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Allergies and Elimination Diets: Sarah’s Story

by Sarah Neyers

Hard-won. To explain our breastfeeding journey in a word, that would be it. We just hit our first goal of breastfeeding for six months and it did not come easy. To say that breastfeeding is natural considerably downplays the ambiguity of the journey. Breastfeeding is challenging both physically and mentally. If you are reading this and wondering if it is normal to be struggling, I assure you that it is. For you to understand where we are now, you’d have to understand where we came from in the beginning.

My son, Gavin was born just after noon on June 2. I had been in early labor since the evening of my due date (and birthday) May 31st and had been in the hospital from sometime during the evening on June 1. It really is all a blur at this point. My resilience was tested from the beginning and I had to learn quickly to adapt to change. My goal was to not have an epidural and in the heat of labor I changed my mind, only to find out after I got it that I was already seven centimeters dilated. I made it to eight centimeters dilated and my labor came to an abrupt halt. My water had to be broken and I was given Pitocin to speed up my labor. My epidural was turned off to help my body respond to the contractions. I pushed for one hour and Gavin arrived, a beautiful, healthy, boy. He latched perfectly from the moment we tried to breastfeed. I was shocked and proud and hoped that our journey would be easy and as natural as I was told to expect.

Shortly after midnight I started to feel sick. We can chalk it up to exhaustion, stress, or any of the above. I suffer from something known as cyclic vomiting syndrome. The easiest way this has been explained to me is a migraine in my stomach. The same things that might trigger a migraine can cause excessive vomiting. For the next two days I was hooked to an IV and was given countless medicines. Gavin had to be supplemented with formula through a dropper (God bless my husband for taking care of him). Thank God there was a clean and healthy food supply for my little one as my milk had still not come in when we left the hospital. I was getting worried that my milk would not come in due to the medical issues I experienced. However, after a day of continuous cluster feeding my milk came in–six days after Gavin was born. We had crossed our first hurdle and I was proud. I had fed my son formula (despite the guilt I felt for doing so), but I didn’t give up and we were doing well with breastfeeding.

In the coming weeks I developed an oversupply; I had just started pumping and had a freezer supply starting for when I knew I would have to return to work. In the overnight hours of June 29, 2016 I noticed a small amount of red blood in Gavin’s diaper. At 3:00 am, Doctor Google had me convinced of all the things it could be and as soon as the doctor’s office opened I made the call. We were just establishing a good rhythm and I couldn’t believe another wrench was being thrown into the mix! The doctor brought us in and said that this was most likely a dairy allergy but that we needed to see a specialist. To my surprise we were able to get into the GI doctor’s office that day. The suspicion of a dairy allergy was echoed by the multiple gastroenterologists that saw us that day. After finding out that Gavin would be okay, all I could think about was the fact that for once in the first few weeks of his life I had myself together: I had made a pan of baked ziti in the morning for dinner that night, but now I couldn’t have any of it! Cue “Isn’t it ironic” by Alanis Morissette. After the initial thoughts of “never being able to eat anything” wore off, I adapted quite well to the no dairy rule. It would take a few weeks to get out of my system, and therefore Gavin’s. The blood in the stool should taper off to nothing and we would be on our way. Unfortunately, this meant the freezer supply I started had to be disposed of and I was back to ground zero for when I went back to work.

The weeks passed but the blood was still there. It wasn’t in every stool, but Gavin was still pooping every time he ate! And he ate every two hours, around the clock. There weren’t enough diapers and wipes in the world for him it seemed. He had lots of mucus in his stool, too, and things just didn’t seem to be getting better. With the help of our doctor we decided to eliminate soy as well. I didn’t do as well with this. Soy is in everything (read your labels – you will be surprised what you find!). I was reading menus and things said they were soy free. Gavin wasn’t getting better. I dug deeper into the ingredients listed and there I saw soybean oil. The FDA doesn’t require things with soybean oil or cooked in soybean oil to be disclosed, as it is not considered an allergen. I can tell you that for Gavin this was certainly not the case. We even spent some time in the emergency room one evening because he could not stop screaming for over four hours. They gave him a suppository and he deflated like a balloon with so much gas that I didn’t know a little baby could have in them. I became much stricter with my elimination of soy and continued with the elimination of dairy. Again, I had forty ounces of milk in the freezer, and I couldn’t use a drop of it. I had worked hard for this milk and the day of going back to work was fast approaching. I was able to donate this milk and that made the pain of losing it a lot better. I wasn’t able to start saving any breastmilk for the next few weeks again since it would still contain soy.

I would come to find out that Gavin has allergic colitis. His condition began to improve, but we still weren’t at a 100% clearance rate. I knew I needed to see the GI doctors again, but when I spoke with them, they said it was time to start formula. I “needed” to do this because my diet was already too limited. This is not to say that I recommend going against medical advice, or to say that my choice was the only way. It may have just been maternal instinct, but I knew there was more that I could do and I was willing to try (or perhaps you could say I was too stubborn to give up). Again, I will say thank God we have formula as a good healthy choice for babies who cannot be breastfed. For me, I knew in my heart that I wanted to continue breastfeeding. Many people commented that I was being ridiculous and putting myself and Gavin through too much. I called Katie Madden for assurance and she gave me the courage to make up my own mind on the issue. We talked about different diets I could try and what signs to look for in case what I was doing was damaging Gavin. The symptoms he was displaying were low risk and I decided to eliminate eggs and peanuts as well. We were back to the waiting game. I was already back to work and I still couldn’t create a freezer supply until this was eliminated from my system.  

I found another GI doctor and conferred with her and found that by continuing to breastfeed Gavin and eliminate more from my diet, I was not hurting him. We did a stool test and it was only faintly positive after ten days of my last elimination. This was in the beginning of September. We pressed on, learned new recipes, and found that elimination wasn’t all that bad. I was getting to try lots of new foods I wouldn’t have even considered prior to this lifestyle change! In October we had our first stool test that showed no blood during Gavin’s four-month visit. For three months we battled for that moment, and we made it. We did it. That was my first real sense of accomplishment with breastfeeding. That small moment made everything I gave up worth it. Two months later, we have made it to six months of breastfeeding. If you asked me on June 29, 2016 if I thought we would get this far, I probably would have told you that we are just taking each day as it comes.

In a way, we still are taking things as they come each day. Since I didn’t have a freezer supply when I went back to work and my oversupply began to regulate to Gavin’s needs, many mornings I am pumping the remainder of what he will need for the day. My hungry growing boy eats four ounces every four hours, which equates to 16-20 ounces a day while I am away from him. I am blessed that we have been able to maintain our breastfeeding relationship in spite of his high demand and my “just enough” supply.

I write all of this to say, if you are in the thick of trying to figure out breastfeeding, dealing with allergies, or just frustrated with the journey, you are not alone. I found my solace in a support group of women, most of whom I had never met and who all had different issues but who all celebrated the wins and sustained the losses together. If you, too, are in a season of life where you are the first of your friends or family to go through motherhood, I cannot implore you enough to find the support of other women. I will be forever grateful for their support and for them helping me to find my voice and trust my mother’s instinct. So is breastfeeding natural? Yes. Is it easy? No, but it’s a heck of a lot easier when you find confidence within yourself that you are doing the best thing for you and your baby. I will say that this is one of the few times in my life that being bullheaded has paid off for me. A little bit of stubbornness goes a long way.