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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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 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:

Call Professor X, I’m a Mutant

Many of you are probably aware of the fact that I almost died three days after I had my babies. I experienced an often-fatal complication called peripartum cardiomyopathy, something I had never heard of until it happened to me, but according to The Daily Beast is actually on the rise. The first sentence of that piece, where the woman describes feeling like her head was being held underwater, just felt so true to what I experienced as well– I often describe it to people as feeling like I was drowning inside my own body. As my heart went into failure, my lungs literally began to fill with fluid, and I could actually hear it crackling as I struggled to breathe, before I was sedated and intubated and moved to the ICU. Thank GOD I was still in the hospital 3 days postpartum, because there was a code team ready to save me. If I had not asked for one more day inpatient to work with the lactation consultant on breastfeeding, I could have very easily been at home, where I might have died. (After my near-death, I was put on some serious medicines which meant my breastfeeding days were over, but you could say that my desire to breastfeed saved my life!)  Continue reading

Ms. Bufflo goes to the capitol

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Image I took on my way inside to testify before the committee, via my Instagram feed.

Today, I spoke before an Arkansas senate committee. Last night I was on the evening news.

Rep. Andy Mayberry is making national headlines by trying to ban abortion after 20 weeks of gestation (that’s the halfway mark, FYI). He claims this is because this is the point at which a fetus begins to feel and respond to pain, and he cites some studies, but this is hardly an established fact, and is controversial in the medical community. In the committee today, he testified that 98% of abortions happen before 20 weeks. Why would the minority get such a late abortion? It’s not because they just didn’t get around to it or had a sudden change of heart. Something big happens at 20 weeks. It’s the point in a pregnancy when the “big ultrasound” happens. The one that tells you if you’re carrying a boy or a girl (or two girls, in my case), but also the one that tells you for the first time that there could be something seriously wrong, even life-threatening, with your fetus. I know what it’s like to sit in that ultrasound room and get bad news. Like Andy Mayberry, who also has a daughter with spina bifida, I am fortunate that our news wasn’t as bad as it could have been. My daughter and the Mayberry’s daughter have a condition that is treatable and manageable and won’t stand in the way of a full life. Many parents are not so fortunate. For many parents, that moment in the ultrasound room is what turns a wanted pregnancy into a nightmare of heartbreaking news and difficult choices. Placing an abortion ban at that point in a pregnancy leaves these parents without options right when they need them most. It places a legislature between families and their doctors, right when those families most need compassionate care.

I know some will say that the bill has been amended to include exceptions for the health of the mother, for fetal anomalies, and for rape and incest. But as one of my own doctors testified before another committee, when we’re talking criminality for doctors who provide abortions, how much of threat does there have to be before it’s “enough” to justify an abortion? I have a congenital heart defect and a previous severe cardiac pregnancy complication, but no one can say exactly how risky another pregnancy would be for me. My doctors agree that I should not have more children for the sake of my health, but my condition is very very rare, and there isn’t much data on it, let alone actual odds of my survival. Do you think my doctors are willing to risk jail time and the loss of their career and livelihood on my chances of survival? I don’t. And yet I am not willing to risk leaving my girls motherless, and should my IUD fail (as it could, I personally know people who became pregnant with an IUD), I would not think twice before terminating to protect my own life and stay here to care for the girls who need me.

The bill passed the committee despite my testimony. It will probably pass the Senate. The governor will probably sign it. I fear for the state my girls will grow up in, and I fear for their rights and mine.

For every mother who testified that she’s glad she carried her anencephalic baby to term (that’s a baby with no brain and a damaged skull, with no chance of survival outside the womb), there are mothers thankful they had the opportunity for a post-20-week abortion (essentially an induction of labor), to prevent needless suffering for her and her doomed child. For everyone like Andy Mayberry and me, whose kids will have challenges but lead full and happy lives, there are people who got literally fatal news. For everyone like me who survived pre-eclampsia and peri-partum cardiomyopathy, there are people whose fatal complications developed too early to save themselves and their babies, and were forced to deliver to save their own lives, meanwhile their babies could not be saved. For everyone on the other side who calls themselves a compassionate conservative fighting for life, there is someone like me, literally fighting for her own, asking for compassionate choices when we need them most.

If you’re in Arkansas, please start writing to your senators and the governor and urge them not to let this bill pass. Post 20-week abortions are rare because they only happen in the most dire of circumstances. These people deserve compassion.

a birth and near death story

Some folks may be wondering, since my last post over a week and a half ago was OMG ONE DAY TIL BABIES LET’S FINISH THE NURSERY, whether or not I did in fact have those babies.

I did.

And what a crazy story it is.

One last belly shot the morning of the c-section.

Things started out as planned– we didn’t sleep at all the night before from excitement, and we showed up at the hospital at 7:00 am on Wednesday, March 28 (exactly one month before my 40 week due date) for a C-section that had been moved up 5 days because I suddenly had an elevated blood pressure and had started retaining fluid. I was really nervous about the surgery, but despite a little trouble getting the spinal/epidural combo in place (apparently folks with scoliosis and an extra vertebra are a bit challenging for anesthesiologists), the whole operation went very smoothly. It’s super surreal to be lying on a table, numb from the waist down, knowing you’re being cut open and having babies pulled out, but feeling nothing but pressure and tugs and then suddenly hearing cries. I’m pretty sure I was saying “I’m afraid I’m going to feel it!” to the anesthesiologist who was standing next to me as I was already being cut open.

It turns out my girls, who had been in “bunk beds” or in the transverse position for my entire pregnancy, had turned breech somewhere between my last appointment and the surgery– so I’d have definitely needed a C-section even without my blood pressure issue or Claire having spina bifida. Jon joked afterward that there are about 5 ways I could have died in childbirth this week if not for modern medicine– breech twins are one of them. Jokes aside, there is no one more supportive and awesome than my husband, who was right by my side for the whole surgery. The surgical team kept telling him when to pull out his camera for a good photo op, but he mostly focused on supporting me and keeping me calm. He did have the anesthesiologist give me some “goofy juice” at the end when I started to freak out a bit that I might be feeling more than just pressure (pretty sure that was mental), but overall, he kept me relaxed.

Jon and the babies-- Etta in front, Claire in back.

After both girls were pulled out, Etta weighing 6.2 lbs. and Claire weighing 6 lbs. (I am SO FREAKING PROUD of those weights for 35 weeker twins, I must say), Jon went with the babies to the resuscitation area, which sounds scary, but doesn’t necessarily mean the babies are getting like, CPR or anything. They were checked out by a team of neonatologists and pediatricians, and there was a transport team standing by ready to take Claire from the university hospital where I was delivering to the nearby Children’s Hospital (where my husband works), where she would be having surgery to repair the opening on her spine caused by her spina bifida.

It turned out that Claire’s spinal defect was both higher and larger than we initially hoped. I got to see my baby girl in a plastic transport box for about 5 minutes in recovery before she was whisked away by the transport team. I’m pretty sure the “goofy juice” is what helped me not completely freak out over not getting to hold one of my babies, but we had also prepared ourselves for the fact that this is what would happen on delivery day, knowing it would be happening since week 20 of the pregnancy. I was also very thankful to have met and consulted with the team of doctors who would be taking care of her, so I knew she was in the very best of hands.

Meeting and saying goodbye to Claire.

After recovery, Etta and I were moved to the peri-partum ward, and she was allowed to share a room with me. My blood pressure and heart rate were slow to go down, and labs revealed my blood counts were very low, so on Thursday I received a blood transfusion. Everyone who came in the room and saw me afterward remarked on how much better I looked, and the color in my face, even though I was about the same shade as the beige hospital blanket that covered me. I guess I was white as the sheets before?

On Friday, Claire had her surgery, a five hour process involving neuro- and plastic surgeons to cover the 4 cm. area where you could literally see her spine. I wished so desperately that I could be there for her, but was still not in shape to be discharged from the hospital, so a social worker set up a video-conference and I got to video chat with her before the operation. She opened her eyes when she heard my voice, which made me feel so much better that she still knew her mama loved her. She came through the surgery great, and continues to recover in the NICU at Children’s. She seems to move her legs of her own accord and also to respond to stimuli, which are great signs that she may not have disability in her legs. As with everything, though, we will just have to wait and see. She may also have disability in her bladder and bowel functions, but since no babies have bladder and bowel control at this point, we won’t know until she’s older if this is the case. We certainly hope it isn’t.

On Saturday, there was talk of discharging me from the hospital as I was doing much better, but I was still feeling very very weak and not very able to get out of bed, and when my doctor suggested keeping me another day, I said I thought that was a good idea. I needed the time to continue to recuperate.

By early Sunday morning, I was feeling well enough to get out of bed and walk unassisted the 5 steps to the bathroom, as Jon was holding Etta. I remember feeling so proud as I stood up and walked unassisted, thinking this was finally the milestone I needed to get to go home. As I walked back to the bed, I felt myself getting shorter and shorter of breath. I told Jon I was having trouble breathing, and he called for the nurse. It just got worse and worse, as I struggled for breath in short gasps, and a crowd of nurses gathered around. People were telling me to take a deep breath, but short gasps were all I could manage. I began to hear crackling in my lungs (Jon later explained that this was flash pulmonary edema), and I became more and more panicked. I knew from the way I felt and the look on Jon’s face that I was crashing.

The Rapid Response team arrived and soon I was being prodded and various breathing masks were being shoved onto my face, which only increased my feeling of panic. I know enough from being raised by medical professionals and married to an emergency physician that I needed to be intubated. I was looking at Jon begging him with my eyes to get someone to sedate and intubate me so I wouldn’t have to panic and struggle to breathe any more. From the look on his face, I could tell if he’d had a cart nearby, he would have done it himself.  I truly believed I was dying, lying in that bed, surrounded by people bustling around to save me, with my husband watching and my baby girl lying next to me in a bassinet.

And then I don’t remember anything.

My next memory is vague, like a dream, where you know there is something you MUST do, and in this dream, what I had to do was pull something out of my mouth. So I just kept pulling.

It was Monday morning, and I had extubated myself. I was in the ICU, where I had spent about 24 hours on a ventilator.

After consults with cardiologists and pulmonologists and internal medicine specialists and more doctors than I can count, it seems I have developed peri-partum cardiomyopathy, which was causing congestive heart failure. My terribly lay understanding is that possibly due to the stress of the pregnancy on my body, I either developed or finally exhibited a pre-existing weakness in the muscle of my heart, specifically in the last chamber (left ventricle) that sends blood out into the body. The ability of this chamber to pump out blood effectively is measured in an “ejection fraction.” Most people’s is 50% or better, and mine was 15%.

Reunited with Etta in the peri-partum ward after getting out of the ICU. I may look yellow, but this is "good" color compared to where I was.

Putting me on the ventilator helped them pump fluid out of my body to take the load off my heart and lungs. They removed 7 liters of fluid from my body in my 24 hours in the ICU, and continued to take more off through diuretics and fluid restrictions after they got me out of the unit and back in the peri-partum ward.

Tuesday through Thursday were spent trying to fine-tune the cocktail of medicines I am now on to control my heart rate and blood pressure and allow my heart to strengthen and heal. Every day they tweaked the meds a bit, and every day I worked harder to get out of bed and walk and move. By Wednesday night, I finally was able to make half a lap around the ward, pushing Etta in a bassinet, Jon beside me to steady me, with nurses cheering– even those who hadn’t cared for me had heard about the girl who was seemingly ready to go home and had suddenly crashed and wound up in the ICU on a vent, so they were proud to see me looking better.

Etta and me.

Claire and her daddy.

At first, the medicines made me feel worse, which my cardiologist told me would happen. I’d get my meds, and then for 4 hours afterward, feel hot flashes and jitters and general exhaustion, only able to sweat and sleep. But every day that got a little better. By Thursday, Jon and me, and Etta, if I may speak for her, were just DONE being in the hospital. Convinced that I would be compliant with my meds, diligent in home blood pressure checks, and sure to come back for follow-up treatment, I was finally discharged. I have never been so glad to breathe fresh air as when baby Etta and I were wheeled out to the curb in front of the hospital on that beautiful spring day when we finally got to go home. I’m feeling better and better since then. My heart condition may never be fully cured, but it can get a LOT better, and I have high hopes of being one of the successful cases. We will not be able to have any future pregnancies, however, because it would literally mean risking my life.

Another loss that I feel very deeply is the loss of the ability to breastfeed the babies. I had really hoped to be able to nurse them, and had been working on nursing Etta and pumping and building up my supply while in the hospital, however, after the whole almost-dying thing, my doctors convinced me that breastfeeding is a major physical strain on my body, and I needed to be conserving my physical resources to give my heart the best chance to heal, so that I could become strong enough to care for my girls. I have cried many tears over this loss, but I know that we made the right choice for our family. They need my beating heart a lot more than they need breast milk.

We’re still missing 1/4 of our family, with Claire still in the NICU, and we are anxious to get her home. I’m still pretty weak, though stronger every day, and my one outing a day is to go visit her. Blessedly, Children’s has a special “twin rule” that lets us bring Etta with us to visit her sister, and it’s super special just to have the four of us together for a little bit each day– giving us a taste of how great it will be to finally have all of us home. We don’t have a specific date that she’ll be discharged, but we hope it could be soon if she keeps meeting the goals her doctors set for her. Every day that I’m wheeled out of that NICU with only one baby feels incomplete.

Seeing Claire for the first time since her birthday after I got out of the hospital. It had been over 8 days since I saw my baby.

Reunited twins!

Overall, though, I am so very thankful. I’m glad I was in the hospital where I could quickly get the care I needed when I crashed. I’m glad Claire has such awesome people taking care of her, and glad we have awesome families who would come and take care of her and Jon and Etta and me when we needed them. I’m thankful for two beautiful baby girls. I’m thankful to be alive.

The whole family.