So almost immediately after taking Grace home from the hospital, we noticed that there was a problem… she really didn’t like to eat. This seriously couldn’t be my kid, could it? I love to eat and would snack all day if I wouldn’t weigh 200 pounds if I did! This couldn’t really be my luck… but it is.
The issue started small, almost unnoticeable. We would increase Cole’s feeds weekly by 5 or 10 ML because he was downing his bottles and Grace would barely finish hers so we would not increase the size of her bottles. Cole quickly got to a place where he was taking 6-8 ounces in a bottle while we could barely get Grace to keep down a couple of ounces. Cole would take 10 minutes to take his bottle while Grace would take an hour. Cole was genuinely happy during feeding time while Grace grimaced, cried and acted agitated. At first, I thought maybe she just wasn’t hungry during some feedings (we were still feeding them every three hours) or maybe she hadn’t pooped today so she still felt full. I was dreadfully wrong.
As the first few months passed though, we realized we had an actual problem. She started truly resenting the bottle because we could not get her reflux under control and it hurt her. Her weight gain leveled off and she was not gaining as much as she should have been. She also started projectile vomiting entire bottles hours after eating. Once the consistent vomiting started, we were really worried and had daily communication with our pediatrician and our pediatric GI doctor. The more stories we told of Grace’s eating and vomiting habits, the more it looked like we were battling a disease called Delayed Gastric Emptying.
We found out that without some invasive GI tests, this diagnosis cannot be officially confirmed. We decided not to move forward with those tests because she was so small and there is not a great option to treat the disease. In the meantime, Grace was receiving monthly ultrasounds at Children’s Hospital for a hemangioma on her liver which was completely unrelated to her GI issues. In preparation for these routine ultrasounds, Grace would have to fast for 3 hours. During each ultrasound, no matter which ultrasound technician we would have, she would always ask “Did she fast for three hours?” and I’d always say yes. The technicians were always surprised at how full her belly was from eating three hours before the ultrasound. I passed on this information to our doctors and with that confirmation, our GI doctor and pediatrician felt that was enough of an assessment to prove she had Delayed Gastric Emptying.
So, what the hell do we do about it? We’ve got a kid that won’t eat and takes an hour to coerce a bottle into her and then she vomits it up everywhere. She’s not gaining weight quickly and was clocking in at eleven pounds at six months. Not to mention, she was unhappy and we were unhappy. Everyone was stressed…
As a first step, we started introducing solids at six months. Thankfully, Grace loved oatmeal mixed with her formula. We were also able to sneak canola oil into her solids to increase her caloric intake. The solids also helped keep down her liquids sometimes. If Grace did not feel like drinking a bottle that morning, we’d mix oatmeal into a bowl with her formula and feed her by spoon. Sometimes it worked and sometimes it didn’t but it got more food and formula into her than we would have otherwise. It also was quicker than trying to convince her to want the bottle.
Then there were times where she threw up all over our couch, floor, her car seat, our bed, her crib, her high chair, among many other household items. We did more laundry than I ever thought possible. My couches needed to be professionally cleaned. My living room rug needs to be thrown out! I cleaned up vomit more than I ever thought possible. I cried more than I ever thought possible. We were trying our best to get as much formula into her as possible for her growth and development but more often than not, it did not feel like enough. I felt like she was going to disappear. I felt like a failure. Your top responsibilities as a mom are to make sure your child is loved, fed, clothed, clean and safe. I couldn’t feed her and it broke my heart.
Finally, after weeks of debate, we decided to try an antibiotic that had seen results in babies with Delayed Gastric Emptying. It is called erythromycin. We started Grace on a dose for her weight that made her even more nauseous and sick. She vomited after taking the dose without even eating much. It took weeks to get the dose right but when we finally did, it seemed to work. She ate a bit more and her reflux was finally under control as well. We saw some solid weight gain and she put on about a pound a month for the next six months and she now weighs 16 pounds at 13 months.
We’ve managed Grace’s delayed gastric emptying and her reflux but it’s not even close to perfect. Feeding Grace is still a huge challenge. We can’t leave her with many people other than our nanny, our parents and my sister because they can’t feed her. We could never send her to a daycare because of the amount of time and dedication it takes to feed her. We still can’t be outside of our house during many bottles because she often won’t drink in a new environment and there’s also the chance she’ll throw up everywhere! We sometimes resort to playing Mickey Mouse Clubhouse videos on our phone to distract her enough to eat. At this point, I’ll do whatever works to get a full bottle or a meal into her and sometimes that entails singing and dancing for her entertainment.
After thirteen months of feeding Grace, we’ve started to relax a little bit. I don’t eat the same amount at every meal, do you? Sometimes Grace takes five ounces and sometimes she takes seven. Sometimes she wants to eat green beans and sometimes she doesn’t. We track her calories in a book (buy this!) so we can know if we need to try to get a higher caloric dinner into her before she goes to bed to hit her calorie goal. Most days she hits it but sometimes she doesn’t.
Our kid isn’t always hungry but she has food available to her all the time. She is loved. She’s happy. She’s growing. She’s so smart. She’s beautiful. When I look back on her infancy, I don’t want to remember holding her at midnight on my couch covered in vomit trying to feed her… I want to remember her laugh as we danced around the kitchen trying to entertain her enough to finish her dinner and her smile the first time she tried avocado, which is her favorite. I want to try to put those hard times behind us because she is flourishing and she is going to grow and someday I am going to miss holding my tiny 16 pound one year old!