Our Pyloric Stenosis Story

The last month has been pretty insane, I’d like to share my story here in case it helps anyone else down the road.

My baby boy was born February 24, 2015 . He is 7 weeks old today. The first month at home everything was going pretty well. I was having a few issues adjusting to being a first time mom, of course. Being tired due to the broken sleep schedule, while trying to keep on top of the housework with the baby under one arm.

Within the first few weeks my baby started to spit up a little. He’d spit up sometimes when I burped him, or when I was putting a new outfit on him, and sometimes when I put him down on his back to change his diaper.  It didn’t seem to bother him at all though, he’s just spit up and go about his business.

He was also eating pretty ravenously. He’d feed on one side for 25 minutes then move to the other. I was pretty sore for the first few weeks so I’d often shift him back and forth between breasts.

We took him in for his wellness check at 3 weeks and found that he’d gone from 7 lbs 6 oz at birth to 9 lbs 6 oz. A whole 2 lbs gained in 3 weeks.  His pediatrician called him a  ‘little porker’ and referred to my breast milk as ‘rocket fuel’ – everything seemed to be going great.

In the fourth week (around March 21st), I noticed something started to change, the little bit of frequent spit up we’d been experiencing seemed to escalate so that it was every time I burped him.  Then every 3rd feed or so he’d have a full on vomit, where it seemed that he was throwing up the entire contents of his stomach, which appeared to be several ounces (or seemed to me, 3 whole feeds).

I did some research online about baby vomit and found there can be a lot of causes, reflux, virus, or a condition called pyloric stenosis,  where the opening between the stomach and the lower intestine becomes enlarged, preventing food from passing through. This caught my attention because the side effects were forceful / projectile vomiting, ravenous eating after vomiting, it was most common in first born sons (which he was), and usually presented itself between 4-6 weeks.

Hoping it was just a bug I toughed it out for a few days.  Watching your baby vomit forcefully is a pretty harrowing experience, not to mention a laundry nightmare. I was changing both of our outfits several times a day as there was really no way to determine when he was going to vomit. Sometimes it was while eating (the vomit bra), sometimes it was right after eating (the vomit lap), sometimes it was an hour or so afterwards.

On March 4th, after a very scary vomit where it came out forcefully through his mouth and nose in an unbelievable volume … I decided to take him into children emergency. They examined him and told me I had what appeared to be a perfectly healthy baby. They told me that its normal for some babies to spit up / vomit and that as long as he kept gaining weight it was in the realm of normal. I tried to express how much vomit was coming up, but they didn’t seem to believe me. They asked about its forcefulness and explained that pyloric babies will shoot vomit 1-2 feet with every feed. They told me to contact his pediatrician by Wednesday if I felt it was getting worse.

Things continued on at about the same pace through the week.  I was doing all the things that the doctors told me, taking him off early, burping him multiple times a feed, and keeping him upright for 30 minutes after a feed. He was mostly okay but still had a large vomit every 3rd feed or so.

Wanting to explore every possible option I called breastfeeding hotline on the Wednesday to ask about lactose overload, if possibly the way I was feeding him (shifting him back and forth between breasts) could be causing him to reject it. They went through a fairly general breastfeeding spiel and referred me to call for a lactation consultation, and encouraged me to visit the pediatrician.  I didn’t feel at that point that his condition was any worse, but made an appointment for the next morning in any case. They also asked if they could forward my call to the Public Health Nurse (aka Home Visitor) and I said sure.

The visit to the pediatrician on Thursday was basically a rehash of what I’d been through at the emergency room. He appeared to be a healthy baby boy. When we weighed him, it appeared he had gained 6 ounces from our last pediatrician appointment and was at 10 lbs 1 oz. My doctor assured me that “sick babies don’t gain weight!”  He said he didn’t doubt the condition might be possible, but “if we gave an ultrasound to every baby that vomited..” in a nutshell, he wasn’t sick enough. He sent me on my way with the same instructions as the emergency doctor, burp him, keep him upright, keep an eye on his weight.

On Friday, the public health nurse called me as a follow up to my hotline call, and I gave her a shakedown of the situation as I saw it, she offered to refer me to another nurse to follow up on Monday and I accepted.

I was having a hard time trying to communicate what was happening to family and friends who were trying to help  feel better me by suggesting that he may just be a ‘pukey’ baby or a ‘happy spitter’.  I tried really hard to believe that, but something was instinctual was telling me that wasn’t the case.

Over the weekend things seemed to accelerate a bit, he easily could have vomited every feed, the only thing that kept it down for any length of time was my efforts, pulling him off the breast, and burping him multiple times and then keeping him upright while sleeping. Even in this case, he would slowly start to posit out the feed onto a blanket while he slept – and again every 3rd feed he would vomit his current feed and the remains of the previous feeds.

His diapers were also considerably lighter, I knew he was producing some urine as I was using the Pampers swaddlers with the indicator line, but in hindsight there was little urine or feces being produced over the weekend. I was a new mom though and babies change all the time so I wasn’t sure exactly what normal was supposed to be.

All of this was mostly manageable during the day when I was awake and aware of my surroundings, but at night I was exhausted, I’d miss his vomiting cues and both of us would end up covered head to toe. By morning I’d be sitting naked in a chair covered in towels soaked in milk vomit with my baby in a diaper since putting a new sleeper on him was nearly impossible and I was out of clean PJs.

My husband, who had spent the weekend cleaning up after us and doing laundry was finally beginning the understand the severity of what was happening – but there was still resistance to my gut feeling that it was Pyloric Stenosis since his symptoms weren’t all “textbook”. How sick was too sick? Would I be able to tell when he was sick enough that people would take this seriously?

By Sunday night, I was crying intermittently, another night of sleeping naked upright in a chair, repeatedly feeding my ravenous baby between vomits.  I really felt at that point I was barely keeping him afloat hydration-wise as it seemed to me he wasn’t keeping anything down.

The public health nurse phoned on Monday but couldn’t come for a visit until Tuesday. I was happy for her to come because I was hoping that she would be able to watch him feed and maybe advocate for me with my pediatrician. Another 24 hours was a long wait though, and my anxiety on Monday night had turned to despair. I was crying almost non-stop, starting to believe that my visit with the nurse would go the same way as my two previous doctor visits, I didn’t understand why no one would help me. Was I insane?

I was terrified to put my baby down, as I’d seen him vomit into the air while sleeping on his back. When he finally went to sleep I slunk into bed and laid him on his side on a soaker mat. When I heard him vomit in the night, I cleaned the mat with a fresh receiving blanket and went back to get what sleep I could. We slept a solid 4 hours, which was good for me but made me nervous for him. I tried to wake him up to feed but he kept going back to sleep. Another 2 hours passed and I finally woke him up with a diaper change and a bath – he ate a bit and went back to sleep.

I  was somewhat composed when the public health nurse arrived.  I gave her a rundown of what was happening, she agreed to help me monitor him over the next few days. She weighed him with her scale and found he was 9 lbs 1 oz. this was down  from my last check in with the pediatrician and 5oz less than my 3 week health check – he was definitely losing weight. She couldn’t take my word for it though and said she’d call my pediatrician to confirm and then check his weight again in two days.

She also showed me the relaxed breastfeeding position, in the event it was heavy flow or forceful let down causing the issues. I was very relived to have professional eyes on him. I left him on the breast as we were chatting and joked, “Sorry you didn’t get to see him vomit.” And on cue, he vomited while on the breast, resulting in a fan spray of vomit all over me and the baby. The look on her face was clearly alarm.  She set me up with a log to track each of his feeds and subsequent vomits so that I had an accurate history to provide the doctor.

She called us within half an hour of leaving to confirm that the pediatricians’ office confirmed his weight from earlier in the week and that she’d made an appointment for us with him first thing the next morning. I was relieved, finally someone advocating for us.

And hour or so later I went to change the baby and found he’d had diarrhea … a runny diaper full of a weird orange color poop. At his next change his diaper was dry, except for  nickel sized red mark (uric crystals which I knew was a sign of dehydration).

I wasn’t sure how quickly this kind of thing escalated so called the nurses office and pediatrician to see if he could wait or if I should go back to emergency.  He asked if he was lethargic, and based on the trouble waking him in the morning and how sleepy he’d been all day I decided he was – and took him in.

So we were back at the Children’s Hospital. I provided the doc with as much info as I could including the weight loss. This time they opted to do a blood test … which showed clearly that he was dehydrated. They started him on an IV and asked if we gave him a soother… I knew at that point they suspected the pyloric stenosis because I had read during my research on the condition that he could not eat until after the corrective surgery.

The on-call pediatrician came in and confirmed our suspicions,  they admitted us to Childrens Hospital and scheduled an ultra sound for the morning.

Meanwhile they put a tube in his nose that drained any contents he had left in his stomach and kept him on IV fluids. They explained to us that his levels had to come back up in order to be ready for surgery. He did pretty well considering, his disposition is so amazing.

I meanwhile hadn’t fed him in many hours. My breasts were killing me. The nurses lent me an industrial breast pump which I tried to use on a 3 hour interval. . Imitating a regular feeding schedule.

We took him down for the ultrasound around 7 am.. and we’re waiting for the results when a nurse arrived to prep him for surgery. I was a bit alarmed because no one had confirmed the diagnosis… but I guess it happened behind the scenes and there was an opening in the ER so they were ready to go.

The procedure took about an hour, he was a little slow to wake up from the anesthesia though so it was probably 2 hours before he was released back to his room.

We had to do measured feeds, every 3 hours, to control his intake. If he could keep down 3 feeds without vomiting we would be clear to go the next morning. Sadly on his 3rd feed there was vomit. We started over again. This time I tried breastfeeding a little, and sadly on the 3rd feed he vomited.

I opted to spend another night in the hospital with him. I wanted to be sure he was doing okay before we left. I left him in the care of the nurses for his night feedings by bottle so I could get some sleep.

They handed him back to me at 7 am pronouncing he’d made it through the night without vomiting.  And within 5 minutes of being in my arms  – he did it again. My heart sank.

We started over again, with measured bottle feeding, and this time he made it. We went home at 8 PM on the Friday after spending 3+ days at the hospital. He made it through the night and through most of the next day without a vomit.

He did spit up eventually, but it was a normal baby spitup and came because I’d opted to change him shortly after feeding.

Happy to have my happy (reasonably vomit free) baby back. We’re working now on getting him back on breastfeeding. We’re doing it but am experiencing some problems with his latch making it painful for me.. but I’ve booked in with a lactation consultant to work on that this week.

My advice to any mom who might suspect pyloric stenosis.

– Call your public health nurse and get a case file opened to help you monitor your child’s health and weight.

– Keep a log of your feeding and resulting vomiting to present to the physician.

– Read up on the signs of dehydration and monitor your baby for them.

– Don’t Despair you are doing everything you can in your power to help your baby.

 

 

 

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