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.

Pregnancy Part 2. Hey There Placenta Previa.

Once I emerged from the dreaded first trimester, I was feeling a whole lot better and whole lot more confident that this was real. The chronic nausea was behind me and onions were no longer something out of a horror film for me. A baby bump had emerged and so had the maternity leggings. Things were really moving along!

My second trimester of pregnancy was mostly uneventful, and for that I am grateful. I still cried all the time, but I would soon learn that the tears would stay with me long after the baby was born. Cooking became a thing of the past pretty much from the beginning of my pregnancy. I used to love to cook but while simultaneously cooking a new human in my oven, it just seemed like an exhausting chore. And although I wasn’t nauseas anymore, raw meat still made me queasy. Also, when I did attempt to cook, I would ruin every meal I attempted, or I’d burn myself! I swear, has this happened to anyone else? Where you just totally lose all cooking ability or the desire to? It was a very odd symptom I didn’t expect.

In your second trimester, you are still only seen by a doctor once a month, unless there are any issues that require you to be seen more often. At my 19-week anatomy scan, they confirmed we were having a boy (we had found out at 13 weeks via NIPT blood screening) but they also found that I had something called placenta previa, just another one of the many terms I would learn over the next 9 months.

Placenta previa is essentially a condition where the placenta (the organ that is connected to the umbilical cord and provides oxygen and nutrients your baby) is too low in the uterus, therefore blocking the cervix, AKA baby’s exit door. A normal placenta rests above the baby, but mine was below him. Placenta previa is somewhat rare yet not totally uncommon. It’s said to effect less than 200,000 pregnancies per year; however my doctor was confident that my placenta would move upward before baby was due for his exit. In an effort to learn more, I spoke to a lot of friends of mine who had given birth before, and found a few of them also had placenta previa and it did in fact correct itself. To me, this was just another example about how being open about things that are going on in your motherhood journey can help make you feel less alone. If placenta previa does not correct itself, it means the baby has to be born via c-section. Which is not the end of the world, but ultimately was not my first choice.

What happens if you’re diagnosed with placenta previa? The answer; not a whole lot. I was put on “pelvic rest” at that doctor’s appointment and was scheduled for another ultrasound a few weeks later to check on the placenta’s progress. What is pelvic rest you ask? Basically, it means you can no longer work out, lift heavy things, have sex, or put any foreign objects in your vagina—ya know, in case you were planning to. The reason for this is because the placenta is so low (how many times can we say placenta? Placenta, placenta, placenta…The limit does not exist) that there is a high risk of bleeding. Bleeding during pregnancy = no bueno.

While I was grateful to not be on full bed rest, it was also discouraging to be given limitations. I was only halfway through my pregnancy and already I was being slapped with a list of can nots in addition to the can nots of coffee, wine, soft cheese, deli sandwiches, the finer things in life, etc. It was about 6 long weeks until I was seen again to check on the status of my placenta. I scheduled that appointment for the same day as my glucose test—the test every pregnant woman dreads that checks for gestational diabetes. You drink a horribly sweet syrupy drink, wait and hour, and then have your blood drawn to check how your body responds to the sugar. If you “fail” this test, you have to do it again, and the second time, you have to wait three hours and get your blood drawn every hour on the hour for those three hours. I do not handle blood well—something I’d have to get over as my pregnancy continued—more on that later. So I did not anticipate handling the glucose test well. I was right, I fainted in the waiting room of the lab and had to lie down on the table adorned with puppy posters and reserved for pediatric patients (see main photo in this post, thanks for the pic, husband!)  As embarrassed as I was, somehow I passed the test.

After the glucose test, and after assuring the nurse I did not need a wheelchair escort, I went into the ultrasound room to check on the placenta. I was confident it would have headed north by then, but my confidence was quickly squashed when they pointed to the screen and told me it had moved slightly, but not enough to be in the clear. The placenta needs to be a minimum of 2 cm from the cervix to no longer be considered a previa, and mine had only moved 1 cm. It was really disappointing, but it was out of my control. We continued to monitor my placenta well into my third trimester. Eventually I was told it is the most stubborn placenta the doctor had ever seen, but it had moved  the 2 cm it needed to (although they had hoped for a lot more) and she felt confident I wouldn’t need a c-section. Since my placenta was still considered “low lying” there was still a risk for bleeding, so I was kept on pelvic rest for the remainder of my pregnancy. Hey, at least I had an excuse not to workout, although my initial pregnancy goal was to stay as fit as possible to help make delivery easier. I was also very worried because I was told there is a higher risk of bleeding during delivery, but because I had planned to birth at a hospital, I would be closely monitored in the event bleeding did happen. *Spoiler* placenta previa ended being the least of my worries during the delivery of my little one, and caused no complications.

On a positive note, placenta previa gets you way more sneak peaks of your little bun in the oven as many more ultrasounds are needed! A normal pregnancy usually only gets 2-3 ultrasounds in its 40 weeks, but I got at least 8—enough to fill a whole album with ultrasound pictures!

Did you have placenta previa? Did it correct itself or were your required to have a c-section? Share your story in the comments!

 

Pregnancy, Part 1. Shock. Relief. Onions.

Anyone who has ever been pregnant will never, ever forget the moment they first found out. I can say that with a great deal of confidence. For me, it was about 11 months ago but I remember it clear as day. I am a military spouse, so my husband and I move to a new state, territory, or town every few years. In July of 2018, we had just relocated to Rhode Island from North Florida. When I say “just” I mean, we had arrived in Rhode Island a mere 10 days prior, our recently purchased home was bare as can be and our household goods (military move term for furniture and all other worldly possessions) had not arrived yet. We were splitting our time between a mediocre airport hotel and our barren house, when I began to notice my emotions were really, really out of whack. Moving is a stressful time, but I was a hot mess express. My period was also late, but that wasn’t really uncommon for me. I decided to take a pregnancy test. It was negative, so I chalked it up to PMS and legit just being a basket case who doesn’t handle stress well. 

A week later, I was still super emotional, so tired and still no period. It was a Friday afternoon, I had left the hotel to visit with our geriatric cat in our unfurnished home when I decided maybe I should take the second test that had come in the box. Totally expecting it to be negative again, I took the test. To my complete and utter shock, a second, although very faint line appeared.

HOLY. S*%T. I said over and over and over again, while pacing the empty house (empty aside from a half-deflated air mattress and empty Starbucks cups) we had just purchased sight unseen. HOLY. EXPLETIVE. I was elated, I was scared, but mostly I just couldn’t believe it. I had taken my fair share of tests and that second line has NEVER appeared. And here I was. Completely alone (aside from my Hubby & elder feline friend) in a new state, in an unfurnished home, and now, NOW the second line appeared. I was so nervous to tell my husband, but once I finally did he couldn’t quite believe it either! We were going to be parents. Times were changing…

Those first weeks between the time time you see the second line and the time you’re seen by a doctor are completely nerve racking.

*Note to future self; EVERYTHING is going to be nerve racking from this point forward. Get used to it.*

Generally, your OBGYN (oh yeah, just moved so had to find one of those too) will not see you until you’re estimating to be about 8 weeks along. So, from the time I took the test to the time I was seen was about 3 weeks of agony. Pregnancy is really just a 9 month waiting game. You just want to know what’s going on in there. Is this really real? Will there be a heartbeat? Was this a false positive, even though I took 4 tests? Eventually, we were seen and I remember the moment well. I was squeezing my husband’s hand, ultrasound probe lodged well up my lady bits, when the ultrasound tech pointed to the screen and showed the little blurb and the tiny fluttering of a heartbeat, and said “Congratulations, you’re pregnant”. I let out the longest exhale and realized I didn’t even know I was holding my breath. I just felt so relieved and so grateful. Everyone asked me if I cried; I didn’t. I saved the tears for completely ridiculous moments that shouldn’t warrant tears, but the feeling of relief in that moment was like I had just lost 15 pounds off my chest.

The tech assigned me a due date of March 30, 2019, which in late July of 2018 seemed like a million years away. I went into that appointment thinking I was 8 weeks along, but they told me baby was measuring 6 weeks 6 days, meaning I likely ovulated later than a woman with a regular cycle, so the conception was later than we had thought. So, I got to start week 7 over again. And let me tell you, starting a week over again when you have pretty terrible morning sickness is not fun news. Everyone says by 13 weeks you should start feeling better, so every day you cross of your calendar gets you one step closer to the light at the end of the 13-week tunnel of hell. Luckily, I never vomited, but I was nauseous 24/7 with MAJOR food aversions.  I mean, MAJOR. I would gag and sob uncontrollably at even a cartoon illustration of an onion, and pre-pregnancy me loved onions.

To this day I’m mortified about an incident that happened involving onions being served to me after begging the waitress to please hold the onions. One of the hardest things about the first trimester is you don’t look pregnant just yet, so it’s hard to blame being a picky eater or an emotional basket case on your pregnancy, at least to strangers. I looked down at my plate and saw some red onions casually laying on my plate and totally lost it. I had to shove my husband out of the booth so I could frantically run to the ladies room like bat out of first trimester hell. Let me paint you a visual… I slid out of booth as dramatically as possible, tears streaming, one hand covering my mouth in case of vomit, one handle flailing in hopes of building more momentum/speed to the bathroom. Like a pregnant road runner. When I returned to the table about 20 minutes later, my plate had been replaced with an onion-free version, but the damage was done. My ego and my nausea needed to go home. My father-in-law was there, I’m sure completely mortified to be in the presence of such a lunatic. From that point forward, all I could eat was plain cheese pizza. Like, garbage pizza, the kind that doesn’t show a spec of a real basil leaf or tomato or I’d cry some more. Saltines were found in every purse and on every surface of my home, crumbs always in my bra, and ginger ale was my only saving grace.

Those first 13 weeks were brutal. I felt terrible every waking moment, and I was a nervous wreck. On the few days I didn’t feel bedridden, I worried something was wrong. The sickness was almost something tangible to tell me things were okay in there. The first trimester is known to carry the highest risk of miscarriage, happening to about about 1 in 4 women. And although miscarriage is fairly common, it doesn’t make it easier, or less scary. Many women, myself included, did not publicly share our pregnancy news until we had emerged into the second trimester, as to not have to share the news if we had lost the pregnancy. At the time, it seemed like the right thing to do for our family, it’s what society told us to do. Struggle through your nausea and fears alone. Even though we were blessed with a healthy, full-term baby in the end, and I did not suffer a miscarriage, it makes me think how isolating it would have been if I had. Many women and families out there suffer in silence and it breaks my heart to think about.

Shock, Nausea and the fear of onions did subside as we emerged into the second trimester. By week 15 I was feeling much better, slightly more confident that this was real, and overjoyed that I was finally able to share the news.

I want to hear what your first trimester of pregnancy was like! Were you sick? Were you surprised? Were you scared? Share your story in the comments below!

The First Post, Why Aren’t Moms Honest?

The first post of many, the question that sparked this whole blog, a question I asked myself every day for the first 8 weeks of my baby’s life; why aren’t moms honest? I mean, brutally—hold the sugar—honest?

I remember the first few weeks as new mom, feeling incredibly lied to every day. The advice I remember receiving was “sleep when the baby sleeps” and “it will get better.” But why did no one tell me how truly brutal life with a newborn was? The truth about the time between the sleeping when the baby sleeps and when it gets better. Did they not want to scare me? Did they tell me and I blocked it all out? Was I a bad mom?

So there I was, thinking back to how miserable and uncomfortable I was those last few days of pregnancy, how eager I was to meet my little boy, I couldn’t wait! But now I had done it. I had given birth to my very own new human! I had my brand new minature soulmate wrapped up like a perfect little burrito in my arms. I was a superhero. And… I was postpartum. I emerged from the dreaded third trimester into the trimester I didn’t even know existed—the fourth. A time I had no idea would be so incredibly difficult to navigate. I looked in the mirror at my swollen yet hallow face, eyes so sunken in they looked like they needed a lifeguard to rescue them from drowning in my skull, boobs so engorged they felt like they might actually explode off my chest, nipples cracked and bleeding through my milk-stained robe (hello new mom uniform!). I threw back a cocktail of ibuprofen and stool softeners that I washed down with my oversized hospital cup, while rocking an adult diaper with an icepack stuffed inside. I was panicked that I wouldn’t have time to shower (for the 3rd day in a row) before the baby woke again, before I needed to attempt to breastfeed or pump again, before the cycle of keeping a tiny human alive started all over again, and said to myself…

What. The. Actual. Fuck.

To me, it was insanity. The things no one shares. The exhaustion, the love, the tears. Dear Lord the tears. They just streamed down my face like a broken fire hydrant. I was prepared for love. I was prepared to be tired. But not this. This. Was. Survival. I know parents don’t walk around bragging about how rested they are with a newborn, but the level of exhaustion is unparalleled to anything I’ve ever experienced. I had a hard time not thinking that there was something wrong with me—that I must have been weaker than most. That I was a bad mom because as much as I was grateful for this gift, that even though I loved my baby, I was struggling. But of course I was struggling. I was figuring out my new role as a mom right after my body had worked harder than it ever had in its 31 years of life. My body was screaming at me to rest, but nope, not today. Not tomorrow either. Or next week, or the week after that. An hour or two here, 20-minute naps there, but each time I woke up from said naps I would panic. How long was I out? Where is the baby? Baby was either with Dad or sleeping beside us in Rock ‘n Play (the only thing he would sleep in those early days) of course, but that new mom panic is a jolt like no other. 

The point of this blog is not to complain about the messy-beautiful journey that is motherhood, or to scare moms-to-be for that matter, it’s to start a conversation. An honest one. I can’t say I would have listened if someone told me about the rough reality of postpartum and new motherhood before I got thrown into the mom pool. And really, nothing can fully prepare you for what it’s going to be like until you’re in it. But I noticed when I was honest (I mean, really honest) about how things were going with other moms, during pregnancy and beyond, more and more started sharing stories of their own about how tough it all is. No one likes to feel alone when they’re going through some incredibly challenging life points, and I’ve never understood the phrase “it takes a village” more. 

I’m new here in mom town, as I write this, my “newborn” is now 3 months new. I’m a different version of the mom I was 8 weeks ago. I’m finally able to sit down (comfortably) and put pen to paper (or finger tip to macbook). I’ve gotten some of that sleep I missed so much. I’ve cooked a meal, although not many or anything beyond the skill level of tacos. If you haven’t gathered, it hasn’t been easy, but it’s getting better every day. That is one piece of advice many parents told me in the beginning— it gets better. And guess what? They were right.

If I thought the first few weeks were hard, I can only imagine the challenges I will face for weeks, months and years to come. And those challenges are what I want to share, because something tells me I’m not alone in the challenges of motherhood. To all the moms out there, seasoned and new, I just want to hug ya because damn we’re good. But guess what? We’re better together.