Wednesday, July 31, 2013

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.

Tuesday, July 30, 2013

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.

Monday, July 29, 2013

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

Thursday, July 25, 2013

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.

Saturday, July 20, 2013

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.

Friday, July 19, 2013

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.”

Thursday, July 18, 2013

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?


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.

Wednesday, July 17, 2013

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.

Tuesday, July 16, 2013

Like a Monkey

I am so tired, and it has been a long day. The kids have been tag-teaming all day so that one naps while the other one is awake. So, just a quick thought for today. I was playing with J this afternoon, when he walked up me by holding my hands and scrambling up me with his feet. I could not believe that A) he is strong enough to do this after all the months we worked on rolling over, crawling, sitting up, and walking and that B) he is fearless enough, after being too cautious to try anything remotely dangerous. It was a simple moment, but for me it was thrilling to see him hanging from my arms like a monkey. Just an average little boy doing what little boys do.

Friday, July 12, 2013

Being Compassionate

One of the best life lessons that the last three years have taught me is how to be compassionate. When someone is sick or housebound, when someone has lost a family member, or when someone is just in a dark place in life, what do you say? What can you do? Before the NICU, I thought about people, I really did. Sometimes I stewed over situations that really had nothing to do with me. I felt sorrow for people, and I offered up prayers and sent positive thoughts their direction. But, so many times since I didn't know how to fix their problem or even what to say to make it better, I just didn't say anything at all.

When my son was in the NICU, sometimes the silence was deafening. Of course I knew people cared, but on the dark days, I looked around and wondered who was standing with me, who was supporting me, who wanted to help. And truthfully, most of us are too busy, too wrapped up in ourselves to take the time to be compassionate.

I promise I'm not trying to keep score, but I remember every person during the 150 days my babies were in the hospital who called me or sent a card or sent me a message on Facebook. Dear friends in South Korea called from literally halfway around the world. The last communication I had from a childhood friend who committed suicide was a message on Facebook. He saw that I was online one night, and he asked how my baby was. I gave him the pat answer, a few stats on his weight gain and oxygen levels, and I thought that would be the end of it. He had the compassion to ask more questions, and then to tell me he was thinking of me and praying for me. Now, looking back I suspect his own pain made him sensitive to the pain in others.

The beauty of being compassionate is that you don't have to speak words of wisdom or fix a situation. Sometimes just being a lifeline, a warm hand on a shoulder, a sweet card in the mail, a friendly voice on the other end of the line, that is all you need to do. We just don't want to be alone. We don't want to wallow in self-pity and doubt. We want someone to recognize our pain and validate it.

Now, I look back, and I see so many missed opportunities. So many things I left unsaid and undone. And I am sorry for it. But, I have resolved to try to be more compassionate, which is not to say perfect. In the hustle of daily life with two small children, I still leave so much unsaid and undone, but instead of letting myself off the hook with an at-least-I-sent-them-positive-thoughts (as if people are automatically notified of these thoughts like I've texted them), I buy cards and send them, or I pick up the phone and use it, or I type out an email or a Facebook message and hit enter. Or with my ailing grandfather, I picked up his hand, looked deep into his eyes, and said, "I am so sorry, and I wish I could do more."

You never know the joy your card or your hug or your flowers bring until you're in a place of despair and sorrow. And I thank the NICU for that life lesson.

We Have Each Other

Ever since our first baby was in the NICU, my husband and I have a way of dealing with bad days. We'll vent about whatever the problem is, and then one of us will always say, "Well, at least we don't have a baby in the NICU." Then, the other one will smile, and we have some comfort in knowing that at least we're home together as a family. We have each other.

Thursday, July 11, 2013


Last night, I snuggled next to J at bedtime. I felt his bony, little shoulder on my cheek. I watched him chatter and giggle, and then I closed my eyes and thought about those first two days after he was born. When we were separated. I saw him through a glass box, and then they wheeled him away to a hospital 30 minutes from mine. My husband visited him. My mother, my father, and my sister visited him. My mother-in-law and my father-in-law visited him. But, his mother did not. When I think back to that time, it feels like a Twilight Zone. They put me to sleep, they took my baby, and then I sat in a hospital room for two days waiting to see him again. It was surreal. Was I even pregnant? Did I really have a baby? Was he really alive? Was I a mother? I certainly didn't feel like it.

On Day 3 of my son's life, I was released from the hospital. I remember my husband wheeling me into the NICU for the first time. The sounds were foreign. The smells were foreign. Overwhelmingly foreign. My husband had to show me how to scrub properly. He took me to J's isolette, and he introduced me to his nurse. I felt out-of-place, truly like a visitor. And then I looked at that tiny baby in the big pexi-glass box under the bili lights.

Inadequate. I was wholly inadequate. I felt powerless, helpless, and clueless. Oh, and swollen and terribly sore too.

"Mama, WAKE! UP!" And here we are, J's smiling face in my own. I am the one who knows him best. I am a hero to him, all-powerful and full of answers. If only I could go back and tell the woman I was then that she wouldn't always be inadequate. If only I could tell her to be patient with herself and give it time.

We were all thrown into not just the deep end but a whirlpool. We were sucked under and spit out. We all struggled, my husband, my son, and me. But, then we all popped up to the surface, we found our places, and now we're a family. 

And I might be many, many things, but inadequate is no longer one of them.

Wednesday, July 10, 2013


J turns three next week. THREE! For us, this is a huge milestone. It is the goal we have all worked toward. Three, when J would catch up to his peers.

When he was released from the NICU, a social worker referred J to a caseworker with the state, and she has guided us through home intervention with a teacher, physical therapy one and then two times a week, speech therapy, and placement at a school for toddlers with developmental delays. We were always talking about the boy he'd be when he was three. Three, when he could walk and talk and would no longer need therapy.

The pattern of our weeks followed the pattern of his therapy. Naps and playdates and errands all revolved around therapy. The people I talk to are therapists. There have been times in J's life when I'm convinced that J's therapists knew him better than almost anyone else because they have seen him week in and week out. They follow his progress. They set new goals and check off old ones. They push him and encourage him and rejoice at the boy he's become.

And here we are. Three.

This team of people have loved my child. Deeply and patiently. They gave me a social outlet when I had few friends in a new town and was housebound with a child who couldn't go into public. We chat about J; they want to know everything new he is doing. They hear out my fears. They have given me priceless advice about parenting and preemies and childhood development.

This team of people know where I live. They come to my home. They talk to me by phone and text. They know my parents and my in-laws. They know where we go on vacation and what food we're cooking for dinner. They got regular updates while M was in the NICU, and they provided a bit of normalcy during a period of upheaval for J. It is a wonderful and also intimate thing they do, coming into people's houses and helping raise their children.

Our speech therapist has suggested we do a playdate with her 3-year-old daughter once we're no longer clients. And our physical therapist will begin working with M in J's timeslot the week after he turns three. M currently has one of the home teachers J had, and once she's old enough for preschool, she'll probably qualify for that too, following in his tiny, preemie footsteps. So, this whole community of people who have given J such invaluable resources over the last three years will continue to be our home for the foreseeable future. I can't say I'm sorry about that because these people who love my child have also become my friends.

I hope other Preemie Parents have the same experience. I think about the children affected when I hear about budget cuts to early childhood education. Our state could have cut these resources, and our quality of life would have suffered with a baby who was 9 months behind in physical development. We have been phenomenally impacted by J's team over the last three years.

Three. J will be three, and I cannot even believe it.

How Preemie Moms Are Chosen

The kids and I have been staying with my parents for the last week, so I haven't had time to write. But, a friend tagged me in a post on Facebook about how God chooses preemie moms, and I think it's such a sweet way to think of having preemies. I definitely feel chosen.

How Preemie Moms Are Chosen
(Adapted from Erma Bombeck)
Did you ever wonder how the mothers of premature babies are chosen? Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Beth Armstrong, son. Patron Saint, Matthew. Marjorie Forrest, daughter. Patron Saint, Celia. Carrie Rutledge, twins. Patron Saint ... give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles. "Give her a preemie."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'mama' for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."

Wednesday, July 3, 2013

The Long Babyhood

One of the biggest misconceptions I find about preemies is that they’re like other babies, just smaller.

Preemies aren’t at all like full-term babies. Sometimes they come home on oxygen and heart monitors. They go to extra doctor’s visits and checkups. Preemies often have digestive problems—most of the ones I’ve known have had to take medicine for acid reflux, for example. The fear of RSV (respiratory syncytial virus) is real, and parents of preemies often have to keep them at home and out of public until their immune systems strengthen. With my son I felt that so many people didn’t understand how trying and difficult that six months was for us when we wanted to see people, live in the outside world, and show off our baby. But, when you have preemies, your first priority is to see that they get healthy.

Preemies are usually tiny for their age. I’ve worried about my son being picked on because he’s hardly ever played with anyone his own size. A pregnant woman at a consignment sale once asked me for advice on clothing sizes, and I had to laugh before I could answer her. I have no idea what “normal” babies wear. My babies wear newborn sizes until they are five or six months old! Heck, my son still wears 18-month-old t-shirts, and he’s nearly three!

Both my babies were four, five, six months old and trapped in bodies that didn’t move. My son didn’t roll over or sit up on a timeline that was even comparable with his adjusted age. He skipped crawling, and he didn’t walk until he was 17 months old—and he’d had physical therapy for nearly a year. You have to learn to alter your expectations to the reality of your child. It’s not fair to expect them to grow and develop as a full-term baby because they have had an abnormal entrance into the world. Growth and development varies so widely that your best bet is to challenge your child based on a realistic timeline, and I believe therapists are excellent at helping you set those goals.

Preemies don’t mind noise and light because that’s what they’ve known in the NICU. My daughter preferred to be awake at night, a fact we didn’t learn until her first night at home. Very kind people advised us to expose her to daylight and noise to help get her on schedule. The problem was that she slept best when it was noisy and bright because she was accustomed to a NICU environment. In fact, my son went through a horribly fussy period soon after he came home from the hospital. I attribute it to several things, but one of them was that he went from the bustling hospital environment to a boring, quiet home. I couldn’t possibly recreate what had become normal for him, and he really struggled to acclimate.

Preemies have been separated from their parents and cared for by an army of people. That fact really bothered me with J because I was supposed to be his mother, and every night I went home without him. No matter how hard you try to bond, it’s just not the same when you don’t spend every waking moment with your baby. One of the hardest moments in the NICU with my son was when I realized that his night primary nurse knew him better than me. When I reflect on the sadness I felt in that moment I still, three years later, want to ball my eyes out. My NICU babies didn’t care to be rocked, because they were hardly rocked in the NICU. It was easy for me to put them in their own beds with no singing, rocking, or breastfeeding at bedtime because I didn’t do any of that in the NICU. My son was so independent. He didn’t really need me for his first two years, just as long as someone was caring for him—or so it felt. I believe I was the very best mother I could have been, but I didn’t feel like we bonded until after his first year when he could interact with me.

One of the hardest differences—and also one of the most special—is that a preemie is a baby for a really long time. I didn’t sleep through the night for a single night for six months with my son. When we had my son’s first birthday party, he wasn’t able to eat cake, a seemingly trivial thing that made me really sad. He was barely eating baby food. He was wearing 6-month clothes and had only recently learned to sit. I remember thinking how weird it was to celebrate a first birthday for a child who really was still a baby. 

My daughter is six months old, but she’s wearing 0-3 month clothes, she’s just now learning to roll over, and by most measures, she’s still a newborn. A few weeks ago, I took her out of the house to run an errand for the first time, and people stopped me to ask how old she was. I could tell they were a little shocked, because what brand-new mom has a pressing need to rush to Home Depot for a wreath holder with her newborn and a toddler in tow? They were even more shocked when I told them her age. This is a difference between my children—it took too much energy to explain it all to strangers with my son, but now that I have two preemies, I take pride in their unique journeys.

My babies are tiny and needy and adorable for a LONG TIME. I can’t relate to people saying that the first year goes by so fast. For me, it doesn’t at all. My babies take forever to do anything. But, there is also something magical about it. My best friend told me with my son that I was getting to preview him three and a half months before his due date. What a preview and not always a good one! But, one way to look at it is that you’re with your baby way before you should be, so you do get to witness them go from TEE-NINY to big kids.

That first year with a preemie can be so challenging, but isn’t that a fact of life? We all have moments that test our endurance and resolve that usually serve to make us more resilient. Now, when my son calls for Mama or when we lie in his bed and sing songs at bedtime or when he tells me he loves me “BIG!,” I treasure it because we have come a long way from me being a new mother with a tiny baby. My experience with my son also makes it easier with my daughter. I think I’m more patient about giving her the time she needs. I know she will be my baby for a really, really long time, but M is my last biological child. I see it as I get to savor this long babyhood.

Tuesday, July 2, 2013

Then and Now

I don't want my kids to Google their names in ten years, and a blog comes up with stories about how fragile they were with pictures of their suffering. So, I don't use their full names on here, and I probably won't share loads of pictures. But, today is a celebration of sorts because my daughter is now six months old, and soon my son will be 3. They are both so adorable and funny and HEALTHY. For moms just starting this journey, I know you dream of big, fat babies and wish with all your heart that your tiny baby you can't even touch was chubby and huggable. I used to wonder if my day would ever come. Now, I look at these two beautiful children, and yes, my day is here! So, as some encouragement, here is how my tiny babies started:

Miraculous, isn't it!!

Monday, July 1, 2013

Opening the Journal

Last night, I finally got the courage to read the journal I kept while my son was in the NICU. For three years, I've avoided it, but it wasn't as painful as I thought it would be--probably because we just spent another two months in the NICU. For some reason, the first NICU stay was terribly traumatic, while the second stay was difficult but in a weird way also like a reunion. We had so many more friends there the second time, and the doctors and nurses treated us with respect, probably because we were on our second tour. And we were much more patient and understanding of the routines of the NICU and all the waiting you have to do.

So, the only part of the entire journal that really got to me was reading my very last entry:

"Oh, you sweet little boy, I can't even begin to think about all the things we'll do together and all the fun we'll have because it breaks my heart to wait even one more day. I hope you know you're loved, that we only want what's best for you, and that we can't wait to show you life is so much more than the inside of a hospital. Let us pray today is the beginning of the end because I am just raw with missing you. Love you, Angel. --Mom"

J came home six days later.

If you can bear it, keep a journal while you're in the NICU. I think we did an even better job with my daughter, but we tried to document all the high and low points for both kids. We even kept a tally of their weight day by day and a list of all the nurses they had. I hope their journal is a window into their beginning for them, and while they were in the hospital, it gave me an outlet to express some of my hopes and fears and also to keep busy while I was sitting by their isolettes.

Even if the NICU stay is gut-wrenching, you can take however long you need before you open those pages again. Maybe you never do, but I think a journal gives our preemies an invaluable understanding about where they come from and why we are the way we are as parents. Are parents of preemies still a little different when their kids are big? I don't know. But, I know I'm a different person from the woman who started this journey three years ago, and I hope for my children that the journals I kept for them will be a reminder of my love for them, even in their earliest days when they didn't weigh as much as a bag of grapes!