Updated: Jan 20, 2021
If you have read my birth story, you would know that Ellie was born prematurely. She was extremely clingy and had a hard time being put down or left alone no matter how much we tried. My mom ended up getting stuck in Maine with us for about 6 weeks after Ellie was born and it was the best thing that could have ever happened. I was dealing with breastfeeding challenges and a baby that would not sleep alone. So my mom, my husband, and I took shifts holding my little one so that she would get the sleep she needed. As it got close to the time my mom was supposed to leave, we started to notice my daughter was spitting up and vomiting a lot after she ate, but we figured it was fairly mild.
Then my mom left and I felt like the moment she walked out the door, things shifted for the worst.
The reflux hit us at 110 mph. Ellie would scream because she was hungry, scream because eating was uncomfortable, scream because she would vomit, and it was like this never-ending world of crying. All I could do was hold her and cry with her. There was a period of time for about two weeks where I didn’t really have anyone with me to help during the days when my husband was at work and those two weeks felt like an eternity.
When I was home alone I couldn’t even put her down to pee, so I mastered the art of going to the bathroom while holding her or wearing her. She was so miserable and I felt so bad because it seemed like no matter what I did she was in pain. My husband and I would take shifts at night having her lay on our chest so she could sleep while the other would rest for a few hours and then we would swap.
She refused to sleep on her back because it was so uncomfortable for her.....and then she started to reduce what she was eating, which made no sense because she was definitely hungry. She would arch and kick as soon as she took a couple gulps of milk and, of course, wail. At this point, we were not breastfeeding; I was exclusively pumping and giving her breast milk through the bottle, but that presented its own challenges because how was I supposed to pump every 3 hours for 15-20 minutes with a baby I couldn’t put down??
Somehow I figured out how to balance her in my arms while having the pump on. Typically this involved 20 minutes of screaming because she couldn’t be in a position that was comfortable for her while I pumped. Then I invested in the Elvie and I'm not sure what I would have done without it (especially once I started working part-time.)
I tried EVERY bottle out there and there was only one that seemed to make a slight difference. Although it did not alleviate Ellie's reflux, it seemed to help her drink a little more than with any other bottle. Because it is a newer bottle, it's not one that has been talked about much and is very underrated right now, but in my opinion, it is a great option to aid with reflux symptoms.
The NUK Smooth Flow™ Anti-Colic Bottle actually allowed Elliana to control the flow of the milk. It did not drip at all when you turned it over and instead it is specifically designed to only allow milk to come out when your baby sucks. This was the only bottle that prevented Elliana from choking when she ate. I am so grateful that I happened to get one in a package when I ordered some maternity clothes, otherwise, I’m not sure I would have ever bought it to try. I mention this because I want to encourage anyone out there struggling with this to give it a shot because it was the only bottle that made somewhat of a difference.
Despite the unwavering support of my amazing husband, his mom, and other family members from afar, I felt alone.
After Ellie started to reduce her milk intake, I realized it was time to speak to her doctor. I honestly thought they were just going to disregard my concerns and tell me it was normal, but I am so grateful that did not happen. Ellie's doctor decided to put her on liquid omeprazole. Although insurance refused to cover the medication due to it needing to be compounded in liquid, I finally felt like maybe we were going to start seeing a change. We started at the lowest dose. We were told to wait a few weeks, but still no change. We then increased the dose, waited another few weeks, and still no change. We then went up to the highest dose she could be on and finally, we were seeing a little change.
Now keep in mind, we were using the prescription medication in conjunction with all the other reflex “tips and tricks." These included sitting her up for an hour after eating, which made the whole "lay them down drowsy, but awake" concept nonexistent because she would always fall asleep while we held her, and who was I to wake her up if she was finally not in pain and able to get some sleep? We also burped her every ounce and fed her smaller amounts more often.
After 6 weeks of her being on the medication, the doctor told us it was standard to be referred to a pediatric GI doctor if significant improvement had not been seen on the medication to where Ellie could start being weaned off of it. In no way was Ellie anywhere near that point of improvement.
I was relieved that we would be seeing a specialist. I thought maybe by exploring more options we would finally see some serious improvement and reduce some of the pain Ellie was feeling!
.......Well, I shouldn't have gotten my hopes up because it turns out I was wrong. Before I go into our experience with the GI doctor I want to mention what my gut was telling me.
So a month prior to all of this, I had done some reading and talked to a few other people who had babies with pretty severe reflux and they had mentioned what a difference switching their child to hypoallergenic formula made. Now this made me emotional because I already wasn’t feeding Ellie the way I thought I was "supposed" to. I thought I would have been breastfeeding her at this point in time, but instead she was getting breast milk through a bottle and now I was considering taking her off this thing that is “supposed” to be the best thing for her and putting her on formula??
Man, the mixed emotions I had about this!
I bawled at the thought of her no longer being on breast milk. I felt like if I stopped pumping somehow I was failing her even though exclusively pumping was so physically and mentally lonely, stressful, and exhausting. Anyway, I mentioned all of this to her doctor, and because Ellie was not showing signs of any type of milk allergy, she advised against it and urged me to keep her on breast milk.
In hindsight, I wish I had gone with my gut then instead of waiting.
Mamas, please make note of this: I want you to know that, despite what anyone else says, you know your baby/child best as you are the one living in it, every waking moment of it. Know that if your gut is leaning you in a certain direction, you should follow it and trust in your mama instincts cause often, at least in my experience, it is right.
We were referred to the GI specialist and given an appointment almost two months later, which also made me feel extremely hopeless.
How was I supposed to deal with this for another few months???
But somehow, by the grace of God and me being persistent and calling once a week for several weeks to see if there were any cancellations, we happened to get a telehealth appointment within three weeks of being referred. I felt like at this moment my prayers had been answered. Again, I wish I had never gotten my hopes up.
The appointment was probably one of the worst experiences I have had with a doctor before, and I have been through some pretty crappy experiences as a result of my chronic Lyme journey.
The specialist was extremely nonchalant about our entire experience. He wouldn’t even call what Ellie was experiencing reflux. He just kept saying, “she’s just vomiting." He basically told us he deals with way more severe cases that require feeding tubes and due to her still gaining a decent amount of weight, her symptoms were really not a big deal. We were told that we were falsely projecting our experiences of acid reflux on to her and that she probably wasn’t even that uncomfortable and that the only reason she was crying was because the vomit probably tasted bad.
The doctor suggested we continue what we were doing in terms of burping every ounce, keeping her upright after feeds, and suggested we add gas drops (semethicone) 4 times a day. At this point, I was leaning more towards switching Ellie to nutramigen (a hypoallergenic formula.) When I asked the doctor if he thought I should make the change, his response was somewhere along the lines of, “I support it, but don’t expect it to change much.”
I honestly had to hold back tears the entire visit.
He proceeded to tell us that things were probably only going to get worse and that babies were “designed to vomit” along with other extremely discouraging things. Before the visit was over, I asked if he thought we would see any improvement at all with the combination of medicines and change in formula, and with little to no emotion he simply said, “I would just settle in because I don’t think anything is going to change."
We got off of the computer after the appointment and I was flooded with emotion. I was so mad, sad, hopeless, frustrated. How could someone who is supposed to help kids for a living be so insensitive? I felt like I had just been punched in the gut. After processing that appointment, I decided, based on the people I had talked to, that it was time to go with what my gut had been telling me all along and switch to nutramigen. I received support from the pediatrician and we made the difficult but ultimately right decision.
We tried one bottle of formula and initially Ellie was not interested, but after a few minutes, she downed the entire thing and seemed to be a lot more comfortable. A few hours later when it came time for her to eat again we offered her a bottle of breast milk and to our surprise, she wanted nothing to do with it.
How is it that she somehow knew that it was making her stomach sick and that the other stuff wasn’t?
We offered her another bottle of formula and she drank all of it. Why hadn’t I made this switch sooner???? After a week or so of being on only formula, Ellie finally started to feel better. No, it didn’t fix everything, and yes she was still vomiting, but she wasn’t arching, kicking, and crying as much when she ate, she was increasing her intake instead of decreasing, and she actually started to smile.
Thank goodness something began to change!
I sure as hell had no idea how I was going to manage much longer with the way things were going. Some weeks were better than others, but ultimately she was doing a lot better - she was sleeping on her own and not waking up every hour, she was eating consistently, and she was a lot less cranky. As time went on, she started to learn to sit up and as her core muscles started to strengthen, the spitting up and vomiting started to decrease.
Fast forward to the last few weeks. Ellie has been doing fairly well and although you can still hear stuff come up after she eats, she isn’t spitting up or vomiting nearly as much (maybe once or twice a day instead of 8-10 times a day.) We have recently attempted to reduce the dosage of omeprazole, but soon realized her system just wasn’t ready. After two or three days of the reduced dose, we had several bouts of projectile vomiting. So we are back on the high dose and will try again in a month or two. We are in no way completely out of the woods, but we can see some sunshine and we are all just grateful Ellie is finally able to be a lot happier and in a lot less pain.
Having a baby with reflux is an experience of its own. It’s extremely challenging, it’s emotionally exhausting, it pulls on every part of your being and it honestly made me question so many times if I was cut out for motherhood. I couldn’t even tell you how often I cried and how often I wanted to run away and not look back. But I would always somehow manage to dig deep amongst the sea of tears and find whatever little strength I had left to continue to be there to fight and advocate for my daughter.
This experience has really taught me to listen to my instinct as a mom and to really trust my gut.
To the Mamas going through this: please know you are not alone, please reach out to me if you need someone to talk to, to cry to, or to be your support. I know how hard this can be and I would not wish this experience on anyone. Know that as time goes on it will improve and know that if deep down you feel you or your baby is not getting what is needed, keep fighting because, in the end, YOU know your baby best.
P.S. For anyone struggling to obtain insurance coverage for hypoallergenic formula, I will also be writing a post about my experience with this in hopes that it can help some of you!