Jon tells the story of the worst April Fool’s ever

As he mentions, I’ve been trying to get my husband to write down the story of the girls’ birth and my near death for a while. I’ve written extensively about the experience and its aftermath, but my perspectives are blurred by my trauma, my sedation, and my lack of a medical degree. Here we are four years later, and both Claire and I are healthy and strong. I will always have a heart defect, and she will always have spina bifida, but it feels so good to take a moment and realize how far we’ve come from those very scary early days. Here is that story in the words of my husband Jon, pediatric ER doctor, love of my life, and amazing dad to two very lucky little girls: 

I told Sarah I’d write this down over 4 years ago. To be a guest blogger.

I’m not the writer she is (obviously), but she’s not the doctor I am (thankfully).

I have told the story of how I spent one terrifying night in the hospital with all three of my girls in three different ICU’s many times. However, I was recently telling someone, and was having difficulty remembering the sequence of events, and I knew I had to write it down.

My first feeling after Etta and Claire were born was that of overwhelming joy. My first thought upon seeing Claire, was about how much worse her spinal defect was than I was expecting. Her defect had been, after all, so small that all we had seen on prenatal ultrasound was a subtle finding of her head being slightly more oblong than expected. While trying to look at her spine on ultrasound, nobody was ever able to see the defect. Therefore, we assumed it was very small. I was not prepared to see her open spine seemingly taking up her entire lower back.

She was whisked away to children’s hospital, where she was expertly taken care of, had an amazing course, and is exceeding all expectations.

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The story I want to tell, though, is about Sarah.

In the first 2 exhausting days, she was learning how to breastfeed. She had lost so much blood during the C-section that she required a transfusion. She was dealing with lots of pain, both physically as she was recovering from surgery and adjusting to the huge shift of fluids and weight, and mentally, as she was separated from Claire. However, she was slowly improving and gaining a small amount of endurance, and gaining hope that we could all go visit Claire, who was recovering from her own surgery, soon.

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Sarah was doing so well that they asked us if we wanted to go home. We decided to stay for one more night, to work on breastfeeding another day with Etta and the lactation consultant, and to gain a bit more strength before giving it a go on our own.

Thankfully, we stayed.

The next day, on a bright, sunny, Sunday morning, Sarah was walking the 8 feet back from the bathroom all by herself for the first time, and she started feeling short of breath. “Well, that’s OK,” I thought. “You made it! Way to push yourself!” Sarah sat and tried to catch her breath, but couldn’t, so we called the nurse. She came in with a pulse ox monitor and put it on Sarah. It read 80. I knew something was wrong.

“Take some deep breaths,” the nurse said.

“No, you go call the doctor, right now” I responded. You can’t deep breathe out of a pulse ox of 80.

The OB intern entered next. She looked at Sarah from the doorway (never got close enough to listen), and seemingly nonchalantly (although I’m sure she was terrified) said “I’ll order an EKG.”

I’m not sure what she was thinking, because I was only thinking one thing. PE. I thought Sarah had a pulmonary embolism (a blood clot in an artery to the lungs, a possible surgical complication), and needed a CT scan of her chest at minimum, if not just starting treatment for it.

During all this time (it felt like hours) Sarah was slowly getting more short of breath. I was desperately trying to remain calm and let the doctors and nurses do their job, but I also requested that the intern please call her attending.

I happened to have her attending’s cell phone number, so I also called her. She didn’t answer, and I’m sure I left the most pitiful, desperate message about the poor state of my wife’s health she’s ever heard.

Well, Sarah became more short of breath, and they called a MET call, meaning a rapid response team that included ICU nurses and respiratory therapists came to help. They applied more monitors and attempted to place an oxygen mask on Sarah. However, at this point, I could hear crackles when Sarah was breathing from the doorway, and realized she was getting worse. She was hypoxic still and likely in her oxygen hunger, she felt smothered by the oxygen mask and was pushing the respiratory therapists away. She would occasionally steal panicked looks to me with her expressive eyes saying “Help. Please. Now.”

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I felt helpless, though. At some point (I can’t remember when) the nurses took Etta away from me and to the nursery. I stood there and knew what needed to happen. Sarah needed to be sedated and intubated. I didn’t know what was going on exactly, but I knew that. The respiratory therapists called the ICU residents, who came, evaluated Sarah and talked to me. They recognized me.  I recognized them. They said “We need to intubate your wife, are you OK with that?” Which is crazy, because why would they ask my permission? But it was an awkward situation for them I’m sure. I said “yes, please!”

I certainly didn’t watch them sedate and intubate my wife. I pushed back the thoughts that this might be the last time I saw my wife alive. That I might be tasked with the job of caring for my two beautiful babies all on my own.

A CT got ordered, and Sarah was taken to the CT scanner, which is by the ER. I somehow met up with her dad, who is also an ER physician, and we headed to the ER to get a first look at her chest CT, fearing we would see a PE. We found a resident, who scanned through the images with us, and we saw nothing. No answer. Why then?

Sarah got moved to the ICU, and I met Mack, her nurse. I also saw a frantic intern who scrambled to examine her, attempt to get enough of the story to get some orders in and present her during rounds, which were starting. I was allowed to listen in on rounds, and was able to ask for a lactation consult—knowing that her milk was just coming in, and not wanting her to be in pain. I’m sure they had to tell the lactation consultant how to get to the ICU-they don’t go there much.

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I then remember the OB attending, Sarah’s doctor, meeting me in the ICU waiting room. Saying how sorry she was to miss my call and having rushed in to see how Sarah was. So sweet. Everyone cared so much.

They asked me multiple times if Sarah was an alcoholic… because Sarah took such a high dose of sedation to keep her calm. She was calm, but quite awake. We would tell her where she was, and she would answer with her eyes and her eyebrows. Quite lucidly. She seemed to be aware.

At some point during that Sunday, she had a bedside echo performed by the first year cardiology fellow. The report was: it was a limited view, but looked OK. Still, no answer.

I took a break from her bedside and her mom stayed with her. I went to see Etta, who was in the nursery ICU, as they no longer have a regular nursery. She was in a crib all alone in a big room. I held her and sat and tried to process, but couldn’t. What was wrong with Sarah? Would she pull through?

I think it was later that night when we got word that the cardiology attending had looked at the echo and said no, it wasn’t normal. Sarah in fact had exceptionally poor function. The pieces started coming together.

I stayed with Sarah that night. When the night respiratory therapist came in to evaluate, I had seen that they had taken about 6 liters of fluid off of Sarah and she was breathing very comfortably. “What’s the plan tonight for weaning her vent support” I asked. “Oh, I guess I can work on that tonight” was the reply. She started bringing down her support to “normal” levels throughout the night.

Then, when I just snoozed at about 1am, I woke up to beeping. I found Sarah, with her eyes wide open, holding her breathing tube out to the side of her face. She had a look of shock and confusion I will never forget. She had pulled out her tube! I called the nurse to evaluate, and he put her on oxygen, but she continued to breathe easily. They reduced her sedation and she slowly became more cognizant and talkative. I was so relieved that she was back.

I can’t imagine life without her.

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First photo as a family of four, 9 days later, in the NICU with Claire.

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mombod

The other day, I started noticing a phrase in people’s tweets. “Dadbod.” At first I just thought it was some sort of inside joke among some of the writers that I follow, like the physical embodiment of dad jeans, or something. But I soon realized that they must be getting this dadbod thing from somewhere. So I did what I usually do (read, used Twitter as my own personal Google) and tweeted something like, “I’m going to need a dadbod origin story. What the heck are you guys all talking about?” I mean, when childless hipster friends on Facebook have started to mention their “dadbods,” there’s some kind of Thing going on. Helpful folks on Twitter led me to this piece from The Cut, which was apparently riffing on something a student at Clemson named Mackenzie Pearson wrote. Basically, “dadbod” is what frat boys with beer guts are now calling their physique. Like, I’m not ripped because I’m too busy having fun, please enjoy my dadbod.

The gist I got from The Cut is that dadbod is something some folks are into. Like folks who really dig Seth Rogen and Jason Segel. I’ve been known to say a dude looks like “a cute dad,” and I happen to be married to a pretty hot dad, so I guess I might fall into the dadbod fandom. Dadbod is apparently just a funny hip coinage for an average, healthy male body that doesn’t spend a ton of time on like, Crossfit or something. If you were to call it what it really is though, you’d probably call it average.

At the end of the piece, though, one of The Cut’s editors says “I can’t stop thinking about how offended I would be if men were talking about the ‘Mombod.'” Except PLENTY of people have made it clear that “mombod” is an actual thing, yes, but also a thing to be avoided like the plague. No one writes appreciation pieces about the mombod and how “doughier tummy areas are good at sex — better, even — than, say, a ripped-abbed [person].” Because obviously, we doughy-tummied mommies are not sexual beings but rather sad sacks who need to GET THAT BODY BACK, RETURN TO OUR PRE BABY BODIES, GET A BEACH BODY, ROCK THAT BIKINI POST BABY, ETC.

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with my mombod in my mom jeans with my offspring.

Dudes are allowed to have “dadbods” and be seen as cute for it precisely because their worth isn’t as intrinsically tied to their appearance the way women’s worth is.

Here’s the thing though: mombod is real. Some women get “back” to tight abs and perky boobs after they become moms, but I’d venture that most of us are changed in at least some way by the experience, and there isn’t really any going back. Even if you “lose that baby weight,” stuff just isn’t the same anymore. We can see our bodies as damaged goods, or we can embrace the transformation. Growing twins may have left my midsection softer and my belly button unrecognizable, but it also made me feel more deeply connected to my body. And you know what that is, really? A sensual experience. An empowering experience. And sensuality and power and even softness are sexy.

So. If “dadbod” gets to have a moment, if we get to admit that “imperfect” male bodies are desirable, let’s do the same for “mombod” too. Whatever body you have, mombod, dadbod, rippedbod, fatbod, YOU are what make your body sexy, not the other way around.

on “pregnancy abs”: NOPE

Being pregnant is a very strange experience. I would say “out of body” but it’s really the opposite: it’s deeply embodied. The physical reality of gestating two humans inside of my rapidly changing body radically and forever altered my relationship to myself. When we saw that second blob on an ultrasound screen and learned we were having twins, my husband’s oh-so-charming first words, with tears of joy in his eyes, were “you’re gonna get SO BIG.” He squeezed my hand supportively. I did not murder him because I was in too much shock.

Thus began a 9 month funhouse of physicality. There was never a moment in all that time that my body, my physical self, wasn’t somehow on my mind. I watched my belly and boobs expand, smeared my stretching, itchy skin with lotion, and wondered if I’d get stretch marks. I saw my belly button pop out, never to go back to its innie state. I felt surges of hormones and nausea. In my sleep, I snored like a chainsaw and drooled like a fountain. I discovered that restless leg syndrome wasn’t invented by a drug company but is in fact a very real thing that makes you contemplate DIY-amputation in the middle of the night just to get some relief and rest. I felt my sciatic nerve like never before. I had some of the best hair days of my life. I discovered two babies is enough to make a uterus officially, diagnostically “irritable.” I was constantly aware of the fullness of my bladder and its relationship to my insatiable thirst. I discovered that literally everything caused heartburn.

Strangers noticed my physicality, too, and decided I was an object fit for comment. By mid-pregnancy, everywhere I went, people looked at me like a baby might just FALL OUT at any moment. Sometimes they stopped in their tracks and just said “WHOA” as I waddled by.

But this experience, as mortal as it made me feel, was also deeply liberating. I was both bound by my oh-so-human frame and completely freed from many of my previous hangups. I focused on my diet more than ever before, not in an effort to lose weight, but because I was worried about preterm labor and wanted to grow my twins as big as I could before they would arrive, however soon that might be. I largely relinquished control over my looks and just reveled in my midsection’s seemingly unstoppable growth. I actively tried to gain a pound a week, which felt downright radical in a culture that seems to think women should constantly and forever be working to lose weight.

And then when my babies did come, I was far too busy and too tired to give a flying fig about “losing the baby weight” or “getting my body back.” Thank God.

All of which to say, screw the idea that “pregnancy abs” are something any gestating human should be worrying about. There is now literally no point in a woman’s life where she’s given a break from cultural expectations about her appearance. I went from “too tiny to be having twins” to “so big I must be about to deliver any minute” without a single “acceptable” moment in between. But most of the time, I didn’t even care, because I was enjoying a hiatus from listening to or caring about those voices. I got to experience my body as a body, just doing its bodily thing in a way that was life-changing. I am now more in touch with my physical self, and more admiring of its ability to do what it has to do to keep me and others alive and growing, and I feel downright ragey at the idea that any other woman needs to spend a single precious second of her pregnancy (or any of the rest of her life) worrying about her ABS.

If you’re one of those women who can run races while massively pregnant because that is what you love to do and it makes you feel good in your body? More power to ya. If you’re like me and pregnancy is hugely exhausting and physically draining and just managing to walk feels like winning an Olympic gold medal? More power to you, too. Our bodies are unique, amazing, and OURS. How they should look isn’t anyone else’s business.

Why I Go Red for Women: I’m a Survivor

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Today is National Wear Red Day for the Go Red for Women campaign from the American Heart Association. I’m wearing my red, not just because I think heart health is important, or because I know that heart disease is the #1 killer of women (heart disease and stroke kill 1 in 3), but because this fight is personal for me: I’m a survivor. Not just in a Beyonce sense, but as a literal actual survivor of a congenital heart defect, a cardiac pregnancy complication, and heart failure.

On April 1, 2012, I was three days post-c-section. My recovery had gone slower than most, and I was still in the hospital, a fact for which I now thank God. In the wee hours of the morning, I woke up and finally felt strong enough to try to walk the few feet from my hospital bed to the bathroom. It felt triumphant. My husband assisted me, one of our new babies nearby in a bassinet*. But as I inched my way back to my hospital bed, every inch of my recently-ripped-apart abdomen screaming in pain, I found it hard to catch my breath. “I can’t breathe,” I said to Jon. He’s an ER doctor, and his mantra is generally “if you can talk, you can breathe,” so he helped me back into bed and told me to relax and catch my breath. But even after sitting down, it was getting harder and harder to fill my lungs with air. Continue reading

the #1 thing I want you to know about Spina Bifida isn’t about folic acid

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It’s apparently folic acid awareness week. Which means I’m on my soapbox again.

It started when I saw the posts from the Spina Bifida Association on Facebook, again letting their audience of people who already have SB in their lives know that SB can sometimes be prevented by making sure women of childbearing age are getting enough folic acid even before they become pregnant, as neural tube defects happen so early in a pregnancy that by the time you miss your period and start taking your prenatal vitamins, it’s too late. But I have a feeling if you’re following the SBA on Facebook, you already know that.

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so, you just found out you’re having twins…

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Dear couple staring in disbelief at an ultrasound image of TWO babies,

Hi. You might be feeling a lot of feelings right now, and those feelings may be giving you other feelings too. Like, maybe you’re a little bummed out and the difference between how you feel and how excited everyone else seems to be about this twins thing might be making you feel a little guilty on top of the whole feeling bummed thing. I know.

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the heart of a mother

On Mother’s Day, I had the amazing experience of reading part of my story in the Listen To Your Mother Show here in Little Rock. Now, even if you weren’t there, you can see my story and the rest of the amazing stories from around the country, thanks to the magic of the internet and You Tube. Today, I’m posting my story here, but I encourage you to watch some of the other videos too, from Little Rock and around the country. And, coming soon, for the first time, my husband will share his version of this story, both from the perspective of the man who was holding our baby girl next to my bed when I went into heart failure, and from the perspective of a doctor, who probably would have intubated me himself while we waited for the code team to arrive, if there had been a crash cart nearby. Luckily, he didn’t have to. Blessedly, all was well.

Here’s the story of how I discovered I have the heart of a mother: