“It’s hard to hear your sister cry, it’s hard for me too.” I sound like a broken record with how often I have had to say this in the last 15 months.
I remember hearing the word “reflux” used to describe certain babies during my years working in a daycare. I assumed it was just a common thing used to describe babies who needed to sit up a little bit longer after a bottle to avoid them spitting up. What I didn’t know was just how much more it was than that, how it was a condition of sorts not just something to describe babies who need extra burping. It changes your life as a parent and its harder to relate to parents who have babies without it. I hesitated writing this because I just didn’t know how much of It could be helpful, how much could overwhelm or how much would maybe impact decisions. However, I know how much I would have wanted to at least KNOW that I wasn’t alone in the desperate helplessness that comes along with Infant Acid Reflux, GERD, colic, whatever name you want to give an uncomfortable baby – so for that, I am sharing my journey here.
Tess, my first born, came into the world so intensely. After hours and hours stuck inside, heart rate dropping, and me coming down with a fever, she had to go to the NICU upon birth via c section. You can read my birth story here. Since she came into the world so intensely, cried often during the few days while I recovered from the c section, I didn’t think twice when she just continued that way. Our first night home from the hospital, neither of us slept. I had no idea how much she should drink but felt my breast was literally a life line. It was the only time she wouldn’t cry. What went from “maybe I’ll breastfeed!” very rapidly turned into “thank you god for allowing me this tool that I can always use.” I quickly realized around week 5 that my “intense” baby was growing even more intense by the day. She was always uncomfortable. She kept coming off my boob, choking from my quick let down. It all became too much so I just immediately switched to pumping into bottles because the “not knowing” how many ounces drove me crazy.
Then I realized, she drank 2 ounces at a time at the most. At around 2 months postpartum, I started leading my first moms group and all the moms asked whose baby was sleeping through the night, how many ounces they drank, and at what times. Tess was being fed all day because she would never drink enough and woke up multiple times at night. I had no idea. The pediatrician I saw was very unfazed by it. He told me to take her off breastmilk and try formula to see if it made a difference. I also had no idea that you can eliminate things in your diet to troubleshoot through this. I look back and all I can say to myself is “I. Had. No. Idea.” If you’re reading this, I’m telling you so that you do have an idea.
If your baby is showing discomfort and you are breastfeeding, there are a bunch of things you can work through. I didn’t know and so I pumped and stored my milk and tried formula. There was no difference. She was still uncomfortable and spitting up now. So I went back to breastfeeding. Do not feel guilty for continuing to breastfeed. I felt guilty. I blamed myself and didn’t know who I was doing it for, me to feel like some sort of perfect heroic mother or her? Finally, 7 weeks later, I picked up the book 12 hours by 12 weeks to be more informed for my moms group that everyone mentioned it in. After reading the book, and out of desperation, I started spreading apart her bottles to get her to drink more per bottle. She transformed. I was allowing more digestion time in between bottles and this made all the difference. She was still really uncomfortable at times, we definitely lived on gas drops but it was manageable. By 6 months she was over her reflux right when constipation began.
Constipation was bad, she lived on miralax every day. Every time I tried to stop miralax, we’d have an excruciating experience with constipation. I was so tired of people telling me to try prunes and water. Her diet was “perfect” for pooping. She’d withhold her poop and then when it would come time to go it was a nightmare. She had two prolapses and we saw a GI who basically said to stay on miralax and then she’d probably grow out of it once she potty trained. He was right. Thank GOD. Because as you’ll read below, my second daughter’s digestive issues reached an all time high right around the start of the pandemic, also right when I started potty training Tess. So one child grew out of her stuff, while my other was in the thick of it.
Fast forward to Nell. I anticipated that if you have one tough baby, chances are you wont have another. Sure enough, Nell came into this world as a quiet angel just as I had anticipated. By week 5 or 6 her peaceful demeanor turned into terrorizing cries, constant wake ups, no naps and a very minimal amount of ounces. I couldn’t figure out if it was harder because I was now a mom of two or if it was just plain harder. Not only wouldn’t she drink much, but she was arching her back and beyond restless during sleep. It was hard to watch. She turned over at only weeks old from contorting her body so much out of discomfort. We tried physical therapy because her pediatrician suspected she had a side preference and wanted to rule out torticolis. We saw Giselle Tadros, a physical therapist who was so incredible. She helped me with the feeding position, I’d lay flat on my back to avoid a quick let down so Nell could nurse while on her stomach. She’d stretch Nell’s body and after those sessions Nell sometimes seemed better. Her hands were unclenched, her shoulders weren’t tight up to her ears, and she seemed to open up for a day or two. What no one tells you is that extreme discomfort for your baby impacts them. They’re guarded, shaky, scared, and in pain. It is not something to take lightly.
When I was told she wasn’t “thriving” anymore at her 9 week appointment, I was devastated. I had to stop breastfeeding? She had to go on Nutramigen? Instead, I did some more research. I determined that she didn’t have any signs of an allergy, no blood in her stool, nothing abnormal about her poop, just discomfort. So I cut out dairy. It didn’t help. We started with pepcid but it stopped working after 2 weeks, then we went to zantac bc i had heard it was really helpful but i had it compounded without the recalled ingredients. That worked for about a month in combo with hypoallergenic formula. Then that medicine stopped working too.
Pumping, nursing during wake ups at night, and any sessions I could do and the ranitidine, became unmanageable. By 5 months, she was waking up every 45 minutes, we were in the start of the pandemic and I couldn’t even see a pediatrician. I reached out to followers on IG and one of them told me that Omeprazole was the only thing that helped. I begged her to tell me how to get it. I was at rock bottom. She told me to reach out to Infant Acid Reflux Solutions. I reached out and got an appointment right away. I found out that the medications that she was on were equivalent to an adult taking a tums after a meal. One dose per day wasn’t going to help – the half life of them was 30 minutes! Not only that but babies build up a tolerance to them. So we started her on the omeprazole using MARCI dosing – three doses a day. Nell became a new baby. Slowly she began to drink more, she slept more and she was mostly out of pain.
For the next 4 months I didn’t touch her dosing. I was too scared to. I dreaded when I’d have to make a change. Then as she began to eat more solids, the constipation began. I knew that constipation was a big side effect of Omeprazole. I added miralax to her regiment only to realize how gassy that made her. It was like reflux episodes all over again. I tried soaking prunes, smoothies, baked pears, everything. We used the windi, a thermometer, and finally suppositories. Finally, at around 9 months old, I started weaning her off her medication. By the time she was just on 1 dose of 2 ML per night, we would have an episode that reminded me of reflux and I’d convince myself she still had reflux and we couldn’t go any lower on the medication. What was a wake up or two at night for a burp or hug, turned into inconsolable cries and then a bottle to calm her back down. I couldn’t figure out what was behavioral, what was discomfort, what was anything. I just still knew that something was wrong and that this wasn’t entirely a recipe for sleep training.
There would be dark dark nights where she would scream at the top of her lungs even when she’d be in my arms. Times when I questioned calling 911 because no baby should cry this long, this loudly, in such visible distress. I felt such guilt toward Tess. I knew she heard these cries in her sleep. She’d sometimes tell me she was tired during the day and ask why Nellie was crying so much.
I took away all dairy although she was barely on it, I knew she was worse after we tried transitioning to whole milk. I found out that the lentils and beans she loved and that I gave her thinking it helped with constipation, were making her more gassy. What was helping one issue was causing worsening of another. It all came to a head when I came to Florida without Matt. It was worse than having a newborn because now she was older, more expressive, more of a person and I was alone every night.
After a pediatrician’s appointment in Florida and being told it is EXTREMELY rare that a 15 month old still has reflux. He told me the only way to find out what was really wrong was to stop her medication. What was so hard about all of this was the added layer of COVID and the impact it had on pediatriaian’s offices in NYC. I never saw the same doctor for Nell. No one was invested in her condition. Her records from one doctor’s office were not looked over by the new one. So this pediatrician, the first one to actually take into consideration what was happening, told me to stop all of it and to adjust her diet to less gassy foods (foods I was using to help constipation) I stopped her medicine. She still wakes up at night but its whining – she has not had a single arched back inconsolable episode.
We got a GI appointment down here to test for signs of reflux with an upper GI. When we were seen, the GI told me that unless she was vomiting, it wasn’t necessary to do that. She believed that the real issue now was gas from constipation. Sure, the beans, lentils, mac and cheese didn’t help and I should eliminate that, but constipation was the real issue. She also determined that Nell has a full milk allergy and to just keep a dairy free diet. What I didn’t realize was that Nell’s groans and grunts all day weren’t her trying to push out a poop, it was her tightening her entire body and butt to hold it in. She was traumatized from feeling anything down there, from the suppositories to hard poops, she just wouldn’t let anything pass through.
So our current protocol is miralax – ¾ of a capful per day until she has diarrhea. Softening her stool to “start over” and then titrating the dose accordingly so that her poop remains soft, always. To help with the gas caused by miralax and constipation we are putting her on pepcid, a milder more conventional medication since reflux isn’t her primary issue right now. So that’s where we are.
There are so many times I question what impact any decisions have had on my girls. Did something in my pregnancy cause these digestive issues? Did I affect Nell’s digestive system and microbiome with all the medication? I question what has impacted their personalities. More so Nell. She is attached to me, she is scared of things, easily startled and hates diaper changes. When she cries, I jump a lot quicker. It’s a hard hard thing when you can’t console your baby and toddler. You’d do anything. I just want to say that I see you all, the ones up at night not knowing why their baby won’t drink much, why their baby will drink a few minutes in peace until the reflux sets in and they refuse more than that. Someone once told me that reflux for a baby feels like swallowing a lemon with cuts down your throat. Moms have told me their babies are bottle averse from the associations they have with eating.
Reflux is a serious thing that doesn’t get enough attention. When your child refuses to eat at a time so early on in their life. When each ounce they refuse is an ounce you believe they need to sustain them, to help their brain develop, to allow them to thrive, its hard to stomach it. On top of that, you and your child don’t sleep. It’s just not what mothers should go through on their own. I’m not sure how to make a change, but I’ll start here – from now on if you come to me with a reflux situation, I’m matching you with a reflux survivor or sending you help so you can get some sleep. You shouldn’t go through this alone without seeing the light at the end. It’s there. I promise. I’m not there yet, but I can see the glimmer.