This Strange Situation

M started physical therapy. With J's former therapist. In his old time slot. One week the pt saw him, and then he turned three. The next week she started with M.

Today, as our therapist was shutting her car door, she leaned out the window.

"This is SO weird," and she nodded toward my hip, where I had M perched.

"Okay, I'm so glad you said so, because it's just what I was thinking!" I said, as I laughed. We were both picturing the fussy, stiff baby who became the scared, cautious toddler who became the laughing, running three-year-old too big for therapy. He's at preschool now.

We paused for a minute, thinking about him and looking at her. And then I told our pt we'd see her next week.

Apparently, even medical professionals feel the strangeness of this situation. One preemie baby following in the footsteps of another.

I'm glad I'm not alone.

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.

The Gift Milk Donation Gave ME

One of my adorable milk recipients with my milk

I never thought I’d donate breast milk. For starters, in my fantasies of parenting, I was breastfeeding my full-term babies, not hooked up to a pump like a dairy cow. While my first preemie was 2 pounds and eating less than an ounce of milk a day, I was producing up to 55 ounces of milk a day; I call this overcompensating. It was as if my body realized it had evicted my son 14 weeks early, and it was bound and determined to feed him into eternity. As a result, I filled an entire deep freezer full of milk, and I was so proud that I was able to feed him a mix of breast milk and a high-calorie formula for his entire first year.

I hoped with my second baby, who would of course be full-term, that I’d finally breastfeed her as I’d always imagined, snuggled close in a soft rocking chair. The morning after I had my daughter 11 weeks early, the lactation consultant wheeled the hospital-grade pump into the room. The sight of it actually made me queasy.

For my daughter’s first few months, she tolerated breast milk, but because she too was a 2.5-pound baby, I accumulated another enormous store of milk in the freezer. Then, she started having digestive problems, and after a series of diet changes, we had to eliminate breast milk from her diet entirely.

I was crushed. I had failed to do so many things for my babies, like carrying them full-term. The least I could do was provide some of their food! My dreams of breastfeeding my daughter in an easy chair disintegrated. I had no room left in the freezer for milk, I was simultaneously caring for a 5-pound preemie and a toddler, and being hooked up to a breast pump was making life impossible. So I quit.

Just the sight of that deep freezer full of milk irritated me. It was a reminder of yet another thing I couldn’t do.

After two months, I decided to be proactive. I found a Facebook page for my area that connects donors with women needing breast milk. I posted that I had thousands of ounces to share, and within hours, I had fourteen requests. Fourteen! I sat at my computer and cried while reading each mom’s request. Their words were so pure and raw. Some of the women had adopted babies. Two had polycystic ovarian syndrome and produced very little milk. A few women had preemies who desperately needed the immune support breast milk provides. The most amazing story was of a woman who had adopted a special needs baby born early and drug-addicted. At 13 months old, he was still unable to eat any solid food. She had managed to sustain him on donated breast milk, and without it, he faced having a tube inserted into his stomach for his feedings. We met at a restaurant several hours from my house, and I was able to touch the chubby cheeks of the little boy whom I fed for a week.

Seven times I met women in mall parking lots. I opened up a cooler and removed bag after bag of frozen milk. My baby was in the NICU when I was pumping that milk. I had sobbed while pumping that milk. I pumped that milk in the dark of night when the house was sleeping. Now, it was going to baby after baby, children I’ll never know.

The truth is that milk was not given freely. Had my daughter been able to eat it, I wouldn’t have been so generous; I would have stockpiled it for months, over-compensating for my perceived failures. But, what seemed like another failure was actually a blessing in disguise. Those mothers gave me, a stranger, a depth of love and gratefulness I’d never before experienced. It was as if I had pulled a kidney from my body and handed it to them.

As I was emptying the deep freezer, I decided to reintroduce breast milk to my daughter. I’m not even surprised any more at how this preemie journey works. Of course, after I’d shared so much milk, my daughter tolerated breast milk again. Knowing that, would I change what I did? I wouldn’t take back a single ounce. My daughter will still have a small amount of milk until she turns one.

As it turns out, donating breast milk was one of the most magical of all the crazy experiences this journey has given me.

For more information on milk donation, please email me at twotinybabies@gmail.com.

The Way It Is

Why is it that other people need to find a reason for my preemies? I'm not talking about my mother or my father. Not my husband. Not my best friend. Of course, people so close to the situation want to hash and rehash what happened, both times, in the hopes that maybe we'll finally figure out what went wrong...twice. I really love that my friends and family want to talk it out with me because their support helps bring closure to the two most traumatic events of my life.

I think I'll always wonder what went wrong. And I don't think I'll ever know the medical reasons. I look at my miracle babies. J would have died just a few decades ago because he relied on respiratory surfactants to help him breathe. And M and I both could have died from preeclampsia. So, yes all three of us are phenomenally lucky, and that is beginning to be enough of an answer for me. I had these crazy things happen, but look at the joy that has come from it.

I love that people ask questions. I love when people are curious about my preemies. But, I'm always amazed that they feel there must be some reason. Was there a family history? No. Were there warning signs? No. Was I over-weight, under-weight, too old, too young? No, no, no and no. The question that hurt the most was when I was still so vulnerable over my son's birth. He had only been home a month or two, and I was emotionally raw from the first NICU experience. A friend told me her doula wanted to know if I'd been taking my prenatal vitamins. I was too fragile to even get mad, but now the question irritates me. On one hand I want to scream, "Of course I was freaking taking my prenatal vitamins!" On the other hand, I'm amazed that anyone who is frequently present at births could fail to realize that much of the good and bad of labor is out of our hands. And when I think back to how rapidly my body spiraled out of control both times, I can't help but be a little snotty, "You really think a prenatal vitamin would have stopped that train wreck?!" Of course, that's in my head, but maybe I should have said it.

No, I didn't do anything to deserve those labors, just like I don't deserve the two precious babies who came from them. The only answer I have, the only one that gives me any satisfaction, is that this is how it's supposed to be. I am supposed to be the mother of preemies. I have tiny babies. And that's just the way it is.

The Killjoy

I don't want to be the killjoy. I'm practical by nature, but I'd rather not be the woman at a baby shower who stops light banter with some awkward comment no one wants to hear. But, seriously, at a baby shower who wants to talk to me? I have one horror story after another. Give me a condition, and I'll tell you someone I know with it. I operate in some alternate universe, in which I have many, many happy endings to awful, traumatic, and tragic stories. Mostly happy endings.

I can count the non-preemie babies I know on my fingers. Preemie babies? That's what I know.

My dearest friend from J's NICU stay has quads. During our last trip to the zoo, I looked across all the children lined up, five toddlers and a baby, none of whom weighed more than 2.5 pounds at birth. I thought, "We are a walking ad for March of Dimes." My world is foreign, totally foreign to most moms, and I'd actually like to keep it that way.

My sister-in-law has almost my exact due date with my son. I have been counting the days. She is now just two days from when I had J. The thing is: I don't want to count the days. I can't help it. I don't know how to look at a pregnancy and assume it will be long and healthy.

I guess I wouldn't blame her if she cut off all contact until the baby is due.

I don't want to scare people, and I don't want to depress them. I don't want to be the person no one talks to during pregnancy. I want to hear fears, without overshadowing them with my own sadness. I want to be a sympathetic person, which means I can't overwhelm others with my story. I am living in a strange and lovely world, but I have to find a middle ground between hiding that story and thrusting it onto people. I'd like to be a source of information and comfort for those who need it, and I'd like to share the vitality that comes with almost losing everything. I believe we should give back as much as we receive, and we have received so many blessings that it will take a lifetime of giving back to make any headway at all. But, being so passionate about a cause like preemies also separates you from other moms who have no idea what you're talking about.

I don't want to be the zealot; I just want to share love. And I'm figuring that balance out.

A preemie mom is a fierce mom.

And sometimes a killjoy.

The Lucky Ones

I was the one little girl in my ballet class who had hips. I was fully developed at 12, before most of my friends. My mom and grandmothers had no trouble at all getting pregnant and carrying their babies. An obgyn told me when I was pregnant with J that I should have no trouble delivering because all the room in my pelvis was “nice,” a moment that embarrassed my husband and still causes us to giggle to this day. I am healthy and somewhat athletic. I thought I was built to have babies. I always believed that I could do labor and delivery. I just knew it.

And I never got a chance to try.

I still struggle with how my two deliveries happened. There was nothing peaceful, magical, or beautiful about either one. Both were scary—terrifying, really. Both required major surgery. Both had complications. Both ended in tiny, tiny babies with long NICU stays. Seeing your child for the first time is still special, but I don’t think it has the same aura when he is whisked from you within seconds to be intubated and stabilized. The thought that your baby could die right before your eyes is a fear that I wouldn’t wish on my worst enemy. Neither my husband nor I saw J enter the world—the first people to speak to him were the doctors and nurses saving his life. My husband wasn’t even allowed in the room because I was unconscious. We prayed it would all be different with M—most of it was but not in a good way. I still had complications, a VBAC as an option flew out the window, and I was terrified and awake for that C-section. But, I had one lovely blessing: We got to hear M cry when she was born. It sounded like a tiny kitten mewing, but it was M and she was alive and we were there to hear it. Just like in other people’s stories, just like in the TV shows and movies, I looked to my husband, and I cried and said, “She’s here! She’s here!” I cherish that one moment because it was the one thing that seemed like it should have been, like what other people experience.

Sometimes I am a little jaded. Most women I know complain about some part of the delivery experience: it was painful, it was too long, they had to have a C-section, they wanted a water birth, the baby was whisked away, they had to take drugs when they wanted to go au naturel. I get it. I really do. I too wanted more control over my deliveries. But, here’s the truth: so much of what happens during labor and delivery is out of our hands. If you have a water birth with no pain meds or if you have a home birth in your own bed with your husband holding your hand or if you had a relatively quick and easy birth in the hospital, good for you. You should be proud, but you should not be judgmental because the simple fact that you had a chance to do those things is a blessing. So many things can go wrong in labor and delivery, and I believe modern medicine has separated us from that reality. It doesn’t mean you have to be frightened of the process or that you can’t have goals and dreams for what kind of birth you want. But, one of my pet peeves is when someone moans about not being able to have a drug-free delivery. I want to scream: “Do you know who you’re talking to?! Someone always has it worse.”

If you’re here, you probably have more experience with preemies than you’d like and so you know about pregnancies and deliveries not going as you’d hoped. But, I will say this: Both my tiny babies lived, and every time I feel a twinge of jealousy for other mothers with more normal experiences, I remind myself of that fact. My babies lived, and one of the joys of this journey has been a total transformation in my perspective. So many things in life are trivial now. It’s like I’ve had a near-death experience, only it was my children, and now everything in life is more precious, more beautiful, and more sacred. So, I allow myself a little room for sadness or disappointment and reflection on how things were so terribly different from how I’d always imagined. And then I smack myself around, look at my lovely children, and tell myself to be grateful. The truth is that NICU birth stories are terrifying by and large, but for those of us who leave the hospital with a baby, we are the lucky ones.

My friend with quads born at 28 weeks has said this to me many, many times: “We are the lucky ones.”

Out of the Blue

Sometimes, I think this journey is so mixed up in joy and sorrow, in early surprises and long delays, in personal sacrifices and favors given and received that I don't know what to make of it. I know I'm supposed to write. I know I'm supposed to share my story. I know if nothing else I owe it to my babies to document their journey. But, how? How do you sum up the experiences in a few stories? How do you recreate the feeling of impending doom as you await the birth of a tiny baby or the joy of peeling out of the hospital with the baby in tow after a 91-day NICU stay?

How?

I am trying. I am trying to find the time and the energy to dig into my memories, my heart, and my soul to share what has been the most enriching, fulfilling, not-to-mention craziest experience of my life. But, I still feel incapable of really doing the whole experience justice.

I am praying for guidance as I attempt in my little human way to make sense of this journey, to find the purpose in it. As much as I know my children are miracles and gifts from God, I also believe there is more to the plan. Because, really, what healthy, young woman has not one but two 2.5-pound babies out of the blue? It's like I got struck by lightning the first time, I ignored the lesson, and I got struck again.

So, I'll just keep plodding along and hoping I find my way. Because, clearly, I cannot be left alone in a thunderstorm.