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.

a spanking for frances?

We have the book Bread and Jam for Frances. It’s a book I remember loving as a child. A picky-eating badger turns her nose up at her mother’s cooking a few times too many and finds herself eating bread and jam for every meal, until she gets sick of it and decides to try new things. Luckily our girls haven’t been particularly picky, but they seem to enjoy the story, even if to them “bread and jam is just for breakfast.”

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Today at the library, I saw some of the other Frances books. I asked the girls if they’d like to try them, and they picked out Bedtime for Frances. In this story, Frances keeps coming out of her room after bedtime, because of tigers, giants, and scary cracks in the ceiling. Her parents are at first bemused and then increasingly frustrated. And then all of a sudden, Frances’s father says that if she comes out again, she’s getting a spanking.

“What’s a spanking?” sweet four-year-old Claire asked. “Well, sometimes parents hit their children on their bottom when they do things they aren’t supposed to do. Kind of like how you sometimes get time outs. We don’t like to hit, so we don’t do that,” her dad explained

I’m thankful my kids have made it to four years old and find it unthinkable that an adult would hit a child, that they’ve made it this far and don’t even know what a spanking is. I wish I could say that I find the idea of hitting my children unthinkable, but the truth is, I have wanted to. Children have their ways of pushing you to the limits of your energy, patience, empathy, and self-restraint. I have been so tired, angry, and frustrated with my children that I wanted to hit them, that I felt that impulse. But that’s what it would have been if I had given in: impulsive, angry, and wrong. It wouldn’t have been about teaching them, it would have been about me lashing out in my anger. The only thing it would have shown them is that I am no more capable of managing my emotions and impulses than they are.

I am not one to say “there but for the Grace of God go I” very often, but this is one of those areas where I really do feel it’s only grace that has kept me from that brink. It’s only the whisper in my ear that tells me to walk away, take a breath, make a different choice, hide in my room if I have to long enough to cool down. Because maybe giving a kid bread and jam for every meal for a while is creative parenting, but bedtime spankings don’t make sense to anyone in my family, even in my tiredest, most rock-bottom moments. Thanks for the reminder, Frances.

*Note: I’m not interested in debating spanking with you. I only presume to know what is best for my family.*

don’t talk about my kid that way

“Raging Sociopath.” “Little Criminal.” “Corrupt.” “Depraved.” “Demon Child.”

If someone said those things about either of my children, they’d be facing a very angry mama bear. Imagine my surprise to find them littered throughout an ostensibly Christian parenting book (Parenting by the Book, by John Rosemond) my Sunday School class has started studying! I had so many issues with the first lesson of the study that my head almost exploded, but this is one of my biggest issues with the author’s entire view on parenting, because the way he speaks about children, I think, has a lot to do with the harsh manner in which he advocates treating them.

Can you imagine the Jesus who said “Let the little children come to me,” and who encouraged all of us to have faith like a child speaking of his beloved little children in those terms? It’s hard to imagine a Bible that says “Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen,” (Ephesians 4:29) seeing such terms as “building up” or “beneficial” to children.

I gather that in order to understand “sinful nature,” some people must force themselves to believe that children are basically depraved sinners. I just don’t think that in order to accept that all humans have a capacity to sin I must see my children in only those terms. While my children have their periods of selfishness (which it seems to me is pretty much the root of all evil, even in my own heart), nearly four years with them has taught me that kids have great capacities for love and empathy. They genuinely want to please the adults in their lives. They genuinely want to show love to the people around them. One of the highest compliments I can pay my girls is to tell them what loving hearts they have, and how happy my heart is to see them being kind to others. When I do, I can see them radiating joy. They have a capacity for selfishness, too, but the answer is not to tell myself or them that they are basically monsters. The answer is to encourage and nurture their naturally loving little hearts, and to learn from them.

I am often quoting author Thomas King, “The truth about stories is, they’re all that we are.” I’ve also read that our voices will one day become the voices in our children’s heads. The words that we use to think about and talk about our children shape the way we treat them and the way we speak to them. They will do their best to live up to the selves they see reflected in our eyes. I want them to know that I see their best selves, that I feel privileged to know them and to be their mom. Imagine my surprise to find a Christian parenting expert speaking of children in terms I'd sock a stranger for using about my kids!

can it be? a light at the end of the long dark tunnel that is THREE?

EttatudeUsually, I am not one to cotton to other parents who tell those with littler kids “just you wait, it gets worse.” Because each stage in this journey has its own set of hard and its own type of beauty, and there’s no use worrying about the next stage when you are already knee-deep in the current one. But one of the best things anyone did for me was to tell me that the “terrible twos” are a myth and three is where shit really gets real. Because OMG. The last year of three squared has nearly killed us. Thank God I didn’t go through two thinking we were in the worst of the toddler years, only to get walloped by three. Three. GOOD LORD. THREE.

This is my brain on THREE YEAR OLDS.

This is my brain on THREE YEAR OLDS.

Three has been emotional. Three has been obstinate. Three has been irrational. Three has been straight-up exhausting. It has brought us to the edge of our patience, ability to form rational thoughts, and self-control. Three has made me want to run away screaming more than a few times. Yes, three has had some magic in it, as imagination has continued to explode and the twin bond has gotten tighter and they’ve been oh-so-eager to be big helpers, but mostly three has been the hardest year of our lives.

Claire tude.

But lately. Lately we see glimpses of the promised land: FOUR. It’s three months away, and we’re getting close enough to see some landmarks. Four seems less ruled by emotions. Four seems silly, always looking to make us laugh. Four is playful and imaginative. Four is independent and actually becoming capable. Four can make a sandwich! Four can put on her own coat! Four is getting better about putting on her own shoes! Four is really affectionate, and comes up with new ways to “show love” every day. Four is obsessed with “ballet music,” and will listen to Beethoven in a ballgown while playing with LEGO. Four loves snuggles with mommy and park time with daddy.

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I’m sure a lot of the time four will also drive us right up the freakin’ wall, but it finally feels like we’re reaping some rewards from all the hard work three has required. And if four is actually a nightmare, please don’t tell me. I can’t handle the news. I’m still recovering from three.

one perfect night

Any parent of small children can tell you: stuff usually does not go according to plan. You either learn to live with this, become flexible, and go with the flow, or you spend a lot of time frustrated that life never just GOES RIGHT. Someone will always poop their pants on the day you forgot to pack a spare outfit, but never on the days that you did, you know?

But in the same vein of my “it gets better” post, I think it’s important to notice when things actually do go really really right. It may not happen often, but I promise, it does happen just often enough that if you take time to notice, outweighs so much of the “STUFF NEVER GOES RIGHT” frustration.

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Last night we had one such perfect night, and after we got the kids to bed and fixed our ritual fancy drink, my husband and I clinked our glasses and remarked on what a great night we’d had. It started when both kids actually took good naps, so we were primed and happy as we set out. We met up with some friends with a son our girls’ age at a local pizza place, and everyone sat in their chairs and happily ate their food, which was served promptly, and no one spilled any drinks or threw any fits. The kids entertained each other with silly antics and enjoyed sprinkling their own cheese on their own pizza, and we got to chat with some actual grownups, too.

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Then we walked up the street a couple of blocks to the fanciest hotel in town, The Capital Hotel, for their annual Christmas tree lighting. The Capital does it up right– there was even a man literally roasting chestnuts on an open fire right outside the front door. The girls were given jingle bells on red ribbons as we walked in. We each had a tiny glass of egg nog. There were Nutcracker ballerinas wandering around, and my two little ballet dancers stared at them in awe. “Ballerinas LIKE ME!” Etta exclaimed. Claire got one look at the giant tree in the center of the lobby and declared: “It’s ENORMOUS!” Each girl got one perfectly iced sugar cookie, and Etta chose “a star LIKE ME!” while Claire went for a red and white candy cane.

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The girls led us up the grand staircase to the upper balcony, which turned out to be a perfect spot from which to watch the tree light up, and left us perfectly positioned to be third in line to see a wonderful, real-bearded Santa when he assumed his perch on a reserved velvet sofa nearby. Third in line is ideal, it turns out, because the kids can see other kids greeting Santa and surviving, and you have just enough time to rehearse what you’re going to tell him you want. (Claire, a jack in the box; Etta, an umbrella, a typewriter, a music box, and a vacuum cleaner. I have no idea where my kids got such retro wishes, either.) A friend happened to be nearby just in time, so we even got a lovely picture of all four of us with the Jolly Old Elf, who gave each kid a jumbo candy cane, and then we headed toward the door.

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We arrived home and they gave up their largely unfinished candy canes without a fight (shocker), got into jammies with Etta only vetoing two pairs before settling on one, and did our nightly Jesse Tree reading before stories and bedtime, which also went smoothly. By the time I was mixing us up some cranberry rosemary Moscow mules (recipe soon, I promise), I was basically high on visions of sugar plums. I know how rare a night like that is at this stage of parenting. I’ve been through enough of the opposite to know I should be thankful. If this one perfect evening with family and friends is the closest thing we get to a Christmas miracle this season, I will count myself lucky.

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I’m looking forward to this season with our girls. They are full of wonder and hope and joy and innocence, and it turns out they are capable of some pretty magical moments. And when they’re not, and things don’t go according to plan? At least I know I’ve got my cranberry rosemary mule recipe perfected…

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not so incompetent: it does get better

When my twins were babies, a woman told me "It doesn't get any better." I'm here to say it does.

“Mine are three. It doesn’t get any better.”

That’s what she said to me as I wheeled my two baby girls into daycare this morning. “I’m sure they keep you busy. Mine are three. It doesn’t get any better.”

Well, I guess there’s no “It gets better” project for twin moms.

Which sucks, because for the last few days I just feel like life is hard. I feel incompetent. Like, not only can’t I do it all, but I can’t even do the little bit that I want to do. The little bit that I thought was achievable.

I wrote those words three years ago today, when I had tiny twins in daycare, a husband finishing up his Pediatric ER fellowship, was adjusting to life with a heart defect after “catastrophic” heart failure, and I was trying to finish grad school and feeling like a straight-up failure.

Now I’m the one whose twins are three, and I want to punch that other mom in the face. Because you know what? It does get better. It gets better and better all the time.

When my twins were babies, a woman told me it wouldn't get any better. I'm here three years later to say it does.

For one thing, everyone in my house now sleeps through the night. It took a long time to get there, but sleep is no longer a thing I agonize about, struggle for, or don’t get. Being tired all the time is just really really hard, and it makes you into a frazzled, emotional wreck. Not being tired all the time? It’s kind of the best.

For another, I can actually leave the room and get some stuff done while my kids PLAY TOGETHER HAPPILY. They can have tea parties in princess dresses, jam out on their instruments, cook up a masterpiece in their play kitchen, color in their coloring books, work on puzzles, build with Legos, and look at books, all without much involvement from me. Not for like, hours at a time, but often enough time to take a shower or get dinner together. That makes a big difference in my ability to feel “competent” at more than just the zoo keeping of keeping two tiny lumps alive.

Also? I realized I didn’t actually want to keep doing the grad school thing, and now that I have let that go, and also let go of defining myself by academic achievements or lack thereof, I’m much happier. I don’t have to “be” anything other than who I am right now, because it turns out I’m in a pretty good place. And maybe when my kids start school next year, I’ll get more serious about pitching and working to actually make this writing thing I love so much work for me. But I think the work I’m doing raising these kids is valuable and important, too, even without an M.A. after my name.

I remember being so scared three years ago to admit that I was feeling so low. I remember how desperate and overwhelmed I felt. I also still remember the sweet comment my friend Patrick, who is a little further down the parenting road left for me:

She’s wrong. It does get easier. We didn’t have twins, but 3 in five years. I can’t do the advanced math it takes to work that out, but I’m pretty sure I changed diapers for 14 consecutive years – and the oldest is only 13 now. Anyhow… It does get better. I promise.

There are a lot of great days ahead. The day you change your last diaper is a great day. The day the Bufflo Girls can buckle themselves in their car seats by themselves is a great day. The day they learn to ride a two-wheeler is a great day. The Saturday morning you wake up and discover they have gotten up, made their own breakfast and entertained themselves while you slept in is a great day. Your life is loaded with great days ahead.

I have found that my antidote to feeling like life has ganged up on me is to use gratitude as a tool. Not the kind of false gratitude your man Daniel is talking about up there, where gratitude is measured against others having it worse, or a guilty gratitude where we berate ourselves for having it so good, but the kind of gratitude that realizes that this feeling will pass and that today, I have everything I need, even if today does kind of suck, and tomorrow is another day filled with wonder and struggle and love and work and surprise and sorrow and joy.

The truth is, some days just plain suck and that’s ok. It will pass. Every single day of our lives aren’t meant to be filled with rainbows and unicorns and hobbits. When I can manage to use gratitude to find something genuine to feel grateful about without comparing myself to others, I can usually turn my day around. And some days, the only way I can find my gratitude tool is to tell others that I’m having a shitty day, and give them an opportunity to help me find it. And that’s a pretty joyful thing.

We’ve already had a few of those great days. And part of the reason I can celebrate them now is that I’ve been through the sucky days, too. I have struggled and grown and received so much grace in this process, a reason to be grateful for even the really hard days, too. Because I know that what I have and who I am? They’re enough. They’re not perfect, but they are GOOD. Even on the hard days. And especially on the good days.

So, now, when I see a mama struggling with little ones, I remember NOT to be the Debbie Downer with the three year old twins. I want to be the one who says: “I see you. I know it’s hard. I know it’s overwhelming. I know it’s beautiful and huge and heart-exploding, too. You’re doing enough. You are enough. And it will just keep getting better and better.”