broken hearted

“Pick a day,” the cardiologist said, like we were scheduling an oil change, a haircut. “Go home and check your schedule, get back to us.” Like it’s any casual thing, another dumb bullet point on the To Do list: go to bank, check sump pump, get the baby open heart surgery, gather tax stuff. I should find the doctor’s nonchalant way reassuring, and I do, partially. If your pediatric cardiologist is freaking out, you should probably pick a new doctor, or else consider refilling that hip flask, do what you gotta do. I would expect him to be nothing less than professional and confidant. But his casualness sort of hits me, like a soggy invisible thing, like that movie The Abyss where they breathed liquid to dive so deeply underwater. He does this all the time, it’s his job to ultrasound little hearts, to measure defects and notice new blockages, to order surgeries.  I have to trust that I can do this, too. I have to breathe in, just as casually, even though it feels like water invading my lungs, even though my instinct is to spit it out, to kick and sputter and refuse. I have no choice but to inhale and hope it works.

In a few weeks, my tiny boy will be anaesthetised, cut open, and put on a bypass machine. How can this even be? I’ve been in the room during the echos, I’ve heard the electronic whooshing of his heartbeat, seen the opening-and-closing valves on the screen, even as I don’t know what I’m looking at. I’ve said the words “Double Outlet Right Ventricle with a Ventricular Septal Defect” so many times they slide out easily now, like oil; no longer getting caught up and twisted around my teeth. But, still, how?

When my six year old was littler, he insisted that he didn’t have a brain, just a lot of ladybugs up in his head. “It’s not my fault,” he would explain, “the ladybugs made me do it.” And it was exasperating in that way that becomes more adorable in hindsight, that chubby-cheeked stubbornness of toddlers that you think you won’t miss when it’s gone, but you do, oh you know you do. And his chest didn’t hold a heart, he would tell us, but bees. And since the bees were never responsible for temper tantrums or other wily behavior, I was only charmed by their confusing existence. When he would run around, red and sweaty, he would feel his racing heart and say he could feel the bees.

My six year old doesn’t say that he has an insect anatomy anymore.  He hasn’t talked about the bees in years. He has seen cut-away illustrations, he understands that there aren’t really bees in chests. He understands that. But I don’t.

I put my hand across my baby’s middle and I feel them, I do. It doesn’t make any sense, how they got there. You can’t explain how I could grow a baby with limb differences and a heart defect and I can’t explain the bees. The impossibility of each is the same. What else could bore a hole in a brand new heart but a winged battering ram made of bees? And we knew we’d have to let them out. We knew right away, when Ulysses was born, that it was just a matter of time before they would be ready to leave, to find a new nest. They don’t mean to be angry, those bees, but they’re louder now, crowded and ready to swarm; they just want out.

We have the surgery on the calendar. We are making arrangements and getting ready, as much as you can prepare for something so big. Should everything go according to plan, should his chest be spread open and all those bees fly out in a vibrating, explosive but orderly cloud, without any complications or surprises, he will be in the hospital for about a week. I will be right there with him. Selfishly, I had been holding a little secret wish that we could postpone his surgery until the new children’s hospital opens. And now I’m second guessing myself. Are we making the right decision? Not about the surgery itself, no. But are we doing it at the right place? We fell into seeing the pediatric cardiology practice affiliated with the hospital where he was born. I am not unhappy with them, but. . . But it’s my tiny baby, who has been on this side of my belly for just ten weeks, who will be marked and cut and repaired.  I just need to be sure. I’ve never been faced with a matter so serious as to warrant a second opinion. What’s more serious than open heart surgery? Another round of appointments, then, another team of cardiologists, more waiting and examining and deciding. I should have asked these questions weeks ago. I pray silently to myself, to the bees, that we have time. They’ll get us into the other hospital as soon as they can; if it’s not soon enough, we’ll stick with the current plan. I am new to being an advocate for my child at this heavy level and as much as I beat myself up for falling short, for not knowing enough, I want to make the most informed decisions as possible.

I don’t need a stethoscope to hear his murmur. I press my ear up close and the abnormality is obvious, a rhythmic wet humming that proves this all is real. I know what a broken heart sounds like. I know what it feels like to pretend I am brave enough to handle this. I am not brave. But I am thirty-six years old and have never been stung by a bee yet. I have no reason to be afraid of them. In a few weeks, they’ll be gone. And while we won’t have to think so urgently about this anymore (we’ll be on to the next obstacle), we’ll always remember. Ulysses will have a scar right down the middle of his ribcage. I will tell him the story of his heart and how it was fixed. I might even tell him about the bees. Do you think he will believe me?

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13 thoughts on “broken hearted

  1. That was bee-utiful. Sorry, that just came out.

    But I mean it…. beautiful.

    I know that worry. Not a heart, but a g-tube. A heart is a much more serious matter for sure. But my baby was still under general anesthesia, and there were tiny scars on her belly due to scoping which I don’t remember knowing about beforehand, and I remember a snippy nurse who let it slip that she hadn’t been administered any pain meds yet while I was holding my fresh from surgery crying-in-pain baby….I wanted to scream.

    Once again your writing leaves me floored. I can see those bee’s and that precious baby and oh the wonderful stories he’ll tell. The bee’s in his heart…of course.

    Hugs to you mom.

    • oh, thank you, miggy. snippy nurse, yikes! i didn’t realize about your girl and a g-tube. i’ve never had to pace around waiting for a child to wake up from surgery. big scary stuff.

  2. Deb

    Oh, April, I so wish I lived near you so I could be there for you in reality, not just virtuality. The bee story & metaphor blew me away. XO.

  3. Omy

    This is just beautiful written, April. Your writing abilities floor me. I hope that you do write a book someday. And I am holding you and your little Ulysses in my heart right now.

    • we’ll see what words i can come up with as he grows. there aren’t a lot of books out there about babies with limb differences, i know that.

  4. You are a fantastic writer. You are also a fantastic mother. You and Ulysses remain in my prayers. (Yeah, prayers, which I never offer on the internet because I won’t say it if I don’t mean it but I mean it.)

    • having you (dawn! thiswomanswork dawn!) compliment my writing is something else. thank you. and thank you.

  5. Rachel OConnor

    I was speaking to my friend who is a pediatric ER nurse practicioner and I asked her whether she thought you should get a second opinion. She thinks ultimately that the cavalier attitude the doctor had is normal and done with the idea that you are put at ease about the whole situation. She says a second opinion is never a bad idea but that she says the “Lukemia team” will often come to talk to a newly diagnosed child/parent and will make it all sound like a totally curable walk in the park. A lot of parents are reassured by this but some are skeptical as well. How does B feel about the doctor? Does he have hesitation?

    • we don’t either of us have hesitation. we feel comfortable with the cardiologist we’ve been seeing (we saw him within an hour or so of U’s birth, even). the hierarchy of doctors is such that we haven’t actually met the surgeon yet. but that’s not the issue. frankly, it’s more an issue of WHERE will we feel more comfortable? not which doctor even, so much as which big picture? we’re looking at meeting with the ped. cardiology practice affiliated with the other major hospital in portland. i just want to make sure, you know? i don’t think his diagnosis is questionable, or anything like that. i just want to make sure we’re doing his surgery at the place that’s best for him and us. does that make me sound like a micromanaging squeaky wheel? i am no good at this stuff. whole new world.

  6. April,

    If I may…I saw your last comment about being a ‘micromanaging squeaky wheel’ and just wanted to throw in my 2 cents about Dr’s and this whole new world as you said. I’ve learned a lot from our experience.

    The quick rundown with my daughter and her g-tube is this: As a fetus at our 20 week ultrasound we found out about her limbs. The rest of her anatomy looked fine, except they couldn’t find her stomach. Through the various tests we underwent the rest of my pregnancy everything came up fine, except the stomach was small but that usually “works itself out.” It wasn’t until she was 4 months old and eating every hour, or every other hour around the clock that I said “We need to have her stomach checked out. What if it’s too small like in the ultrasound and other tests?” Well I was pooh-poohed again and again by dr’s telling me that it was most likely just how she liked to eat, scheduling, etc. When we finally went and saw a GI specialist I was again told that she probably doesn’t have a small stomach because that would just be so very rare…he’s not sure he’s even heard of such a thing. (This coming from Cincinnati children’s hospital which was #1 for GI in the nation). I told him that my daughter is the definition of rare and I stood my ground and said ‘probably’s not enough for me.’ Luckily I had a nurse in the room who was on my side. We had some imaging done and lo and behold…not only was her stomach small it was misshapen and there was also some concern about mal-rotation. In the end her “small stomach” otherwise known as microgastria led to her diagnosis (micorgastria and limb reduction complex) due to an article I found in the journal of american pediatrics, and confirmed by our geneticist.

    YOU are in charge. Remember that. Not the Dr’s and not the nurses. They are wonderful and do amazing work for our kiddos but never underestimate your internal and absolute knowledge as his mother.

    • thanks for this comment!

      “the definition of rare”, yes! your story is a good example of the sort of super sleuthing and persistence required in this job description. I don’t even know WHY I am feeling the need to consider a new team of doctors affiliated with a different hospital (for confirmation, I guess, that we’re choosing the best fit for us and Ulysses’ unique issues), but it’s helpful to be reminded that it’s not beyond the realm of reasonability, this kind of second guessing.

      We spend a lot of our time googling and otherwise researching my boy’s particular rare constellation of birth defects to find out if there even is a specific name. Everyone nods and says, yes, yes, genetic. But we don’t have an isolated gene abnormality yet or name. It would be helpful to me to have a name to rattle off, even if it wouldn’t change who my son is.

      • That was the same for us…we diagnosis didn’t really mean much, but it IS nice to rattle off a name and say “our daughter has X…”

        Good luck lady. I’ll be thinking of you.

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