When it’s not just reflux; my newborn had pyloric stenosis and needed surgery

As a new mom, the word “scary” gets tossed around a lot. Because honestly, it’s the best way to describe it. Everything is new and unfamiliar, and every poop, grunt or squeak from your baby gets observed the way a resident on Grey’s Anatomy observes a patient who has been admitted for Ebola. “Does this look normal?” is also just a part of a new parent’s love language.

But when something doesn’t feel right, or in fact feels very wrong, it’s all consuming. I’m a brand-new mom to a brand-new baby—a baby who had been diagnosed with reflux. Reflux in babies is common. Their tiny tummies aren’t mature enough to hold their feeds down, so sometimes a little comes back up as “spit up”. I was told it’s usually more of a laundry issue than a medical one, but to monitor and call the pediatrician in the event things seemed to get worse.

By week 5 with my newborn, spit up was everywhere. It was in my hair, it was on my clothes and every surface of my home had a burp cloth ready for clean-up. I switched from breast milk to different kinds of formula. We kept him elevated after feeds. We tried it all. But when the burp cloths transformed into full on beach towels, and the “spit up” turned exorcist-style projectile, I knew in my gut it wasn’t just reflux. It couldn’t be.

The morning we found out that it wasn’t “just reflux” still haunts me. I brought my 5-week old baby back to the pediatrician, spit up in my hair, apologizing profusely for being a paranoid first-time mom. But my worry was valid. I wasn’t over-reacting. There was something wrong with my baby. They found he had a milk allergy and for a brief moment, that diagnosis was a relief. I assumed that explained all the vomiting and constant fussiness. We would change his formula, and everything would be better. Right?

Wrong.

The doctor also said they wanted to have him looked at for something called pyloric stenosis; a condition where the pylorus muscle in babies becomes thickened, preventing food from leaving the stomach and entering the small intestine, causing them to forcefully vomit up their feeds. She explained that this condition usually presents itself in babies around 4-6 weeks of age, causes forceful vomiting, and is most common in first born males. We checked all the boxes and were immediately sent for ultrasound at Hasbro Children’s Hospital.

When the ultrasound tech left the room to get the radiologist so he could take a closer look, my heart sank. It kerplunked so deep in my gut that I couldn’t breathe. I sat there, holding my breath and my 8 pound, 5-week old baby, when they returned with the news I already saw coming.

The radiologist said “Your son does in fact have Pyloric Stenosis and he will need surgery. We will be admitting him now.”

*Starts frantically googling pyloric stenosis*

No matter how good the bedside manner, or how many times a doctor calmly tells a mom that the surgery her baby needs is a “simple, straightforward one” or that “everything will be fine,” it does not ease the blow. At that moment, in that room, dried spit up caked to my scalp, eyes so heavy and tired from weeks of spit up filled nights, I lost it. I sobbed while rocking my baby, in shock that this was happening, yet saying over and over I knew something was wrong. My baby was so tiny, born just 5 weeks prior, at only 37-weeks gestation and already needed an operation. Why my baby? Why our family? Why did he have to be the one in a thousand babies who get this diagnosis?

We were admitted right away, to the children’s hospital that would become home for the next 3 days. They explained that the operation would not take place until morning, but they needed to keep him overnight on an IV drip to keep him hydrated, as the most dangerous parts of pyloric stenosis is dehydration. Several nurses were needed to place the IV in his tiny foot. I had to leave the room. I would have rather been pacing the halls of a children’s hospital with tears streaming down my face than see my baby get poked and prodded. I felt an enormous amount of guilt about this, but my husband stayed with our baby, holding his tiny hand while they placed the IV. The compassionate nurse signaled for me that it was safe to come back in.IMG_3029

We were not allowed to feed him until after the surgery, which was nearly 30 hours after first being admitted. Listening to your newborn baby cry his “hungry cry” and not be able to feed him, is a torture like I had never experienced. My body was so tense that I was physically sore for days after. My breastfeeding journey had ended about 2 weeks prior, and yet by the time we left the hospital, I had mastitis (a painful, clogged, infected milk duct) from my body physically trying to respond to my baby’s cry.

The hours spent in pre-op, rocking my infant son as he wailed, IV lines and EKG cords dangling from his foot, were the worst hours of my entire life. As we waited for him to be taken back to surgery, in the pre-op room with other parents and their sick kids, I looked around with blurry eyes. My eyes met the gaze of other moms, eyes filled with the same dread and worry, waiting for their turn to follow their kids out of the pre-op room, just to take their detour to the purgatory of the surgical waiting area.

When the surgeon came to take our son back for surgery, I was filled with dread—a dread that was almost tangible. My husband and I took our own personal journey to the waiting area. We were ready for this mess to be behind us, and to be reunited with our baby who would now hopefully be able to keep his feeds down.

A long hour and a half later, the surgeon came and told us our baby did wonderfully, and we’d be able to see him in recovery soon. When we finally got to see him, all bandaged up, monitors beeping, I exhaled for the what seemed like the first time in days. After some recovery time, and plenty of worry, our baby was going to be okay. Being in a children’s hospital has a way of making your issues—no matter how great—seem small. Looking around at the other recovering children and their worried families made it very apparent we were lucky. Our baby was going to come home with us in a few days, and some of these kids had a much longer journey ahead of them.

When we got home, there were a few more weeks of vomiting episodes. This was normal, but that didn’t make it easy. I had hoped the surgery would have been a quick fix, but it wasn’t. Every time he vomited or spit up from that point forward, my entire body would tense up and I’d be thrown into a full-blown hysterics. I honestly think I had a mild case of PTSD (self-diagnosed obviously). But as weeks went by, and he adjusted to his new milk-free formula and Zantac prescription to manage his reflux, things got better. It just took time and a lot of trial and error.

To all the mamas out there going through a rough patch and possibly a sick baby, I feel for you. It’s the worst feeling in the world. But always trust your gut and know that doctors and nurses are there to help, and they are truly miracle workers.