The NICU Perspective

I would never wish my NICU experiences on any parents, even those whose priorities seem so unbalanced that they could use a good shaking. I also would never, ever wish my experiences away, because so much of what defines my little family is wrapped up in it. My husband and I were fortunate enough to have a happy marriage before our babies; we genuinely just like each other and enjoy our time together. But, now we have this whole volume of experiences, some dark and gut-wrenching and others that are ridiculous and hilarious. This volume unites us. We have despaired together and come out on the other side, and we know it. I also feel that having such tiny babies has given us an appreciation for the mundane and boring, like a quiet day at home with healthy kids. Before the NICU, maybe I would have been restless, but after I became a different person, I feel blessed to have a whole beautiful, quiet, peaceful day ahead of us. That kind of perspective has changed everything about my husband and me, and I hope it will translate to our kids. I hope that they will feel loved and cherished in  a way that only parents who believed they would lose you could. I want them to know that not only are all God's creatures blessings on this earth with purpose and gifts to share, but they are unique miracles with a reason for being. When you have a 2.5 pound baby and you see the miracle of such a tiny living being right there in front of you, you have no choice but to reassess your priorities in life. For all that, I am immeasurably grateful.

But, with that perspective also comes an impatience for some of the insipid things I hear parents say. They complain about things like not nursing their baby immediately after birth or about their doctor not following their strictly outlined birth plans (as if babies are even aware of a prescribed birth plan). They complain about mothers-in-law who helped too much or too little with their babies, or they fret about having a boy when they wanted a girl, or vice versa. They complain about working mothers who never see their babies or stay-at-home moms whose lives depend on their kids. They complain about other mothers who nursed too long or not at all.  And this is just in the child-bearing world. Goodness knows what I will discover when our kids are in school! I hope that I'm an empathetic person. I sincerely try to hear out the fears of others and to give them a listening ear when I have no other solutions to offer. It's just that I can't help but wonder if people knew my perspective would they keep yammering on about things that seem like minor complaints to me. Are we so removed from our parents' and grandparents' generations when many women died in childbirth and many more babies died in their first year of life? Have we forgotten that life is tough, that it has always been tough, and that only the toughest and luckiest human beings survive life's challenges? I try so hard to be patient, but really I am appalled. At the end of the day, if you had a healthy pregnancy and a healthy baby, haven't you hit the jackpot? If you're loving your baby to the best of your ability, shouldn't we all be supporting you on your parenting journey whether it's breastfeeding or formula you choose? Sometimes I wonder where the kindness has gone, why are we not more grateful and less judgmental. And why are mothers the most critical of other mothers when they should be the most supportive?

I don't know what the answer is. All I know is that sometimes I have to mentally stand on my head, which is quite a feat since I have no balance or gymnastic-ability whatsoever, to keep from blurting out, "Yes, but we are all so lucky! Just look at these kids we have!" I said to my husband the other day how grateful I was for him and that we share the NICU Perspective. I told him I wished I could share it with other moms, and he said you can't force it on someone else. And he's right. Sometimes you have to watch your two-pound baby fight to breathe, sucking in his lungs so much he's too tired to do anything but sleep and breathe. Sometimes you have to witness that with your own eyes in order to see how beautiful we all are.

Reflux in Preemies

I've been communicating with a mom who had a 30-weeker two months ago. I met her through a Facebook page devoted to the local donation of breast milk. She contacted me to see if I could donate to her baby, but I'd already committed to giving 1,500 ounces away and was having to turn moms down. I had to tell her no, but I offered to answer any questions she might have as she journeys through Preemie Land. It has been a joy to help her, and it has made me want to do more.

Her question yesterday was about reflux, and I answered with a solid YES! Yes, both of my babies have had problems with reflux. In fact, I think most preemies suffer from it to some degree because they're eating way before they're designed to be eating (because they're out of the womb weeks and months too early). I believe many babies have mild reflux issues as their bodies get used to swallowing, holding food down, and digesting that food. But, preemies have even more immature systems, not to mention stronger gag reflexes from having tubes down their throats and possible side effects from the supplements and medications they have to take while other babies were peacefully kicking around in their mothers' wombs. Sure, you can hold your baby upright for 30 minutes after feeding, you can burp frequently during feedings, you can change the diets of breastfeeding mothers and switch formulas for formula-fed babies, and you can slightly and carefully prop up the mattresses of bassinettes and cribs (boy, that will sure start a debate among NICU nurses and doctors), but sometimes all of that isn't enough. Both of my babies needed acid reflux medicine. Most of them have few side effects, and I swear I could tell a difference within a few days with my son and immediately with my daughter. I think if your baby is screaming uncontrollably around feeding times, is vomiting up much of their food, or is coughing down stomach acid, a little medicine twice a day is a lifesaver! I personally believe reflux has been under diagnosed in term babies in the past, and some old school doctors still tell parents to suffer through the phase until the baby is developed enough for the flap at the top of the stomach to do a better job of keeping acid out of the esophagus. But, preemies tend to have an additional problem. Their immature systems freak out and they tend to have a stronger reaction to esophageal pain--they just projectile vomit entire meals right back up, which is just awesome when you're already stressing over every ounce your little baby needs to gain.

At this very moment, I am still completely confused as to why the doctors in the NICU, whom I very much respect, dismiss reflux in preemies. Most NICU nurses completely believe it is a problem (because they spend their days caring for babies with it), and many of them advise you to bring the issue up with your pediatrician as soon as you leave the NICU. Some pediatricians are less than sympathetic, but ours had their own experiences with their full-term babies and reflux, so they were completely understanding and proactive in trying to help us make our babies feel better.

So, here's my take on reflux in preemies. It does exist, and it's probably more likely and more severe in preemies than in the average term baby. I think if holding the baby upright, changing formula, etc. don't work that it's logical to try some of the medicines available to parents. And if your pediatrician isn't listening to you, then you may want to rethink your pediatrician because over the next few years, you will probably have a number of preemie-specific questions and concerns. You want to know that your doctor is supportive and willing to help you as you navigate Preemie Land.

This Moment in Time

Isn't life full of odd coincidences? Like the fact that my babies were born nearly a month apart in terms of gestation, yet they were only a hundred grams apart in weight? One was in the 80th percentile, while the other was in the 5th, and they met at 2.5 pounds. It's like that with their therapy. My son has two physical therapy sessions and four speech therapy sessions left before he turns three and ages out of the state's early intervention services. We have just had my daughter assessed, and she begins her physical therapy exactly as my son finishes. In fact, she will have the same therapist, and she will take her brother's time slot. How bizarre is that?

Therapy and growth concerns and discussions about meeting developmental milestones have taken over my self-centered concerns about my professional development. My life has revolved around these two preemies for the last three years. I won't lie--it has been so difficult in many ways. There have been days that I thought I was a terrible mom and I had so much to learn. Other days my husband comes home to a clean house and to the baby sleeping and to my son on the floor with me painting pictures, and I smile at him like, "Hey, not only did I keep the kids alive today, but dinner is on the stove, the house is clean, and we're having fun!" When I take a step back, I'm not even sure what my life will look like when I don't have tiny babies. My son's physical therapist probably knows him better than most people in this world--she has seen him for one or two hours a week since he was a six-month-old trapped in a newborn's body. Now, he's running and laughing and filling all our lives with such joy. As she starts all over again with my daughter, I wonder what our life will look like when we're done with having preemies, when our kids are big and healthy and all this is a blur?

I feel at a crossroads in my life where I'm not sure which direction is right, but I know I can't leave all this behind. It has been totally and overwhelmingly life-altering. I'm still a little silly. I'm a total nerd, and I love reading a good book almost more than anything else. I love food and growing food and being outside. But, so much of what I've always thought made me Summer is in the background now. I am the mother to two preemies. We have therapy and talk about the next milestone to meet. I rejoice in their health and happiness. I worry about the next hurdle, and I change lots of poopy diapers. I cannot imagine not having more children, not having more preemies, ending this phase of my life, even though I know we have been told we should never have more biological children. When I allow myself to go to an alternate universe, one in which I'm not careful and practical and I throw caution to the wind to try once again to have a full-term baby, I simply cannot imagine it. I imagine us back in the NICU, seeing all our favorite doctor and nurses and laughing at the ridiculousness of having a third preemie. I know it would irresponsible to have another tiny baby, and I know my husband and I are too afraid of all the things that could go wrong. We know how fortunate we've been, and if you keeping pushing your luck, eventually it runs out. I just mean that I am so changed that I cannot even imagine having a baby any other way than the NICU way.

So, again I wonder at all the coincidences and the happenstances that have brought us to this moment in time. I believe in the order of things, that even life's chaos has an order we don't fully understand. I have to believe that as an otherwise perfectly healthy woman, I have been chosen to have these tiny babies and to live these experiences for a reason. I feel like I'm on the verge of seeing the big picture, but I'm not there yet. Instead, at this moment in time, I'm still in wonder that these beautiful children are mine and in awe of the journey that has gotten us here. And in shock that it has all happened to us.

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 7^th 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!