Frozen

I freeze up when people say how terrible the last month of pregnancy is.

Or how they wish they’d just have the baby early.

Or how swollen their feet are.

Or how they can’t sleep.

Or how huge their baby is–or feels like he is.

Two pregnancies, two preemies, and many months later, and I still freeze up. I sincerely don’t know what to say.

Because what’s in my head–about how I wish I knew exactly what they meant, about how I wish I’d had big babies, about how I wish I had gone full term with just one of my babies, about how I’ll never have any more babies, no matter how I wish I could change those circumstances. All those thoughts swirl in my head. I know I can’t say any of them, and I am sorry to hear people are miserable.

It’s just that having your baby early spares you none of the pain. It brings so many painful, hurtful, awful things instead.

I’m sure no one would suggest they’d rather have two pound babies. That’s not what they mean. That’s just where my head goes. And I know it’s not fair to lay my experiences on them.

So, I say nothing. I try to offer a sympathetic smile. But, I’m sure my face, as it usually does, betrays me. I am an open book.

I’m afraid I just look frozen.

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!

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.

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.

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.

Why Preemie Lungs Are Different

 

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.

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.