My kid has spina bifida. The AHCA is a nightmare bill for kids like her, and pro-lifers should be calling their Senators in droves.

I decided, in light of the AHCA, to research the average cost of health care for people with spina bifida. They call them “million dollar babies” for a reason. The first year, according to an article I found on PubMed, is $41,000. Every year after that is around $14,000. (The first year is the most expensive, usually, because of neurosurgery and NICU stays. I’d bet we racked up more than $41,000 in our first month of life.)
In Arkansas, we had private insurance, as well as Medicaid TEFRA, for which we paid an income-based premium and which we qualified for on the basis of Claire’s disability. It covered 100% of what our insurance didn’t. And there’s a lot that insurance doesn’t cover, but that is necessary to help kids with SB be as independent as possible, like therapies and developmental preschool. In Colorado, a supposedly more progressive state, we still have private insurance, but no Medicaid. We end up paying more out of pocket for our daughter’s care, even though we are privileged to have excellent insurance because my husband works for the university hospital.
I remember when I testified before a committee about Arkansas’ proposed 20 week abortion ban. I talked about how 20 weeks is right around the time that people usually get a fetal diagnosis that changes their very wanted pregnancy into a nightmare. One thing that people are wondering when they get that diagnosis is, can we afford to provide this child with the care she will need for the rest of her life? Will this bankrupt us? It’s a very real consideration. And I have read that 60% of people who receive a fetal diagnosis of spina bifida choose termination.
I’m pro-choice. I support safe, legal abortion care for any reason. However, I also truly believe that there are ways we can help people keep these WANTED pregnancies instead of terminating. And one of those ways is helping them afford the care their disabled kids will need for their entire lives.
The AHCA comes from the supposedly pro-life party. And yet this is a deadly bill for people with disabilities, many of whom depend on Medicaid for their life-sustaining care. This bill will make the answer to “Can we provide this child with the care she will need?” a “no.” I am confident it won’t help, and will in fact increase, that 60% termination statistic.
It also creates new worries for us as parents of a kid with spina bifida. Will she stand to have her coverage capped at some point? Will our insurer say, welp, you’re at the limit, we won’t pay any more for you, and kick her off? Will she be able to get a new policy with her pre-existing disability? Will she be able to work as an adult, or will she have to stay unemployed, lest she get too “rich” for her meager benefits? Will my husband have to stay in his job forever to ensure we keep the insurance we have now, because she might not be covered if we have to switch providers?
If you haven’t already called your senators about the AHCA, please do so. It’s a needless “screw you” to Obama that will cause pretty much everyone to pay more for less coverage, and will literally lead to people dying and pregnancies being terminated. Repealing the ACA and replacing it with this cruel bill helps no one but rich folks who will be getting a tax cut. Please call your Senators and oppose this bill. Today.
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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.

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.

i hate april fool’s

I hate April Fool’s Day on the internet. Some pranks can be funny, but mostly they just make me feel frustrated and annoyed. Plus, I always feel kind of Debbie Downer-ish on April 1st. Four years ago, on a bright, shiny, April 1st morning, I almost died.

On Easter morning, my pastor mentioned in his sermon that he had never had a near death experience. That he had never felt outside his own body while teams of healthcare professionals worked to save him. He went on to talk about how he had felt life-less, though, had experienced darkness, despair, depression, and how this life-less-ness is something we all can relate to, a reason we all need to experience the Life Abundant that Jesus offers. I appreciated that message.

But as I sat there, I must admit that I missed a lot of the sermon, because I have had that near-death experience. I have felt suddenly all too aware of my body’s own frailty. As my heart failed and my lungs filled with fluid, my body became a prison. As respiratory therapists, nurses, and doctors fought to save me, I felt helpless and panicked and irrational. I pushed masks meant to help me breathe away because they felt suffocating. I fought the people trying to save me as I fought for my life. And in the middle of it all, I remember thinking, they’re going to have to sedate me, or this is never going to work. Flashes of lucidity in the middle of sheer panic and terror. I remembered all of that on Sunday morning, and so I distracted myself grinning at a small boy in front of me wearing a seersucker suit instead of going there in my mind.

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This is actually a picture taken during the girls’ delivery, not of me when I was intubated.

It’s a weird thing to be a person in the world after something like that. Around the first year anniversary mark, I was having panic attacks and intense anxiety, because I’d been so busy keeping twins alive, I never really got a chance to process what happened to me until a year later. Now, four years later, I mostly forget about that time I almost died. I can tell the story in such a way that it makes people laugh, even. Or I can shock even healthcare professionals as I tell it in as vivid a way as possible. Somehow the process of turning an experience into an anecdote has placed some distance between me and the intensity of the feelings I have about that trauma.

Also, though I take pills every day to keep my heart from every doing THAT again, I mostly don’t think about it too much. But sometimes I’m reminded unexpectedly, or something brings it up– someone asks if I’m going to have any more kids, for example–and then I remember that time I almost died. I’m usually sorry I have to mention it, like I need to spare the other person from the news of my trauma. I worry about becoming That Girl Who Won’t Stop Bringing Up That Time She Almost Died. Do people want to avoid me in case it comes up? I can’t imagine it’s really what anyone wants to hear about over cocktails. I’m even wary of writing too much about it for fear this blog becomes That Downer from that Girl Who Almost Died Once and Can’t Seem to Get Over It.

But I can’t avoid this day. It’s a marker of time for me. I was a different person before April 1, 2012, and I’ve been a different person ever since. Sometimes I think my experience made me fearless, because nothing short of death itself can ever be as scary as that day was. Other times I think it made me feel more fragile, a little too aware that it could all be over in a blink, more than a little afraid that it will be. On this anniversary, I’m not much of a person who can take a joke. I feel a little bit raw and a little bit fragile, though I am also pretty sure each year will lessen those feelings as I put more distance between myself and the trauma of that day. I hope so.

 

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?

I got high in Yellowstone

  
Sometimes I can’t resist a cheeky post title. The truth is, I climbed a mountain in Yellowstone, and I never would have thought I could. Not three years ago, when I almost died, but really not even before that, when my heart was weak and had a congenital defect I didn’t even know about, in all the years before I almost died, when I thought I was just a wimp with no endurance.

But when I found out I’d get to go with my husband to a medical conference in the Tetons, I knew I wanted to try to push my limits. I’ve been in “normal cardiac function” range for the last two years, and I’ve been feeling stronger than my old wimpy self. How could I go to some of the most majestic wilderness in the world and not hike? And then, when I started researching hikes and saw that National Geographic had named a 7.2 mile “moderate” hike to the top of Mount Washburn as THE most legendary day hike in Yellowstone, I got a little crazy and decided we had to try it. I mean, they said it was “a day hike that carries the hiker directly into the park’s essence, where its iconic beauty and mystery are on vivid display,” and “this classic hike, a must-do that many do over and over as a virtual pilgrimage, is really about the views.” Who could resist that pitch, even with a bum heart?

I have to be honest, I really didn’t think I would make it up to the top. I figured I would try really hard, but thought I’d get really tired at some point and have to turn back. I warned my husband ahead of time that I wasn’t sure I could reach the top, and he said he was more than willing to just give it a shot.

The hike started out STEEP. It helped that it was through a beautiful meadow, so I had something pretty to look at. My refrain was basically “just keep swimming, just keep swimming.” I found a doable pace and stuck with it.

About 1/3 into the hike, I felt a twinge of pain in my hand and looked down to see my hands were getting REALLY swollen. Swelling is something I am supposed to watch for, so it concerned me a little. Lucky for me, my ER doctor husband is experienced in getting stuck rings off of people, so he helped me get my wedding rings off. He thought maybe the swelling was more to do with the way I was swinging my hands as I walked, plus the altitude, so I started wearing our daypack so I could hold onto the straps and keep my hands elevated. Soon the swelling was getting better.

I got high in Yellowstone: climbing a mountain with a congenital heart defect

We got closer and closer to the top, and I was getting shocked by how GOOD I felt. I mean, I felt like I was on the world’s most beautiful stairmaster with ankle weights on, but I wasn’t struggling to breathe, and my heart rate was a reasonable 110ish. Was I really going to do this? Climb the tallest mountain I’d ever attempted on the longest hike I’d ever done?

I got high in Yellowstone: climbing a mountain with a congenital heart defect

Yes, yes I was. We got to the top where it was windy and chilly. 10,243 feet isn’t something to sneeze at. I sat down in the fire tower at the top feeling shaky, slightly spent, and utterly thrilled. It wasn’t Everest, but to me, it was something like it– something I hadn’t thought I could do, but tried anyway and TOTALLY DID. I’m so glad I got to do this hike with Jon, because he has been on this journey with me all along, and he was just as proud as I was. He signed our names in the guest book and added “congenital heart defect and all!”

Things got slightly more interesting when we got SUPER close to a herd of mountain goats on our climb back down. We quickly realized we were between some adults and some babies and backed off and gave them space. Eventually they got off our path, but later, when we recounted the story to someone back at our lodge, he said he had heard of someone who was gored by a mountain goat and DIED. The idea that it would gore us hadn’t even crossed our minds. We thought at worst they’d head-butt us off the trail!

I got high in Yellowstone: climbing a mountain with a congenital heart defect

It was interesting to compare this hike with one we did together when we were dating, before I knew I had a heart defect. I struggled to hike to Hanging Lake, which was half as long as this climb. It’s strange to believe that I’m stronger now, having experienced serious heart failure, than I was before, when I didn’t know I had a heart defect, but it’s true. The medicines I’ve been on for the last three years have allowed my heart to get better, and at my last cardiology appointment, my doctor said, “your heart is STRONG.”

According to Wikipedia, author Elbert Hubbard who climbed Mount Washburn in 1914, wrote, “From the tip top of Mount Washburn you can see the world in much of its glory. It is an entrancing view. You are in love with living. You want to do more of if. You plan to do big things when you get down into the work again.” He’s right. I was in love with living, and so grateful that I get to do more of it. And now I have a new goal, a plan to do big things: I want to climb a “fourteener” some day.

I got high in Yellowstone: climbing a mountain with a congenital heart defect
I got high in Yellowstone: climbing a mountain with a congenital heart defect

not something i wanted to pass on

If you’ve been reading for awhile, you’re familiar with the fact that I very nearly died after having my babies and later found out I had a previously undiagnosed heart defect, left ventricle non-compaction syndrome. Further genetic testing revealed that my heart defect was due to a genetic mutation, which led to genetic testing for both Etta and Claire, too. I really really hoped neither one got it, but there was a 50/50 chance they did.

It turns out those odds were exactly right. Etta has the mutation, Claire doesn’t. The good news is, both girls have already had echocardiograms, and we know they don’t have my specific heart defect. But, the mutation can also cause other forms of heart failure, so she will need lots of monitoring to make sure her heart is staying healthy. We see the geneticists later this week, and then we will be referred to cardiology. That’s all we know for now.

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