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.

newborn bufflogals

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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on dealing with anxiety

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It was only 9 a.m., and I had already screamed at every single member of my family and had just broken down in tears. I could see in my husband’s eyes that things had gotten bad.

“I see the way you look at me, like you don’t like me very much right now. I don’t like me very much right now either, but I don’t know how to feel or do any different. I feel out of control all the time.”

He wrapped his arms around me as I cried and cried. And then he gently told me that while he knew I had an appointment in a week or so to talk to my doctor about my anxiety, but that he thought maybe we should talk to her about doing something NOW. I could only agree. I talked to my doctor on the phone, and after I described how I’d been feeling, she gently suggested that I start taking medication that night, so I could be on it for several days by the time my appointment came around.

As I took that first pill, I felt more hopeful than I had in a while, even though I knew it might take a while for the medication to begin to help.

The last few months have been very hard for me. I am not generally a person who yells at people or regularly breaks down crying, and it had begun to happen a lot. It was like I was walking around all the time at stress level 8, and every small setback, even things like my kids refusing to put their pants on or my inability to parallel park, would trigger explosive rage or tears as my stress level hit 10 again and again. My whole body vibrated with tension. My muscles in my head, neck, and face were so tight, my teeth hurt. And I was having to take melatonin every night just to slow my racing mind down enough to fall asleep.

I know it’s normal for people who are preparing for a big life change like a cross country move to feel tension and stress, but my feelings had become overwhelming past the point of my control. I felt awful most of the time, unable to find bright sides or hope, unable to feel anything but scared and angry and sad. Not a good way to live.

Within a few days of taking the medicine, I was sleeping much better, but still feeling very easily triggered. We have eased my dose up a little bit, and now that I’ve been on it for longer, I feel maybe 70% of my normal self? I hope to get to feeling even more back to myself as I am on the medicines longer, and my doctor says if I’m not feeling 85% or so in a month, to let her know. Already, I’m not screaming at my family constantly. I haven’t cried in days. I am so glad I had people in my life who encouraged me to get help.

And I’m sharing this with you because we don’t talk about this kind of stuff often enough. First, you feel bad because of the anxiety, and then you feel bad because who wants to admit that they keep finding themselves yelling at the people they love most, blinded by rage and fear, falling apart at every turn? But that stuff wasn’t ME. That stuff was anxiety. And for me, this anxiety was a sickness that needed medicine.

And I want to talk about this so that anyone out there reading who is feeling awful most of the time, who is feeling panicky and fearful and rageful and wired, knows that it’s not just you. You don’t have to keep feeling terrible all the time. You don’t have to be ashamed to ask for help. And you deserve to feel better.

stop the presses: there’s a workout I don’t hate

I found a workout I don't hate: a roundup of YouTube dance fitness videos.

So, a funny thing happened over the last month: I became a person who doesn’t just occasionally climb mountains, but one who *gasp* actually works out regularly. Yeah, I don’t know who I am, either.

Somewhere between my kids becoming 3 year olds who don’t wear me out quite as much, becoming a heart health ambassador, and just wanting my pants to fit a little looser, I decided I had the time, energy, and desire to do something fitness-wise. I’ve always been a healthy eater, but my main source of exercise has been chasing, lifting, and caring for my kids. It turns out when you turn 30, that’s not enough to keep your weight steady, if you’re me. I love my mombod, but knew both my heart and my waistline needed a change. The problem was, I generally hate exercise. I like hiking, but that’s not very fun in an Arkansas summer. I like yoga, but that’s not generally cardio. I will never never never be a runner, because I straight up hate it and have flunked out of the Couch to 5k program twice. But then I remembered I don’t hate dancing, so maybe I could give that a try. Dancing has the added bonus of being something I can do in my air conditioned living room while my kids sleep, or even with my kids, and it’s good cardio.

I found a workout I don't hate: a roundup of YouTube dance fitness videos.

My workout partners.

I ordered a set of Zumba DVDs from Zulily but the shipping was going to take a while, so I started looking for workouts on YouTube to try in the meantime. I’ve managed to find a decent mix, and shockingly, have managed to work out for about 20 minutes almost every weekday for the last month. I don’t actually hate this! In fact, I am feeling more energetic, drinking slightly less coffee (slightly), and am actually starting to feel like my clothes fit a little bit better. It’s not some dramatic story about jumping around in my living room and suddenly dropping 3 sizes, but that’s not what I wanted, anyway. I just want to take better care of myself, my heart, and my body.

I feel I should note that I feel like the world’s flailingest white girl while pelvic thrusting and shimmying in the privacy of my own home. I would DIE if even my husband saw me doing it, though I’m fine with the bufflogals joining in from time to time. But it doesn’t matter that I probably look ridiculous– I can be Beyonce in my mind. If I need inspiration to go ahead and “jiggle it,” this video is ample motivation:

I thought I’d share some of my favorite YouTube dance workouts in case any of you would like to flail around your living rooms in the name of fitness, too. Here’s to having at least a little fun in the name of getting healthier.

Do any of you do at-home workouts via YouTube? Got any faves to share?

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.

exercise: my heart was never in it

I did a color run, once. I mostly walked.

I did a color run, once. I mostly walked.

All my life, people have looked at my long legs and asked me if I’m a runner. While I have an uncle who’s an ultramarathoner, I have never, ever liked running or really exercise of any sort. For most of my life, I thought this was because I’m just wimpy, lazy somehow. I could never complete the entire President’s Physical Fitness Test mile without a large bit of walking. Pretty much all physical activities left me easily tired and winded, so I never really played sports or learned coordination or balance. I can’t really stand on one foot. I am MASSIVELY clumsy.

Three years ago, I learned the real story behind my fainting Victorian lady’s constitution: I have a heart defect. Exercise has always left me winded and fatigued because my heart was already working as heard as it possibly could just keeping me alive. Asking it to go above and beyond was just not gonna fly. Finally, just the stress of keeping me and two other people alive sent my heart into actual failure.

Now my heart is able to function in a normal range because I take some pretty serious medications. But I still feel weird when I exercise (or visit a high altitude locale) because my medicines keep my heart rate very controlled– for most folks the goal of exercise is to get your heart rate up, but mine’s not really going to go up, no matter what I do. Even when I stood on a stage and talked about the scariest thing that ever happened to me, I worked up a good sweat but my heart didn’t beat a bit faster. Instead, when my heart rate should be climbing, I feel like I always have: easily winded and overtired.

Still, I know that if I want my heart to be healthy in the future, I’m going to have to figure out how to exercise. I don’t want to, because I, shockingly, don’t like doing things I suck at. I don’t enjoy being the flailing person at a gym. I project all sorts of thoughts into other people’s heads about how insane I look and how pathetic I am getting winded just barely jogging. Not to mention, finding time to exercise when you have twin toddlers is tough.

But after reading this awesome post from a fat woman who designed a successful fitness app, I’m feeling inspired to try to do SOMETHING more than I do now:

For the vast majority of people, competition in exercise is not fun. It’s no fun to compete if you know you can never win. It’s no fun to be on a team if you know you’re bound to let everyone else down with your performance. The rhetoric of ‘more, better, harder, feel the burn’ doesn’t work for who those of us just want to use our bodies and enjoy being in them.

I remember really liking yoga for a while there. I think that’s something I might be able to achieve via videos during a couple nap times per week, but I can’t give up all my nap times, because those are also usually my writing times. I also don’t mind walking, and think maybe I could make that happen a couple of times per week too. I’m not likely to take up running or anything else hardcore, but I can move more so that I can take care of my heart and feel more connected to my body, to enjoy being in it.

In the meantime, if you see me struggling up a hill in the neighborhood know that my heart is trying really hard to be in it.

Dear me on diagnosis day:

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Over the past three years, there have been many times that I’ve thought about me on our Diagnosis Day, the day we found out that one of the babies then growing in my belly had spina bifida. It was my 27th birthday. We were excited to find out if our twins were boys or girls. We found out they were girls, and we also found out “Baby B,” the “one in the top bunk” had something wrong with her head and spine.  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.

Continue reading