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??!!”

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.

Laughter’s Medicine

So much of the NICU experience is emotionally and physically draining. For the five months that we had babies in the hospital, the whole world looked grayer, and each morning I woke up with an awful ache in the depths of my stomach. Most days we were fortunate enough to get good news when we arrived at our baby’s bedside, but there was always a lingering fear that today would be the day we’d get The Bad News.

Even the dark days in the NICU are a mixture of good and bad. So, you find out the baby’s O2 levels aren’t good and he’ll have to go back on oxygen. Or the radiologist confirms there is a brain bleed. Or the entire unit is under orders to protect against staph, and you have to don the suffocating, yellow plastic gowns and rubber gloves that officially make the environment feel like a hospital. But, in so much of this darkness, my husband and I found humor. Something to make us smile. Choosing to laugh instead of cry. Seriously, there were times when we consciously made the decision to laugh at something terrible because it seemed like the only positive thing we could do. The alternative was to fall into a black hole of depression, and that alternative didn’t seem helpful to our tiny babies.

Sometimes our jokes were sardonic, sarcastic, and dry. Sometimes they were silly, ridiculous, and juvenile. But, they were one way we learned to cope, and they united us. My frustration at myself in all the ways I felt like a failure only served to divide us. My exhaustion over pumping breastmilk at all hours of the night, his attempts at a work-life balance, my hormonal roller coaster, and his struggle to fix us all–those things divided us. But, our jokes, our chuckles, our smirks, our giggles, they all helped to unite us at a time when we needed each other. Desperately.

We laughed at how J felt like a skinny, squirmy, slippery bullfrog the first time we bathed him. We laughed at how we were the Chart-Checkers because we snuck looks into J’s chart, which is our legal right but also against hospital rules. We still laugh about the time the lactation consultant–bless her heart–grabbed my breast to help me breastfeed, and milk shot clear across the room, splattering against the wall. Our speech therapist, a beaming, radiant, gem of a woman, gave me so many wonderful reasons to laugh. My favorite was when I confided in her that one of my breasts had stopped producing much milk, and the other one was making up for it. Then, I acted like I was bent over under the weight of it, and I limped lopsided for a few feet, which made her snort with laughter.

I needed that. I needed levity in a time of sorrow.

I hope we didn’t disturb anybody. I hope we kept most of our giggles and jokes to ourselves. I hope the other parents didn’t think we were taking the NICU experience too lightly. It was a coping mechanism, to allow a little joy into a place where there isn’t much joy. It allowed a little light into a place where there are so many sweet babies who hear beeps all day but not much laughter.

And even now, at the end of a long day, I try to laugh instead of cry. Sometimes, I’m frustrated, and I let it get the better of me. But, I don’t want to be the overburdened, overstressed, angry mom, and so I’m trying to find the patient, peaceful, joyful side of myself. That’s the woman I want my children to know, and that’s the woman I wanted them to see in the NICU too.

So, on those days when you’re all cried out, when the sky looks dark and the NICU looks darker, try to find something to put a smile on your face. You never know who may need to see that smile. Your husband, your mother, your NICU friend, a doctor, or a nurse. Your baby. Or maybe just you. Maybe it is the one thing that gives you a little push to get up tomorrow and do it all again.

Accepting Help With Grace

I am fiercely independent. As much as it feels good to help others, I hate to be on the receiving end. It is most definitely a fault of mine that I’m a perfectionist, that I like to do things my way and to my specifications. I’ve long struggled with delegating. I enjoy the feeling of a job well done and of accomplishing things I hardly thought possible. I am terrifically competitive, with myself, and hardly a day goes by when I really have tackled all the things on the ridiculously long to-do list that I create each day. I have learned to manage these idiosyncrasies…I think. But, what has not gotten easier is asking for help–or even worse needing help. I really am just like my toddler who says “Self!” and pushes my hand away; I want to do it myself.

Here’s the thing: You cannot possibly do it all by yourself when you have a baby in the NICU. You can’t. You need to simultaneously talk to the doctor about that formula issue and find out the baby’s stats for the day from the nurse and hold said baby and take your other child to school and call the insurance company about the ever-increasing bill you aren’t so sure they’re covering and go to the grocery store and cook food to feed your family and check work emails which has become a career in itself since you’ve been away and recover from major surgery and pump breast milk like there’s no tomorrow.

There aren’t enough hours in the day. And if you’re exhausted and stressed, you’re not able to be as competent in the NICU as you need to be. The terrifying part of the NICU journey for me was never knowing what was around the next bend, so if you show up too tired to function, how will you make some of the hard decisions asked of you?

We were so lucky that even though we have no family in town, my mother and my mother-in-law basically took turns living with us. With M, it was absolutely crucial because we also had a little boy at home who needed attention. There was no way for both my husband and me to be at the NICU together unless we had help at home. Not to mention all the household chores I physically could not do. Our mothers ran our home, from caring for my son to overseeing his therapy and schooling to cooking and cleaning for us. They did everything I could not do, and there really aren’t enough thank-yous to ever repay them. EVER!

During our first NICU stay, I struggled to release my control on silly things like how the pantry was organized. During the second time, I was at first too sick and then too tired to care. I finally accepted that whatever help they offered was a blessing of their time and energy; it was a sacrifice for them. Who was I to demand how they organized my pantry? That’s like asking for help and then specifying how and when you receive the help. I’m embarrassed that I was ever so thoughtless! And I hope they didn’t notice.

To be fair to myself, I was learning how to accept help in a way I’d never needed it before, and I was suffering from the shock of having J at 26 weeks. And I was a new mommy, with all sorts of normal fears and emotions that compounded the stress of the NICU. But, with M, I was different. I was overwhelmed by the kindness and support our mothers offered–for a second time in three years. I was so amazed at the time they gave us–months and months of it. And I was relieved, that I could put some of the day-to-day burdens aside and focus my attention on M and the NICU.

My in-laws currently live with my ailing grandmother-in-law, and I find myself empathizing with both the caretakers and the caretakee. It is challenging all the way around, but what I keep coming back to is this one nugget of wisdom I gleaned from the NICU: Accept help with grace. Help is a gift, and it is a gift that you can pass on to others when it is your turn.

Besides, you never know when you might need help again. Like when you have another unexpected preemie.