Holding Things

insideSammiBetween 2010 and 2013, between the ages of four and eight, my daughter Sammi had ten endoscopies. Each time, she fasted from dinner the night before until after her morning procedure. Each time, they held a gas mask over her face in the operating room until she fell asleep, and then, after escorting me out of the room, they inserted an IV with heavier anesthesia and fluids, took a blood sample, inserted a mouthpiece and fed a camera down into her esophagus. They took pictures and they took biopsies — tiny pieces of her esophagus to test for the presence of eosinophils, the white blood cells whose functions, according to Cincinnati Children’s Hospital, include

movement to inflamed areas, trapping substances, killing cells, antiparasitic and bactericidal activity, participating in immediate allergic reactions, and modulating inflammatory responses. 

Ten times. They did that to her ten times in just over three years. They did that because she was still experiencing the symptoms of GERD — also known as “reflux” — past the age that a child would normally outgrow it. We took her to a major children’s hospital gastroenterology practice, a practice in the same hospital that had corrected her cardiac issue when she was a baby. Keeping everything in the same hospital made sense to us, at the time. All the records would be together, we thought. There would be less repeating ourselves, far fewer requirements of us to remember dates and test results — all the information would be stored with her chart.

We believed in the power of information sharing among professionals, which was a mistake. Continue Reading…

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When It Looks Like a Blueberry, It’s Probably a Blueberry

blueberry

My daughter Sammi was born at 41.5 weeks of gestation at four pounds and eleven ounces. I have spent the last ten years reciting those statistics in reverse.

“So mom, what was her birth weight?” is often one of the first questions a pediatric specialist asks.

A pause for my answer, and then I could chant it along with them: “So was she premature?”

No, she wasn’t, I have to answer. She was what they call post-term, which is the opposite of premature. It’s late. She was waiting it out inside me, and then when she came out as tiny as a premature baby, everyone scrambled. She was totally proportionate — filled out and lovely, just miniature. The hospital did genetic testing and found nothing out of the ordinary. That’s when we began to hear two different lines of justification for her size. Continue Reading…

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Vocabulary

artAll families I know develop — unconsciously — a vocabulary specific to them. This can include everything from pet names to invented foods to the life-long adoption of mispronunciations from toddlerhood. Being in a nuclear family — a new nuclear family, not the one in which we grew up — is, in many ways, like having a glorious lifetime membership in a club in which we got to make all the rules and invite in all the members ourselves. By nature, it is empowering for the adult.

The innocence of this family vocabulary can seem silly from the outside because, most of the time, these new words are like long-standing and elaborate inside jokes. We have words like that in our family, too. The exception, for us, is the word “urp.”

“Urp” is the word we invented to describe the sound Sammi made when she had what we assumed to be reflux. Babies with reflux are a known entity — the baby silently jostles his own torso up and then — sometimes also silently — a stream of spit-up drools out, to be wiped away by an ever-present burp cloth. Sometimes, this baby-reflux interferes with sleep and comfort and so the baby is given reflux medication. This was what happened to Sammi at six weeks old; her reflux was silent and, oddly, never resulted in spitting up. She constantly smelled like sour baby vomit, but it was on her breath and not making up to her mouth.

Her pediatrician put her on a reflux medication. It got changed once when she was around a year old, then again at two years old, when our efforts to take her off of it were met with the constant sound we named “Urp.” The pediatrician — and we — had expected her to grow out of it, as babies do, but whenever she stopped taking it, there it was again: “urp.” It was a gurgling sound, followed by a hard swallow and a series of coughs. It was unnerving.

When she got old enough to talk, we would sometimes ask her about it. We’d hear “urp” and ask if she was ok.

“Jus’ my cereal,” she’d chirp, going back to her toys.

“It’s jus’ my yogurt.”

“It’s my dinner in my mouth,” she’d say as we pulled her pajamas over her head.

It didn’t seem to bother her. Sometimes it was eight or ten times per day. She never vomited, she never complained of pain, she never woke up gagging. Still, we worried about it. We had her bed propped up on an angle, gave her first the antacids and then the proton pump inhibitors. The medicine made the sound less frequent than when she was off the medicine, but nothing truly made it stop.

Urp. Just my breakfast.

Urp. Just raspberries.

We asked ourselves constantly, is she urping more lately? Why is she still urping? She’s three. Shouldn’t she have outgrown this?

We worried. We were professional worriers. Her pediatrician, both perplexed and long-accustomed to the mysteries of childhood illness and behavior, just kept telling us to wait a few more months and try again to take her off the medication. We repeated that cycle for years.

Urp. Just noodles.

Urp. Just water.

Just wait. So we waited.

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Tandem Tantrums

tantrum

I never felt alone again after someone else admitted to me that she didn’t know what to do.

By the time Sammi was three, I had established a work-from-home-parent setup in our new town. Her big sister was in the early years of grade school, and Sammi’s visits to the school every day by stroller brought both of us into a brand new world of other human beings. Living as we had in seclusion for the first years of her life — both due to medical necessity and then the secondhand isolation that came from it — I was unprepared for the beauty that came with speaking to other adults every single day. Many of the people I met were like me, pushing strollers with younger siblings to the playground each morning and afternoon. Our walkable public school made for a glory of impromptu social gatherings. It was only a mile from our previous home but may as well have been another country from it in terms of the effect it had on my own mental health. I was able to connect regularly with a variety of other parents for the first time.

Also for the first time, I heard complaints about their children that echoed my own. One winter afternoon when I had managed to cram Sammi into winter clothing and push her rickety stroller the four blocks to the first grade exit door where her sister would come out, another parent with a baby in a stroller and a three year old boy dragging behind her waved at me. Her daughter and my older daughter Ronni had established a mutual admiration society which would eventually lead the way to one of the best friendships of our family’s life, but truly, it began for me when this mother answered my “How’s it going?” with the following lightning bolt of connection:

“How’s it going?! I’m done. I give up. I’m taking him in to be assessed for sensory issues. I can’t take this craziness anymore.”

Her son refused to wear boots. Or a coat. Or socks. I may have the details wrong, but I heard in it the same line of edge-balancing I felt in my time alone at home with Sammi. Sammi would not get dressed. Sammi would not go to sleep. Sammi would not eat. Sammi would not leave a place we were, or enter a place we needed to be.

She was also, like my new friend’s son, breathtakingly cute.

I couldn’t see the struggle in my friend’s son’s round, gorgeous face. No one could see my blond angel for the often furious child she was at home. It was invisible and, as a result, so was my real state-of-mind most days when I entered that playground. I waved, I connected, I made plans, I shared bags of grapes. Under the surface, I was desperate not to go home to another evening of screaming tantrums that reminded me so terribly of the sleep training that nearly killed her, and me.

Sammi’s tantrums regularly included self-harm. She smashed her head, over and over, into anything she could find — hard edges, hard floors, wood tables, toys. I wondered if she was trying to finish what her crazy cardiac anatomy had started.

That friend’s admission that she, too, fought the demons in her head — and the one small demon who lived in her house — changed my whole approach. When I found that she had years of experience in mental health services and even that didn’t keep her from feeling the level of frustration I did, it cemented in me the need to reach out and have things assessed. Once again, I called in the experts. Once again, I admitted that I couldn’t fix things.

Only this time, I was not alone.

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Inspiring Stories for Congenital Heart Disease Awareness Week

This week is Congenital Heart Disease Awareness Week, and I feel lucky to have been nominated for the Inspiring Blog Award at just the right time, thanks to Shelagh at The Open Jar. In thanks — and in an effort to pay it forward — I’d like to share and nominate these inspiring blogs of people in health struggles with their children — and one blog that offers fuel to get us through it.

  1. Little Earthling Blog: Apollo’s Story — the first story of a double aortic arch that I ever read online.
  2. Love That Max — a beautiful story of a mom and of kids with special needs who kick butt
  3. Charlotte’s Journey Home — the journey of a child with CHD and her awesome advocate of a mom
  4. Superman Sam — a cancer story followed by nearly the entire north shore of Chicago last year as Sam fought valiantly until his family went on to carry the torch
  5. Cybele Pascal’s Allergy Blog — practical advice for when food allergies and restrictions seem overwhelming

Thank you, Shelagh! If anyone out there has someone to nominate, please feel free to share a link in the comments.

inspiring-blogger-award-two

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