Monthly Archives: April 2013

Lyra’s Latest: Where’s the Poop?

Prescript: In July of 2013 we learned about Fruit-Eze. A jam-like product made entirely of fruit, it worked wonders on the constipation that routinely flared up even after Lyra began taking Synethroid. She has a tablespoon each and every morning. Available online, Fruit-Eze is nothing short of miraculous.

Warning: As the title indicates, or so I believe, expect baby poo descriptions in this piece. Squeamish Readers, please proceed with caution.

Constipation Fixation

Lyra loves the bread at Macaroni Grill
Lyra loves the bread at Macaroni Grill

“It could be her thyroid,” said Dr. M at Lyra’s six-month check up. “It’s standard of care for Down syndrome to check it now anyway.” I was at Lyra’s six-month check up and, just as I had at her five-month check up, I explained to Dr. M that iron supplements had constipated Lyra. What I hadn’t told Dr. M was that ten days after we started giving Lyra the multivitamins with iron, we had stopped. Dr. M very strongly recommended giving Lyra an iron supplement but Lyra’s cereal has just as much iron in it as the vitamins. Thus, I didn’t see any reason to continue dosing her with the vitamins when I just knew they had caused Lyra’s unrelenting constipation.

Here’s what I know about constipation: If you have it, the only people you might tell is your significant other or your doctor. Then again, you might not. But if it is your baby who is constipated, that little person’s bowel movements will consume your thinking, day after day, and you will talk about it to anyone who will listen. Nearly all else in your life becomes less important than your baby’s bowels. It isn’t even necessary to document when the baby pooped last. You know the date like you know your own birthday. And this is because a constipated baby is generally a very sad baby. The term “colicky” isn’t about temperment, but describes a baby who has irregular digestion and is pretty grumpy about it.

I learned all about this back in the 90s with my Hugo, whose birth was by far my most difficult. Weighing in at 10 pounds and with a chest circumference that was larger than that of his big head, we called him “Huge-o” for several months. He also got stuck on his way out of the womb. After I had delivered what seemed like his soccer ball-sized head, the midwives realized he had shoulder dystocia and while I puffed like a locomotive going up a steep hill, the midwives safely repositioned him. It took a while, but he came out just fine. A couple of days later, however, I developed a nasty uterine infection and was put on Augmentin, a big-gun antibiotic. It cured my infection but, through my breast milk, it also trashed Hugo’s digestive tract. He cried nearly every waking moment for the next five months. Born in late November, I drove him in the car on bumpy roads to soothe him. If he fell asleep, I pulled into parking lots, parked and, with the car running, worked on crossword puzzles. Three-year-old Claude, in the seat next to Baby Hugo, was under strict orders of silence if the baby fell asleep. Though more often than not, Claude also nodded off after a long drive to nowhere in an overly heated car.

Hugo cried because he hurt. He would go nine to twelve days without a bowel movement. I felt über-environmental—using cloth diapers was a breeze with Hugo; rarely was there any messy clean up. Just weeks of easy-to-wash, low-odor, pee-pee diapers. When he did go, however, Hugo blew like a volcano. Between the volume and the force with which he expelled it, I would often first spy Hugo’s poo at the nape of his neck, just above his collar. Everything would have to come off and at least twice, when strolling him on the tile floor of the Lane Avenue Mall in Columbus, I had to dash into Baby Gap to buy him clean clothes (you would think I kept an outfit on hand, but since it was so rarely needed, I would get lulled into lugging very little gear).

Hugo eventually normalized, but I recall those early days with an element of Post Traumatic Stress Disorder. It may sound like I’m joking, but I’m not. For months, Hugo’s shrieks of pain and subsequent nursing frequently punctuated what little sleep I got. During the days, I could not accomplish much of anything other than trying to calm him, which meant holding him around the clock or driving him on bumpy roads. I have heard that psychologists compare a lengthy episode of parenting a colicky baby with torture, and I believe it. With the pregnancies of every child after Hugo, I prayed for anything but another colicky baby.

Lyra, like all my other babies except Hugo, quickly and regularly produced the kind of lovely poos that babies who are exclusively fed breast milk produce. The color of Dijon mustard, they smelled yogurty, and she produced them two to three times a day. That is, until we gave her the vitamins that included iron. And then, snap, she just stopped going. After five days, I gave her a pediatric suppository and what came out was dark and tar-like. Damn iron I thought. After ten days on the vitamins, we stopped and figured that in a week her stools would once again be mustardy and regular. But that didn’t happen. We began working with her diet, first giving her prunes to eat, then, a few weeks later, switching her cereal from rice (which can be binding) to oatmeal. And we began giving her a daily dose of algal DHA because it is good for brain development. It is also oily and should help move things along. We regularly massage her belly and her day care provider gives her Reiki treatments. She has never been fed formula, which also can bind, but exclusively drinks breast milk.

All to no avail.

Instead, Lyra’s weekly bowel movements have become heart-breaking spectacles, which the whole family often attends. After several days without a stool, Lyra’s abdomen tightens like a rock slab as she fusses inconsolably. Rarely does Lyra pass the stool on her own now and she has become what I call “Our Little ATM.” I pop in a small glycerin suppository and in return, Lyra strains and pushes out black pellets. We hold her legs and massage her tummy and her brothers coo to her soothingly, while she wails with pain and sometimes, just before a hard pellet of poo erupts, droplets of blood seep through her anus. The only comfort for us is how quickly Lyra settles after everything’s passed. Then five days later, it starts all over again.

Dr. M Scores Again

The reason Dr. M insists Lyra take iron is because anemia, or iron deficiency, reduces the oxygen getting to the brain. And a brain getting less oxygen risks a drop in IQ and with Lyra’s Ds, it is imperative to avoid additional hits to her IQ.

At first blush, it may seem that I am anti-medical. I had all of my children at home. Until Lyra, I never participated in the American Academy of Pediatrics schedule for well-baby visits. I’m not interested in taking a healthy baby to see the doctor. And also, I don’t follow the AAP’s vaccination schedule, as I mentioned in “Finding a Pediatrician, or The Continuum of Jewish Women.”

But I am not anti-medical. In fact, I am deeply appreciative of modern medicine and all that it can do. Had Claude been born 50 years earlier, he likely would have died of dehydration by his first birthday, which was a common cause of childhood death prior to the 1950s when IVs became widely available. Claude had a vomiting virus and in less than 24 hours had shriveled up. The skin on his stomach stayed wrinkled like a raisin’s after a doctor pinched and released a one-inch section between her forefinger and thumb. Claude was rushed to the emergency room and given fluids intravenously.

Had I given birth to Hugo 75 years earlier, I might have died from my uterine infection, as antibiotics only became available in 1935. And certainly, had Lyra been born just a handful of decades ago, her cataracts would not have been surgically removed and she would have been blind.

But I find that the medical professions are often in the position, whether or not providers like it, of treating the symptoms of illness without effectively addressing the underlying causes. We observed an example of this when Lyra had her eye surgeries. Both times as we waited for Lyra to awaken in the post-op recovery room, most of the other patients were recovering from tonsillectomies. The cries of these children were as raw as the pain in their throats.

“I thought they didn’t do many tonsillectomies anymore,” I said to the nurse attending Lyra after her second surgery.

“Oh, no, they have been on the rise. It’s the bulk of what we see in here,” she said and when I asked why, she told me, “It’s sleep apnea. So many children are heavy now and they develop sleep apnea.

“So they take out their tonsils?” I asked.

“Yep,” she answered.

It shocks me that children should undergo surgery, which is hardly without risks, for something that is correctable with diet. But physicians have little to no ability to change what is likely an entire family’s eating habits in order to get one child to lose enough weight to resolve that child’s sleep apnea. So they quickly fix the symptom by surgically opening the airways with tonsillectomies.

That is not how I live. When my children or I have a health concern, I consider what might be the source of the issue and seek to resolve it. For example, Jules has had unremitting nasal drainage all this school year. I could just give him antihistamines, which I have now and again when he couldn’t sleep. But as the problem appeared systemic, I have worked with him to clear out sugar, wheat and dairy from his diet to see if that helps. Two weeks later, he stopped complaining of drainage.

And this is why we have not treated Lyra’s constipation with laxatives, which would only further decrease her body’s ability to properly process and eliminate her stools. Her constipation, as horrible as it is, is not her problem but rather the symptom of a bigger problem.

Hypothyroidism

In the case of Lyra and her constipation, it seems the introduction of iron was simply an unrelated factor, even though the timing suggested otherwise. As it turns out, the blood tests confirmed that Lyra has developed hypothyroidism. Her actual thyroid levels were fine. But the thyroid gland is the lackey of the pituitary gland. Like a shift supervisor at a factory, the pituitary gland monitors the thyroid gland’s output and responds by secreting something called TSH. TSH tells the thyroid gland how hard to work. When it wants the thyroid gland to work harder, the pituitary gland sends out more TSH. In Lyra’s case, her pituitary gland was making, according to some charts, twice as much TSH as is normal in order to get her thyroid gland to produce the proper amount of thyroid.

We were referred to the Endocrinology Center at Akron Children’s Hospital where I asked, just to be sure, that they retest Lyra’s blood. They found the same results as Dr. M’s lab. We were seen by a nurse practitioner who, after having me describe Lyra’s symptoms, asked if anyone else in the family had suffered from constipation. I told her about Baby Hugo and she said, “Oh, I tell parents it’s not so much how often they go, but what the consistency is. If we have mashed potato stools, it’s okay, but the hard pellets are not.” Had I known that sixteen years ago!

On April sixth, we began giving Synthroid, a synthetic thyroid replacement drug, to Lyra. At first, we smashed a tiny pill between two spoons, mixed the resultant powder in a cup with a teaspoon or so of breast milk, drew it up in an oral syringe and gave it to her. On April seventh, our clever girl began blowing raspberries when she felt the plastic syringe touch her mouth. Between what she sputtered out of her mouth and the reality that some of the powder remained in both the cup and the syringe, we weren’t sure how much of her dose she was actually getting.

Lyra looking like a big girl next to her newborn buddy, Cora.
Lyra looking like a big girl next to her newborn buddy, Cora.

Beginning this week, I now slide the small pill down her throat with my finger and promptly nurse her. She gagged a little the first time, but hasn’t since. We know she has the full dose in her body and once she’s been on the Synthroid for six weeks, we will have her blood tested again. After that, we get to visit the Endocrinology Center every three months until Lyra is four or five years old. It is quite likely that Lyra will need to take some form of thyroid replacement her entire life. I am just glad we caught it so soon, since thyroid can affect so much, including many things that are already concerns for people with Down syndrome.

For now, we are looking for softer stools, however often they pass. And perhaps, too, our wee teeny peanut will get a little bigger.

Update, April 21, 2013:

“You want to smell something wonderful?” I asked Max this afternoon, before sticking Lyra’s behind in his face. He was working at his desk in his home office when I brought Lyra in from the minivan after returning from Jules’ track meet. As soon as I’d plucked her from her car seat, I’d smelled it: pungent, breastmilk poo.

Sure enough, when I opened Lyra’s diaper a few minutes after making Max sniff her derriere, I was greeted by the lovely site of an oh-so-typical poo. That is, typical for a baby who is exclusively breastfed–mustardy orange with a butyeric odor, kind of like movie theater popcorn–who isn’t suffering from hypothyroidism.

Fifteen days after she began taking thyroid replacement drugs, our girl has regulated. The days of rock hard pellets are behind us, or so I pray.

On Writing About Family

Good Busy

Whoopsie Piggle has not had a new post in over two weeks and this has been for two good reasons. First of all, I have two separate freelance projects that have kept me very busy. In some measure, I credit Whoopsie Piggle for this. Or rather, in the process of writing Whoopsie Piggle, I publicly declared my desire to earn my income by writing. And I have a theory, not so unusual, that you can’t get what you want if you don’t clearly state what that is. I don’t mean general platitudes such as world peace, my children to be happy, to have a successful career, or whatever. The more declarative and precise the intention, the more likely it is to happen. Curiously, however, generalizations seem to manifest just fine in reverse. Tell yourself your life sucks and it’s a fair bet that not only does your life suck; it will continue to suck until you change your thinking.

I’ve been clear for the past six years on what I want in a partner and homelife. But it has taken me longer to clarify my career goals with the same specificity. This is, in part, because I have felt shame for wanting a creative career. Writing, to be a writer, sounds selfish if for no other reason than there are few obvious ways to make money as a writer. Journalism and teaching at colleges were practical considerations for writers in the recent past, but neither option is what it was even ten years ago. Journalism is a field scrambling to respond to an unexpected brush fire, otherwise known as the Internet, which has consumed all aspects of the publishing industry. I am qualified to teach at the college level, but so are multitudes of other writers and with so few jobs available, the unspoken requirements have risen. For the most part, a tenure-track job teaching writing requires not only an MFA but also a published book and preferably a PhD. Maybe someday I’ll have these credentials, but not this year.

So while I’m not yet earning a living wage by writing, what I am earning helps me with the choices I make for my children. Choices like college tuition for Claude, music lessons for Hugo, and private school and tutoring for Jules. When I was a twenty-something, living on a shoestring was not a problem because I was only responsible for myself. Now I am the mother of five children and raising them well is a priority that conditions everything I do. Which is probably why I kept returning to my family, specifically the children, as I thought of a new project in the months prior to launching Whoopsie Piggle. Possibly a book, I had thought. One about the journey the big boys and I have taken over the course of their lives and how we’ve all come to embrace this new dynamic, a new family in fact, with the addition of Max and then Leif and finally, Lyra.

I know several non-fiction writers who purposely avoid writing about their children. To keep their children’s lives sacrosanct from the public, they hang velvet curtains in their stories, blocking all but the fact that their kids exist and sometimes not even that information comes through. I have heard writers say their teenaged children would be mortified to discover themselves as a character in their parent’s work.

Not my kids. I write about how they have shaped me, and my life, as much as I have had any impact on them. I am mindful of what I write and keep as a primary point of reference that my children will one day have careers of their own. Rather than complaining about being creative fodder, for now the boys enjoy reading about themselves. Particularly Hugo. If I have come at all close to accurately capturing his personality, this should surprise nobody.

Who owns memories?

My last essay, “Shattering Patterns,” was about fathers and firstborns—me and my dad, Claude and his father, as well as Claude and me. For though I have long heard faint echoes in my life, writing is the one way I know to find form for the abstract, which was particularly true of that essay. Writing it helped give specificity, once again, to my observations and thoughts. As his mother, I cannot imagine not wanting a close relationship with Claude. On the other hand, I have long worked to overcome the feeling that it was my fault my father and mother were never available for parenting or that they, like Claude’s father, did not want a close relationship with their child. And while writing about Claude’s relationship to his father alongside writing about my own relationship to my father was illuminating for me, I was not so sure Claude would want such a piece published.

“You could have been more revealing,” Claude told me after he read “Shattering Patterns.” “No, really,” he continued when I questioned him. “I wouldn’t have minded if you added a link to my poetry, you know to show that even if I don’t think about my dad, there’s still stuff in there.” As he reformulates more patterns, I see Claude transcending both of his parents in all that he does. Which is as it should be.

What I didn’t expect, but probably should have, was for someone to be upset over a line about my experience. “I never saw your father let you inhale marijuana smoke!” said a clearly upset family member, and I believe this person completely. I explained, however, that I quite viscerally remember breathing in smoke from a paper bag. I also remember talking about it with friends at school when I was still quite young. This is not a flashback memory—it has always been there.

What outsiders may find more shocking is this: I am not troubled by the memory of being given marijuana smoke as a young child. I have not nor would I do the same to my children. Legal antihistamines, however, such as Benadryl, are commonly administered to young children. If all things were equal in terms of legality, I’d be similarly concerned with the use antihistamines as with marijuana. But for now, in most states, they are not legally comparable.

Should I have skipped adding the sentence about marijuana? Was I unnecessarily revealing, particularly when I don’t find the information that shocking? Perhaps. I think too, that 30 to 40 years later, many seem to forget how drug saturated the late sixties and all of the seventies were. While many of my friends’ parents were not smoking pot, several were. And I regularly meet people who recall similar hazy days of partying parents. What might sound shocking today wasn’t so unusual then. A few family friendly movies from that time, films like The Bad News Bears or Little Darlings, give testament to how much times have changed.

Veteran Road Warriors

Then: A photo of the boys (ages 13, 10 & 7) and me, taken by a stranger, in 2007.
Then: A photo of the boys (ages 13, 10 & 7) and me, taken by a stranger, in 2007.

I stated that there are two good reasons why Whoopsie Piggle has been back-burnered this past two weeks. Besides good work writing, we went on our first vacation in nearly two years. In four days, we packed in a trip like the boys and I used to regularly take: in a vehicle filled with food and audiotapes, we headed out for a National Park, this time Mammoth Caves in Kentucky.

“Hugo just can’t stop picking a fight with you, can he?” said Max the night before we left. It was true. Hugo had been in rare form for two days. As I cleaned the kitchen after dinner that evening, Hugo launched into me like a district attorney, pointedly telling me he remained disappointed by his sixteenth birthday, which was the day after Thanksgiving.

“I don’t ever want to spend my birthday in the car for eight hours again!” he said, referring to the fact that on the day he turned sixteen, we had driven home from Northern Michigan, where we’d spent Thanksgiving with the children’s grandparents. We also stopped at the Toledo Museum of Art and saw a marvelous Edouard Manet exhibit and took everyone to dinner at the restaurant of Hugo’s choosing. That weekend, I drove Hugo to Guitar Center and bought him a pricey recording device he had long lusted after. I had waited until after his birthday to buy it during the post-Thanksgiving sale, which Hugo had agreed to at the time.

“What are you talking about?” I asked him, “We came home on your birthday because you had to work the next day! None of us wanted to leave early, we did it for you.”

“Never mind,” he said in a way that indicated he wanted me to do anything but. Sure enough, half an hour later, he appeared in our bedroom as Max and I were going to bed. “I’m not mad about my birthday, I just didn’t want to spend it in the car!”

I again tried, but got nowhere with Hugo. Finally, Max said to him, “Okay, that’s over, Hugo. So what do you want us to do now?”

“Just promise we won’t travel on my birthday ever again,” he said. We promised and he left our room.

“He’s sleep deprived,” said Max as he turned out the light. He was right. Earlier that week, Hugo had gone to New York City for three days with a school group and after arriving back in Akron on a bus at 7:30 in the morning, he had to turn around and go to work both days before we left for Kentucky.

Our family today (minus collegiate Claude), also photographed by a stranger.
Our family today (minus collegiate Claude), also photographed by a stranger.

A day into our trip, Hugo was a different person. On our way down, we’d listened to The Old Man and the Sea, which was assigned spring break reading for his English class. Just for Hugo, we’d packed two dozen, hard-boiled eggs. In cold weather that threatened rain, Hugo delighted in making egg salad on the side of a concrete retaining wall at a rest stop. Because he has always loved them so, egg salad and deviled eggs were the first dishes Hugo learned to make himself. That night in the national park hotel, Hugo had a persistent cough and the only medicine I had brought that would help was Benadryl. I gave him one tablet and he fell asleep by 8:30 while listening to Max read to Jules. So did I. The next two days, as we toured Mammoth Caves and hiked on trails in the park, Hugo was no longer a disgruntled teen. He was as impressed with the enormous cave chambers as any of us and equally as effusive in saying so. Often while hugging us.

Fully Functional

I write about my family. In part, because the quotidian amazes me. A little baby that I carried all over Boston became a boy who couldn’t read until the third grade when he was diagnosed with, and began the long process of remediation for, severe dyslexia. He now writes poetry and papers that floor me. Another boy, one who is brilliant at anything he attempts from academics to sports to music, has also challenged me since before his birth as a ten-pounder who got stuck with shoulder dystocia on the way out of the womb. That boy has grown up in the past year and now works hard at everything he does. He also makes me laugh every day. And my peace-maker child, the one I most feared would suffer long term consequences from the divorce is now, at nearly thirteen years old, becoming appropriately mouthy. I cannot express how relieved I am that he is. Then came Leif and Lyra, whom I think are the luckiest little kids I know, precisely because they have three adoring big brothers. We are like our own little village of five raising the two youngest children of the family.

I regularly turn to Max and say, “Everyone’s in a good place. Look at the boys, look at the babies, look at us.” Sure, dysfunctional families are fascinating to read about and I have enough of dysfunction in my personal story to write volumes of the dreck. But dysfunctional backgrounds are not generational sentences.

Life is long. Life is short. And, yes, life is good. Especially when you show up for everything—the fun, the challenges and all the messy stuff.