Pyloric Stenosis: Worst Mom Ever?

Pyloric Stenosis
I cried. I had slept about five hours in three days, everything I owned was covered in spoiled formula, and the doctor was telling me it could last for months. I was absolutely positive I would go insane.
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Clearly, I was the worst mom ever.

I was 26, had a master’s degree and a good job. And, I had no idea how to take care of one little baby girl.

Brittany was born in July and by all accounts from my family, friends, and her doctors, she was perfect. My grandmother even swore to me that all of her seven children had also weighed exactly the same, 8 pounds 3 1/2 ounces, when they were born.

There was some initial trouble with her formula, but as soon as we got her switched over to soy, she seemed to be doing well. That is, until the day she was three weeks old, and I took her to visit her grandparents for the first time.

Southern Illinois in August is hot and humid. My in-laws did not have air conditioning, and at the time my father-in-law still smoked. Brittany started getting fussy not long after we arrived, so we decided to cut short our visit and head home.

She was puking by the time we got home.  I knew that babies sometimes spit up, so I wasn't concerned at first. In fact for most of that first evening, I just assumed that the combination of the heat and smoke had been too much for this little lady.

Brittany barely slept that night, and my husband sat up with her so that I could get a little sleep. I slept about three hours. The only time she seemed to stop crying was if she was being held. Even then, she screamed for hours on end.

I noticed that every time she had a bottle, she threw up, seemingly as much she drank. I also noticed that if I added extra water to the formula, it seemed like she was keeping more of it down.

After almost 36 hours of having her throw up every time she ate, I tearfully called a family friend to ask for advice. 

“I’m the worst mother ever and she hates me,” I cried.

“Maybe you should take her to the doctor,” Janice said.

Worst mom ever.

I didn't even think about the possibility that she could really be sick. I had just assumed that I, as a new mother, was clueless and feeding her wrong.

Turns out, Janice said that I was feeding her wrong. Diluting her formula was potentially dangerous because it meant she wasn't getting enough nutrients, Janice told me.

“You might also want to consider getting some Pedialyte,” she said.

During the night, my husband noticed she wasn't always waking up to throw up. We began laying her on her stomach and someone was awake with her around-the-clock, most of the time it was both of us since neither seemed to be able to calm her cries.

My mother-in-law volunteered to bring us the Pedialyte and to watch Brittany long enough for me to get a shower and wash a few bottles. I made it as far as the bathroom and was taking off my puke covered shirt before my mother-in-law screamed for help.

“Projectile vomiting is not spitting up,” she told me, as if understanding for the first time what we’d been saying for the past 2 days.

On the third day, we were able to get Brittany in to see her pediatrician. After thoroughly examining her, Dr. Smith’s prognosis left me in tears.

“Some babies are just colicky,” he said. “She'll grow out of it eventually.”

“How long is eventually?” I asked.

“Most babies grow out of it by the time they are six months old.”

I cried. I had slept about five hours in three days, everything I owned was covered in spoiled formula, and the doctor was telling me it could last for months. I was absolutely positive I would go insane. He prescribed small amounts of Maalox to ease her gas pains and told us to come back in two days.

By the time we returned on Friday, Brittany looked bad. She was fussing constantly and keeping down almost nothing when she ate. The nurses were concerned with the way she looked and when they took her weight, we found that she had lost more than half a pound in two days.

As soon as he saw her, Dr. Smith said we would be taking her to the hospital immediately for treatment for the dehydration. Then, he asked me if she was a firstborn child. She was, and I was clearly an insane first-time mother.

“She's the wrong age, and the wrong sex, but I think I know what's wrong with her,” he said. Pressing gently on her abdomen, he found the knot at the bottom of her stomach. “We’ll have to do some tests to be sure, but I think she has pyloric stenosis.”

Terror and relief fought for control of my mind. She wasn't just colicky baby! But, if her doctor was right, my not quite one month old daughter needed abdominal surgery.

Dr. Smith instructed his staff to call the local hospital and arrange for Brittany to be admitted as soon as we could get her there. He also ordered an immediate upper G.I. to verify what was wrong. The hospital balked. It was a gorgeous Friday afternoon in August, and they weren't even sure the radiologist was still in the building, they told the doctor's office staff.

Dr. Smith, who was a kindly old pediatrician less than a year away from his retirement, very vehemently decided that wasn't good enough. He called the head of radiology himself and demanded that the test be ready as soon as Brittany arrived.

As we walked into the hospital, the staff there began placing the bracelets on her arm as they led me directly to radiology.  Half an hour later, when I was wearing most of the barium bottle they had given her, the head of radiology himself performed the scan.

While I waited outside her room so that I didn't have to see the nurses attach her IV, another nurse came by with the test results. Brittany did have pyloric stenosis, and they would plan surgery just as soon as the anesthesiologist cleared her.

The nurse was kind and understanding and explained the procedures of the surgery in detail. In short, the surgeon would slice the pyloric band so that food could begin moving from the stomach into the intestines. Dr. Clutts, the surgeon, would be up later to talk more about the surgery, she told us.

Dr. Clutts? My baby girl’s surgeon’s name is doctor “klutz?”  

My disbelief at the surgeon's name must've registered on my face as the nurse immediately reached out and took my hand. “He's one of the best surgeons on staff, and he does the surgery all the time,” she said.

Once the IV was in place, the next step was to remove any lingering liquid from Brittany’s stomach. I was in the hallway again,  not wanting to see them stick a tube up my baby's nose, when a second nurse stopped to explain the surgery to me. By the time Dr. Clutts came by that evening at seven, no less than four members of the hospital staff had explained the procedure to us.

“I think if one more person tells me how to do the surgery, I'm going to do it myself,” I told the doctor.

He laughed, and then explained that in some parts of the world, they don't perform surgery for pyloric stenosis. They teach the parents how to give their infants IV injections, and then wait for the children to grow out of the problem.

I was horrified. Brittany was getting better since they inserted the IV. I knew she was getting the nutrients she needed, but she didn't. She felt like she was starving and all I could do to try to satisfy her was offer her a pacifier. By the time the surgery was done, she would never take a pacifier again.

The staff at Memorial Hospital of Carbondale was perfect, bringing my husband and I dinner trays and late-night bags of microwave popcorn as we all tried to comfort Brittany through the night. Her surgery was scheduled for 7 a.m. on Saturday. The relief of knowing what was wrong with her fled during the night and all that was left was the terror for the well-being of my little girl.

I'm not sure if I was ever given the name of the anesthesiologist. If so, it was lost in the turmoil and fear of that day. What I do remember clearly, as though they were spoken to me today, were his words of promise. “I'll bring her back to you safe.”

The hospital staff not so gently kicked us out of the hospital during her surgery.

“Go get a shower, get some sleep, or get something to eat,” they said. “You can't do anything for her here. You'll just make yourselves crazy. Be back about noon, and she'll be in recovery.”

The time that they had promised to bring her back came and went. We paced and cried and pestered the nurses unmercifully. Then, that same anesthesiologist walked in carrying my little girl in his arms.

“Her vocal cords reacted poorly to the anesthesia, so her cries may sound a little weird, but I wanted to stay with her until she was awake, and I could tell you she's okay.”

I cried again. I cried a lot during that week. I supposed it could have been the post-pregnancy hormones, but I think it was the fear.

That night, we got to feed her tiny amounts of formula again, fearing it would come back up. She got milliliters at a time, barely a mouthful for a hungry baby. She gulped it down and begged for more. We fed her every half hour or so until about 3 a.m. when we changed her first barium-filled diaper.

I doubt most mothers are ever so thrilled to change a poop-filled diaper!

Just 24 hours after her surgery, the hospital was ready to let Brittany come home. My new fear was surgical tape over her incision. No stitches, staples or glue, just surgical tape and instructions to just let it fall off when it was ready.

Who, me? I’m the worst mom ever, remember?

Thirteen years later, Brittany is a healthy teen, taller than her Mom. The scar is small, but visible on her left side and she has apparently grown out of her pyloric stenosis once and for all. I suspect I might on occasion be reminded again that I was the worst mom ever, but knowing she’s healthy makes it all worth it.

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