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Pocketing

Once we knew what a double aortic arch was, and that Sammi had one, all sorts of mysteries were solved at once. We now understood the mystery of the unresolved loud breathing, which was the scariest of all, but we also understood something far more insidious: we realized why Sammi didn’t eat.

She was over a year when the diagnosis came. As we had with her sister, we first offered her liquidy purees that I made, from scratch, when she was about six months old. Ronni’s immediate joy at the discovery of food at that age was a stark, stark contrast to Sammi’s total disinterest. Where Ronni’s legs had swung below her seat when she saw her special little bowl and spoon coming nearer, Sammi would look away, eyes distant, and only occasionally grace us with the tiniest “o” of an opening.

Into that tiny “o,” she would allow only miniscule flecks of food — barely the hint of food, really — into the inside of her lips. The first foods we offered — oat cereal mixed with breastmilk — resulted in my very first front-row seat to projectile vomiting. She seemed unfazed by it, though, so we tried again, and again, until her new pediatrician (by 6 months we had ditched the patronizing seen-it-all man for a female pediatrician we would grow to love like family) told us to stay away from grains for Sammi for a good six months.

Thus began a totally puzzling game of “why doesn’t she like this food?” My mashed and cooked apples, pears, peaches, and sweet potato didn’t make her vomit, but she didn’t like them, either. Mashed peas and carrots and green beans weren’t any better. We went on and on through the list of foods, and still, the tiny “o,” the thrusting-tongue refusing to swallow, the disinterest. We were told to keep on trying, keep on offering, maybe-if-she-eats-she’ll-sleep-better.

Then, like a slap in the face, we discovered that Sammi would happily eat many foods so long as they were jarred, stage-1 baby food — not my homemade food. At a last-minute outing without any food for her on hand, I ran into a grocery store and bought an emergency jar. To my surprise, she ate half of it in one sitting.

I quit making baby food. There was no point.

blueberriesWhen it was time for her to try feeding herself, we made tiny chunks of everything we’d tried before, and nothing worked. Once again, it was a maddening exercise in preparing food and throwing it away, preparing it and throwing it away, over and over, like Sisyphus pushing the same pot of soft-cooked pears up a hill every day until the end of time. When she finally landed on two foods she would deign to put in her mouth on her own, they were blueberries and freeze-dried corn. The corn, totally dry and designed to simply melt in your mouth, was awful to my adult palette, and even an entire bag of it — which would take her two weeks to finish — measured up to less than 50 calories. The blueberries weren’t much denser, but she seemed interested, at least, and so I clung to that, cutting blueberries into quarters and keeping track of her intake each day.

One day, when she was nearly 11 months old, she was crawling on the living room floor in the late afternoon, when I noticed that she had something black sticking to her lip. I looked closely, and it was a blueberry, poking out of her mouth. She’d last eaten blueberries hours before. I looked into her mouth, and a half a blueberry was pocketed there, in the space between her gums and her cheek.

I checked the next day, and it happened again.

I called the pediatrician. “She’s pocketing food in her cheeks,” I said, “isn’t that weird? Shouldn’t she be chewing and swallowing it by now?”

“Hang in there, mom,” she answered. “Give it a little more time. Check back with me next month. Some babies take longer to get into food.”

I grew to hate feeding her. Every meal she didn’t eat was a night time nursing session I knew I’d have to live through, and though she was growing, meeting developmental milestones, and charming the world around her, sometimes I found myself in the kitchen, facing her high chair, and saying angrily, “No?! Not this either? No good, again?!”

I felt like a monster. Surely, this was a phase; babies go through phases, children go through phases, I would not be having this fight forever. She’ll eat normally.

She pocketed the food while I tried to pocket my frustration. Only one of us was successful.

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A Cold, Clinical Interlude

What is a double aortic arch?

double aortic arch

Diagram of a double aortic arch, courtesy of Medline.com

 

In a person with normal cardiac anatomy, the aorta (which is our body’s main artery) comes up out of heart toward the person’s back, travels down the chest parallel to the esophagus, and branches off into smaller arteries below. In a person with a double aortic arch, the aorta is shaped less like a simple tube and more like a tube with a ring at the top. In fact, a double aortic arch is just one variety of a group of congenital heart conditions called “vascular rings.”

If you look at the image above (borrowed from Penn Medicine), you can see that the “ring” created by the double aortic arch fits like a rubber band around both the trachea (through which we breathe, connecting the mouth and nose to the lungs) and the esophagus (through which food travels from the mouth to the stomach). As a person with this kind of utterly impractical anatomy grows, that ring may not.

With a band around your trachea, breathing is difficult.

With a band around your esophagus, eating is difficult.

This was the diagnosis Sammi received at 13 months old, with an order for surgery as soon as possible.

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Blame Needs a Target

When Sammi was a newborn, the sleep deprivation was expected and, though unpleasant, not unreasonable. Ronni had not slept well, and I was ready for Sammi not to sleep well. When her 90-minute-maximum sleep schedule extended into three months, and I was back at work, I gave in and hired a postpartum doula to come twice a week and give me five consecutive hours of night time sleep. I felt no end of guilt around this; other mothers could survive on this kind of broken sleep without help, and even if they were miserable, most of them could not afford the kind of help for which I was paying someone. I needed that sleep to function, and so I fought past my blame of my own body for needing it, and I slept for five consecutive hours, twice a week, for about six weeks, until I had to quit my job. Every night after that was broken into tiny fragments of light, fractured naps between feedings.

Still, this all felt temporary. Time crawled by as winter turned to spring. Sammi was growing more slowly, but she was not sleeping any better. Against the raw and crackling synapses in my brain that convinced me it was wrong, her new pediatrician and every other adult in my world convinced us to sleep-train her when she was eight months old. We opted for a method that seemed less cruel than others and promised she would be sleeping through the night in a maximum of twelve days.

floorNothing can describe the kind of screaming she maintained for hours every night. Following every lesson in the sleep book, I waited as far from her in the house as I could between scheduled “check-ins,” but the sound followed me. I cowered on the hardwood floor, hands over my ears, rocking like a traumatized child. I felt the screams vibrate through my heart. I was exhausted by months of sleep deprivation, fear of illness, and the completely new world I was inhabiting, but there was something more.

A mother understands the quality of her baby’s scream.

She was not screaming in frustration. She was screaming in pain. I knew it. I said it. I said it on day one and day four and day twelve and on day twenty-seven, when no one could believe how long it was taking to sleep-train Sammi.

Five months later, when she was finally diagnosed with a cardiac condition that involved, in part, her aorta wrapped around her airway, we were told that anytime her blood pressure rose, she would feel her airway constricting. It would hurt, they told us. Don’t let her get worked up until she’s had surgery.

Before we knew for sure, before a CT scan confirmed the diagnosis of double aortic arch, I blamed myself for being a poor parent who could not teach my baby to sleep. It must be, I thought, that she knew I didn’t really believe in sleep training; or that I was eating something that upset her stomach as it passed into my breastmilk; or that I hadn’t checked her bedroom well enough for drafts or spiders or wild wolves which must be charging at her crib as I rocked on the floor, listening to her screaming from the floor below.

After we knew for sure, I blamed myself for not pushing her doctors to find out what was wrong. I knew all along. I knew something was wrong; I knew that was screaming-in-pain, and I had not stopped it. I had not fixed it. All she needed was to be calmed, have her blood pressure drop so that her aorta would stop strangling her. Instead of holding her, I left her alone in there, to scream and choke all by herself.

Once I knew, I didn’t stop holding her. Not ever again. I am holding her still.

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Look at My Breasts

Something went very, very wrong at some point in my pregnancy with Sammi. We’ll never know what happened, exactly, but I had a moment around the seventh month when I believe the message was delivered.

David and I were lying in bed, reading. It had been — and continued to be — an easy pregnancy, relatively speaking. My only complaints were early queasiness that never quite went anywhere, and a respiratory infection that lead to a round of antibiotics. I had a normal amount of weight gain, baby growth, and everything else was going as expected. Suddenly, for absolutely no reason, I had a feeling of total dread.

“David,” I said, “I think there is something really wrong with this baby.”

“Why?,” he answered.

I couldn’t tell him, but I made him get down to the base of my belly and speak loudly and deeply, trying to get the baby to move. It took a few minutes, and a cold glass of water, but the baby did squirm or kick, and my fear passed. I asked David if he had any premonitions like mine, and he didn’t.

Once Sammi was born after a day of frightening warnings — she was late but tiny, her heart was strong but decelerating, she was proportionate but inexplicably undersized — I found myself shocked to be lying on a bed in a recovery room, abdomen stapled shut, labor abandoned for c-section, pumped full of drugs and paralyzed by an epidural. A few moments later, someone wheeled a plastic tub on a cart into the room, and I peered over my useless knees to see the baby in the tub.

She was kicking legs and wires and tubes. I couldn’t see her face. I’d had one kiss in the operating room.

Thankfully, Sharon, the birth attendant I hadn’t used, was waiting with me. She saw me strain to look at the baby and said, “Have you nursed her yet?”

“No,” I said. “I haven’t even held her. Am I allowed?”

“She’s your baby,” Sharon said, and strode purposefully to the tub, picked up the baby, and brought her to me.

I held her, all four-pounds-eleven-ounces, and put her to my breast.

She was ferocious. She went at my nipple with vigor and power and purpose. The very first suckle made me gasp, and she didn’t stop until a nurse pried her away and took her to the nursery, having discovered a blood sugar problem that needed monitoring. I would spend the next eight days fighting to nurse her.

After that, I would go on to nurse her for nearly three years, through food refusal and ear infections and cardiac surgery, through toddler tantrums and night terrors and pneumonia, through hideous reflux and tonsillectomies and naps. I nursed her far longer than I ever wanted to, and far more often, mostly because it kept her alive and but also because it kept me vital. When she was so scary to me that I couldn’t bring myself to connect, when I could not make her healthy, when I could not feed her any other way, I could nurse her. I could hold her and nurse her and feel useful and helpful not because I was stubbornly clinging to some ideology about breastfeeding but because it really did work. For years, it was the only thing that consistently worked to keep her growing.

So, look at my breasts.baby in a sling

Really, you have my permission. Admire them, not for their shape or their sexuality, but as the most reliable medicine I had. Admire that they took a very sick baby and grew her from four-pounds-eleven-ounces to twenty-three-pounds-twelve-ounces. Admire that the body to which they were attached kept going while those breasts nursed a baby ten, fifteen, twenty-two times a day.

Something bad happened in my uterus. Maybe it was around the seventh month, or maybe that was my body realizing what was already wrong, or maybe that was normal pregnancy jitters. But nothing bad happened to my breasts. They soldiered on, they ran the marathon over and over, carrying a teammate as they crossed the finish line.

It’s ok. Admire my breasts. I sure do.

 

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“As long as it’s a healthy baby.”

How many times have we heard that earnest, utterly truthful statement from expectant parents who are asked if they want a boy or a girl? When two people say that all they want is a healthy baby, that is usually the extent of the wanting. Unless they themselves suffer from a chronic illness, parents who say this have an image in their heads of ten perfect fingers and toes, dappled cheeks and smooth skin and a lifetime of worries which, if examined closely, reveal themselves to be silly, fussy, and unrealistic. Few parents actually think through the litany of things which could go wrong. Few have reason.

Trite as it sounds, that was me, nine and a half years ago, waiting for my second daughter to be born. Grateful for a largely uncomplicated pregnancy, holding the pudgy hand of my totally healthy preschooler, I felt all the right things at all the right times. Like a made-for-tv movie, my cliche of a sweet life could have been shot with forboding music layered over the sunshine of those mid-summer days at the end of my pregnancy. As my husband and I folded laundry in the last week before Sammi was born, her big sister Ronni sleeping peacefully down the hall, we joked about how fleeting these quiet moments would become.

If you watched the movie in reverse, that would be a sick joke.

Sammi was born with her life force ahead of her, slapping us across the face over and over again, an unending warning against complacency and certainty and hubris. Life is never the same for people after they have children, but this was something far more than the loss of date nights and the thickening of waistlines. Sammi’s confounding, fluctuating ill health began hours before she was born and seldom let up. As we took on new identities as medical advocates and amateur diagnosticians, we were not given leave to lay down the mantle of parents. Every need — normal or otherwise —  required attending-to, and unlike diseases with clear diagnostic criteria, her illnesses were always idiopathic: not quite exactly like this thing, not quite exactly following that course.

She wasn’t a healthy baby.

Or a healthy toddler. Or preschooler. Or gradeschooler.

So what now? Now I write this blog — for me, hit over and over again in a fight to parent my children according to my instincts, and for you, who may be where I was and have been: alone in the dark, searching for someone who understood. If I understand even a piece of what you are experiencing, and if you’re anything like me, I’ll be glad to know you. I’ll lend words to this life, this deeply-felt, no-coasting life, this life without a healthy baby. Not everyone knows what that means, but I do.

sammi appreciating art

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