking and plenty of noise. But, for the families, don't we rejoice in the mayhem of little children? There was a time when all we heard was an eerie stillness marred by the beeping of machines. Our babies couldn't cry for all the things in their noses and mouths. And their lungs weren't strong enough for them to do much more than croak like tiny frogs.

We walk into the hospital with big kids, and at the end of the reunion, we leave with our children. We don't have to leave them behind. We don't have to fret and worry. We don't have to mourn and grieve. We don't have to do any of that any more. After countless hours and days and sometimes months, we brought our babies home. We have cared for them. We oversee therapy. We push each and every milestone, always mindful of giving our babies the best possible outcome.

And then here they are. A bunch of energetic, happy, and, most importantly, healthy kids. In fact, if you didn't know you were at a NICU reunion, would you mark all these children as preemies? You would never know.

I don't know how many NICU reunions we'll attend. Eventually, the kids will outgrow them, and we'll know fewer and fewer people, until we aren't sure there's a reason to attend. As a family, we'll decide to do other things with our Saturday afternoons. But, I'm not sure I'll ever be ready to walk away. There is something so healing about being in a huge room full of people who know my pain and who rejoice in my children. There is something so beautiful about seeing all these kids who began their lives as survivors. There is something so moving about being a part of this community.

Tuesday, September 17, 2013

Letting Go

I wonder if all parents feel this way.

I want to teach J to be brave. I want to let him go. I don't want to shelter him and fret about him until he's unable to forge his own way.

I confess that I still wipe down grocery carts when I shop with J, but generally I've put away the hand sanitizer and the alcohol wipes. I let him scrape his knees and hang off the deck rails, the ones close to the ground, when he pretends to be Super Grover. And when we get to the doors of his preschool each morning, I let him go.

I take M to Mother's Morning Out. Other people care for her. She touches other babies, babies with runny noses. I let her go.

But, I never, not one, single day, leave them without thinking about their dots for fingernails, their heads the size of a clementine, their bodies hooked to machines. I never, not one, single day, walk away without looking back, glancing back just like I did when I left the NICU. I need a parting glance. I need to fill my heart with them, even as I walk away. I must leave. I must let them go, even when I'm afraid.

Call me crazy to wipe down shopping carts. Call me crazy when I institute strict hand-washing guidelines in our home. Call me crazy when I fret over the beginning of RSV season. Call me crazy. You wouldn't be the first.

But, if you haven't walked in my shoes, you don't know what it's like to hold a baby whose body fits in your hand. And you don't know the strength it takes every day to make the choice to let your kids be kids. Just because I see preemies when I look at J and M doesn't mean the world sees them that way. And I don't want my kids to always be preemies just because that's what I see.

Maybe other parents feel this way too. It's just they see newborns instead of preemies when they look at their kids.

Tuesday, September 10, 2013

What My Heart Sees

Last night my husband called me into M's room. This is what I saw with my eyes:


But, this is what I saw with my heart:


And words can't express my gratefulness. My eyes met my husband's eyes, and I saw my emotion reflected in his eyes. His smile matched my smile. Both of us thinking about the baby M once was.

Saturday, September 7, 2013

Balancing My Two Preemies

I love my two preemies equally. They are so different, but I have really great kids.

With that being said, J was such a challenge for his first year. Some of the struggle was with me. I was a new mom in a new place with a very new role in life. And some of it was him. He didn't feel well. He was a very bright mind trapped in a delayed body. He was frustrated, fussy, and fidgety.

He became my world. Every, single thing I did each day was about him. The therapy. The feedings. Struggling with him over naps and bedtime. The entire day was a devotion to him. I'm not sure how healthy that arrangement is, but it was what I needed to do for him and for our family.

Everything about M is different. She was less premature. Her body is less rigid, and she seems more at peace with the slow progression a preemie makes through milestones. Honestly, M is the sweetest child I have ever known. Her disposition is like sparkles and sunshine, all the time. She is joyful and patient, even when she waits for attention from a mother wrangling a busy three-year-old boy.

I wanted to have more than one child, because I wanted them to learn that we are all part of a community. We have to wait our turns. We have to find our place. We must learn to give and to take. Not one of us is more special or important than anyone else. We are all precious with wants and needs, and we must make room for each other. Having siblings is only one way to teach small children those lessons, but for me, it was a very important way. I was afraid the world would always revolve around J in our house if he didn't have a little friendly competition.

But, here's the problem: M is so generous, so loving, so peaceful that I worry she doesn't demand enough from me, and I don't give enough to her. She too needs therapy. She needs to be challenged. We must work after each milestone, just as we have worked with J. And I'm finding the hardest part of having two preemies is that I can't focus on either one. I guess all mothers of more than one child feel this way? Certainly, all families must find a balance, and some days one child needs you more than another. But, J is still so demanding and M is so the opposite that sometimes I look deep into her big, blue eyes and ask her if I'm doing enough. In the shuffle to and from J's preschool, in the rush to cook dinner and clean the house, in the middle of three-year-old temper tantrums, am I stopping enough to talk to M, to touch her fat, little feet, to kiss her and tell her I love her, to smell her sweet baby smell, to treasure her the way she deserves to be treasured?

I don't know. I really don't know. But, I think I should try harder. The easier child shouldn't get passed over because she's easier. As M's personality is unfurling one petal at a time, I'm discovering that one of the challenges about her sweetness is that this busy household sometimes takes it for granted. We all dote on her a little, even her older brother. We all talk a little baby talk to her and feel her velvet skin and bask in her bright smile. But, I think we should do it even more. We should reward her for being so lovely. Let the dishes pile up. Let the floor go unswept. Let the clothes stay wrinkled in a mountain on the couch, at least for a few hours. My husband should get home from work a few minutes earlier to see her before bedtime. J should put down his toys to play with his sister, who can now reach for the toys he hands her. We should all give M the attention she deserves.

M is already 8 months old, and her babyhood is going so much faster than J's did. I must remember to pause more and enjoy the sweetest baby I've ever met. Even if she doesn't demand it.

Friday, September 6, 2013

Just Keep Paddling

Every time we drive downtown, I am transformed into that woman. She's terrified, and she's lost. Every building is unfamiliar. The landscape is one road sign, one mile marker, and one interstate exit after another defining the distance from home to the unknown. She has only lived in this strange city for a matter of weeks. She has no friends here. A family member or two come to visit and to help, but she feels so very alone. For the first time in her life, she has no community, no support network, and no friends to help her on the most difficult journey of her life. She is lost, physically and emotionally. She never expected to be here. She has no idea how to get home, either metaphorically or in reality. Life bounces from one car ride to another, one traffic jam to another, a series of moments that divide one trip to the NICU from another. The only times she feels secure is when she's with the only other person in the trenches too. She clings to his presence.

Until the day she had to drive to the NICU by herself. She had to park by herself, walk to the hospital by herself, pass the happy people leaving the hospital with balloons and presents and healthy babies by herself, ride the elevator by herself, sign into the NICU by herself, and scrub by herself. She had to ask hard questions by herself. And maybe most difficult of all, she had to touch that tiny baby, take his temperature, and change his diaper, using just the tips of her fingers through the holes of the isolette. By herself.

And she realized that she could do it all. She could do it all by herself.

There are things in life I don't understand, people I don't understand, and problems I don't understand. But, since those days, I empathize with people who feel lost, for whatever reason. I can't diagnose their problems, I don't want to judge their problems, and I certainly can't fix their problems. But, I get it. What it feels like to be lost. What it feels like to have so little hope. What it feels like to wear your pain like an ugly coat.

But, what gives me more strength than anything to face the unknown is the knowledge that I faced down the fear. I overcame sadness, loneliness, anger, and loss. I can't say it was easier or harder than someone else's journey, but I can say it was awful. And I wish I could be a beacon of light for someone bouncing around in a skiff in a foggy ocean, wondering where they're going and when they'll get there. I just want to tell them to keep paddling. Just keep paddling. Don't give up.

You are stronger than you know.

Thursday, September 5, 2013

Three Tiny Babies

I want more children. I always saw myself having three kids. I love being a mother. It is painful watching M go through every stage and thinking, "This is the last time."

Before M was born, people would ask since we were having a girl and we already had a boy, if she would be our last. I said that if everything went well, we might consider a third baby. But, what I was really saying was, "I want a third baby, and I hope everything goes well so that we're able to have three kids."

Everything did not go well.

When M was born, I heard the high-risk doctor say to the nurses that there was too much scar tissue from my first C-section. I heard him say that he was having to make another incision to get her tiny body out. I knew what that meant. If the sudden birth of a 26-weeker weren't enough. If the sudden preeclampsia weren't enough. If the arrival of another 2-lb baby weren't enough to keep me from dreaming about more babies, the very real possibility of my uterus rupturing from multiple incisions was. Every time I said crazy things to my husband about having more kids (probably the only person to whom I admitted such craziness), I always came back to my role as a mother. I have never been a risk-taker, so why would I start now by risking my own life as my children's mother?

I believed that as time faded the horrors of preeclampsia, as the incision healed, as I became healthier and less sleep-deprived, as we fell out of the NICU routines and back into a peacefulness at home, as M grew bigger and fatter, as life moved on, I would be satisfied by two children. My mom said she knew she didn't want more children, and the decision was still hard. Surely life would be simpler with these two lovely children. I would make peace with it.

My husband remains on the fence, as he has every right to be. Only a woman, only a mother would stew about whether or not she'd have more babies. He's so bogged down at work and at home that he doesn't have the energy to think about more babies. I agree with him. Except that for me, it doesn't require energy. It's just where my mind goes every time I see how fast my tiny babies are growing up. I can't help it.

And even as we make permanent arrangements that will end our ability to have more biological children, I still feel like things are being left undone. I feel like there's more to our story.

I still have a baby out there somewhere.

It makes no sense, so I don't usually talk about it. I should be glad to get back to life. I should be glad to leave these hard years behind. I should be glad to make the next years about balancing my professional and personal lives, instead of throwing all my eggs into the child-rearing basket.

And, yet, more time passes, but things don't get easier. I reject the decision that was made for me. I want a bigger family, not for the work that it is now but for the blessings it will bring in the future as we watch our children grow. Raising babies, especially tiny babies, is hella hard work, and it's not for everyone. But, it is for me. Even on the hardest days, I believe in family.

So, where do we go, and what do we do? My husband and I have put so many of our goals on hold these last three years, and 2014 will be a year of us moving those front and center. Maybe actually moving. If M is healthy enough, we want to move to a place where we see ourselves raising our family. We have so much to do in our personal lives before we can really contemplate adding another baby to our family. And so we wait. I guess I've learned to be more patient, so even though the thought is always on my mind, I'll tell it to rest awhile. We'll see what happens.

But, here's the point to this confessional: When I think of adopting, I'm overwhelmed by the decisions. Private or foster care? Baby or toddler? International or domestic? And can we afford it? How would it affect our family?

It is scary.

But, the one thing that feels right is: preemie. I want another preemie. That sounds crazy, doesn't it? But, it's all I know. I know preemies. That is what we have. I think back to our first NICU stay. There was a baby no one visited. She had no name. She was just a baby in a box waiting for a home. I wanted to scoop her up and love her. Plenty of children in this world need a good home and a family to love them. But what feels right for me is another preemie, a preemie without parents able to help her grow and develop, a preemie without parents to advocate for her.

And that's where I lose my husband. A preemie? Haven't we done our tour of Preemie Duty? But, if I'm being honest, I think I'm a better, more experienced preemie mother. What would I do with a "normal" baby? What do you do with a baby who just rolls over or a toddler who just walks or a child who just talks? Every stage is so crucial, every milestone so anticipated, every change so monumental with a preemie. In a funny way, it's become my comfort zone. It's my identity. It's the one thing that unites my babies the most, the thing that knits our family together. It's the foundation of our lives as a family of four, this sense of gratitude we've all developed. And I cannot imagine adding another member to our family who didn't share that connection.

Isn't it funny how that happens? The foreign becomes the familiar. The trauma becomes the salvation. The dark brings such light. And the lady with two tiny babies wants a third.

(I think?)

Wednesday, August 28, 2013

Fine

There is one thing a NICU parent wants to hear above all else. One phrase. One set of words that means everything.

"Your baby will be fine."

And it is the one thing that alludes you when you're in the NICU. No one can say which baby will need therapy, which one will need oxygen, which baby will go home in a few weeks and which baby will stay for six months. They can guess and speculate. But, the awesome and yet tragic part of tiny babies is that sometimes there seems to be no rhyme or reason for why one baby succeeds where another struggles.

Sure, a baby born after 28 weeks generally has a different journey than a 26-weeker. A baby at 24 or 25 weeks has a long road ahead, but so can a 32-weeker. One baby who weighs less than 2 pounds can be out of the NICU before the baby born at 5 pounds.

As a NICU parent, you want to look around at the babies going home, and you want to know one day soon that baby will be yours. But, comparing is a double-edged sword. With J, I got so frustrated about how long everything was taking him. He stayed in the NICU for an extra three weeks because he was a slow and distracted eater who could not master the NICU's feeding schedule. (He is still a slow and distracted eater...) Now, looking back, why was I so hard on him? He could breathe. He could eat. He could maintain his temperature. He had no brain bleeds. He had no illnesses. He was small, developmentally-delayed, and fantastically healthy.

I just didn't have perspective. I was still comparing him to what I had always dreamed. I'd be a champ at labor and delivery. I'd have a big, healthy baby. I'd nurse him right after he was born. Those were reflections on me and my limitations, not on J.

I think I wasted so much of J's first year grieving all my dreams. I feel so selfish, but I also realize that working through those emotions and then letting them go was probably healthier than stewing on them.

What is normal? What is fine? A NICU parent often doesn't want to hear about all the jobs they'll have after the NICU. Just the hospital stay is overwhelming enough. They are broken, and they can't imagine where they'll find the strength for any more giving. But, then those babies come home, and we find ourselves giving more than we knew we had. Therapies and doctors appointments become a new normal. The routine changes, and it is sometimes very hard. But, it doesn't mean our babies aren't worth the extra effort.

The truth is that most of our babies will be stories of miraculous achievements, of stats broken and odds defied. Most of them will amaze us with their resilience and their resolve. They will grow up to be beautiful.

They will be fine. It's just that "fine" means something different to us all, and sometimes "fine" isn't what it used to be before you had tiny babies.

Tuesday, August 27, 2013

Tomorrow

Tomorrow will be my first day training as a NICU volunteer. Tomorrow, I will go back to the place where my tiny babies spent their collective first five months.

I've thought about the logistics of how I'll get one kid to preschool 30 minutes south of us, of how I'll get the baby to Mother's Morning Out near our house, and of how I'll get myself in a completely different direction to a hospital downtown--all by 10 a.m.

I've thought about the friends I'll see at the NICU. I adored so many of the doctors, nurses, and therapists there. I'm excited to see some of them again.

In a weird way, the NICU is like another home, the one where my babies had all of their firsts. I know, isn't that bizarre, to think of a hospital like a home?

But, I hadn't stopped to think how it would feel to be there again.

I felt all of it wash over me: fear, depression, anger, defeat, frustration. I heard the dings and beeps that make up the rhythm of the NICU. The smell, that hospital smell. I could almost taste it, and what does it even smell of? Strong antiseptic?

I felt queasy.

And the parents? Only God knows what they need to hear! Some of them are lost, some of them are desperate, and nearly all of them are downtrodden. I know how they feel. But, can I give them comfort? Can I find the right words? I don't look like one of them anymore. My eyes don't betray a sadness. I don't walk with the weight of the world on my back. I'm one of the lucky ones with babies at home. A fat, squishy baby and a toddler who races around the house.

But, I am one of them. I have walked in their shoes, and I want to help. I just want to help.

That's the thing about helping, though. You can't fix it. You can't make it right because you can't give them the one thing they want most of all: their baby home. All you can do is offer encouragement, support, and love, and you have to hope that is enough.

Do I have the emotional reserves to give to someone else yet? Helping is healing. I already know that. So, maybe I'm ready.

I guess I'll find out tomorrow.

Monday, August 26, 2013

The Missing Milk

The day the NICU lost all my frozen breast milk with M was a bad day for the nurses.

The day I discovered the NICU had lost all my milk was an awful day for me.

One day I hope I'm able to offer constructive criticism to the NICU because I'd like to tell them that accidents happen because we are human. But, more accidents happen when the nurses are overloaded. Accidents can be deadly, but they are most egregious when they're preventable and they happen to babies.

Losing breast milk wasn't necessarily deadly to M, but it called into question her care.

This is what happened:

The highest floor in the NICU is for the healthiest babies. Occasionally, nurses trained as well-baby nurses for full-term babies were called to serve on that floor. I realize that adequately staffing for dozens and dozens of babies, all coming and going at their own pace, must be a nightmare. But, our experience was that no matter how well-intentioned and otherwise skilled well-baby nurses were, they were no replacement for NICU nurses. For one, the equipment was a challenge for them. M's nurse one day didn't know how to operate the temperature on her isolette. I walked in to an agitated, red, overheated baby. This was the same baby we were only allowed to handle for short times because we had to fear overstimulating her. I'm pretty sure overheating her did nothing for her. I was by myself at the NICU that day, and I called my husband, crying, "The nurse is frying her!"

I tried to help the nurse with the bed. I had spent hours by M's bedside, but I was no expert on how to program an isolette. My baby's nurse should have been. M had just moved to that floor, and the NICU was at its highest capacity. Ever. As in, they didn't have enough bed spaces for babies. My baby was still tender enough to be in an isolette, and I believe she deserved a nurse who understood how to operate her bed. Nothing like that ever happened with J.

When we moved to the new floor, I carried a plastic hospital bag full of frozen breast milk with me. This milk was from M's earliest days. Bottles and bottles of beautiful, golden colostrum, which my tiny baby desperately needed when we were trying everything to facilitate her growth. So, I carried the milk up myself, but a few minutes later we had to leave the NICU to beat rush hour home. The last time I saw the milk, it was lying on a table waiting for a nurse to put it in the freezer.

The next day I asked M's nurse why bottles of formula were on the table beside her isolette. "Just in case," she said. As she walked off, I called, "Just in case of what?" I was producing more than 40 ounces of milk a day. Every time I was at the hospital, I left a day's worth of milk, and a whole bucket full of frozen milk was in the freezer.

The next day when I arrived at the NICU, the nurse was feeding M a bottle of formula. After all the nights I lost sleep while I was pumping. After all the hours I spent each day attached to that infernal machine. After all the time I listened to that stupid whirring pump, like I was some cow. My eyes felt like they might pop out of my head. Or I might start crying uncontrollably right there. Instead, I tried to solve the problem. "Why are you feeding her formula?" The nurse looked like a deer caught in headlights. "Because she ran out of milk this morning." I felt like crying again. "Why didn't someone tell me?!" She apologized, but I was completely confused. I stumbled on, trying to piece it together. "But, I don't understand. I leave milk everyday. She only eats a few ounces a day, and I produce more than 40. There is milk in the freezer. There's no reason to feed her formula." That's when she told me there wasn't any milk in the freezer. I was incredulous. "Two days ago, when M moved up here, I brought all the bottles of milk up here myself." She checked the freezer again. Another nurse checked the freezer. A nurse checked the freezer downstairs. The charge nurse checked the freezer.

There was no milk. I think my milk sat out, thawed, and was thrown away. I think someone knew it. A whole bag full of labeled bottles doesn't just disappear. I'm sure it was an accident, and I forgave that. What really shook my confidence was that no one told me. All it would have taken was one phone call to identify the problem, and no one had the time to call me.

What if the mistake had involved medicine? Or what if the mistake had been over oxygen? What if she'd had a reaction to the formula? Would someone have told me?

I wasn't so sure anymore. And leaving a baby behind day after day after day requires trust.

During those weeks, there were times when we called the NICU to check on M. No one answered the phone. No one had time to answer the phone. For hours, we'd call, and no one answered. Do you know what that will do to a mother who has to leave her baby behind?

The worst days where when the nurses had four babies. Four preemies with a range of challenges and complications. FOUR. There were six babies in the room. When the nurses had three babies, two nurses were present in the room. When they had four babies, the dynamic totally changed. One nurse was split between two rooms, so when both nurses were preparing bottles or getting supplies or out of the room for some other reason, we'd look up and realize we were in a room with six preemies and no nurse. That's unacceptable. As a parent, that instills no confidence whatsoever. As a nurse, I cannot imagine what that 12-hour shift must be like. It's not fair for anyone.

We spoke with a head nurse who assured us that these problems wouldn't happen again. We did it in a calm and respectful way, but we were adamant. And things did get better. I'm not in healthcare, so I don't know what the answer is. I just know that nurses having four babies in a NICU is awful for everyone involved.

And the missing milk? We never heard from it again. Every time I open our deep freezer and pull out a bag of milk for M, I lament that golden colostrum that probably spoiled in a trash can.

Wednesday, August 21, 2013

PTSD

I finally got up the courage a month or two ago to open J's journal that documents his NICU stay. It wasn't as painful as I'd expected, so now I've gotten the courage to sift through my posts on my personal blog. It is actually much harder than I anticipated. The posts are usually short, but the emotion in them cuts through my heart. Looking back, I know how awful some days were, but it's hard to remember exactly what I was thinking at that moment in time, without any perspective on how things would turn out.

One post that affected me was about PTSD. Here's what I said two months into J's NICU stay:


Not to belabor how difficult this journey has been, but apparently NICU parents can have Post-Traumatic Stress Disorder, according to a NY Times article. I try to focus on how fortunate we've been, but staying positive is becoming increasingly difficult. I can feel myself starting to pull away. Does my own son even know me? I feel helpless to comfort him. It's not right for a little one to have such a rough start, with all the poking and prodding and needles and tubes. And I have no privacy with my own baby, even when trying to learn the art of breastfeeding with a very sleepy preemie. Every word spoken to him can be overheard. Now, I can't even touch him, skin to skin. The MRSA outbreak means that for his own safety I have to don rubber gloves and a Hazmat gown just to hold him. The entire situation is so artificial.

I know, I know. It's necessary. It's temporary. It won't always be this way.

But, with each passing day, I shut down a little more. I can't help it. Otherwise, it just hurts too much to leave your baby with strangers day after day.

Our experience has been nothing compared to some parents, so I can totally believe the whole PTSD thing. I just hope we get out soon--preferably before RSV season starts, which is fodder for another worried blog post for another day.

I am struck by my fear over my connection with J, which, as it turns out, was legitimate. I had a hard time bonding with J when he came home. I went through each day sacrificing everything I had to give him, but it was out of a sense of responsibility and duty. I owed it to him to be a good mother. The confidence I now have as his mom and the playful relationship we've developed took more than a year.

I'm also touched by the topic, that PTSD can haunt parents long after the NICU. Even in the middle of our first NICU stay, I was trying to balance complex emotions: fear, loss, joy, anger, despair, anticipation. Some days I just put one foot in front of the other other and shuffled through the day. On good days, we laughed and cried at the beauty of J's little life. But, it was a terrifying time, and even as I write this, it takes nothing for me to feel the despair wash over me again.

What happens when you start your parental journey with such trauma? Are you a better or a worse parent for it? Are you different from other parents? Do you have more of a relaxed approach, because the sting of the NICU puts life's challenges into perspective, or do you have a focused approach, because life is so tenuous? Even though our kids won't remember their beginning, does it affect them? Somewhere in their being, do they know the road they've traveled?

I don't know. But, I do know that the NICU puts a brand on you; it's a mark that will never come off. We are still in the middle of it all, too close for much perspective. But, I am aware of all the ways it has shaped my husband and me. Do I still feel the trauma? Yes, every, single day. But, I also feel so much joy that comes from rising out of a dark place. In that way, we are fortunate. The most fortunate. It's too bad I can't go back in time and tell myself that the shock waves would pass and a peace would follow.

But, it's probably a good thing that I can't go back and tell that poor, tired mama that she was only halfway through the first NICU stay.

I'm sure she'd say, "Wait, what?! We'll do this all over again??!!"

Tuesday, August 20, 2013

Kangaroo Care


Before my babies, I didn't put much thought into how and when I would hold my babies. I figured after they were born, someone would hand me my baby, and that would be the beginning of our lives together. But, my babies came out the size of bullfrogs, and J was so early that just our touch stressed him out. In his first four days, there was no holding at all.

When I first heard the words kangaroo care, I thought it sounded so exotic, when really it is the most natural of all treatments. All it meant was me holding J on my chest, his skin against mine. Sometimes I tucked him into a tank-top, and sometimes I snuggled him under a hospital gown. Sometimes we had a blanket over us. Sometimes we reclined, and sometimes we slept. Sometimes I'd look down, straining my eyeballs to focus on the baby under my chin, and I'd see his little eyeballs rolling around. He could smell me, hear me, and sense me. Sometimes this was our only peace in an entire day, the only moments when I truly relaxed. And then the monitors would ding or a nurse would say our time was up, and just like that, the spell was broken.

What did it feel like to hold a two-pound baby? Like snuggling a skinny, hairless kitten. Warm, smooth, bony, and fragile. With cords running every which way. It could also be stressful. For months, J would have an apnea spell and forget to breathe. We learned how to massage his back and talk to him, or how to prod him if he took too long to come back to us. We learned how to doze while literally keeping one eye cracked to watch the monitor with his stats. But, only once was he stressed on us; nearly every moment of kangaroo care, his numbers told us he was blissfully happy. High oxygen saturation, low heart rate. Our essence as humans makes us need that human touch, the warmth and comfort of a caretaker; yet, preemies as early as J have nervous systems that cannot handle the very touch they crave. So, kangaroo care is the simplest of all solutions: put a warm body with a steady, beating heart against the fragile body of a preemie and watch the preemie relax.

One of my frustrations was that kangaroo care was work for the nurses, and a few--just a few--of them let you know it. Some of them even discouraged it. They had to get the baby out and keep an eye on the baby's stats and put the baby back. That's all harder than if the parent just sat by the baby's bedside and asked nothing of a nurse. There was actually one spot in the NICU where doing kangaroo care was virtually impossible because there wasn't room for a chair. Discouraging kangaroo care for its inconvenience always put me in a foul mood.

I remember the last time I did kangaroo care with M. I knew it would be the end because she was just beginning to bottle-feed once a day. The nurses didn't want to overwhelm her, so we cut out kangaroo care and made bottle-feeding the only time a day that we handled her. I was holding her on my chest with one hand underneath her tiny, chopsticks for legs. My palm was on her diapered bottom, which easily fit in my hand. I lightly touched the reddish down she had for hair on her head with my fingertip, and I twisted my neck so I could look into her face. Her eyes were the size of my pinkie fingernail; her nostrils were dots. I memorized her and the feeling of her on me. It was dreamlike, because who can imagine she will ever hold such a baby? "I will remember this moment forever," I told my husband.

The value of kangaroo care simply cannot be understated. For the baby or the mama.