How many of you have heard about Pyloric Stenosis? I’m guessing not many.  Maybe a few of you have if you know someone who has had it, or if you watched Emmerdale, who did a big storyline on it, last year. Here is my story about my son.

This is Kayla’s personal experience with Pyloric Stenosis and her son.

My son was 3 weeks old when our pyloric stenosis journey started and 4 weeks old when he had surgery.  My husband, baby, and I went out to grab a quick bite to eat.  Life with a newborn was starting to feel normal.  We were getting into a routine of sorts and figuring him out more.  While out to eat on a Thursday night my baby spits up.  I thought it was weird because he had never spit up before.  I didn’t think too much of it because that’s what babies do.

The next night we went grocery shopping and at the grocery store, he started spitting up again.  This time it was multiple times.  At this point, I didn’t think too much of it still.  (Looking back my mommy instincts were telling me something was wrong.)  I called my mom that night to chat and I mentioned that he had been spitting up.  My mom suggested I call the pediatrician.  I didn’t really want to do that because I was afraid he would call me a crazy first-time mom and tell me to eliminate dairy in my diet.  I really didn’t feel dairy was affecting him.

Saturday he pretty much slept all day.  I had to wake him to nurse.  I didn’t think much of that either because that is what newborns do. (Although again my mommy instincts told me something wasn’t right.)  Saturday night is when I really started to worry.  I went to feed him at a family party and he projectile vomited right after.  I realized he hadn’t had any wet or poopy diapers.  My mother in law told me I was crazy and that babies spit up.  Late Saturday night into Sunday morning he projectile vomited more and more.  I woke my husband up because I needed help cleaning up all the vomit.  All morning he kept vomiting and still had no poopy or wet diapers.

Finally, we took him to the insta-care doctor Sunday afternoon where they told us they couldn’t do anything for a baby that little and we should just head to the hospital.   We decided to wait and monitor him, and give him some Pedialyte for hydration.  Sunday afternoon to Monday afternoon he didn’t throw up and had a poopy diaper.  During that time I thought he must have had a stomach bug and he was all better.  When he threw up again Monday afternoon I immediately called the pediatrician. Unfortunately, they couldn’t see him until Tuesday morning.

Tuesday morning we took our baby to the doctors.  I still had fears of the doctor calling me crazy and then telling me I need to change my diet.  We get to the doctors and the nurse weighs him.  He was back down to what he was at 10 days old.  I was really scared at how much weight he had lost in just a few days.  The doctor came in and asked some questions.  Immediately he told us he thought he had pyloric stenosis and we need to go to the children’s hospital for an ultra sound and x-ray.  If the tests were positive he would need surgery.  The doctor left the room to call the hospital and my husband and began googling pyloric stenosis.  What we thought would be a simple fix turned into something big and scary.

We left the doctors and went to the children’s hospital.  At the hospital, they first did an ultrasound and luckily it confirmed pyloric stenosis so no x-ray was needed.  The next thing we know my baby is getting admitted to the hospital.  We got taken to our room where they hooked him up to monitors and got an iv started.  It was 2 pm when we got admitted.  He hadn’t had anything to eat since 11 am.

My baby’s first nurse was so kind and loving.  She was good at making him comfortable and calm.  We still weren’t allowed to feed him in case they did surgery that night.  It was so hard holding my baby, he would look at me with his sad eyes and say why aren’t you feeding me.  My husband did a lot of the holding and comforting so he didn’t have to smell my milk.  I had to pump a lot to keep my supply up.  Throughout the rest of the day and night, he cried a lot.  At 10 pm they came and said they wouldn’t be doing surgery that night.  They had trauma patients come in which pushed his surgery back until morning.  My husband and I took turns sleeping and holding the baby.  We were very tired and exhausted.

The surgery team came in around 9:30 am to tell us they were taking him for surgery and what would be happening.  We followed them down to the surgical area and met the surgeon and anesthesiologist.  They had us kiss our baby and handed him off about 10 am.  We waited in the waiting room.  Our surgeon came out at 10:45 am and told us he was doing well and coming out of anesthesia.  We got to go see him at 11 am.  It was good to see him resting and doing well.  We were not allowed to feed him until 2 pm.

At 2 pm we fed him a bottle of my pumped breastmilk. He went 27 hours without eating. We were only allowed to feed him up to 60 ml and I wasn’t able to breastfeed at first.  He tolerated 40 ml for the next few feeding.  More than 40ml he would spit/throw up.  He also had his first bowel movement since surgery that night.  He continued to do well with 40 ml of milk.  The next afternoon before we went home I was able to breastfeed him for the first time.  I was nervous my 4-week old baby wouldn’t remember how to latch or wouldn’t want to after 48 hours of not breastfeeding.  I was very happy when he latched and ate really well.

We were discharged at 4 pm. So happy to be going home after 3 days in the hospital.  They told us what to watch for and said to make a post-op appointment in about 1 to 2 week.  We thought this would be the last of hospital stay and we could go back to our normal life.

Unfortunately, he was admitted again three days later.  One of his incisions abscessed and looked like a 2 inch by 2-inch worm protruding out of his belly.  The nurses thought he either had an infection or a hernia from surgery.  My baby was so pale and sick.  He almost looked worse than before surgery.  I wasn’t allowed to feed him again in case surgery was needed.   We got an ultrasound done to confirm whether it was a hernia or infection.  The ultrasound confirmed it was an infection and he was put on an antibiotic through his IV.

A little while later a surgeon came and took him away to drain the abscess.  It was hard sending my baby away again.  They put him on a sedation medicine called Nubain.  They brought him back to us and I tried to feed him since he hadn’t eaten for 8 hours. He wouldn’t eat and seemed to be in a lot of pain. He was struggling to breathe and suddenly stopped breathing on me.  My baby turned blue and his eyes rolled to the back of his head.  I was screaming and trying to alert the nurse.  I got him breathing again by patting his back. It was a rough day. My husband and I spent the day praying.  My parents came up to visit and give us a much-needed break.  We went to the cafeteria and got food.

The next day he seemed to be doing much better and his skin colouring looked good again. The culture they took when they opened his abscess came back as MRSA (a staph infection resistant to the antibiotics he was on).  They had to start him on a new antibiotic that wasn’t resistant to MRSA.  We found out we had to stay another day.  On this day he was 2 days over a month old.  My husband and I were talking to him and he gave us his first social smile.  It was so refreshing and just what we needed from our little guy.

The next day they had to cut him open in another spot to put a drainage tube again.  Since he didn’t do well breathing on the Nubain medicine, they had to figure out what to do.  They decided to give him a half dose of Nubain and really monitor him.  When bringing him back he still wasn’t breathing great but not as bad as the first time.  We got to go home that afternoon.  After a total of 6 days in the hospital, we were really ready to go home this time.

My baby healed from surgery and the infection. He has had a total of 4 MRSA infections since surgery.  All of the infections have been in his incisions sites.  We are hoping he doesn’t have anymore.  He is now 4.5 months old and other than his infections he is thriving and meeting all milestones.

As a parent with a pyloric stenosis baby, I would say listen to your instincts.  If you feel something is wrong, go to the doctor.  If you don’t get answers from that doctor go to another.  Keep pushing for answers.  I am so grateful his throwing up episodes before surgery was short. Pyloric stenosis goes undiagnosed many times.  I hope my story will help other parents with babies suffering from pyloric stenosis.

Thank you to Kayla (USA) for providing the story and images.

For more information on Pyloric Stenosis please click here

Blog Title Image: Pixabay