Baby · Baby Feeding

Our Experience with Pyloric Stenosis

Some of this will be repeated from other blog posts, but I want to write a post dedicated to Sam’s pyloric stenosis in case anyone else out there finds it helpful. Ultimately, it was reading other people’s real experiences that convinced me that our baby Sam might have it, in spite of his not fitting the typical clinical picture, according to the providers we saw.

I think Friday, July 1 was the first day that Sam had large vomiting episodes. He was three and a half weeks old. I had just started feeling somewhat relaxed and happy in my new life with a toddler and a baby, as breastfeeding got easier, my hormones settled down, and the intense anxiety of the first couple of weeks wore off. Then, after feeding him that day, he threw up all over me. He was convulsing, with curdled breastmilk gushing out of his mouth until my clothes were soaked. I thought, well, I guess this time we’re going to have a baby who spits up! But that sure was a lot! I think it happened once more that day and continued to happen two to three times a day through the weekend. We were doing multiple loads of laundry every day and were pretty much housebound.

On Monday night, the Fourth of July, we called our clinic and talked to the doctor on call. We described the vomiting as “projectile” because it was forceful and traveled a few inches from his mouth, and we said it was at least two to three ounces. My husband A. had read about pyloric stenosis and was concerned that he might have it. The doctor said that it sounded like normal baby vomiting, it probably wasn’t as much volume as we thought it was, and that babies with pyloric stenosis have vomit that projects six feet across the room. She said that if his vomiting started shooting that far out of his mouth, or if he became lethargic or otherwise seemed unwell, we should let them know, and she suggested that I try eliminating some foods from my diet to see if that helped, and offered that we could bring him to the clinic for a weight check. We also told her that his pooping had gone from a few times a day to once every three to four days over the last week or so, but she said that was typical for breastfed babies.

So, the next day I took him in and saw a nurse for a weight check. He hadn’t quite gained an ounce a day since his 2-week visit, but he was close enough (13 ounces in 15 days) that the nurse said he was probably fine. She told me that one of her relatives had a baby with reflux who just had to wear a bib every day. I thought, there’s no way a bib would cut it! But I didn’t press the issue because I didn’t want to be disagreeable. I thought that I must just not know what normal baby spit up looks like, and I went home and tried putting a bib on him, then realized that was ridiculous and took it off. The next time he threw up that day, I took these photos:

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The vomiting continued, gushing out of his mouth and nose two to three times a day! As I wrote in a previous post, I was frequently changing all of my clothes and having to wash and change the sheets on our bed pretty much daily. I became afraid to leave the house with him! In between vomiting episodes, he just wanted to eat and eat. He used to be a quiet, content little guy, but now he seemed to be always crying, sucking his fists, and banging his head on my chest. If I pumped, he’d eat five ounces from bottles and still want more. Then he’d throw it all up and start acting hungry again! And he wasn’t sleeping. On a typical day for us, I fed him 16 times (for 10-30 minutes each time) and cleaned up three giant vomits, and he only slept about 12 hours, including the nighttime sleep. He continued to go several days at a time without pooping.

In one article I read about infant vomiting, the author advised that you should pour a couple of tablespoons (one ounce) of water on a flat surface and you would see that it looked like a lot, but it wasn’t really that much. So I did that, but it looked like nothing compared to what came out of Sam! I started to think he was losing at least four to five ounces when he threw up, but that seemed inconceivable.

Friends and family offered advice, and I read about vomiting, reflux, and oversupply of milk on the internet. I tried to feed him on one side only for two hours at a time, thinking that he was getting too much foremilk and not enough fatty hindmilk, so he thought he was still hungry and got too full of liquid. I wondered if I was burping him too much or not enough, or somehow overfeeding him even though he constantly seemed hungry, or if something was wrong with my milk. A. suggested that we try feeding him formula, but I wasn’t ready to take that step. I thought that maybe I was being lazy, just letting him nurse every time he was upset, because I was a bad mother and didn’t know any other way to soothe him, so he was eating too much and getting overfull and then throwing it all up. I tried to give him a pacifier more often and would get angry with him when he spit it out and acted hungry, and nothing I did seemed to help, besides feeding him. I tried to keep him upright during and after feedings, but usually when he threw up it was when we were holding him upright (which also made it hard to tell what the projectile distance was, since the vomit usually hit our bodies).

Eight days after the weight check at the clinic, I took him to a breastfeeding group and weighed him. I don’t remember what his weight was, but I think it was only another two or three ounces since the weight check. He threw up while we were there and it wasn’t a very big one, but another mom with an older baby saw it happen and said, “That is a lot!” After using up the cloths I had brought, I had to use a blanket another mom handed me to finish cleaning it up. The lactation consultant didn’t see it happen and didn’t seem concerned. She told me not to worry about foremilk/hindmilk or burping, said he should do lots of tummy time, and suggested I start taking probiotics. On her recommendation, I also arranged for him to have craniosacral therapy (but we never made it to that appointment because he was in the hospital).

Over the next weekend, the vomiting seemed to be happening more frequently, up to four times a day, and A. and I were feeling extremely frustrated with being housebound and with the amount of laundry we were doing. I hated that I felt like I couldn’t feed the baby when he was hungry, because he would throw it all up. We thought his vomit projected a foot or two on a couple of occasions.  We also poured four ounces of water on a towel and both agreed that it looked like nothing compared to the amount of vomit on our clothes!

I started to read more about pyloric stenosis and found this article and this comment thread with several people saying that their babies didn’t fit the typical picture so they were told they just had reflux or that it was normal spitting up, but it turned out they actually had pyloric stenosis, and once they got surgery they were fine! Many of the babies sounded just like Sam: not vomiting with every feeding but only a few times a day, still having wet diapers, not having vomit that projected several feet. There were so many stories of people having to keep going back, insisting something was wrong, until an ultrasound was finally done. So many parents saying, “Trust your instincts!” So I started to think it was possible that he actually had this very serious, but rare, cause of infant vomiting.

I still didn’t want to be pests (what is wrong with me?!?), but fortunately A. sent a message to Sam’s doctor and included the photos that I’ve posted above, and he asked to have him evaluated for pyloric stenosis.

On Monday morning, the doctor wrote back and said to bring him in that day, and a nurse called to arrange a time. Sam was six weeks old that day. That evening, five days after the breastfeeding group, two weeks after our first call to the doctor, and 18 days after the vomiting started, we saw a nurse practitioner in the clinic (because the doctor was working in the hospital that week). Sam weighed ten pounds and almost 2 ounces, so he had gained two to three ounces in the past five days, and only five ounces in the 13 days since the nurse visit. It was also only 18 ounces in four weeks – at the goal of an ounce a day, he would have gained 28 ounces in that time. (At exactly two weeks at a lactation appointment, he had hit his birth weight of nine pounds, right on schedule at that time.)

Just before the nurse practitioner walked in the room, he had a large vomit on the exam table, so she was able to see it. But she said it was definitely bile, and that with pyloric stenosis it’s nonbilious vomiting, so seeing it actually made her less inclined to think it was pyloric stenosis. (I was confused, because as a surgical oncology nurse I’ve seen a lot of bile, and it’s almost always bright green. But I still thought, well, I guess I don’t really know what bile looks like, that’s embarrassing…) She palpated his stomach and didn’t feel the “olive” that can indicate pyloric stenosis. She also thought that because it wasn’t projecting very far, it didn’t happen after every feeding, he was still gaining weight (she said that maybe his weight gain was slow because he was so big at birth), still had wet diapers, was still pooping, and seemed vigorous and well, that it was probably reflux. But she said she was still going to order an ultrasound to be sure, and for that, I’m so grateful! I was ready to say, silly us, you’re right, it’s nothing! She also wanted us to bring him in two days later for a weight check, and said she hoped the ultrasound would be done by then, but that if he got worse in the meantime, we should take him right to the emergency room, where they could do the ultrasound right away. She said that we could have lab work done to check his electrolytes, but he looked so healthy that she hated to have him poked when he was probably fine, so I convinced A. that she was right and we should skip the labs. She showed us the diagnostic criteria and we went over it all together. I felt somewhat ashamed, as though as a nurse I should have ruled it out myself and not bothered anyone.

Here is one website the talks about the signs and symptoms of pyloric stenosis. Sam had the forceful vomiting, but not as forceful or as frequent as they would have expected. He also had the small stools, but it had been so long since I’d seen newborn poop that I wasn’t sure about that, and I’d read and been told that his poops needed to be at least the size of a quarter, and most of them were. He was also irritable, and he was hungry after feedings. His weight gain was slow but he hadn’t lost weight yet. He was also full-term, male, and Caucasian, but he wasn’t a first-born and there was no family history.

On Tuesday, the morning after we saw the nurse practitioner, I called and scheduled the ultrasound for the first slot they had available, which was Thursday afternoon.

Here are some pictures of Sam that day – now I realize how tired and sick he looked!

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On Wednesday morning (the next day), I took him to see the nurse and he had lost an ounce and a half since Monday night, so the nurse talked to the nurse practitioner and also a doctor, I think, and called the ultrasound department and had his test moved up to that afternoon. They also told me to stop eating dairy and gassy foods and gave me information about reflux. When we got home, the nurse practitioner called me and said that it was her day off, but she was going to have someone from the ultrasound department call her after the test and give her a “wet read” before the official one, so that she could prescribe reflux medication or whatever was needed right away.

A couple hours later, I took Sam to the breastfeeding group and talked again about things I might be doing wrong, and I weighed him there and got an even lower number. Then we went out to lunch with a friend and he was just sleeping, seeming more sleepy than normal. I was worried about not being allowed to feed him for two hours before the ultrasound, because normally he’d want to eat more frequently and I thought he would be screaming, but he just slept, and I was feeling more and more that something might really be wrong.

Here he is in his car seat that day:

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At the ultrasound, the tech wasn’t allowed to tell me the results, but he did point out the stomach and the pylorus to me on the images and said something about needing to wait ten minutes and recheck because sometimes there are spasms going on. That made me think that it must have looked like something was wrong, and they needed to make sure it wasn’t just a spasm. After he rechecked, he made sure I was going to stay in the waiting area while they called the nurse practitioner. So I sat out there and nursed Sam for a while, then they called me back to talk to the nurse practitioner on their phone. At that point, I wasn’t too surprised when she said that she was very surprised, but he did have pyloric stenosis! Then she said that we were to walk straight down to the emergency department for lab work and that she would call and let them know we were coming.

Once we were in the ED, I wasn’t allowed to feed him anymore. He was mostly just sleeping (getting lethargic at that point), but occasionally fussy and I had to just give him a pacifier. I thought, if we lived in a time or place when or where surgery wasn’t an option, he would just get more and more lethargic and eventually just die! I would just have to watch him starve to death! And in such a time or place, we probably wouldn’t be too surprised to have one baby not survive. It was heartbreaking to think of him just wasting away, when a simple surgery was going to save his life! We’re so lucky to have great insurance, too, so we could focus on getting him better and having the best people operating on him, and not have to worry about how we would pay for it, or if we could find some less expensive place to have it done.

In the ED they started an IV and drew blood from it for his labs. It took three tries, I think, to get his IV but he was quite calm about it. His labs showed dehydration, so he was hooked up to IV fluids. One of the three or four nurses we saw was the same young guy who took care of us when I took Sam in with his rash! I said, “You again! I’m feeling like a frequent flier! But this time he’s really sick!”

Daddy and big brother Ari met us there:

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We got checked into our room on the pediatric floor and A. and Ari went home. Sam wasn’t allowed to sleep with me the way he was used to, but I slept on the windowsill/bed with him in a bassinet right by me. He was tired and actually slept pretty well. Swaddling, pacifiers, and cuddling (before we went to sleep) helped. I had to leave him for a little while to get food from the cafeteria, but the next day I was able to order trays from the patient menu as a breastfeeding mom.

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Early the next morning, the surgical team (minus the senior attending surgeon) rounded and the primary resident quickly quizzed me, asking when the vomiting started. My answer didn’t fit the picture of sudden, severe projectile vomiting, so he said something like, “But when did it really start? You know what I mean.” I tried to explain that he didn’t fit the usual picture, because I thought it would be good education for all of them, but he just cut me off and started talking about the surgery.

The plan was to go in laparoscopically (without opening him up) and make a small cut in the pylorus to widen the opening. This is called a pyloromyotomy. It would take about 20 minutes. I’ve since watched a couple of videos of the procedure that I found on YouTube!

We waited around all day because they explained that it wasn’t an emergency situation, since he could be kept alive with IV fluids, and he would be an add-on if a spot opened up on the surgery calendar. Late in the afternoon, I was told he would be going soon, so I called A. and he left work and went to get Ari from daycare.

Sam and I were taken to a little room in the pre-op area and left alone for a minute, with me holding him, and that’s when I started to cry. Because I work at the hospital, I’d been almost in a professional mode since we got there, interacting with a lot of people I knew. I felt pretty calm, maybe because it was so clear that surgery was necessary and I knew we were in the right place for it, so there weren’t any decisions to be made (although, when the full surgical team had rounded, A. had participated by speakerphone and had insisted that the attending be the one “holding the knife”). We had also been through hospitalization, anesthesia, and surgery with Ari for his eyes. But suddenly we were alone and I was about to hand my baby off to be made unconscious and cut into, for a procedure that always carries some risk, and I was exhausted, and I just burst into tears. But then the anesthesiologists came in to introduce themselves and A. and Ari showed up, and Ari wanted to be held so I handed Sam over to someone.

The first attending anesthesiologist who had introduced herself came back to say that since it was the end of the day, she was going home and someone else was taking over. I was somewhat relieved, thinking it was probably someone fresh at the beginning of their shift. After I met her, I was also thinking about how nice it was that so many women (possibly mothers) were involved. The attending surgeon was a woman, the attending anesthesiologist was a woman who I think had mentioned her own kids, and the anesthesiology resident was a woman who I think was pregnant. They all seemed genuinely concerned about Sam and I trusted them to take good care of him.

We were told that the hardest part of the procedure, for Sam, was that they would have to put a tube through his mouth into his stomach to suction out the stomach contents, and they would have to do that while he was awake, to minimize the risk of anything getting into his lungs. After that, they would sedate him with IV medications, then put in a breathing tube. None of the drugs he was to be given were opioids (narcotics), but they were other strong sedatives.

They gave us a pager so they could notify us when the procedure was ending, and we entertained Ari in the waiting room, watching the pager and a screen on the wall that said where the patients were. Finally, we were paged that the surgeon was coming out to talk to us, and she said that everything went well! Then someone from the recovery area came and got us, and we got to go see him. I was allowed to breastfeed him right away, since we didn’t have any bottles or my pump down there, but they had to page the doctor first and then we had to weigh him before and after to see how much he ate.

Ari was falling apart, so A. took him home. After I fed Sam in the recovery area, he and I were taken back to his room and we started a long night of weighing and feeding and weighing again. I was so tired that I didn’t trust myself to hold him, so I actually started calling for the nurse to come in when he needed to eat, so that she could weigh him and hand him to me. Several hours went by without any urine output, so they had to catheterize him once, but then he started peeing on his own.

The weighing and feeding continued into the morning. I wrote the times and weights on the white board on the wall. They wanted him to have two good feedings without vomiting, I think. He kept wanting to nurse but would only take in tiny amounts of milk. He wasn’t passing gas or pooping, either. But finally, everyone was satisfied and we were cleared to go home!

Sam had tiny incisions that were covered with surgical glue that came off on its own over the next few weeks (actually it mostly came off, then I peeled off what was left). Now, about seven and a half weeks after the surgery, you can hardly see the two little incisions! Below is a picture of his belly the day after the surgery. In addition to the two incisions, there are three little spots where they had used sutures to hold his liver out of the way.

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We gave him liquid acetaminophen (Tylenol) by mouth for a few days. For the first couple of days, he did start to get fussy when a dose was due but otherwise didn’t seem to be in pain. We held off on tummy time for a few days.

He must have felt better than before the surgery, because he smiled at me for the first time when he woke up the next morning!

The day we went home (the day after the surgery) was Friday, and A. was at work so I packed up all our stuff, plus Sam, in a little wagon and wheeled it all out to the car! Then we went straight to pick up Ari from daycare, then, finally, home!

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The next day, Saturday, we were so happy! I could feed him and it all stayed down! We didn’t have giant piles of laundry to wash! We could hold him without being thrown up on! We could leave the house! We went out for breakfast that weekend and he just slept peacefully in his carrier. I had my perfect, content baby back!! And I was so excited that he was going to start growing that I put away all the newborn clothes. Here we are that first morning at home:

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We had a little hiccup Sunday night because he had a good-sized vomit and was very fussy and hadn’t pooped. I took him into the clinic the next day and he had lost a little weight, but that wasn’t surprising since he’d been puffed up with fluids when we left the hospital. They thought he looked good, and shortly after I brought him back home he started pooping and he hasn’t vomited again since. Now he poops about three times a day, as opposed to the once or twice a week he was pooping before the surgery – and the amounts are a lot more now, too. And he occasionally has a small spit-up like a normal baby!

He was still eating frequently when we went home, and that actually continued for several weeks, but now he has something to show for it! He started gaining weight quickly. He was above the 90th percentile at nine pounds when he was born, had dropped to about the 20th percentile at just under ten pounds before his surgery, and was back up to about the 40th percentile at about twelve and a half pounds less than three weeks after the surgery. It’s now been a few weeks since he was weighed, but he looks and feels like a chub now, with rolls!

Since we’ve been telling people he had the surgery, we’ve heard about a couple of other people who had it more than three decades ago and “almost died” because it took so long for their doctors to figure out what was going on. Ari’s eye doctor chuckled and said that when he was a student or an intern or something, he won a dollar from some famous surgeon when he (Ari’s doctor) correctly bet that an infant had pyloric stenosis, and the surgeon hadn’t believed it at first. It just goes to show that diagnostic medicine is not always an exact science and doctors can be wrong! Parents, listen to your instincts and keep pushing (as politely as possible, of course) when you know something is wrong. And if you suspect your baby has pyloric stenosis, ask for an ultrasound! It’s so easy to do.

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