Breastfeeding: A Plea For Kindness

I support breastfeeding. I really do. I thought I’d breastfeed my children until they were a year old.

I was wrong.

Very, very wrong.

And I can’t help but get a lump in my throat when I see campaigns to encourage breastfeeding. I know breastfeeding advocates have their hearts in the right place. I know the moms who like pictures of breastfeeding groups on Facebook have the best intentions.

But what does it make me?

I could not have tried harder. I pumped 50 ounces of milk a day for the five months my babies were in the NICU. And I paid dearly for all that pumping with terrible knots that formed scar tissue, pushing me to the brink of mastitis again and again.

When moms complain about breastfeeding, I keep these thoughts to myself, because we all have our crosses to bear. Just because I couldn’t nurse doesn’t mean I should fail to be sympathetic to a mother who says she can’t get any sleep because the baby wakes every two hours to breastfeed. Or because she can’t go anywhere without her baby who is very literally attached to her. Or because she can’t eat or drink anything without thinking of her little one. I know breastfeeding can be terribly inconvenient. And I do care. I would never want someone to keep those thoughts from me because I might have deep-seated sadness about so many things that were out of my control.

It’s just that breastfeeding is an incredibly painful topic because it represents all that wasn’t. My babies weren’t born big enough to breastfeed…for months. I couldn’t hold them and nurse them in the comfort of my home. We didn’t bond over nursing. For us, nursing was challenging, precious minutes spent trying to get it all right before the baby got too hungry, or had a spell, or fell asleep. For us, nursing was a public activity done in busy NICU rooms behind a thin curtain with plenty of people to witness our failures.

I lived to breastfeed at home. I told myself that if I just kept at it, one day I would nurse my babies. I pumped, day and night. I cried many, many tears. I was in pain. I met with lactation consultants. I took herbs. I watched everything I ate, not just for its nutrient value but for any chance that it would discourage my production or irritate tiny bowels. I know I did everything in my power to ensure my babies could nurse at home.

With J, the stress of bringing him home after a 3-month NICU stay was just too much. He lost weight his first week at home, and his pediatrician discouraged us from nursing so that we could monitor each milliliter he ingested. Finally, after a month of me pumping around the clock, feeding a baby out of a bottle, and then washing all of the equipment involved, just to do the double set of work all over again two hours later…finally, we were cleared to breastfeed. And what happened? The woman who had been a Bessie cow producing huge volumes of milk…I dried up. My body quit on me. (Again.) I believe it just couldn’t handle any more stress.

I try to encourage other NICU moms to forgive themselves when they have trouble pumping. It’s so unnatural, and our bodies are already under so much stress. You just do the best you can, and then try to forgive yourself for the rest.

But, I know my advice is a bitter pill to swallow because I’m still choking on it.

Unlike J, M was a great eater, and the nurses said she would be our breastfeeder. She latched on the very first time we tried, when she weighed less than four pounds. She was tiny and amazing, and I will always cherish that moment. It wasn’t long after we’d established a routine of me nursing her once a day in the hospital that she started having terrible diarrhea that caused an awful diaper rash. This continued for two weeks before we removed the high-calorie fortifier used to give my breast milk additional calories. After that, all dairy products became irritants. During her first days home, we were still battling the diarrhea, and her resulting weight loss, until I removed all dairy from my diet too. When she remained sick, we learned that soy allergies often accompany dairy allergies, and I was taking soy lecithin to loosen all of my blockages. I simply could not remove it from my diet too. I cried and cried because it seemed so unfair.

Over the course of three weeks, I let my supply drop until I had no more milk. It was a bitter time because I’d already received advice from my doctor to have no more biological children, thus no more chances at breastfeeding.

Both babies did get a substantial amount of breast milk during their first year. J actually got a mix of high-calorie formula and frozen breast milk until his first birthday. I know in my head that I must make peace with the way my children were fed. But, still nearly a year after I breastfed M for the last time, I am terribly sad about it.

I’ve decided that maybe more time will bring more perspective, but I can’t help feeling that it will always be a sore subject. So, when I see people bashing moms who use bottles or rely on formula, I want to remind them not to be so judgmental. Truly, moms are lucky to be the ones to feed their babies. It is another amazing feat of the female body. But, you never know someone else’s experiences. There are some of us who can’t breastfeed–despite our best efforts. We can’t. We cannot feed our own babies, and it is a failure of our bodies that we take very personally. And we don’t need anyone to remind us to be disappointed.

Being unable to breastfeed doesn’t make me less of a mother. It doesn’t make me less of a woman. Really, it doesn’t. But, try telling me that. Try telling all of us, all the Preemie Mamas, that. We already feel so much guilt over how we had our babies. We are already so angry with ourselves for failing to carry our babies full term. We see those tiny, skinny, fragile babies when we close our eyes at night. And breastfeeding? It’s another reminder of all that we couldn’t do for our children.

Breastfeeding Mamas, we just ask that you be kind to us. Please be kind.

Why the Design of a NICU Matters

When M was in the NICU, a nurse told us that the hospital was planning a new building to house a joint children’s hospital and NICU. I was surprised because our NICU underwent a renovation not that many years ago. It’s beautiful, cheerful, and functional. I was also a little sad to think that I won’t always be able to take the kids back to their first home. I know that sounds ridiculous–of course the building won’t stay the same! After J was born, I wasn’t sure I could ever visit the NICU again, and then after we spent another two months there with M, I was sure I’d never be able to really leave it behind. It was the physical space where I celebrated so many firsts with the kids: first bath, first diaper change, first time to hold them. It’s where I learned to breastfeed. It’s where I spent hours upon hours sitting beside their glass boxes, waiting for them to grow and come home to me.

Our NICU was fantastic. Not perfect, but fantastic. I have so many glowing opinions of the doctors and nurses, of their capabilities, of all the wonderful work they do there. However, the more I learn about other NICUs, the more I realize that a serious weakness in ours was in how its space is used. It is a city hospital meant to house many babies. The space is maximized to handle babies from across the region. Our babies had bedsides in almost every nook and cranny of the NICU, so I can offer commentary on the upsides and downsides of just about every spot. M moved so many times I lost count.

I’ve heard of other hospitals where the bedsides are private. Where parents can spend the night on cots next to their baby. Where mothers can breastfeed and sing to their babies without ten other sets of parents in the room overhearing. I wonder how that would have changed our NICU journey. I had a terrible time bonding with J, and for a while, I thought it was me. Only after my experience with M, did I forgive myself a little. How can a mother bond with her baby when she’s never alone? Many days, in order to hold my baby skin-to-skin, I had to call ahead to warn the nurse that I was on my way to visit and wanted to do kangaroo care. Assuming all went as planned and we were present at a time when the nurse could get our baby out of the isolette for us, she still had to find and set up curtains–which sometimes were unavailable because they were needed at other bedsides. Even with the curtains for privacy, I could still hear people shuffling around, doctors and nurses and respiratory therapists and other parents. I could hear beeping and dinging from bedsides all around. There was very little privacy and even less peace.

That is no way to spend your first months with your baby.

There was one spot in particular in the NICU that we hated. We had been basking in the relative peace and quiet of a spot we enjoyed on one side of the hallway, when we showed up one day, and our baby wasn’t there. M had been moved, and no one had told us. Again. So, we asked a nurse, and she directed us across the hall. And there in a spot barely big enough to accommodate an isolette was M. There wasn’t room for both my husband and me to sit next to her bedside. When I did kangaroo care, we had to put the curtains up into the walkway so that people tripped on them every time they tried to squeeze past. We heard every conversation from all of the other five bedsides shoved into the corner with us. We couldn’t help it. My husband and I grumbled and complained to each other. We must have had such sour expressions on our faces that the neonatologist who had been present at M’s delivery laughed and asked if we were enjoying our new spot. “Not at all,” was the answer.

Another area we despised was intended for the babies in the weeks before they went home. Six babies were to a room. Busy nurses often bounced between the rooms, leaving it woefully understaffed in their absence. Sometimes well-baby nurses with the best intentions were sent to cover for a shortage of NICU nurses on that floor, but their care was never as skilled as the NICU nurses. Our babies were not “well babies” and still deserved specialized treatment. With six bassinets, the room wasn’t overcrowded, but during times when the NICU was at capacity, babies in isolettes were moved into the room. During one of those times, we ended up in the middle of a row of them, and we were practically at other babies’ bedsides. Talk about HIPPA violations! We couldn’t help but know everything about our neighbors. And I’m sure they knew much more about us than I would have liked.

That’s the spot where I breastfed M for the first time. (And where I shot milk across the room with J, another blog post unto itself). Not ideal at all.

Even though there was no privacy, it was so hard to meet other families in the NICU. We were all scared of HIPPA violations, so we tried to pretend we didn’t hear and see everything that happened two feet from us. Thank goodness for the parents’ meetings twice a month so that we could sometimes acquaint ourselves with some of these faces we passed everyday. How much better would it have been for us emotionally to have shared a small room with just one or two other families? How much quieter? How much more private? What would it have felt like to return to the same location day after day, week after week, month after month, instead of bouncing around the NICU? There was always a new place with a different set of nurses and a changing group of babies. It had an odd way of putting us on edge, just another way for us to feel out-of-sorts, confused, anxious during an already phenomenally stressful time.

So, as sad as it will be for me to one day say goodbye to the space that housed my babies, I think there must be a better way. I am sure that such a sophisticated NICU could divide its space to better accommodate families. And it does matter. I know a hospital must be designed to provide healthcare in the most efficient way to patients, but an intensive care built for babies must also feel peaceful, private, and comfortable too. Because it will be the place where mothers and fathers learn to care for their babies. A place where babies live for months on end without their parents. A place that will be a home for these babies as they wait for their day to leave.

I hope that whenever the new NICU is built these sorts of concerns are taken into consideration in the planning of it. I would be glad to know all those families coming behind us have a little more peace than we did.

A Window Into A Preemie’s First Year

A few weeks ago, several friends on Facebook alerted me to a video that was circulating the Internet. It’s a video montage of a preemie’s first year of life. Of all of the NICU photos and videos I’ve ever seen, this one comes the closest to really depicting our journey. As M nears her first birthday, it resonates even more.

The video is lovely, uplifting, and tragic all at the same time, just like the NICU journey. Here’s the original link, if you’re interested.

The Space Where NICU Parents Meet

Parents with babies in the NICU have such a weariness about them. It’s not just the lack of sleep; it’s the constant stress. All the worry about all the things worth worrying about. Every parent has such a fascinating story. Each parent comes from a different place in life to this common ground that we all share. It doesn’t matter your education, your socio-economic status, your birthplace, your color, your religion, your marital status, your gender. We are all NICU parents. We all have a long haul ahead of us. We all have baggage that we can’t seem to leave behind. And we stand in the middle of the emotionally-draining, frightening, lonely NICU, and we wonder if we’ll ever make it out of here. And not just here, as in the NICU, but here as in the emotional space where walking this road strands you. Having a baby in the NICU challenges everything you believe, everything you dreamed, and everything you love. It turns you inside out. Your pain is written all over your face. You feel as if people on the street must pass you by and feel sorry for you. They have to know that you’re walking around without your heart, the one you left by your baby’s bedside.

I remember so vividly that hollowness, that feeling of despair, that antsy desire to be anywhere but here and nowhere but here all at the very same time. Nothing is right in the world, and nothing is the same. Everyone has a different piece of advice, but none of them sound like what you need to hear. You are tied in knots, fit to be tied, tied down, ties flapping in the wind, hogtied. You don’t even know what you are. One minute you think you have all this heaviness under control, and the next minute you’re in the bathroom, balling your eyes out. You freeze people out, to save yourself from explaining. You wall yourself up, to hold it all in.

I wish it were socially acceptable for me go up to these NICU parents and hug them. I wish it were okay for me to kiss them on the cheeks. I have to maintain a distance, so they don’t think I’m crazy, but I want to give them some warmth to take with them throughout their cold days. I want them to know that they are not alone. No matter who you are, being a preemie parent is a test in emotional endurance. We all have good days and bad days, and then we wake up the next day to keep going for those tiny babies.

The help I can offer feels so minute compared to the depth of their pain. I wish I could do more.

Just Keep Paddling

Every time we drive downtown, I am transformed into that woman. She’s terrified, and she’s lost. Every building is unfamiliar. The landscape is one road sign, one mile marker, and one interstate exit after another defining the distance from home to the unknown. She has only lived in this strange city for a matter of weeks. She has no friends here. A family member or two come to visit and to help, but she feels so very alone. For the first time in her life, she has no community, no support network, and no friends to help her on the most difficult journey of her life. She is lost, physically and emotionally. She never expected to be here. She has no idea how to get home, either metaphorically or in reality. Life bounces from one car ride to another, one traffic jam to another, a series of moments that divide one trip to the NICU from another. The only times she feels secure is when she’s with the only other person in the trenches too. She clings to his presence.

Until the day she had to drive to the NICU by herself. She had to park by herself, walk to the hospital by herself, pass the happy people leaving the hospital with balloons and presents and healthy babies by herself, ride the elevator by herself, sign into the NICU by herself, and scrub by herself. She had to ask hard questions by herself. And maybe most difficult of all, she had to touch that tiny baby, take his temperature, and change his diaper, using just the tips of her fingers through the holes of the isolette. By herself.

And she realized that she could do it all. She could do it all by herself.

There are things in life I don’t understand, people I don’t understand, and problems I don’t understand. But, since those days, I empathize with people who feel lost, for whatever reason. I can’t diagnose their problems, I don’t want to judge their problems, and I certainly can’t fix their problems. But, I get it. What it feels like to be lost. What it feels like to have so little hope. What it feels like to wear your pain like an ugly coat.

But, what gives me more strength than anything to face the unknown is the knowledge that I faced down the fear. I overcame sadness, loneliness, anger, and loss. I can’t say it was easier or harder than someone else’s journey, but I can say it was awful. And I wish I could be a beacon of light for someone bouncing around in a skiff in a foggy ocean, wondering where they’re going and when they’ll get there. I just want to tell them to keep paddling. Just keep paddling. Don’t give up.

You are stronger than you know.

Fine

There is one thing a NICU parent wants to hear above all else. One phrase. One set of words that means everything.

“Your baby will be fine.”

And it is the one thing that alludes you when you’re in the NICU. No one can say which baby will need therapy, which one will need oxygen, which baby will go home in a few weeks and which baby will stay for six months. They can guess and speculate. But, the awesome and yet tragic part of tiny babies is that sometimes there seems to be no rhyme or reason for why one baby succeeds where another struggles.

Sure, a baby born after 28 weeks generally has a different journey than a 26-weeker. A baby at 24 or 25 weeks has a long road ahead, but so can a 32-weeker. One baby who weighs less than 2 pounds can be out of the NICU before the baby born at 5 pounds.

As a NICU parent, you want to look around at the babies going home, and you want to know one day soon that baby will be yours. But, comparing is a double-edged sword. With J, I got so frustrated about how long everything was taking him. He stayed in the NICU for an extra three weeks because he was a slow and distracted eater who could not master the NICU’s feeding schedule. (He is still a slow and distracted eater…) Now, looking back, why was I so hard on him? He could breathe. He could eat. He could maintain his temperature. He had no brain bleeds. He had no illnesses. He was small, developmentally-delayed, and fantastically healthy.

I just didn’t have perspective. I was still comparing him to what I had always dreamed. I’d be a champ at labor and delivery. I’d have a big, healthy baby. I’d nurse him right after he was born. Those were reflections on me and my limitations, not on J.

I think I wasted so much of J’s first year grieving all my dreams. I feel so selfish, but I also realize that working through those emotions and then letting them go was probably healthier than stewing on them.

What is normal? What is fine? A NICU parent often doesn’t want to hear about all the jobs they’ll have after the NICU. Just the hospital stay is overwhelming enough. They are broken, and they can’t imagine where they’ll find the strength for any more giving. But, then those babies come home, and we find ourselves giving more than we knew we had. Therapies and doctors appointments become a new normal. The routine changes, and it is sometimes very hard. But, it doesn’t mean our babies aren’t worth the extra effort.

The truth is that most of our babies will be stories of miraculous achievements, of stats broken and odds defied. Most of them will amaze us with their resilience and their resolve. They will grow up to be beautiful.

They will be fine. It’s just that “fine” means something different to us all, and sometimes “fine” isn’t what it used to be before you had tiny babies.

Tomorrow

Tomorrow will be my first day training as a NICU volunteer. Tomorrow, I will go back to the place where my tiny babies spent their collective first five months.

I’ve thought about the logistics of how I’ll get one kid to preschool 30 minutes south of us, of how I’ll get the baby to Mother’s Morning Out near our house, and of how I’ll get myself in a completely different direction to a hospital downtown–all by 10 a.m.

I’ve thought about the friends I’ll see at the NICU. I adored so many of the doctors, nurses, and therapists there. I’m excited to see some of them again.

In a weird way, the NICU is like another home, the one where my babies had all of their firsts. I know, isn’t that bizarre, to think of a hospital like a home?

But, I hadn’t stopped to think how it would feel to be there again.

I felt all of it wash over me: fear, depression, anger, defeat, frustration. I heard the dings and beeps that make up the rhythm of the NICU. The smell, that hospital smell. I could almost taste it, and what does it even smell of? Strong antiseptic?

I felt queasy.

And the parents? Only God knows what they need to hear! Some of them are lost, some of them are desperate, and nearly all of them are downtrodden. I know how they feel. But, can I give them comfort? Can I find the right words? I don’t look like one of them anymore. My eyes don’t betray a sadness. I don’t walk with the weight of the world on my back. I’m one of the lucky ones with babies at home. A fat, squishy baby and a toddler who races around the house.

But, I am one of them. I have walked in their shoes, and I want to help. I just want to help.

That’s the thing about helping, though. You can’t fix it. You can’t make it right because you can’t give them the one thing they want most of all: their baby home. All you can do is offer encouragement, support, and love, and you have to hope that is enough.

Do I have the emotional reserves to give to someone else yet? Helping is healing. I already know that. So, maybe I’m ready.

I guess I’ll find out tomorrow.

The Missing Milk

The day the NICU lost all my frozen breast milk with M was a bad day for the nurses.

The day I discovered the NICU had lost all my milk was an awful day for me.
One day I hope I’m able to offer constructive criticism to the NICU because I’d like to tell them that accidents happen because we are human. But, more accidents happen when the nurses are overloaded. Accidents can be deadly, but they are most egregious when they’re preventable and they happen to babies.
Losing breast milk wasn’t necessarily deadly to M, but it called into question her care.
This is what happened:
The highest floor in the NICU is for the healthiest babies. Occasionally, nurses trained as well-baby nurses for full-term babies were called to serve on that floor. I realize that adequately staffing for dozens and dozens of babies, all coming and going at their own pace, must be a nightmare. But, our experience was that no matter how well-intentioned and otherwise skilled well-baby nurses were, they were no replacement for NICU nurses. For one, the equipment was a challenge for them. M’s nurse one day didn’t know how to operate the temperature on her isolette. I walked in to an agitated, red, overheated baby. This was the same baby we were only allowed to handle for short times because we had to fear overstimulating her. I’m pretty sure overheating her did nothing for her. I was by myself at the NICU that day, and I called my husband, crying, “The nurse is frying her!”
I tried to help the nurse with the bed. I had spent hours by M’s bedside, but I was no expert on how to program an isolette. My baby’s nurse should have been. M had just moved to that floor, and the NICU was at its highest capacity. Ever. As in, they didn’t have enough bed spaces for babies. My baby was still tender enough to be in an isolette, and I believe she deserved a nurse who understood how to operate her bed. Nothing like that ever happened with J.
When we moved to the new floor, I carried a plastic hospital bag full of frozen breast milk with me. This milk was from M’s earliest days. Bottles and bottles of beautiful, golden colostrum, which my tiny baby desperately needed when we were trying everything to facilitate her growth. So, I carried the milk up myself, but a few minutes later we had to leave the NICU to beat rush hour home. The last time I saw the milk, it was lying on a table waiting for a nurse to put it in the freezer.
The next day I asked M’s nurse why bottles of formula were on the table beside her isolette. “Just in case,” she said. As she walked off, I called, “Just in case of what?” I was producing more than 40 ounces of milk a day. Every time I was at the hospital, I left a day’s worth of milk, and a whole bucket full of frozen milk was in the freezer.

The next day when I arrived at the NICU, the nurse was feeding M a bottle of formula. After all the nights I lost sleep while I was pumping. After all the hours I spent each day attached to that infernal machine. After all the time I listened to that stupid whirring pump, like I was some cow. My eyes felt like they might pop out of my head. Or I might start crying uncontrollably right there. Instead, I tried to solve the problem. “Why are you feeding her formula?” The nurse looked like a deer caught in headlights. “Because she ran out of milk this morning.” I felt like crying again. “Why didn’t someone tell me?!” She apologized, but I was completely confused. I stumbled on, trying to piece it together. “But, I don’t understand. I leave milk everyday. She only eats a few ounces a day, and I produce more than 40. There is milk in the freezer. There’s no reason to feed her formula.” That’s when she told me there wasn’t any milk in the freezer. I was incredulous. “Two days ago, when M moved up here, I brought all the bottles of milk up here myself.” She checked the freezer again. Another nurse checked the freezer. A nurse checked the freezer downstairs. The charge nurse checked the freezer.

There was no milk. I think my milk sat out, thawed, and was thrown away. I think someone knew it. A whole bag full of labeled bottles doesn’t just disappear. I’m sure it was an accident, and I forgave that. What really shook my confidence was that no one told me. All it would have taken was one phone call to identify the problem, and no one had the time to call me.

What if the mistake had involved medicine? Or what if the mistake had been over oxygen? What if she’d had a reaction to the formula? Would someone have told me?

I wasn’t so sure anymore. And leaving a baby behind day after day after day requires trust.

During those weeks, there were times when we called the NICU to check on M. No one answered the phone. No one had time to answer the phone. For hours, we’d call, and no one answered. Do you know what that will do to a mother who has to leave her baby behind?

The worst days where when the nurses had four babies. Four preemies with a range of challenges and complications. FOUR. There were six babies in the room. When the nurses had three babies, two nurses were present in the room. When they had four babies, the dynamic totally changed. One nurse was split between two rooms, so when both nurses were preparing bottles or getting supplies or out of the room for some other reason, we’d look up and realize we were in a room with six preemies and no nurse. That’s unacceptable. As a parent, that instills no confidence whatsoever. As a nurse, I cannot imagine what that 12-hour shift must be like. It’s not fair for anyone.

We spoke with a head nurse who assured us that these problems wouldn’t happen again. We did it in a calm and respectful way, but we were adamant. And things did get better. I’m not in healthcare, so I don’t know what the answer is. I just know that nurses having four babies in a NICU is awful for everyone involved.

And the missing milk? We never heard from it again. Every time I open our deep freezer and pull out a bag of milk for M, I lament that golden colostrum that probably spoiled in a trash can.