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.

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!!

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!

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.