Today is World Prematurity Day. Obviously, I’m acutely aware of prematurity, and chances are, if you follow this blog at all, you’re aware of prematurity, too.
I have to be honest. I always have a bit of a squeamish reaction to prematurity awareness. That’s because one of the main goals of the day is to reduce prematurity. Now obviously, I’m all for reducing, nay, eliminating, prematurity! But to suggest that it can be done feels like suggesting that Das Big Boy’s premature birth was somehow preventable if I had done something differently. Prematurity prevention often talks about getting mothers prenatal care, and of stopping pregnant women from smoking and/or using cocaine. I’m here to tell you that I had topflight prenatal care, and that I didn’t have so much as an Advil before I was admitted to the hospital with PPROM. I took my bedrest extremely seriously, both at home and in the hospital. I only ate pasteurized cheese. I didn’t touch soft serve or smoothies. Or penne a la vodka. I didn’t clean a litterbox between 2010 and 2014. I was ridiculously, overly careful. And I still had a preemie and a baby who I managed to get to 36 weeks and 3 days which felt like an elephantine effort for not only me, Herr Husband, and Das Big Boy, but also my parents and Nanny Sunshine, not to mention a cadre of talented medical personnel. So preventing prematurity isn’t always possible, no matter how hard we try. And sometimes suggesting that it is fires up that tiny voice that wonders if I could have done something differently.
That isn’t to say you shouldn’t love the March of Dimes and give them money in Das Big Boy’s honor. Please feel free! They’re the ones who helped get the surfactant developed which enabled him to breathe. They conducted the research into the betamethasone that grew him the paltry lungs he had at birth so he could survive. And they fund research into PPROM’s causes, and many other issues associated with prematurity that could have helped me, Das Big Boy, and our many preemie pals.
But rather than talking about preventing prematurity, I want to think about how we can respond to it. The doctors and the organizations like MoD have the medical research and stuff covered. So we can think about the personal responses. And this is really my advice for how to support anyone going though a stressful situation: preemie, sick kid, sick parent, illness, what-have-you:
Be present. Give presents.
Call to check in even if you think the person wants some space. Send texts. Emails. Leave voicemails. Don’t expect to hear back, but be there. If you talk to the person, listen. Offer empathy. Hope, but not false hope. Support. Tell the person how awesome they’re doing (but don’t say you don’t know how they do it. They don’t have a choice. They just do), and ask what you can do. We loved when people visited the NICU (as long as they were healthy!). Our people treated Das Big Boy like a person who mattered to them, which helped him feel like part of our lives even when he was stuck in the hospital. Finally, don’t hide from even the scariest or saddest situations. I know my friends who’ve lost children love the opportunity to talk about those children, to be reminded that they existed for everyone, not just for their families.
And send something, if you can. I’ve written about this before, but people sent us stuff for Das Big Boy even before we knew if he would survive until birth. That meant more than I can express to this day. That people believed in him enough to send him a little outfit (Thank you still, A and M!) still brings tears to my eyes. When something is so uncertain, tiny tangible things mean so much. It’s why we took multiple photos of him every day that he was in the NICU. It was, I think, our way of proving that he was there, that he existed.
Friends also sent stuff to support us and keep our spirits up. Cupcakes delivered to the NICU. Gift cards for grocery delivery. A couples massage. Having our team care for us enabled us to care for our little dude. And it reminded us that we were part of a larger world that loved us.
Prematurity isn’t all tragedy. We loved Das Big Boy more than we thought possible. We celebrated his milestones (His first ccs of breastmilk! The first time we held him! His attempts at nursing! When we had to change his incubator because he had such an explosive poop!). We held him, cuddled him, read to him, and sang to him for up to fourteen hours a day. We befriended our nurses, doctors, and staffers, and of course the other families (and we celebrated their babies’ milestones, too!). The NICU became our community. Our home.
And during our 114 days in the NICU, Herr Husband and I also had a lot of laughs. We wrote songs like “Could be Gas, Could be Sepsis” (ok, it was a whole musical called NICU, the Musical), perfected our imitations of some of the NICUs characters and acted out scenes with them, and played a weird version of “chuck, fuck, marry,” in which we had to select a staff member to hurl from the window, one to bring to Boston, and one to leave at CHONY. We imagined setting up nurses with our friends and decided whom we would want to go for a drink with or invite to a party. Even when you’re miserable, misery doesn’t define you. You be you.
The last thing I think we can all do for World Prematurity Day is something to thank the best humans on the planet, NICU nurses. If you’re a NICU parent, you can do something to thank those nurses. Send them a treat. Donate something to the NICU that they can share with their patients. Write them a letter with a picture of your kid. And if you’re not a NICU alum, and you want to do something, you can still donate something to your local NICU. Or to the next best people: teachers or therapists or doctors who work with NICU alums. Looking for a new charity? You can give money to the Center for Healthy Infant Lung Development (CHILD) Clinic, or the Home Oxygen Parent Exchange (HOPE) program, both at Children’s Hospital Boston. These are the places in which Dr. Larry Rhein works his magic, helping preemies learn to breathe, and even more sweetly, to play. The HOPE Program is Larry’s passion project, where babies who are on germ isolation can take a music class safely without worrying about the common colds that could send them to the hospital. And where their parents can make pals with other folks who’ve had this strange introduction to parenting: (blue babies, plugged in babies, boob-to-pump-to-pump-to-belly, etc.)
So Happy World Prematurity Day, or something like that. Thanks, as always, for following our journey. Prematurity doesn’t define it anymore, but I do appreciate the opportunity to remember and reflect. Thank you for giving me the opportunity to do so.
Today marks the four year anniversary of the first time I held Das Big Boy. That seems crazy, because it seems like forever that I’ve been slogging away at my whole “Post for every day that he was in the NICU” goal. I can’t believe I had to wait a whole week to hold my little dude. [NB: he’s is bed whining for me to come back, and I’m going to do so in honor of the gratitude I feel for being able to hold him whenever I damn well please.]
He just said to me, “I need a hug.” I don’t care if he’s working me. Swoon.
Anyway, one of the many things that sucks about the NICU is that you have to get permission to hold your kid, and doing so, especially when they’re teeny and need breathing support, is complicated and kind of scary. One of the things that’s awesome about the NICU, like life changingly awesome, is the nurses. I learned so much from them: not only how to place a naso-gastric tube in a baby, or change the diaper on a two-pound newborn with the flipping abilities of an Olympic gymnast, but how to love in the face of fear, how to have confidence in myself as a mother, how to fight for my child, and how to bathe a baby. Hey, unlike most parents, I wasn’t scared to give DBB his first bath at home, even though he was still on oxygen!
I still remember when D, one of our amazing primary nurses, asked me if I wanted to Kangaroo DBB. For those not in the know, Kangaroo care is when a parent holds a diapered baby on her naked chest for skin-to-skin contact. It yields amazing results for the babes (better oxygen saturation, increased tolerance of feedings, etc.), and obviously for parents, too. So when D asked me on DOL seven if I wanted to Kangaroo DBB, I was thrilled. Up until then, I hadn’t been allowed to hold him, as he’d been too fragile, first on the dreaded Oscillator and Nitric Oxide (not to be confused with nitrous oxide, aka, laughing gas, aka whippets), then on the regular ventilator. He’d only just been extubated to C-PAP (continuous positive airway pressure, Columbia Presbyterian’s method of choice for delivering breathing support to preemies–it allows them to do the work of breathing, but makes it easier by keeping their airway open with, well, air. Your dad may also have one to help with sleep apnea, or snoring. My dad would probably want me to tell you that he has no such thing.)
Anyway, DBB had returned from the brink of death (and I mean this literally, not flippantly), but he wasn’t exactly a picture of health yet. So I was surprised when D asked if I wanted to hold him. “Are you serious?” I asked.
“Yes, I’m serious,” she replied.
“Are you sure? Is it safe?” One of the things that sucks about the NICU is you are afraid that your own yearning for your kid could hurt him.
“I see a baby on room air (note: this wouldn’t last–as you all know, DBB would go on to need some sort of 02 support for 14 months.) CPAP who’s tolerating his feeds and needs his mom as much as she needs him.”
I looked at Herr Husband, “Is it ok if I hold him first?” I asked. Keep in mind that other than birthing Das Big Boy and pumping enough breastmilk for quads (according to the nurses), Herr Husband had done just as much as I had on our journey to this point. More, maybe, if you consider that he fed my every dietary whim and emptied my bedpan seventy-six times a day and night while I was on hospital bedrest.
“Of course,” he said.
I needed no more urging. I closed our curtain, stripped down to my nursing bra, sat in the chair, and waited for D to unravel DBB’s million cords, pull him from the incubator, and place him on my chest.
“Look how comfortable he is,” she said.
He felt like a kitten. Perched on my left breast, which was at least double his size, he clung to me with his little nails. He turned his face towards mine and nestled in. Like all babies, preemies lose weight after they’re born and DBB was at his lowest ever (external) weight of two pounds that night. I marveled over his tiny fingers and toes, and sang to him, and told him how amazing he was and how much I loved him. He opened his eyes to look at me a few times, and then closed them again. His head, my mother insists, was the size of a clementine, although I think it was more like a navel orange. He had the sweetest little old man face. His warmth blended into mine and, as with so many of the major things in our lives, it felt like both an instant and an eternity. The first time I held my son. I was so nervous that my arms ached after D returned him to his isolette. I’d been afraid to move for fear of sending his oxygen saturation plummeting or jostling him and making him uncomfortable.
I’ve forgotten a lot of the anniversaries this year: the anniversary of when my water broke, of when I ran out of fluid for good, of when I hit twenty-five weeks and we knew that life saving measures would be taken if he were born. But I remembered this one. It’s one that does my heart good, just like holding my boy does to this day.
Today, I have learned, is World Prematurity Day, and November is Prematurity Awareness Month. I’m not sure that I knew about this remembrance in previous years, but it seems a fitting choice of month given that in November of 2010 I was the mother of an incredibly sick preemie, and in November of 2012 I’m trying to avoid birthing a preemie. It’s become a month during which I, at least, am very aware of prematurity whether it’s commemorated by a day or not.
I could spend time telling you lots of prematurity statistics, but you can find those on myriad websites, some comforting, most anxiety inducing in anyone who’s had a preemie. But rather than spout off statistics or show off my alarming array of preemie and high risk pregnancy specific medical knowledge (seriously, not to get all smugsby on you, but doctors and nurses ask me all the time if I work in healthcare), I’d like to try to share some things about what it’s like to be a preemie parent.
Or at least what it’s like to be this preemie parent.
1) Preemie parents have had their children almost die. They have received that phone call telling them their baby might not make it. They didn’t get a chance to say goodbye. They barely got a chance to say hello. They were told they would receive a phone call again in half an hour with an update, but that they couldn’t come see the baby yet. Fifty minutes later, they were told their baby had stabilized. Having your baby almost die makes you a different parent.
2) Preemie parents have seen their children turn blue because they forget to breathe. Preemie parents get used to seeing their children turn blue because they forget to breathe. Preemie parents learn to calmly rub their babies’ backs to remind them that, in the words of one of Das Baby’s nurses, “Breathing is fundamental.”
3) Preemie parents may not take minor bumps, bruises, and illnesses as seriously as other parents, because when you’ve had a kid turn blue or almost die, that stuff seems pretty minor.
4) Preemie parents feel like they’ve failed. Like their bodies have failed, like somehow they are worse parents because this happened to their child. This feeling fades, but never fully goes away.
5) Preemie parents feel like they’re slightly better parents than other parents, because they’ve had to go through more. They appreciate the smallest things about their children.
6) Preemie parents feel like they have so many reasons to be proud of their children, who have overcome so much.
7) Preemie parents have to leave their children in the hospital every night, and this is a heartbreak from which it’s hard to recover, whether it’s for one day or 114 (note: I had to double check that number, which I used to know like my birth date). Preemie parents therefore promise themselves that they will never resent having to get up in the middle of the night with their children. But sometimes, when they still do resent them (because waking up eight times in one night is enough to make anyone resentful), they try to remind themselves of when they couldn’t comfort their babies.
8) Preemie parents don’t get to hold their children right away. They might have to wait a week or more. They might love holding the tiny being–light and clingy as a kitten–but be almost afraid to breathe for fear of harming him. Later they might become the type of parents who never put their baby down.
9) Preemie parents might not be able to touch their child on the day he is born. They are lucky to get a quick glimpse of a tiny purplish baby before he is whisked away. Preemie parents have to be taught how to touch their children–no gentle stroking, as their skin is fragile and they are hypersensitive. Firm, static touch.
10) Preemie parents think their children are the most beautiful thing ever from the moment they are born, even when they are stuffed full of medical equipment that triples their body weight. It hurts them and makes them angry when anyone suggests otherwise.
11) Preemie parents sometimes lack patience when typical parents complain about how hard it is having kids. They don’t mean to be judgy; they’ve just been through a lot, and sometimes it seems like other people have it easy. Preemie parents also know this isn’t fair of them, and they try not to do it.
12) Preemie parents keep worrying about their kids (who doesn’t?). Sometimes they forget to be amazed and grateful at how far their kids have come, and instead worry about getting to the next milestone. Preemie parents worry that some effect of prematurity might pop up and make their child’s life very difficult. They try to remember that they’ve coped with every tough thing so far and will be able to cope with anything that comes their way.
13) Preemie parents are thrilled the first time their child actually fills out a preemie outfit. They are overjoyed when their baby moves from an isolette to a crib. They can remember when their baby finally got big enough to wear Pampers Preemies instead of the brandless doll diapers he started in!
14) The roller coaster cliché about the NICU is totally true. Babies get better, and then they take steps back. Preemie parents try to mentally prepare themselves for this, but the fact is, it sucks.
15) The NICU is not all misery. It’s also magic. It’s the magic of a baby getting better. And it’s also the magic of a community–of nurses, of other NICU families, of doctors–that will stay with them for the rest of their lives. It becomes a world unto itself in which preemie parents can get very comfortable, even as they are eager to leave.
16) Preemie parents do not forget how to laugh. They endlessly discuss things like which hospital staff member they would most want to go to a bar with, or have to a dinner party, or which of their friends should date their favorite nurses and doctors. They play a weird version of chuck-fuck-marry in which they discuss which hospital staff member they want to bring to Boston, which they would leave at CHONY, and which they would fire.
17) Preemie parents are amazed to see their children grow up. They are amazed when they no longer have to explain that their child was a preemie, and that’s why he’s a six month old the size of a three month old. They are even more amazed when people are shocked to hear that their child was a preemie.
18) Preemie parents are, like all parents, lucky. But even luckier.
Of course, there are preemie parents whose children don’t make it, and their heartbreak is unimaginable. I want to send them all of my love and strength today. A friend wrote an amazing, direct, devastating, and beautiful book about such loss, and I’ve also discovered an incredibly honest, powerful, and loving blog about it.
Now I have many friends who face challenges with their children who weren’t premature: children who have medical problems or neurological differences. Some of the things on this list apply to them and some of them don’t. Some of their struggles are unique to them. But I felt they deserved a shout out, too, because there are so many ways in which parenting can be hard.
But even more than it’s hard, it’s miraculous.
This post is perhaps sad, or serious, but I’m not necessarily feeling that way. I just wanted to honor World Prematurity Day. Today was actually a good one. I napped. Das Big boy used an adverb correctly (“I do too need a pen!”). Herr Husband and I continued one of our best bedrest traditions from my last pregnancy: a cheese and jazz picnic in bed.
And I also want to give a shout out to our wonderful neighbors: the gourmet chef neighbor cooked us dinner tonight (score! yum!), and our next door neighbor/political soul mate mowed our lawn. So happy and grateful to be part of such a loving community! Thanks, guys!
Unless you’re David Petraeus.
Around here, we read some new books, played with Das Big Boy’s new pizza set, and didn’t give birth to a baby. Good day all around.
Das Big Boy benefited from a continuation of a tradition that began when he was a bedrest baby; for each week of gestation, he got a new book which we read to him as a fetus, and later as a fetus who lived on the outside (also known as our baby). Today we bought some books for Baby Girl HH–we figured we owed her three because that’s how many gestational weeks she’s aged since bedrest began. Yes, Herr Husband picked books Das Big Boy would like, and we didn’t exactly tell him they were hers, but both kiddos (fetal and actual) got to enjoy them, so what’s the difference? Welcome to being the second born, Baby Girl HH. And welcome to sharing with your sister, Das Big Boy. Actually, as an only child I have no idea how this sibling thing works, but that’s a story for another day. Today’s acquisitions were Maisy’s Bedtime,Skippyjon Jones and the Big Bones, and The Ducking Gets a Cookie!?. All were hits, but I had to read the Duckling book six times. I do a particularly ridiculous (and if I dare say, authentic) voice for the pigeon, which is perhaps why Das Big Boy wanted to hear it on repeat. I also finished Barbara Kingsolver’s new novel, Flight Behavior, which I enjoyed very much for its prose and protagonist, but at times found too issue driven, as if her desire to make a point sometimes interfered with her storytelling. It needed one more comb-through so that the instructive scenes didn’t feel so much like lectures.
Herr Husband feels we need a robot to meet my constant requests. Anyone have one to lend us? And no, Roomba won’t cut it. We have him already.
Horizontal Happy Dance sounds naughty (none of that here; I’ve been on “pelvic rest” since basically the moment I found out I was pregnant. I just mean that I’m happy). But I’m very afraid of jinxiness, of reminding the gods to even things out, of the proverbial plummet of the other shoe. But that doesn’t mean I can keep my good news all to myself.
First off all, I got to employ my fantasy Facebook status after all: “It’s official. I can say it. I’m the most pregnant I’ve ever been, and thankfully, my daughter will be born into an Obama presidency.” (It’s yielded an impressive 91 likes).
As you know, all of my candidates won, which was a wonderful relief, and which gives me renewed hope for our country and the direction in which it’s heading. I stayed up watching results, and ultimately fell asleep just as Barack took the stage. One weird thing about sleeping downstairs is that we have a TV in our room, something I’ve never had before (and which in general I don’t want). It’s like being in a hotel, especially since my whole life is room service (Damn it! Bedrest-as-glamorous-false-impression continues!) The election and its attendant anxieties helped take my mind of my uterus and its attendant anxieties, and the good results of course helped my mood. All of it took my mind somewhat off my cervical length check this morning. And because the appointment was so early, we had no time to sit around and worry before heading to the hospital. So I only had a chance to be panicky in the car, and then as Herr Husband wheeled me through the hospital, and then as I waited for the ultrasound.
We had to wait a few minutes for Dr. Ralston, the high risk doc (Maternal Fetal Medicine specialist). I wanted him there for the exam because he’s the one who saw me last week, and ultrasound is very subjective so I figured he’d have the most consistent perspective. I also like him because he answers all of my questions well and thoroughly, and is very honest, direct, and cautious. He also has a good sense of humor, which is good because I make awkward jokes when I’m nervous and he laughs at them.
The news: I actually seem to have gotten some cervix back, and the funnel seems to be narrower (he theorizes it probably expands when I contract, but he felt he could give me credit for more closed length than last week or the week before). It was better! Now, let’s not get too excited. One’s cervix can increase and decrease in length. (Imagine moving your fingers up to lengthen the neck of an inflated balloon, or lowering them to shorten the neck of the balloon. That neck is my cervix. Get your fingers off my cervix!). But still, he felt I was stable enough that he doesn’t feel the need to see me next week (unless anything changes). So I don’t have to go back for two weeks! And things are stable!
We’re not allowing ourselves to get excited, but being stable is so much better than having scary changes. And we hit another milestone tomorrow: 28 weeks gestation, which is a big one in terms of brain health–kids born after this gestational age are less likely to have major brain bleeds.
Then Nanny Sunshine sent us this adorable video of Das Big Boy performing Humpty Dumpty, which she taught him. Perhaps next she can teach him the Humpty Dance, except she’s ten or fifteen years too young to know it. So that will just have to be his mother’s job, once she’s done being a Victorian consumptive. (Take a minute to imagine Emily Brontë teaching you the Humpty Dance…**)
So it’s been a good twenty-four or so hours for us. I’m trying to accept it without getting excited or thinking too far into the future. I’ve been through this before and know how quickly things can turn around, or go from good to bad. Time for more efforts at Zen from Hipster Hausfrau…
I’ll try to take a lesson from this guy.
**It should be noted that I consider Emily Brontë more of a Romantic writer than a Victorian one (though Wuthering Heights is of course in part about the clash of these two worldviews…). But she’s still the consumptive I’d want to teach me the Humpty Dance.
No, not in the election. Let’s hope for an Obama landslide. Actually, I don’t need a landslide. A slim win would be just fine. I don’t want to get so greedy on the political front that the gods screw me on the baby front. It’s a delicate balancing act when you want two things very badly.
First things first. I voted. In my wheelchair. And I looked like this:
Now I know lots of people vote in wheelchairs because they use them every day. And plenty of people have to overcome far more than I did to vote (voter suppression, losing everything to a hurricane, etc). So I should probably stop lobbying for the Congressional Medal of Honor for my bedrest voting efforts. But I’m proud that someday I’ll be able to tell my daughter that I cared enough about her rights as a woman, and her healthcare, and her education, and economic and social justice for all Americans that I voted from a wheelchair. I can also tell her that in addition to voting straight Dem, I voted for medical marijuana, assisted suicide, and alcohol sales in our dry town. Weed, narcotics, and booze–yay, America! That ought to make her happy. That and the fact that I cared enough about her safe gestation that I–have I mentioned this already?–voted from a wheelchair.
Speaking of her safe gestation. we have at least a gestational tie between my two children! I’m twenty-seven weeks and five days pregnant with Baby Girl HH, which is as pregnant as I was when I delivered Das Big Boy. But Baby Girl HH has some advantages that her brother didn’t enjoy. She has all her amniotic fluid. She’s a girl, and they tend to be stronger. As a friend put it, “What is it with those white baby boys?” (They statistically have the worst outcomes of all preemies–although my little white boy has done great). “They’re entitled.” I told her, “They have a sense of privilege and expect the world to cater to them.” As it turned out, Das Big Boy was a fighter. And I have no doubt that his sister will be, too.
Today Das Big Boy survived his transition to a new class at “school,” which he will attend without a caregiver. Since I went on bedrest, he’s shown an increase in social anxiety, especially with children his own age. There have been a lot of tears. But he did great today. According to the teacher, he did very, very well for his first such class. Huzzah!
I have my dear auntie visiting today, Le Gigi was here for a while as she took Das Big Boy to school, and Nanny Sunshine is here. I’ve gone from being a Victorian consumptive with a doting mother to one with three handmaidens and a footman (my dad was here earlier, too). Oh dear. I’ve fallen into the trap of making bedrest seem glamorous again. Don’t be fooled. My hips are killing me from lying down for so long, and I’ve started making old man grunting sounds when I do stand up (you know, to go to the bathroom, my only truly sanctioned activity).
Happy Election Day (please, oh, please let it be happy), and happy tied-for-pregnantest ever day, too!
I stalk a few pregnant lady and preemie mom blogs, and I always worry when they don’t post. So here I am. Where I always am–in bed. (Actually, I’m mostly on the couch but right now I’m in bed. And eating pretzel m&ms. Sometimes I worry that I make bedrest sound awesome. Hopefully you are wise enough to know that is so not the case. But if you’d like a litany of complaints, I’d be happy to oblige).
Nanny Sunshine started today and was every bit the goddess I knew she would be. Das Big Boy adores her and she’s super helpful to me. Listening to them play with playdough in the kitchen today (they made a sheep), I was overcome by a sense of peace. Pretty incredible sensation for someone who spends most of her time trying to mentally glue her cervix shut.
Baby Girl HH, you stay put.
Below is a gratuitous video of Das Big Boy amusing himself with a game he invented.