Solving The Weight Gain Mystery
Even though Millie was born full term she was so tiny the only clothes that fit were premie…she might be on her own chart for height/weight but it’s always a good reminder to look back and see just how much our little bug has really grown over the past 2+ years.
Millie was born at a small but mighty 5 lbs 1oz, her birth weight was a cause of restricted growth while in-utero. So the goal once she was born was to help fatten her up at a pretty quick rate. Initially I thought I was going to breastfeed but it was soon decided that the most beneficial thing to do for Camilla was to mix my breastmilk with a high calorie formula, so instead I had to pump as much as I could for a supply. I felt like a mixologist making up her bottles, you had to follow a specific ratio to make sure we were getting the most bang for the buck in each bottle. We had to go into her pediatrician each week for weight checks and Millie was steadily gaining weight until the GERD kicked in at about 2 months. GERD is short for gastroesophageal reflux disease and is a condition where acid from the stomach comes up into the esophagus. Many babies will have their bouts of spitting up but this was on another level, Millie would spit up half the bottle sometimes almost immediately after drinking it. As you can imagine this wasn’t helping in the goal of gaining weight. We had been making some steady progress and although Millie wasn’t on the weight/height percentage chart just yet she was shooting up her own chart!
Initially the pediatrician recommended we change formulas to something that was more broken down in its make up and easier on Millie’s belly. Anytime we changed formulas we had success first two weeks , but then the GERD came back in full force. Camilla’s spit ups would be so bad that it was an immediate clothing change for her and whomever was holding her, typically a floor/chair clean up as well. The worst was when she had spit ups at night, the poor thing would wake up screaming and crying with spit up all over her and her sheets. We had the late night clean ups down pat, one would grab Millie for a quick bath and pajama change while the other cleaned up the crib with fresh sheets. She was still in daycare at this time as well and it was a little victory if she came home in the same outfit we dropped her off in! There was on average 3 outfit changes a day…sometimes 3 before lunch.
Millie’s pediatrician referred us to see a Gastroenterologist (GI) since the spit ups were not getting any better and her weight gain was being severely affected. One thing that always baffled doctors and her dietician was the fact that she wanted to eat! She never refused a bottle and would take more if you let her. They said typically when they see kids with GERD they needed a feeding tube because they will physically refuse to eat or drink because it hurts so bad coming back up. Unfortunately there is no silver bullet to fix GERD and it was a lot of trial and error, a lot of things like “we’re going to try this formula and schedule a check in to see how things are going”. We would see positive results right away and then around the 2 week mark it was back to spitting up in high volumes. We even tried thickening formula to help it “stick” in Millie’s belly, this was another experiment in itself. We had to figure out which ratio of formula to water to cereal worked best and then trying to cut the nipple to actually get the bottle to flow. SO many nipples were thrown away because we couldn’t get the cut just right,
Once Millie started on solids we noticed that it was only liquids she was spitting up which only added to this mystery. Her GI ordered a few procedures and blood work to help rule some things out. Millie has had 3 different procedures done now where they essentially watch how fluid and food are traveling down her esophagus and into her stomach. The first test she had was a feeding study to assess how the fluid was traveling down from her mouth to her stomach and if any liquid was settling anywhere along the way. Camilla sat upright in a chair with an X-ray camera set up to take pictures as she drank different liquids that varied in consistency and with Barium, a white liquid, added in to make it easier to see the milk on the X-ray. There was an occupational therapist and radiologist watching the X-rays in real time so we likely would leave with some answers to what was going on internally. The results would also be sent over to Camilla’s GI and Pediatrician for review. The good news is there were no signs of pulmonary aspiration, which meant no liquid was settling in her airways and the liquid was moving as it should down to her stomach. This also meant that they had no answers for us as to the cause of Millie’s GERD.
The second test she had was a swallow study and also involved X-rays and Barium but Millie had to lay still on her back all while drinking liquids….so a super easy test to run on an infant. This test had a radiologist present as well to provide information in real time and would be sending off the results to Millie’s doctors. The radiologist that performed the swallow study also reviewed Millie’s first brain MRI results which was a pretty wild coincidence! The radiologist was so nice and told us at the conclusion of the test that she had good news/bad news...good news was she didn’t see anything out of the norm but the bad news was she had no answers for us. She tried to keep our hopes up and told us that Millie likely would outgrow this spitting up, she shared a story about one of her own children who had similar spitting up issues and outgrew as their body got stronger. It was such a nice gesture and personal conversation but we still left feeling a little defeated.
The most recent study that was performed is called a stomach emptying scan and this was performed this past November. This test was the longest of the three and lasted about 4 hours, so again a super fun test to have to perform on a toddler. This test was performed to see if maybe Millie was getting too much liquid in her stomach and the excess was coming back up. The stomach emptying scan was similar to the others that she ate and drank items with Barium and her stomach would be X-rayed. An X-ray was taken almost immediately after she ate and the amount of substance was measured in her stomach. Every hour Millie’s stomach was scanned to measure the stomach contents, we got to take breaks in between each scan. Millie passed this test with flying colors as well but we were still left with no answer.
While we were going through the different tests Millie’s GI was still trying to fix the spitting up with some changes in formula and medicines. We tried both thickening and not thickening her bottles, which after the feeding study we were advised to not thicken her bottles. No joke I think we tried 10 formulas in the span of a year and a half! We have also tried a number of medicines to help reduce and eliminate the spitting up, in total Millie has been on 6 medicines and sometimes 2 at once to help resolve the GERD. There was a point where I could see the medicine was actually causing her more pain and wasn’t helping at all and I stopped giving it to her. I had to trust my gut on that call and I’m so glad I did because it was night/day when we stopped that medicine.
A few months before Camilla’s 2nd birthday we were referred to an ENT to see if there was another cause to this spitting up. Our GI at the time and the ENT worked closely together and decided that they would perform another endoscopy to check on the inflammation in Millie’s throat and to see if the ENT could find any answers to the big mystery. We were told by the ENT someone in her office would set up the procedure and after almost 2 weeks I called because I hadn't’ heard anything. I’ll spare the minute details but essentially I was passed around and then finally told by someone else the doctors decided not to do the scope. I was beyond mad and confused to why the change but no answers were given after I asked numerous times. When I asked if the ENT could call me with reasoning as to why she cancelled I was told I had to make an appointment...excuse me, AN APPOINTMENT?!
We had been unhappy with the GI for a while, we felt we weren’t getting any concrete answers and “fixes” were just being thrown at us to see if hopefully one would stick. The cancellation with no explanation from either doctor and the way their offices handled the whole situation was the last straw. We immediately asked Millie’s pediatrician for a GI referral and moved. Millie’s new GI is fabulous and really explains everything she is thinking and doing and doesn’t just throw a solution out there with fingers crossed. Millie had her 2nd endoscopy in June and is now on medicine that really is helping to decrease the volume and frequency of spitting up. She will have them occasionally but its such a difference from where she was even just 6 months ago. We are also working with a new dietician to get creative on ways we can add calories to things she is already eating. Like most kids her age Millie is no longer on formula and drinks what is basically milk on steroids. It is packed with extra calories, protein and vitamins to help her get those gains!
Along the way we have been referred to a few other specialists and tests to be run to check all the boxes of what might be causing her slow weight gain. Millie has had blood work to check her thyroid and metabolism, she has had an EKG to see if there were any heart issues and saw an Endocrinologist to check her bones/hormones. The Endocrinologist appointment was pretty interesting; the doctor took an X-ray of Millie’s hand to check and see what age her body thinks it is by looking at what stage the bones are in. (her body thinks it is the same age as her birth age). The conversation we had with that doctor was interesting to dive into how the human body grows and molds itself while developing along the way, and bonus we have a cool x-ray of Millie’s hand!
We know her spitting up has been a mystery to doctors and had many telling us she’ll grow out of it. Eric and I have our own theories as well and it could be a mix of both medical reasoning and physical (her stomach muscles needing to get stronger) reasons but we know it will all be cured. In the grand scheme of effects GERD could have on her we know that we are lucky she loves to eat and isn’t refusing food. We are grateful we have found a solution that seems to be working and hopefully she will continue to thrive!
