NICU

Murderers

Posted on by Beth Caldwell

Tomorrow Congress may vote on a change to our country’s health care system that will kill people with cancer. That’s not hyperbole, it’s the truth. The new healthcare bill is even worse than the one that’s being voted on tomorrow. It’ll allow our insurance companies to charge cancer patients like me hundreds of thousands of dollars more just to have health insurance. It’ll allow insurance companies to refuse to cover my son, who was born premature. The members of Congress who vote for this bill are aware of exactly what it will do. They know that if this bill passes, millions of Americans will die for lack of health care. 

In the law, a murderer is someone who knowingly, deliberately takes an action that takes someone’s life. Voting yes on this bill makes people murderers. They are attempting to kill me, to kill other people with cancer, to kill other people with disabilities, to kill other people with illnesses. Their motive is money–we cost too much to keep alive. We are not worth the money that insurance companies must spend on us. 

If your member of Congress is considering voting for this bill, I beg you to call them today and tell them what you think of it. Tell them they are murdering your friend Beth Caldwell with their vote and you will make them pay for that vote. Use your voices to rise up and destroy this bill that will slaughter millions of Americans. And if they won’t listen and they vote for it anyway, you must follow through on your promise and use your votes and your voices to ensure they lose their power. A murderer has no place running our government.

Click on this link for a list of key members of Congress you should be calling. Fill up their phone lines demanding that they refuse to vote for this murderous legislation, and reminding them that their constituents will not vote for a murder next year. Keep calling until you run out of breath in your body. My very life depends on it.

Why?

Posted on by Beth Caldwell

Since The Cancer, a lot of friends have said things to me like “This seems so unfair. You’ve been through so much trauma already, and now this? Why does this have to happen to you?” But strangely, I haven’t asked that question myself. I haven’t wondered why I had to be the one who got cancer. Which made me wonder, why haven’t I wondered why?

At first, I thought it might be because I am not religious. I don’t believe in a divine plan, and even if there WAS one, I don’t think God would be such a dick that he would give someone cancer.As I’ve said before, if it brings you comfort to think that God did this and it’s for some important reason, well, OK, but that doesn’t bring me any comfort, and if you say it to me, I will probably tell you that I think your god is an asshole. (Freedom of religion: it cuts both ways, doesn’t it?) Because, I think illnesses happen because they just happen, and it’s not fair or unfair, it just is. This is also why I think health care should be a right and not a commodity, but we’ll save that for another post.

So, yeah, I thought, maybe it’s just my world view that makes me not ask why. But, then I thought back to how I reacted to The Boy’s early birth, and remembered: I did a LOT of asking why, but from a medical perspective. Not at first, but as time went on, I desperately needed a reason for why my water broke, how this all got started, what went wrong. And none of the doctors could tell me. They had hypotheses, sure, but no way to prove them.

For a while, I blamed myself. I must be the reason, if only I had done something differently, if only I had been more in tune with my body. Looking for a reason for the shitty things that happen can be a dangerous thing. It can lead you to blame people who aren’t really at fault. Including yourself.

It took a long time and plenty of therapy to come to accept that I would never know for sure why The Boy came early, but eventually I did. Doctors just don’t know all there is to know about the human body yet. They are researching as fast as they can, and they know a hell of a lot more now than they did even 10 years ago, let alone 100 or 1000 years ago. But they don’t know everything. And sometimes, they just don’t have the answers. Doctors know a lot more about cancer now than they used to–they know enough to tell people not to smoke, and to wear sunscreen–but they don’t have all the answers about why cancer happens. Especially when it’s a rare form, like mine.

We did ask my oncologist, who is extremely kind as well as extremely smart, how this could be stage IV already, when I just found the lump, and I do self exams regularly. (My paternal grandmother had breast cancer in her 70’s, lived 10 more years and died of non-cancer old people diseases, but her cancer was enough to get me doing regular exams.) He said that my type of cancer is really aggressive, and that there was nothing I could have done differently to prevent this from becoming stage IV.

See? Shit just happens. That was a totally adequate answer for me.

Talking Down

Posted on by Beth Caldwell

When The Boy was in the NICU, the room he was in had 6 babies in it. (They didn’t have private rooms, just areas they could screen off around each incubator. This meant that you got to know the other families, which was great–some of them are still his friends today.) The first couple of weeks, all the kids in his room were boys, and then one day, a girl moved in. I don’t remember her name, but the nurses all joked that The Boy had a girlfriend now. Except, the girl wasn’t like the other kids in The Boy’s room–she screamed a lot.

Preemies don’t scream a ton–if they’re on a ventilator, it’s not physically possible, and if they’re not, they just sleep so much because they’re really busy doing all the growing they would have done in utero, which is a LOT of growing. And it’s much harder work to do it in an incubator than in the womb, so they just need a ton of rest.

But there are lots of reasons why a baby might end up in the NICU besides prematurity. For example, I have a friend whose son was born full-term but with situs inversus, like The Boy has, and they kept him in the NICU for several days after he was born to try to make sure his abdominal organs worked properly and he wasn’t going to need surgery. Babies with birth defects often end up in the NICU. And I know tons of people whose full-term babies had jaundice that required a hospitalization.

And then there’s the drug-addicted kids. The Boy’s Girlfriend was one of those kids, and that’s why she screamed so much. I mean, I’m not an addiction specialist, but I’ve read enough about it to know that detoxing feels pretty shitty. And when babies feel shitty, they scream. Which is why The Boy’s Girlfriend was screaming. How do I know that’s what was going on and it wasn’t some other medical condition that made her feel shitty? Because her mom was clearly, obviously, visibly high when she visited the baby in the NICU. And because the grandma openly discussed it in the family waiting room. After a few days of screaming, The Boy’s Girlfriend stopped screaming, and then she went home with her grandma.

I noticed during our time in the NICU that the staff spoke to the drug-addicted parents differently than they spoke to us. The spoke to us more collegially, more as team mates or peers. Whereas, parents that they didn’t see as stable, the staff tended to speak to in a more didactic style. For example, the doctors and nurses tended to go into more detail when explaining what was going on with The Boy, and they dug deeper into how he was progressing and how it compared to an average 27-weeker.

I get why a NICU team might not throw all the details at a parent who’s clearly high as a kite. I mean, I’ve never used drugs, but I’m betting that a woman who just gave birth and is high is probably not going to be capable of processing all the information that’s available in a NICU. It’s hard enough to understand it all when you aren’t high. But also, I think they felt protective of the kids under their care, and were worried what would happen to them when they left, which has to make it hard connect to parents who were so clearly unstable and might not even be the one raising that child after discharge. With us, who they could tell were going to take good care of The Boy when he went home, they were more open about why they were doing a procedure a certain way, or why the doctor had chosen a certain respiratory intervention, or whatever. They embraced us as partners in his care, and we became friends. And they were very supportive of us–they asked us how we were feeling and just did the things that friends do when they know you’re hurting. I would imagine it’s hard to build that kind of relationship with someone who’s high, and who you know might not even be the one who ends up being the care-giver for that baby after discharge.

I’ve noticed the same didactic style when dealing with some other medical professionals, particularly with specialists who don’t see us as often and don’t have the chance to build a rapport with us. And actually, so have some other preemie moms I’ve spoken to. One of my preemie mom friends told me recently that she had a particularly stressful appointment with a specialist for her son. She left the appointment feeling awful, and threatened–that if her son didn’t improve in a certain area, then the doctor would punish them with a more serious medical intervention. I’m sure the doctor didn’t mean for it to come across that way, but I’ve actually had the same feeling with some doctors myself. It’s as though they blame the parents for the child’s medical conditions, rather than seeing the parents as teammates in trying to help the child thrive.

That “threat” of bigger interventions is actually one of my pet peeves from my time on bed rest before The Boy was born. When one of the NICU docs (the only one without great people skills, as it happened) came to talk to me about what the NICU was like and the statistics on outcomes for preemies, it felt like she was saying “You better keep that baby cooking in there, or else.” But, that presumes I have any control over when  my body goes into labor. Like if I just want it bad enough, I can choose when my baby is born? Uh, no, I can’t. And of course, I wasn’t on hospital bed rest for long before I DID go into labor. And then I got to feel guilty about that too, as though it was somehow my fault that I couldn’t stay on bed rest longer. And we wonder why preemie moms need therapy to get past their feelings of guilt over their child’s birth? It would have helped if that doctor had said “I hope your body cooperates, but we know it might not, and that’s not your fault.”

As if that wasn’t enough to make you feel like crap, one of the worst parts about having a kid in the NICU is not being able to parent them the way other parents can. You can’t just pick up your baby and hold him or her when they’re hooked up to machines and in an incubator. So, a lot of NICU parents don’t feel like “real” parents. And that means that when a NICU staffer talks down to you, or otherwise limits your authority as a parent, it really hurts. My worst memories from the NICU involve the very few nurses who limited our involvement in The Boy’s care. On my darkest PTSD days, that’s the feeling that I re-live, and I find myself thinking of all the things I want to say to them, or rather, scream at them. And when a specialist talks to me that way now, I still feel that “you are not a real parent” feeling. It’s really painful.

If you’re a medical professional and you’re talking to a parent whose child is not well, I hope you’ll think a bit about whether you’re speaking to those parents as partners in that child’s care, the way most of the NICU nurses did with us. If you aren’t, I hope you’ll start. And if you are, I want to say thank you–medical staff like you make it possible for parents like me to get through the tough times with our kids.

Things Not to Say to a Preemie Mom

Posted on by Beth Caldwell

So, I’ve talked a bit about what the NICU is like and how to be a good friend to someone whose baby is in the NICU. Now it’s time to learn some things you should never, ever, ever say to a woman who just had a preemie. And yes, people actually say this stuff. It’s not because they’re horrible people, it’s just that if you haven’t had a preemie, you don’t understand what it’s like or why these comments would hurt a preemie mom’s heart. We all put our feet in our mouths sometimes and that doesn’t make us bad people. It just means we need someone to explain things to us. As always, I’m here to help, not judge. Her we go!

1. “You look like you didn’t even have a baby.” Oh man, where do I even start…let me begin with the preemie mom’s perspective here. When you have a preemie, one of the many awful feelings you have is that you don’t feel like a “real” mom. You’re not doing the things that “real” moms do–hell, you may not even be allowed to hold your child. So, a comment like this adds to the negation of your experience as a parent, that is to say, it makes you feel even less like a “real” mom. Also, I get that you’re trying to compliment the mom on her weight loss, but how about we don’t comment so much on women’s post-partum bodies? How about size isn’t a thing for women, especially when they just gave birth? How about their actions, like their dedication to their child, are worthy of praise instead of their weight?

2. “You’re lucky your labor was so much easier since the baby was so small.” I even said this one to myself, as I was trying to find the bright side of this nightmare I was living. But seriously? Nobody is lucky to have a preemie. It’s not something anyone in their right mind would ever want. And whatever physical pain you avoid by having a tiny baby, you more than make up for in emotional pain. Don’t try to find silver linings. Just accept that having a preemie is a shitty, shitty thing.

3. “I hope my baby comes early.” NO NO NO NO NO. No you don’t. Look, I get that the last month or two of pregnancy sucks. I had a full-term baby too. I know what swollen feet and insomnia and peeing every five minutes and heartburn and baby feet kicking your ribs are like. They suck, it’s true. And none of them is worse than the NICU. You don’t actually wish for the NICU. Complain away about your symptoms and wish it was your due date already and I will be right there with you…but do not say “I hope my baby comes early” or you’ll probably get an earful from a preemie mom about what bradycardia is.

4. “Sometimes it’s hard to understand God’s plan.” I can’t even with this crap. Just go read this and understand it applies to any medical crisis, including the NICU.

5. “I guess the baby just wanted to come out.” Oh yes, The Boy really wanted to be a preemie. He chose this. It’s all his fault. Because babies choose how and when to be born. They sit up in our wombs and say “I think today I’ll tear my mom’s bag of waters so I can live in an incubator for a couple of months.” Because they can talk. Are you trying to express that “shit just happens and this wasn’t your fault”? Then say that instead. Don’t blame the kid. I don’t like it when people blame my kid for things that weren’t his fault.

6. “Wow, you’re really paranoid about germs.” Paranoia means that a person is behaving irrationally. It means they are afraid of something that isn’t really a danger. Preemie parents are not behaving irrationally when they hole up at home during the winter. They’re literally following doctor’s orders. Preemie lungs aren’t like regular baby lungs–they’ve been damaged by the very machines that kept them alive in the NICU. So, they don’t get over colds the way that non-preemies do. The Boy had pneumonia twice before he turned 2, even with us avoiding germs as much as possible. If we don’t bring our lung-damaged child to visit you during cold and flu season, please do not be offended, and please don’t minimize our fears. They are based on medical advice, not paranoia.

7. “You guys are such great parents, you really should have another.” Look, I appreciate you see me as a great parent who you think should have more kids. That’s a nice compliment. But, you’re suggesting I put myself in a position where I may have to go through the worst experience of my life a second time. That’s terrifying. The Hubs and I came to it in our own time, but the pressure from friends to have another was not productive. In fact, it made us less likely to have another. Adding stress to someone who’s experienced a trauma is not helpful.

Preemie moms, got any more to add? Share them in the comments!

Trauma Rocks

Posted on by Beth Caldwell

I feel like people think I am exaggerating when I say I have post traumatic stress disorder from our NICU experience. Who me, exaggerate? OK, yeah, I do sometimes. But when I say PTSD, that is what I mean. You may recall a few years back that a study came out about parents of kids who had been in the NICU, and a decent number of those parents showed signs of PTSD months after their kid had come home from the hospital. When I read an article about the study that described their symptoms, I thought, “Yep, that’s me. And The Hubs.” It felt good, and awful, to know we weren’t alone in feeling the way we did, and it felt good to read doctors saying “This is a real thing.”

I have had waaaaaay too many people say uneducated things to me about my PTSD that sound soothing but actually aren’t. These are good-hearted people who just want to be supportive, but don’t know what they’re talking about, so they are actually being the opposite of supportive. Things like “It’ll get easier, someday this will all be behind you” and “Just try to forget it and get over it.” No offense, kind hearted people, but that’s just totally not helpful. Let me explain why.

See, PTSD is a mental illness. Mental illnesses don’t respond to logic. You can’t reason away a mental illness. It’s an illness. Like, you can’t just say to a person with cancer, “Hey, stop having that cancer, cancer is a stupid thing to have, get rid of it.” And then the cancer patient is like “Golly, is cancer bad? I had no idea! I will stop having the cancer now.” And boom they’re cured. Wouldn’t that be an awesome world to live in? Yes, it would. Alas, that is not the world we live in. We live in a world where there are a LOT of illnesses without cures. And PTSD is one of them, and telling people to just stop having it and get over it? Yeah, that’s pointless, and frankly, hurtful. Because it presumes mental illness is a choice, and that mentally ill people are stupid enough to choose to have one. When you tell me to just get over my trauma and forget it, you are calling me stupid. I know you don’t mean to call me stupid, so please, stop it.

The Hubs and I went to a therapist together for a year to help us cope with our PTSD. She described trauma, which is what the NICU experience is, basically thusly: a trauma is like a sharp, pointy, scratchy rock that you carry around with you, and no matter how much you want to get rid of the rock, you can’t. It’s superglued onto your soul, and it’s not coming off. You’re stuck with the rock. The best you can do is polish down the sharp pointy edges to make the rock stop cutting you up all the damn time. That’s what therapy does.

I like to think of trauma rocks like this: we all have a box in our brain that contains our stress. It is only so big, and when too much stress builds up in there, it overflows, and then bad shit happens, like panic attacks and yelling at your kids and midlife crises involving Porsches and sexting. For most people, their box is big enough to hold their stresses most of the time, but for people with a trauma, that trauma rock is sitting right in their stress box taking up a ton of room. So there just isn’t as much room in there anymore for regular stresses like the dishes piling up in the sink and your boss being a dick and would you kids please stop hitting each other and the next thing you know, bad shit is happening, like you are sobbing uncontrollably in a corner. And remember, as much as you want to throw that rock out and make more room for regular stress, you can’t, it’s superglued in there.

So, you have to learn to let some of the regular life stresses go instead. You have to learn to pick and choose what regular stresses you will hold onto and which you just can’t anymore. Because you never know when you’re going to hit a trigger that makes your stress rock rattle around and slosh the other stresses out of the box and make a big sloppy emotional mess. Therapy helps with this too, because it helps you to let go of some of the other stresses. Our therapy sessions were like a storage locker for those stresses that weren’t superglued in like the trauma rock is. We could take stresses out of the box, look them over, and then leave them in the storage locker at therapy, and not carry them around in our stress boxes anymore.

I have a few triggers that set my rock in motion. The Girl throwing up. Someone making me feel like I don’t have a say over what happens to my kids, or making me feel like they think I am a bad parent. Hearing about someone else’s birth trauma. That Star Trek movie where Captain Kirk is born in a traumatic situation? Downtown Abbey when Sybil gives birth? These are things that can turn me into a sobbing panicked mess. I am literally feeling all the awful feelings from the NICU time, and it’s really more than my brain can handle. They seem like minor things and not big enough to cause a panic attack, unless you have a sharp rock superglued on your soul that is cutting you up and sloshing around all your other stresses.

Dealing with the world when you have NICU PTSD can be hard. It’s hard to explain to friends why you can’t be at their party that you’ve been planning to go to for weeks, because you are recovering from a panic attack. Or to explain to your boss why you really aren’t up for that meeting right now. It’s hard to talk to your kids about why you are crying. And it can be really, really frustrating to feel like you’re constantly having to explain yourself to people. I think that’s partly why connecting with other NICU families has been so great for us. We don’t have to explain the trauma to each other.

Still, in the end, I have found it easiest to just tell my non-preemie friends what is going on. When you explain that your mental illness is acting up and you need a break, your friends are surprisingly sympathetic. At least, mine are. It’s trickier with a boss, but if you have a good one, they can be very understanding too. Most people are good people, and they want to be helpful. And they are, if you tell them how to be. Which is why I am writing this post. Because, I know people WANT to be helpful to their preemie parent friends, but they just don’t always know how, and it’s really easy to put your foot in it…unless you know how trauma works. And now you do!

Hospital Parents

Posted on by Beth Caldwell

The Hubs owns a 1966 Mustang. It’s the first car he ever bought, and he got it from the original owner, a little old lady who still had the original owner’s manual when her kids helped her sell it. If you’re not a car person, let me explain why this is worth writing about: Mustangs are classic cars, and people who love them REALLY love them, and having an old one is super cool to other car people. We rarely go out and about in the Mustang, especially since having kids (dude, it only has lap belts, it’s that old), but when we do, if we see someone else in a classic car, they usually do a little nod to say “Nice car, man” and we do the nod back. It’s like we’re part of a secret club of people who own awesome cars.

Being a parent of a kid who’s spent extended time in the hospital is kind of like that. Only, it’s a club nobody wants to join. And instead of recognizing each other by our sweet rides, we recognize each other by this look that’s there in our eyes. I’d describe it as a mix of pain and barely suppressed panic that you can see flickering out of them when they talk about their kids, particularly their kids’ health.

It’s sometimes a jarring experience for me when I meet another hospital parent, if I’m not expecting it. One time I was talking to a friend whose son had been hit by a bicyclist while in a crosswalk and hit his head on a curb. When I asked how he was doing, BAM, there was that look in her eyes. That’s when I realized how serious the accident had been (naïve me had figured a bike couldn’t do that much damage, but, duh, it can). I went home and said to The Hubs, “She had that Hospital Parent look.” And he knew just what I was talking about.

Recently, one of The Hubs’s friends had a kid wind up hospitalized for a serious medical issue, the kind where there are tense moments with respiratory specialists and doctors working frantically. He took the parents some food at the hospital, and then he texted me to say “They have that look.” And of course, I knew just what he was talking about. And I knew The Hubs was probably reliving all the trauma we had experienced with the NICU. It’s hard for me to describe what it’s like to see your kid in a hospital bed, even now, 6 years later and a long time since we’ve had any hospital visits. Panic, and pain, and guilt, and helplessness…it’s a horrible cocktail that leaves a horrible scar. And although we moved forward, and we have a healthy kid and not a fragile preemie anymore, we still have the Hospital Parent look when we talk about The Boy’s birth.

That’s partly why I don’t talk much about this stuff anymore. I used to, when it was still really raw and I needed to process my feelings. Back then, I felt a need to educate the world about prematurity and what the NICU is like. Now, I tend not to, unless I meet someone with Hospital Parent eyes, because honestly? It’s exhausting. It’s exhausting trying to help the world understand that type of pain, because I end up reliving it in order to explain it. And reliving it is extremely unpleasant. But Hospital Parents don’t need it explained to them. Hospital Parents lived it themselves. You don’t have to explain why you have PTSD to them. You can just say “Downton Abbey set me off last night” and they say “Fucking PTSD. You OK?”

But, I also feel like we’re all better parents when we understand each other’s truths. And sometimes that means reaching out to people who don’t have that look behind their eyes, and saying, “This is the truth of my life” and listening to the truth of their life. So, that’s why I’m writing about this today–telling you the secret “handshake” of the secret club that none of us ever wanted to join, that I sincerely hope no one will ever have to join again. I hope you’ll share your truth in the comments, and I’m going to start writing more about the truth of my experiences with prematurity and the NICU. Stay tuned!

World Prematurity Day

Posted on by Beth Caldwell

Today is World Prematurity Day, which is a day when people and organizations join together to raise awareness about premature birth. When I started this blog, I thought I would write more about prematurity and The Boy’s time in the NICU, but I haven’t. I think the reason why is, it’s hard. I mean, really fucking hard. I promise I WILL write it sometime, but I am just not in that headspace right now, and it may take something longer than a blog post, or even a series of them. I will say this: I hope it’s the worst thing that will ever happen to me in my life, because honestly, I don’t have any interest in finding out how much more shit I could handle.

What I want to write about today is about how to be helpful to a friend when they have a preemie. Because, I can’t even tell you how many times I get that question from people in my life. They come to me and say “Hey, my friend/cousin/coworker just had a preemie, what do I do?” Oh gosh, where to start? I guess I will start with this chart, which is just so amazingly brilliant. Go read it and internalize it and then come back. No, seriously, I’ll wait. Done? Good.

When you have a preemie, it’s like, you just had a baby, so you want to celebrate, right? I mean, that’s what we do when people have babies–it’s life renewing itself, they’re adorable, all that jazz. So, first things first, CELEBRATE that baby. Be excited for those parents. Ask if you can se a photo of the baby and say “Aw, so cute!” Help those parents be happy about the addition to their family.

But, also be aware, this isn’t a normal birth experience. This is a kid in the hospital. Your friend’s kid is in the HOSPITAL. Let that sink in for a minute–imagine if your kid was in the hospital, what would your life look like? Empathy is going to be really helpful in this situation.

It’s OK to ask questions about how the baby is doing, and the answers you get are going to tell you a lot about what that family is facing. A LOT about how that NICU experience plays out is going to depend on two things: how early the baby was born, and whether the baby has any complications during the NICU stay. In our case, The Boy was born pretty early–27 weeks instead of 40. Babies born at 23/24 weeks are about the youngest that can realistically survive. They are going to have very very long NICU stays, probably lasting past their due date, and will spend a lot of time on some kind of respiratory support. 25-32 weekers are hit or miss–some have very long NICU stays; others, like The Boy, come home a couple weeks before their due date. Babies born after 32 weeks tend to have short NICU stays unless there are complications.

And Jesus, the complications. This is one reason why I would never ever ever be dismissive to a parent whose baby was born less premature than The Boy. Because, The Boy didn’t have complications. He didn’t get any infections, which can kill preemies alarmingly easily. He didn’t have anything wrong with his heart or his digestive tract, both of which can extend a NICU stay and require surgery. He was what we in the NICU world call a feeder and grower. He ate and he grew until he was strong enough to come home. He had good days and bad ones, but his course towards discharge was pretty unremarkable. A 34 weeker with necrotizing enterocolitis? Yeah, they had it way worse than us, despite being born less early.

BUT! Gigantic huge BUT here…no matter how short a NICU stay is, it is too long. Five minutes in the NICU is too long. So, don’t belittle a parent’s trauma by saying things like “Oh, only 5 weeks early? That’s good, it’ll be a short NICU stay.” NO. It is not “good.” That it could be worse does not mean that it doesn’t suck. Go back and read my post on comparative pain. No seriously, go read it, I will wait here for you. You’re back? Good. Every minute in the NICU sucks. You are not asking questions in hopes of dismissing someone else’s trauma. You are asking so you know what kind of support is likely to be most useful.

Once you have a sense of whether this kid’s NICU stay is going to be a couple of days, a couple of weeks, a couple of months, or longer, then you’ll have a sense of what is helpful. If you’re in the weeks/months range? Buy them gift cards for whatever restaurant is near the hospital (I’m talking as close to the hospital as possible), or pack them a picnic to take to the hospital. You spend a lot of time at the hospital as a parent of a preemie, and cafeteria food gets old very fast. Also, hang in there with them–a long NICU stay is, well, long. And by a couple of months in, a lot of people have dropped out of being supportive.

For any length of stay, offer to do their laundry or clean their house, and when they say, “Oh, I couldn’t possibly impose on you to do that,” say “Please. Not imposing, I am offering, and it would be my pleasure.” Man, what I wouldn’t have given for someone to clean the house for me, so when we came home from a late night at the NICU, the bathroom was clean and the sheets were washed. But I was too uncomfortable to ask, and nobody knew to offer. And ask them if there are any supplies they may need that they hadn’t gotten around to buying yet, like diapers or bottles.

This is a huge thing: when the baby comes home, DO NOT BRING ANY GERMS ANYWHERE NEAR THE BABY. You want to be the one responsible for putting that kid back in the hospital? I didn’t think so. That preemie’s parent is not being paranoid when they say you can’t come over when you have the sniffles. They’re protecting their baby’s fragile lungs, which are way more fragile than a full-term baby’s lungs. The Boy came home from the NICU with bronchopulmonary dysplasia (BPD), and he was one of the “healthier” preemies. Look, I have kids, I get it about the constant stream of boogers coming from their noses in winter. I get that if you wait for everyone in your household to be well, you might not visit that preemie until spring. And I am sorry for your disappointment, but is your disappointment worth risking that preemie’s life? If the preemie’s parents say stay away, please, don’t be a douche about it. It’s hard enough being a shut-in all flu season without a guilt trip from your friends and family.

Most of all, just listen. It makes a huge difference to NICU families to know that someone cares. When The Boy was in the NICU, I quickly learned who I could count on as a friend, and who I couldn’t. The ones who I couldn’t? They didn’t want to listen when I talked about the rough times. They didn’t want to hear the horrible empty feelings I was having, that despite having just given birth, I didn’t feel like I was a real mom. Don’t be that person who can’t be counted on, because I promise you, it will be very hard to fix that relationship afterward.

If you’re looking for other resources on prematurity and how to support NICU families, go check out the March of Dimes website. They have great info, including what little we know about preventing prematurity, and a great message board community for NICU families. I raise money for the March if Dimes every year, because they’re an awesome organization, and their volunteers kept me sane during our NICU stay.

And, I usually am shitty about answering comments here because I am the laziest person you know, but I promise if any of you post a question on this post, I will respond.

Now, go hug a NICU parent! Because, they could probably use one.

Our Best Poop Story

Posted on by Beth Caldwell

The Boy is, and always has been, an excellent pooper. It began in his NICU days when he went through 3, count them, 3 incubators because of poopsplosions. Now, to most parents, a poopsplosion means a diaper that catastrophically failed, releasing poop all ver clothes, stroller, car seat, parents, siblings, etc. Which, pardon the pun, is a pretty shitty thing to have happen and can ruin your day.

That is not what I mean by a poopsplosion. What I mean is, a diaper is off because you are changing him, and you go to wipe, and suddenly, poop is flying across the room. Or, when he was in an incubator, it was splattering all over the inside of the incubator. Generally the pooping was proceeded by a popping sound, and then BLAMMO, you’re covered in poop.

When he switched from the NICU to the less-intensive-care ward at our hospital, the nurse from the NICU handling the hand-over told his new nurse, “Watch out for this one, he’s a serious pooper.” The new nurse kind of rolled her eyes as if to say, “I deal with babies, I can handle poop.” Hahahahaha! No. Seriously, he is a pooper. The very next day, the new nurse looked at me and said, “I should have listened to that nurse. He shot poop through the tails of his crib and 4 feet across the floor. I measured it, I couldn’t believe how far it flew.”

Did you think I was exaggerating when I said poop was flying across the room? I was not.

It should surprise no one that he continued his powerful pooping when he came home. Luckily for me, the absolute most awesome poopsplosion of his career happened just after I had gone back to work full time and The Hubs was working from home (his last work day before going on FMLA leave) and watching him. He’d taken The Boy to the changing table–a beautiful one built by my parents’ neighbor, who was a high-end cabinet maker, so it’s now been pooped on by two generations of my family–and had taken off his diaper, and was wiping The Boy’s little bum, when that wonderful pop sound happened.

Now, the changing table was located by the door of The Boy’s bedroom. So, the poop shot off the end of the changing table and splattered all over the door. Mess enough. But what makes this story so awesome is that at that exact moment, our cat, Charlie, happened to be sitting between the door and the changing table.

I can only imagine what it must be like to be a cat, seeing as how I am not of the feline persuasion. But I think if I were a cat, and I was sitting in a nice sunny carpeted spot on the floor, minding my own business, and suddenly SHIT WAS RAINING DOWN ON ME FROM ABOVE, I would probably freak the fuck out and run for my life.

And that is exactly what Charlie did. He ran. And he tried to wipe the poop off himself by rubbing up against door frames and walls as he ran. And then he took cover, which also seems the prudent thing to do when it’s raining poop. And where he took cover was a place where he knew no more poop could fall on him: under our bed.

When The Hubs called to tell me about this poopsplosion of all poopsplosions, I could not stop laughing. The poor guy. His last work day pretty much ended right there, because it took the rest of the afternoon to clean THAT hot mess. And I was really, really glad to be back in the office.

So, the next time your kid has what you call a poopsplosion, just think to yourself, “At least my kid didn’t just shit on my cat.” And think of poor Charlie, who learned a valuable lesson that day: don’t go anywhere near the changing table.

Comparative Pain

Posted on by Beth Caldwell

I’m about to get deep, y’all. You might want to turn off the TV and get out your ADD meds for this one. I was watching Reverend Al Sharpton speaking at the 50th anniversary March on Washington (yes, this white heathen woman DOES like The Rev) and something he said made me have something to say, that involves saying the word “shitty” a lot.

I tell a lot of people, including all you lovely folks, about The Boy being early and spending 9 weeks in the NICU. So, a lot of people know what happened, and that, you know, it was a pretty shitty thing to live through. Because of that, I find that when other friends have birth trauma or kids in NICU (which happens waaaaaaaaaaay too often) but their experience is less shitty, like, they only spent a week in NICU instead of 9, they seem to feel like they shouldn’t be allowed to complain to me about their birth trauma or their NICU stay. Like, because my experience was shittier, they shouldn’t complain about their slightly less shitty experience. And they often say apologetically “But I know you had it so much worse.”

Fuck that noise.

See, here’s the thing. There is always someone who had it worse. I know people whose kids are permanently disabled from their prematurity. I know people whose preemie died. Did they suffer something shittier than I did? You bet. Does that mean what happened to The Boy was no big deal? Of course not. The NICU is shitty. It’s shitty if your kid is there for an hour, and it’s shitty if your kid is there for a year. Having something shitty happen to you is shitty, and no matter how much shittier someone else has had it, it doesn’t mean it wasn’t shitty.

AND, I feel like it’s uncool of me to belittle another NICU mom’s pain just because she has it less shitty than me. I think I should be sympathetic and try to give her the support she needs, and not say “Well I had it worse, so you should just suck it up.” So, when a mom says to me “I know you had it worse” in that apologetic way, I always say, “Hey, even an hour in the NICU is shitty.” Comparing our pain to see who’s had it the most shitty is stupid and pointless and creates walls between us. It makes more sense to acknowledge that we’re all struggling, and try to understand the flavor of each other’s struggles, and work together to support each other.

What does all this have to do with The Rev? Well, during the March on Washington this year, he said, “We need all of us together. These bogus arguments about ‘Well, they didn’t suffer like us’ or ‘They are not as bad as us.’ The most insane thing for sick people to do is to lay up in the hospital debating about who’s the sickest. We all need to unite and get well together. We should not be comparing pain. We ought to be strategizing and coalescing for all of us to have equal justice under the law and equal opportunity.”

It was like The Rev and I were sharing a brain.

See, lots of us face challenges in our lives. Some of us have bigger challenges, or multiple challenges, or different kinds of challenges. Arguing about whose challenges are hardest is stupid and pointless and it keeps us apart. It makes more sense to acknowledge that we’re all struggling, and try to understand the flavor of each other’s struggles, and work together to support each other through whatever those struggles are. And that goes not just for NICU moms, but all of us whose lives could be made just a little bit easier if we support one another.

Why You Should Never Let Your Husband Touch Your Breast Pump

Posted on by Beth Caldwell

When I was pregnant with The Boy, my plan for feeding him was at I would nurse until he grew teeth, and then I figured I would be too freaked out at the possibility of my nipple being bitten off to want to stick it in his mouth anymore. I also planned to pump when I went back to work, and I wasn’t really sure if I would keep pumping after I stopped nursing.

Then, I have written before, The Boy ended up being born 13 weeks early. Babies that premature can’t eat right away. They just don’t know how to suck, swallow, and breathe the way a newborn does, because their brains aren’t ready for something that complex. So, instead, The Boy got his first nutrition through an IV, and after that it came through a feeding tube. And what they put in that feeding tube was my breast milk, mixed with a calorie fortifying formula, to help him bulk up.

I started pumping on the day he was born, using a loaner pump from the hospital. It was a ginormous thing and it took me a while to get the hang of getting the flanges arranged on my breasts and working the controls on the pump at the same time. So, my first pumping session home from the hospital, I asked The Hubs to adjust the suction while I held the flanges on. I kept telling him “A little more, a little more” and that’s when he decided it would be easier to start at the maximum suction and dial down instead. (Exhaustion makes even smart people do stupid things.) The string of swear words that came out of my mouth at that moment would have made Ava Gardner blush. He was not allowed to touch my breast pump ever again.

Once he was big enough to try feeding by mouth, he both bottles of his breast milk-formula cocktail, and we also tried nursing. Now, most preemies tend to do better nursing instead of bottle feeding–it tends to make their heart rates and breathing stabilize. The Boy, however, was the opposite, and he would desat horribly when I tried to nurse him. After a couple of attempts that didn’t go all that well, I decided maybe it was best just to feed him bottles until he got home from the hospital, and then make an attempt at nursing in the comfort of our own home, where we no longer needed to worry about him desatting. So I kept on pumping.

But at home, the few times I tried to nurse him, he screamed bloody murder. The Boy wanted nothing to do with my boobs, period. Holding a screaming, unhappy baby who was rejecting me felt pretty damn shitty. It felt like the opposite of bonding with him. It felt like torture. We both cried. And I quickly decided that I would just keep on pumping. And I did, until he was a year old, when I decided I had had enough of the pump and I stopped.

I didn’t choose to exclusively pump, if you really think about it. My son’s prematurity made that choice for me. It was one of the many times that I had little control over how I could parent my child during the first year of his life. His prematurity was driving the train pretty often.

What I took away from the experience of feeding The Boy is that feeding your baby is a super emotional thing for moms. It was one of the biggest surprises about becoming a parent for me, just how emotional a thing feeding is. How much it hurt my heart when The Boy refused to nurse. How powerful it felt to be able to provide him with breast milk even though my body couldn’t carry him to term. Feeding you child is just a very emotional thing.

And this is why it is so important to be extremely careful when you talk to other moms about how they feed their child. Because it is so emotional, it is very easy to come off as a Judgy McJudgerson when you talk to other moms about how they feed their baby. It’s easy for well-meaning comments to be received as judgment. Especially because, for many moms, what they planned for feeding didn’t work out for reasons beyond their control, and so the judgment they feel about their feeding method feels especially unfair.

And because it is so emotional, that is also why I think it is so important to help women feel supported in whatever feeding method they use. I honestly believe that most American women are aware of the benefits of nursing. They know breast milk’s benefits, or if they don’t, someone will tell them about it at some point in their pregnancy. Most women are not stupid. They gather information and then make a decision about how they will parent based on that information…or, the realities of their situation dictate their decision.

So, I think the best approach to discussing this topic with other moms is to ask open ended questions, and then to LISTEN to them. Listen to them talk about why the feed the way they do. And then tell them “I support you.”