Chew, Chew, Chew!

“Do you guys really have to check her labs every 4 hours?” I asked. Nayla hated getting her blood drawn as every baby would. It was painful seeing her scream in terror every time the phlebotomist would come draw them. I was really anxious as we did all of the pre testing before surgery to place a gastrostomy tube (g-tube). Nayla was diagnosed with “failure to thrive” at a few months old. We had been trying nasogastric tube feedings for months, but Nayla wasn’t gaining weight. By 10 months old, she was a mere 12 lbs. Dr. Huss, Nayla’s pediatrician, said it was time to escalate care.  Before placement of the g-tube, Nayla had to be monitored in the hospital to see if she would actually gain weight with adequate nutrition and to watch for refeeding syndrome. Hence the blood draws every 4 hours. More than the pre-testing, I was nervous about the surgery itself. Although g-tube placement is one of the most basic pediatric surgery procedures, anything could happen.  I was also worried about who would do what in the operating room.

My best day in medical school was when my Attending let me put in a g-tube during my pediatric surgery rotation. “Scalpel to me,” the surgeon said. ” On second thought, ” scalpel to Tera.” I didn’t know my heart could race so quickly without me having a heart attack. I took the knife, made the incision, and carefully did exactly as the surgeon instructed. Wow.

I thought of this awesome experience when Nayla was getting ready for her surgery. I was still in medical school and I wondered which of my schoolmates would hold the knife. I wondered if their hands were as steady as mine.

Healthcare professionals often make the worst patients (and patient family members).  It’s because they have the inside scoop about how the medical system works, in all its beauty and ugliness. They know that although everything could have been done exactly right for a patient, a good outcome is not guaranteed.  Sometimes bad stuff happens unexpectedly. It is this realization that is terrifying. It makes them feel a level of vulnerability that they aren’t used to. In order to gain back some control, healthcare professionals do everything they can to direct their own (or their family members’) care, even if they have zero expertise in a certain area.  They sometimes wear scrubs, or a white coat, or a hospital I.D. badge in their room to send off a radar saying, “Hey, look at me. I’m a doctor too and you can’t fool me!” I sat quietly on the bench in Nayla’s room waiting for them to come get her. I didn’t wear scrubs or my short white coat, but inside I felt every bit as out of control. The pediatric surgery fellow came and sat beside me. He assured me that he would be doing the case personally. Silent relief. I had just worked with him on my surgical oncology rotation. He was very good and usually cocky. But not this time. Sitting next to me in Nayla’s hospital room, he was compassionate and caring. His stutter was endearing. Nayla was in good hands.

After the surgery, Nayla looked swollen, like she had been pumped full of IV fluids. On rounds, Dr. Huss said, “Tera, this is only the beginning.” She was right.

The months and years ahead seemed like an uphill battle. My world was consumed with home health, special and expensive calorie dense formula, appetite stimulants, gastroenterologist appointments and feeding therapy, the last of which was the worst. Necessary, but painful.  Nayla was prescribed feeding therapy to teach her how to eat. It makes sense, because kids who receive 100% of their nutrition from a feeding tube have no real reason to develop or maintain those skills required to chew and swallow. Between ages 2 and 3, Nayla’s weekly therapy sessions looked like this. She had to be sitting in a particular chair such that the table was at an ideal height. Not too high or too low. The table had to be absolutely clear, with no dishes or utensils. Thomas, myself or both of us had to sit at the table with Nayla during the session so that we could try all of the foods. There was a color and texture progression to all of them. For instance, guacamole (soft) followed celery (hard) because they were both green. Tortilla chips followed celery because they were both crunchy. Cheese followed tortilla chips because the chips could be dipped in the cheese.

“Chew, chew, chew!” Erin, our feeding therapist exclaimed.  “Nayla, you can chew and spit it out but you have to at least try. See, mommy and daddy are chewing and trying. Daddy, can you open your mouth and show Nayla?”

Did I mention that this was painful? I could think of 10,000 places I’d rather be.

As a mother of a child with serious growth issues, I used to get bothered by things that parents of average size children probably don’t care about.  For example, public places like the grocery store would put me on guard because without fail, some stranger had something to say about just how “tiiinnnnyyy” Nayla was. I don’t know why I got so offended when people would say it. I mean, she was very small for her age.  My friend Lakedra used to say, “Tera, chihuahuas make chihuahuas and elephants make elephants.” I think she was referencing the fact that Thomas and I are smaller people, so Nayla by default would also be small.  “But should she be this small?” I thought.  My friend Gelila from Ethiopia would say, “Tera, Nayla is fine. You should take that tube out. She is the average size of kids in my country.”  I didn’t know whether to be reassured or alarmed by that fact.

Because Nayla was my first child, I got a lot of feedback from the experienced mothers in my life about how to make her grow. I heard that everything would be solved if I would “just give her some grits.” I was also advised that she would grow “if I had just a little more time” to spend with her during mealtime. I heard that “babies won’t starve themselves.” And that, “Sometimes it’s just a matter of the will,” suggesting that mine and Nayla’s wills had to have a showdown. And I must emerge as the victor. I cried to my sister often after receiving these pearls of wisdom.  After all, the last thing a mother wants to hear is that her child’s issues are her fault.  Even more tiring than the feelings of inadequacy, I was exhausted by the eternal fight in which I was engaged. The fight was not between my will and Nayla’s. It was between modern medicine and mother-wisdom, which the old folks call “mother wit.”

I’ll be very honest here. When Nayla would go away to South Carolina to visit family, I’d think to myself, “Finally, you’re gonna feel my struggle.” I was secretly jealous and annoyed when I heard reports of just how well she ate with them.

Eventually around age 6, Nayla made it to “the curve,” the standard by which pediatricians monitor growth.  I still remember the feelings of elation and relief when I heard the news. We took the g-tube out at age 7 and haven’t looked back. Nayla has a substantial scar on her abdomen where the tube once was. When I see the scar, I’m reminded of a lot of things. I remember her first birthday, which was two months after the tube was placed. I wanted it to be special so I bought a hat, a bib and a balloon branded with the occasion. I drove all around Nashville to find a soy-free, dairy free cupcake for her to eat.  At this point, we didn’t know if her feeding issues were because of an undiagnosed allergy, so all of her food had to be free of potential allergens and consequently, taste.  We put Nayla in her high chair. I was determined to get that quintessential picture of the birthday girl with cake all over her face and in her hands.  As a new mother, I needed that picture. I put the hat on Nayla and she was having none of it.  She started to cry.

               Me: “Happy Birthday, Sweetheart. Let’s get a bite of your cupcake!”

               Nayla: still crying.

               Me: “Nayla, it looks so good.” Lies. “Let’s take a bite.”

I never got my ideal picture, but now as I look at the scar on Nayla’s belly, I realize that what I got in Nayla was so much more. I have a resilient, precocious and awesome little girl. Being her mother has developed me as a person in ways that I couldn’t have imagined.  I wouldn’t trade a thing, except the feeding therapy.

           


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