The Giving End

I just gave away 650 ounces of breast milk. Before the week is over, I’ve committed to giving away 1500 ounces. It has been one of the most moving things I’ve ever experienced, and it’s also much harder than I ever anticipated.

My son never thrived on breast milk alone, but I was able to give him about half milk/half formula for his entire first year. He is phenomenally healthy–this last year he didn’t go to the pediatrician for a sick visit. At all for the entire year. It is beyond what I ever imagined for him. Because I was unable to do so many things for him, I’ve hoped that at least my milk helped him develop a strong immune system.

My daughter has been a different story. She was fine until she was about two months old (and two weeks from her due date). She had a reaction to the fortifier they add to breast milk to increase its calorie content. Then, she was unable to take any formula supplement and finally even my breast milk, probably because of a milk protein allergy. So, after a dairy-free diet failed to work and we discovered that soy too was a problem, we put her on a special formula mixed at a higher concentration to help her grow and gain weight. Thousands of ounces of breast milk just sat in the deep freezer.

I’ve just started trying to reintroduce her to a small amount. Our pediatrician said that she will get the immune benefit from just several ounces of breast milk a day, so I’ve made that our goal. I’d love it if she could take more, even up to half of her feedings like her brother did. But, in the meantime, I’ve started to worry about all that milk just sitting there. What if our deep freezer shuts off (as it has in the past) and we lose it all? What if I wait too long, and donors and milk banks don’t want it? What if my daughter never takes any of it, and I’ve hoarded it for no reason?

So, I posted on a Facebook page meant to match up milk donors and recipients, and within hours I was swamped. I had 14 requests in 24 hours, nearly all of them with a heart-twisting story about why they desperately need milk. One mom has polycystic ovarian syndrome and doesn’t produce milk. Another isn’t producing enough for her preemie. A couple of moms have adopted babies and want them to have the same health benefits as other nursing babies. The most moving was an adoptive mother whose 13-month-old was born as a preemie addicted to drugs with numerous side effects. The little boy can only tolerate breast milk–if he doesn’t get it, he will have surgery to implant a tube into his gastrointestinal tract to bypass the nutrition past his stomach. The mom has even undergone hormone therapy so that she produces a small amount of milk, but the bulk of his nutrition has depended on milk donations for the last year.

I feel overwhelmed by the need, by the stories, and by the conflict going on inside my own head. On one hand I want to give all that I have to give, and more. But, on the other hand, I have this compulsive need to stockpile the milk and to safeguard it for my daughter, even though there is no guarantee that she’ll ever eat it. I am overcome with the gratitude of women thanking me for just considering donating–not to mention the love I have received in return for sharing my milk. It is truly one of the most amazing and surprising things I’ve ever experienced. It’s like I’m donating a kidney or something! And yet, I look at my daughter, and I hope I’m not shirking her.

I know I’m doing the right thing. I know it. And I’m so thrilled to see my milk go to good use. I love the fact that a series of unfortunate events collided, bringing me to some wonderfully kind strangers who love their babies as much as I love mine. It has been a blessing for me to see some of my disappointments turned into gifts of love to other babies. But, after all I’ve been through emotionally with these two babies, how in the world can something I thought would be so simple and so easy be so emotionally draining?

A good friend of mine said this is proof of how we’re all connected. Sometimes, we are fortunate enough to have just what someone else needs, and I’m so glad to be on the giving end.

M’s Birth Story

I keep flashing back to a moment of desperation when my son was five months old, and life with a preemie was stressful. It was Christmas Day, and I was walking in a dusting of snow talking to my best friend on the phone. “I cannot EVER do this again,” I whined. And she told me that this time in my life wouldn’t last forever. She was right. I had several more long months ahead of me, but things did get better. So much better that my husband and I considered having another baby.
I wanted my son to have a sibling, and I had always thought—before I had a preemie—that I’d have three children.
And as much as I adored my son, I wanted a little girl too.
It didn’t take long before we leaped off of a cliff on the faith that another pregnancy would be different from my son’s when I unexpectedly had him 14 weeks early.
It was different.
The first part was easy, just like with my son, and at 13 weeks I started seeing a high-risk doctor, who monitored me for signs of early labor. Every week, I had an internal ultrasound, and I saw my baby on an incredibly clear flat-screen TV. And one advantage of the weekly visits: I found out at 15 weeks that I was carrying a baby girl!
I resolved not to worry between appointments, and as one week blended into the next, I began to relax. Once we passed the 26-week mark when I had my son, I told my husband that at least we wouldn’t have a repeat of that horror of having him so early. Christmas came, and in all the bustle of the holidays, I didn’t pay much attention to the swelling in my feet. I had to start sleeping propped up so that I could breathe, but since I’d never made it to my third trimester before, I blamed my baby’s growth spurt for it. What a cruel joke! It turns out M was growth-restricted and probably hadn’t grown after Week 26 or 27.
We went to spend a few days with my husband’s family in Texas after Christmas. I felt really big and bloated and tired, none of which is much of a cause for concern in your 7th month of pregnancy. My high-risk doctors had seen me just before the trip and okayed me venturing out of the state one last time. But, after a few days in Texas when I couldn’t put on my wedding rings any more, I started having a nagging feeling that something wasn’t right. The only time in my life when I’ve swelled at all was after my C-section with my son. Finally, on the evening of December 30, I asked my mother-in-law for a blood pressure monitor, and I was shocked by the reading. Normal blood pressure is around 120/80, and high blood pressure in pregnancy is 130/90. My blood pressure was 185/105, which is stroke-level. Given that I was pregnant and had no prior history with high blood pressure at all, I knew this was really bad. I called my regular OB, and she told me to get to an emergency room immediately.
I cried.
I cried because I knew.
I knew because I’ve had things go haywire with a pregnancy before, and though the circumstances were totally different, the feeling was the same. I was on a high-speed train racing out of control, and I knew it was headed off the tracks. I knew we were going to have another preemie. And I cried out of that feeling of dread and defeat and fear you feel when you know your health is in jeopardy and your baby’s health hangs in the balance.
On the way to the hospital, my husband held my hand, and we gave each other a sad look but didn’t say much.
It didn’t take long to confirm that I had preeclampsia, and the test results showed it was severe. There really was no chance that we could stop it or change it. The doctors and nurses just tried to stabilize me in the hopes that we could get back home and to a familiar NICU. For that night and the whole next day, I laid flat on my left side to promote blood flow to the baby and reduce my blood pressure. The doctors were so kind. They kept checking on me with the intent to get me home if they could.
My husband and I rang in the New Year in the hospital. Afraid. Away from home. And wondering what in the world we’d do with a baby in the NICU in a different state. All I prayed for was to get home. I knew we’d have M early. I knew she’d be small, and I knew she’d be in the NICU for a while. But, I just didn’t want our family to be separated with my husband and son at home and me in another state in the hospital with M.
Around 8 a.m. on January 1, the doctor on-call came into my room, and he pulled a chair up to my bedside. He said he’d woken up thinking about me and my situation. What would he want for his wife? He said that my blood pressure was steady and that I had a short window of time before the preeclampsia took over. He wanted to release me with the understanding that I would drive the eight hours straight to my hospital at home. I still feel amazed that given my diagnosis, a doctor would do something so radical and so unlikely and so incredibly kind.
Our family loaded our stuff into our car, and the hospital released me. We spent January 1 racing across a few states. I’ll never forget that trip for many reasons, only one of them being that I knew I’d never be pregnant again. Another lovely pregnancy was coming to an abrupt and unlikely end. As I walked out of a rest stop, I held my belly and thought, “I’ll never be pregnant again, and I’ll remember this moment and what it feels like forever.”
My parents met us at the hospital, and they took my son to our home. I actually felt pretty good that night and most of the following day. When they weighed me in the hospital, I told them their scale was broken, and I meant it. I had gained 20 pounds in 29 weeks of pregnancy, and then in one week I had gained 20 more. I looked puffy, but even the doctors said I didn’t look like most women with preeclampsia. I wasn’t flushed. I didn’t look swollen. And after days of liquid diets, I was scarfing down food and chilling out on my left side, watching TV to pass the time.
That day I had the last of many ultrasounds. There she was, the tiny star of the show. And she was tiny. They estimated she was about three pounds, and she was so low on the growth chart, that they deemed she had not been faring well while my blood pressure was high. The free flow of nutrients into the placenta depends upon healthy blood pressure, so I was starving her, even as a horrible witch of a charge nurse told me I should pray for my baby who would be in the NICU until her due date. As if I could do anything about my situation, and as if I hadn’t already had a preemie in the NICU for 91 days! There is just nothing nice to be said about someone who judges other people during a health crisis.
In a matter of hours, I went downhill quickly. My body had given subtle warning signs for about 10 days, but all of the sudden I felt my body fall apart. I was tired. My blood pressure was outrageously high and uncontrollable. My head felt like it was splitting, and all of the fluid that had accumulated in my abdomen was pressing on my lungs so I couldn’t breathe. My body ached from lying for so long on the left side, and as they started pumping me full of magnesium sulfate and labetalol for my blood pressure, I knew we’d reached the end. In fact, I begged for the C-section because I was starting to get really scared.
My first C-section was unfortunate because I was asleep and missed the birth of my son, but my second C-section was unfortunate because I was awake! I consider myself to be tough, but it’s unnerving to feel people cutting on you and to hear them discussing how they can’t get the baby out the original incision because of excessive scar tissue and how they’re making an additional incision. But, it was worth the odd sensations because I heard M cry. She sounded like a kitten mewing, but I was there to hear it. And my husband witnessed her birth. Her parents were there to welcome her to the world.
I asked my husband how big she was. Three pounds? And what day was she born? Did I make it to 30 weeks? Nope. She was born less than an hour from the 30-week mark, and she only weighed an ounce more than our son. Another 2.5-pound baby.

I wish I could say my children’s births were beautiful. They were terrifying. They were the worst days my husband and I have survived to date. I really hate that. But, they were also spectacular for one simple fact. Our tiny babies lived. Both of them. And that is beautiful.

The Simple Things

I follow a blog of a woman who had a 25-weeker several months after I had my first preemie. Her daughter had so many scares and such a long journey that it made me grateful for our own 91-day NICU stay. I was so emotionally invested in her daughter living. Sometimes, it was like I could actually feel the pain of her words.

It’s like a woman who almost lost her twin preemies said to me today, “You don’t know stress until you’ve had a baby in the NICU.” Once you’ve been there, it takes so little imagination to go right back.

Anyway, back to the blog I follow. One of her recent posts was about how tough she is about some things–like medical procedures–that should be traumatic, but then she cries at seemingly mundane moments in her daughter’s life. I knew exactly what she meant! I’ve had to hold both my babies down for a variety of shots and exams, and I always kept my cool. But, I’ve teared up more than once just watching J run across the yard. Because he lived. Because it took months and months of physical therapy. Because he looks so normal now. I know every mom thinks her kids are miracles. They are. But there is just something different when you’ve worked so hard for every milestone. Sometimes, I just stop everything I’m doing. I look at him, and I celebrate where he is right now. I mean he was 2 pounds 34 months ago, and now I can sit on the deck and watch him run.

RUN.

For this, I am so grateful. Before J, I never appreciated the simplicity of walking, talking, eating, and drinking. We are all miracles. But, when you’re a NICU Mama and you’ve come so close to losing everything, the simple things just aren’t so simple.

The Two-Month Screaming

M is nearly five months old, and she was terribly fussy last week. In most areas of development, I think she’s about at 10 weeks old. My son went though a month of screaming at night, and my husband and I learned that his problem was being overtired and not knowing how to soothe himself. He simply could not relax and fall asleep. His arms and legs were jerky and fidgety, and we tried everything to wind him down at night. The only thing we found that even remotely helped was putting him in his carseat, plopping it into the stroller, and pushing him around and around our house until he fell asleep. I know every parent has stories of the ridiculous, so you can relate. But, how silly is that, pushing your baby in a stroller around the house for hours at night?! I think part of his problem was that his mind was far less delayed than his body, and I think it didn’t help that he’d recently come home from a busy, bright, and loud NICU environment to a quiet home. But, more than anything, he was just overtired. He still has a tendency to sleep less the more tired he is–sleep experts say this, and even though it seems counterintuitive, it’s so true for him. So, this time around, I told my husband that M probably just needed a bedtime and a regular sleep routine in her own bed. When babies are tiny, it doesn’t seem to matter to them whether they’re in a swing or a pack-n-play or a bassinet or a crib, and it doesn’t seem to matter what time of day it is. Sometimes, M would fall asleep in her bouncy seat while I was cooking dinner or in her swing while I was playing with J, and all her naps were fairly short and random, just whenever she happened to be sleepy. But, suddenly it very much mattered to M where she was and what time of day it was. Last Wednesday, she went nearly 12 hours with only one 45-minute nap, and then she screamed and screamed at the end of the day because she was WAY overtired. (I think I did some screaming and crying of my own that day too.)

I’m sure most babies go through a similar transition, but one thing I’ll most likely never know is if it’s different with preemies. Is it harder for parents of preemies because we never know exactly where our kids are developmentally? Are NICU-grads more likely to favor loud, bright environments because that’s what they know? Is it harder for preemies to get used to a quiet home environment? Or is this really more my parenting and my babies? All my pediatrician could tell me was that most babies have a peak in their crying around two months, so I figure that’s probably true for my babies too, if you correct their age for their prematurity.

The good news is that last night I had both kids in bed by 7, and the house was so quiet and pleasant. And both kids woke up this morning so happy. Isn’t sleep amazing!

The Gray Area

Today, while I was observing my son at his preschool, I had a conversation with a mom of twin preemies who also attend the school. Born at just 24 weeks, they were given little chance of survival. In fact, the mom told me that the cut-off for intervention at that particular hospital is 24 weeks. Had her babies been born just two days earlier, the staff wouldn’t have tried to save them–and they told her that. I was struck by the absurdity of such a policy! I was surprised they didn’t offer to transfer her to a nearby hospital that would intervene, because a couple of excellent NICUs in the area do take babies at 22 and 23 weeks. Each hospital has a protocol for deciding when to intervene. At some point the likelihood of a baby surviving is so minimal and the fight for survival is so painful for the baby that doctors and nurses believe it’s not in the best interest of the baby to resuscitate, and since babies that tiny cannot breathe on their own, they simply can’t survive. I’ve seen babies struggle in the NICU, so I understand. And the reality is that even with the best medical advances available, there is a point when a baby simply cannot survive outside of the womb. But, then you see 24-weekers who are healthy and strong at age 2, and you wonder if drawing a line in the sand isn’t misguided. Shouldn’t it be based on the health of the babies? If a baby born at 23 weeks and 6 days is healthy and capable of being stabilized, shouldn’t that baby get a chance at life? I know the dividing line between death and viability outside the womb is a gray area somewhere around 22 weeks, but I’d hate to think that a child that could survive wasn’t even given the opportunity. And as with so many medical ethics questions, it feels so much like playing God to decide who should live and die.

I don’t even know exactly what the right answer is. All I know is that I’m so thankful both my preemies made it past that gray area, and I’m so grateful for their health. I was overwhelmed looking at not one but two healthy toddlers who but for a few hours might not have lived. NICU stories never fail to be miraculous!

Mothering on Mother’s Day

Today is Mother’s Day. Most days, I am overwhelmed by poopy diapers and cleaning up toys and fitting in chores between caring for two little ones. But, today I am overwhelmed by gratitude. A mother gives birth to a child, but not all mothers get to actually mother. Some mothers lose their babies, some mothers are separated from their children, and some mothers choose to let others mother.
So, my individuality is languishing. My hobbies consist of watching TV while I do a chore and falling asleep on the couch while I watch TV. Gone is reading, gardening, cooking, and spending time with friends; those all take time and energy I don’t have. My world’s axis is my children; nearly everything I do in a day revolves around them. But, this is such a fleeting phase in life. It’s a shame you’re too tired to really appreciate all the miracles that happen everyday.
When my children were in the hospital, I lamented that the care I gave them was a fraction of their day; it was the nurses mothering my babies. So, today when I’m up to my elbows in poop—maybe literally?—I choose to be grateful for the mundane. We often take for granted what we’ve come to expect. Three years ago, I was a different person, but now? Now, I just can’t believe my good fortune because I have two kids waking me up at night, and even though I’m exhausted, I’m thrilled to be doing their mothering. I’ll cling to that thought at the next 3 am feeding!

The Beginning

My pregnancy with J was so easy: no morning sickness, no major weight gain, no diabetes, no risk factors for anything at all. I loved knowing I was carrying a new life. Every ultrasound was thrilling. During the first ultrasound, I remember being amazed that something so tiny had a heartbeat. The whole world was shifting, our priorities were changing, our lives were being irrevocably reshaped. We bought our first house; we moved to a new state; we bought some baby furniture. I took long walks, just my baby and me. My mom said something almost prophetic when I was four or five months pregnant. “I hope you don’t have problems later on because the first part has been so easy.”
We had lived in our new home in a new city for six weeks when I started feeling pressure. I thought about the next three months. How would I survive it if I already felt so uncomfortable? I was naïve, and I had no idea that things were spiraling out of control.
Two days before my son was born I went for a check-up. Everything seemed fine, and I didn’t complain about how uncomfortable I was feeling.
Saturday morning we went to the Farmers’ Market, but by the afternoon, I was feeling off, odd, and really uncomfortable. We canceled our dinner plans, I researched contractions online, and I took a bath to relax. I also hydrated myself, thinking maybe I had just gotten dehydrated in the summer heat. At dinnertime, I just knew something bad was wrong. I packed an overnight bag. I called the doctor, and we hurried to the hospital. The ER lost my paperwork and failed to rush me to labor and delivery until my husband complained. By the time they started monitoring my contractions, it was about 10 pm.
They didn’t tell me something I didn’t already know. I definitely had contractions. In my heart, I knew they were wasting their time hydrating me, but I hoped the muscle relaxer would help. After an hour or two, I thought the contractions were better because I couldn’t feel them. My husband, who could see the monitor, told me they weren’t.
When the nurse finally checked me in the wee hours of the morning, I could tell she was upset. She hurried off, saying she was calling the doctor, whom I met for the very first time in the middle of the biggest health crisis of my life. She told me the news. Not only was I dilated to a 3 out of 10 but my son was breech. His foot was actually pushing the sac through the birth canal. I was at risk of his foot breaking the sac, allowing the amniotic fluid to rush out and pulling parts of him with it. He was in immediate risk, and an emergency C-section was our only option. They tilted the hospital bed until I was practically on my head to use gravity to keep my son inside me. The anesthesiologist consulted with the doctor, and they decided there was no safe way to give me an epidural or a spinal block. They would have to put me under. This meant that not only would I miss our son’s birth but also my husband would be alone in the waiting room during the surgery praying for both of our lives.
I was 26 weeks and 4 days pregnant.
I was beyond terrified because it wasn’t just about me. I had no way of knowing how my son would tolerate the surgery. Would he even live? Everything moved so fast, with me signing waivers, talking to doctors and nurses, and being prepped for surgery that I didn’t have time to call my parents. As an after-thought I told my husband to call our parents and my best friend and give them the middle-of-the-night shock everyone dreads: someone you love is being rushed into emergency surgery. My poor Daddy threw on clothes, hopped in the car, and left my mom and sister at their house because they were taking too long; he shaved nearly an hour off of a four-hour drive.
Everything was such a blur that I didn’t even tell my husband I loved him. On the operating room table while I waited for the anesthesia, I begged my nurse to tell him I loved him because I was afraid I might not wake up. I’d never even had major surgery before. As we waited for me to drift off to sleep, the anesthesiologist started stroking one of my cheeks, while the nurse anesthetist patted the other, and I will always be grateful for that kindness, that human touch during a dark time. I was staring into their eyes, and then nothing.
I woke up enough to ask if my baby lived. The answer was yes. Thank the Lord! I asked where my husband was—he was on his way into the room—and then I fell asleep again.
The next thing I remember was being roused to see my son before they transported him to a NICU 20 minutes away. I was mesmerized by his tininess. I had never seen anything like it. He was a kitten in a glass box. I looked at his miniscule hands and feet, the size of my fingertips. I studied his face, his dark hair, the length of him, all 13 inches. I looked for myself in him and only found my husband. “How unfair!” I joked with him, a moment of joy in a sea of sorrow. And then they whisked my baby away, no cuddling, no touching, no more of his mother’s love. I didn’t see him for another two days.
It was the beginning of his 91 days in the NICU.