Our Experience With Pyloric Stenosis

I am not a doctor this is just our experience. If you suspect a problem please see your doctor. 

“You must head immediately to the MUSC Children’s Emergency Room.”

There is nothing like that statement to completely flip your emotions out of control. It feels like you have been sucked down a tunnel and you can see the doctor speaking but you feel like hear what is her or she is saying because you are down in a black tunnel and are getting scared.

Let’s back up to how this all began.

I have twin boys. They are identical and are our oldest kids. My pregnancy was smooth and I had absolutely no issues. This could be due to the fact that I quit my job 6 months into my pregnancy and basically put myself on couch rest. 😉 They induced me at 38 weeks and they were perfect. Well, for at least the first 4 weeks.

Between weeks 3 and 4 they started throwing up about 15 minutes after being fed. Sometimes a little bit and sometimes a lot. My husband and I thought they just weren’t being burped properly. We would sit after their feeding and try burping them for an hour or more and they would still throw up a lot. There is a great picture of my husband just when he walked in from work in his work clothes and he basically picked up one of our boys and they instantly threw up all over him. I just laughed because I was being thrown up on all day long.

I took them to the pediatrician for vomiting and was given infant reflux medicine. It did not help.

It started to progress to projectile vomiting about week 5. I am talking that when you would be burping them after a feeding they would throw up and it would come flying out. If they were facing outwards it would shoot out onto the floor. Sometimes, if you were lucky, it wouldn’t even get on your or the babies clothes.

We were very lucky that we had twins. When it started getting very bad and the projectile vomiting was happening after every single feeding for one of the boys over the course of the weekend we could tell that he had lost weight when we laid them next to each other. It was very obvious since they had been the same size. I took them to our pediatrician and he immediately picked up that it was Pyloric Stenosis and said those words. “Head to the Emergency Room straight from here, I’ll call ahead and tell them you are coming”.

How to know if it is Pyloric Stenosis (via Mayo Clinic)

1. Vomiting after feeding/Projectile Vomiting – we had a lot of this going on
2. Persistent Hunger – they were hungry all the time
3. Stomach Contractions – I didn’t notice this
4. Dehydration – I couldn’t tell
5. Change in bowel movement – I didn’t even notice this
6. Weight problems – This is what finally alerted me that there was a problem.

I am also adding a #7 because it is also well-known that Pyloric Stenosis happens more often in 1st born males. It can happen to others too but it is more likely in first-born males for some reason so add that to your list Mayo Clinic. 🙂

All of these symptoms appear in weeks 3 – 5 of an infant’s life and peak at week 6. No one older than 3 months has it so if your baby is over 12 weeks it is most likely not pyloric stenosis. I need to say again to see your doctor if you are worried because I definitely do not have a medical degree.

Now, the good news. To find out for sure if a baby has Pyloric Stenosis takes an ultrasound. I was happy it wasn’t a blood test or something that would hurt them. Just a quick ultrasound on each of my boys stomachs confirmed that they both had it.

Pyloric Stenosis is when the stomach muscle is enlarged and blocks food from passing from the stomach into the intestines. The surgery consists of cutting the muscle to make a channel for food to pass.

Next we were admitted to the hospital and waited for a room. The next 24 hours were the worst ever!! We were admitted to the hospital after waiting for all the ultrasound results about 4:00pm. We had not fed the boys since 10:00 am because if they were going to have surgery that day they couldn’t eat. Then we got the news that they couldn’t fit us into surgery until the next morning. And we couldn’t feed our boys all night.  That meant 24 hours of not feeding our boys.  Those boys cried and cried for 24 hours. It was awful. We would dip their pacifiers in some sugar water some nurses gave us and that helped a little bit. Sometimes a different nurse would come in and say they weren’t allowed sugar water and took all our little cups. Then the next nurse would come in and said we could use them so from then on we got smart and took a bunch of sugar water (they have a special package of it in pediatric units) and started hiding them so that other nurses wouldn’t know that we had them. 🙂 We were in desperate shape with crying 6 week old twin babies for 24 hours. It was not fun.

After that night our boys never took a pacifier again.

No one knows what causes Pyloric Stenosis and the fact that we had identical twins that both had it made us the room to go to for the medical students at MUSC. All evening we had groups of students and doctors coming into the room talking about our issue. The fact that they were identical twins and both had it and that maybe this would prove that it is a genetic issue. One of them even said they would bet a paper would be written about the boys. Matt and I didn’t really care about all of this. We were both leaning over separate cribs dealing with crying babies.

Surgery for Pyloric Stenosis

Early the next morning the surgeons assistant or PA came running up to our rooms and said, “Someone is late for their surgery we have the operating room open now, let’s go!!” The nurses wanted her to wait for the people to wheel our boys in the beds down the hall.  I guess that’s the official/proper way to go. Our PA told the nurses no, we have no time we are leaving now and she carried one and I carried the other and we basically ran down the halls to get to the OR first. 🙂 I was so glad that someone else had run into traffic or something so we were able to get the earlier time slot.

The rush made it a little easier to not be completely freaked out that our boys were having surgery. I swear that it seemed to take less than 15 mins and they were in recovery and I was able to go see them.

Surgery for Pyloric Stenosis is done laporascopically. My boys are 8 now and I only see the tiny spots because I know where to look but they wouldn’t even be able to pick out the spots if I didn’t show them.

I found a short 10 second video I had taken of one of the boys when we brought them home that shows their tiny incisions. spitting-up-after-bath

Recovery for Pyloric Stenosis

The completely amazing thing to me about the surgery is that once they cut the muscle it is completely fixed! There is no recovery or special feeding issues afterwards at all. We just fed them like normal and they were all fixed. That was very strange to me that after a traumatic 24 hours we walked out of the hospital with nothing special to do. Totally crazy. There was no medicine to give them or anything. We went home and just went about our lives again like nothing had happened.

Really Pyloric Stenosis is a crazy thing to deal with as it is a few weeks of horrible throwing up but it is fixed with a quick surgery and there are no problems afterwards.

If you are facing this diagnosis I hope this helps. Please feel free to email me or comment with any other questions if you need some support.

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