Andreas' struggles began before birth, my pregnancy had become a concern with the first hormonal markers being pretty severely off, indicating that there may be an issue. Later during our 4 month ultra-sound, the measurements indicated that he was not growing as he should be. We later received the diagnosis of intrauterine growth restriction (IUGR), likely due to placental insufficiency. The pregnancy was extremely touch and go, with daily ultrasounds, Doppler readings and fetal NSTs to juggle the fine balance determining the risk vs. benefit in keeping him inside. Each week of gestation was a little victory, as we carefully monitored the uterine conditions to make sure he was removed before the risk in-utero outweighed the risks of preterm delivery. Andreas was a fighter and made it a remarkable 36 weeks! He was born via C-section, as many IUGR babies are, due to the stress of labor causing heart decelerations.
He was born May 7, 2012, 4 lbs, 2 oz. and only spent 8 days in the NICU before we were able to take him home. Initially there were the latching difficulties and digestive challenges of reflux that are common with preemies and low birth-weight babies. He started out with tube feedings in the hospital and a combination of both breast milk and a specialized formula for preemies. I worked with a lactation consultant and used a special sleep positioner to help with the reflux. With a combination of the high calorie formula and breast milk, Andreas was able to gain weight quickly and began catching up. He did, however, begin to form a preference for the bottle over breastfeeding. By four months Andreas began protesting breast milk all together. I still managed to get him to take about two feedings per day on the breast and the rest were formula feedings. By six months, when he had started receiving his first solids, he phased breastfeeding out completely and became more and more disinterested in the bottle feedings as well. I had always notice the heart shape of his tongue and wondered if he may be tongue tied and if the ankyloglossia may be making the feedings more difficult for him, especially the breastfeeding. When I brought this up with his pediatrician, she showed little concern and said that there was little evidence of tongue tie interfering with eating. The next phase of Andreas’ feedings were the solids, which kept his interest for a while, but soon became an issue for him as well.
Desperate for him to eat, I resorted to so unorthodox methods, such as allowing him to watch a movie while I fed him. This soon became a necessity to get him to eat and I noticed more and more how disengaged he was from the entire feeding process and how much he seemed to require an immense amount of distraction to partake in it all. Andreas didn’t ever initiate mealtimes and didn’t generally show much interest in the act. He was never an active participant in the feeding process and resisted any of my attempts to get him to feed himself. He continued to eat my homemade pureed concoctions almost exclusively, well into the age that exploring with finger foods and self-feeding was encouraged. I felt like I had to get him so enthralled with a movie that he didn’t even noticed me bringing the spoon to his mouth and I could only feed him when he was in this hypnotic state. I was later able to slowly wean him from the movies and move first to books and elaborate puppet performances, then graduate to some toys on the tray of his high chair, but he still always required some form of distraction. Mealtimes were extremely labor intensive for me and with the amount of energy they required, were definitely my least favorite part of the day. Andreas continued to refuse anything that involved even the slightest texture and ate only the finely pureed items. Things remained like this until he was two, while he did go through an occasional of eating certain finger food items such as fruits and scrambled eggs, it was never very consistent and pureed items still remained the only reliable mode for feeding him. Andreas’ had been working with a speech therapist and occupational therapist through the California early intervention program during this time, to help him with his language delay and also work on some of the feeding issues. We discovered that he had significant hearing impairment due to a chronic otitus media with effusion and scheduled a surgery to have myringotomy tubes placed as well as a frenectomy.
Andreas had the surgery in June of 2014 and responded very well to both procedures. He began being more daring with foods and trying more solid items and also began to explode in the language department. Communication began to improve, which also helped him to voice his food preferences better. While we did see quite an improvement, this did not solve the feeding problems and we quickly saw that the issues were more involved. After the frenectomy, Andreas took a turn from eating primarily pureed foods to gradually phasing them out completely. To this day he won’t touch anything that needs to be eaten with a spoon. He will no longer eat yogurt or oatmeal or anything that has a soft, mushy or gooey texture, including sweets such as frosted cupcakes. Andreas no longer needs to watch movies, but he has never sat at the table to eat or treated food as a meal. All of Andreas’ food intake consists of snacks on-the-go, there have been times where we had to get extremely creative, just to get him to eat something. Keeping Andreas fed has involved a team effort from the entire family and our days often revolve around his caloric intake. No one method would ever work for two long and no one food item has ever been reliable either. Andreas tends to go through phases where he is really into a few particular food items and then from one day to the next, he wants nothing more to do with it. There are several things that we have a good track record of success with, but it’s never a guarantee. Most often we are following Andreas around with food all day until he actually agrees to eat something and some days we manage to get barely anything. Andreas is beginning to learn the power he has in his response to eating and has often been trying to use it as a bargaining chip. He will try to get things that he wants, such as playing in the car or going to the park, but most of all tries to bring up eating before nap or bedtime. In desperation, we have often caved, especially on the days where we have witnessed how little he has eaten.
I don’t want Andreas to learn that food is a tool for manipulation or that his eating relies on a reward. I can see how we have reinforced these behaviors by indulging him, but it is really hard to stick to our principles when the hoops we jump through seem to be the only thing keeping our child alive. I have tried to take a step back and refrain from my usual hyper vigilance, allowing Andreas more autonomy in his eating, but after less than two weeks of this approach, he already lost 3 lbs. We recently had Andreas go on Cyproheptadine, which we had success with in the past when his eating had gotten really bad after being sick, but the most dramatic effects seam to die down after the first week or so, as his body adjusts to the medication.
I will be starting to work with the feeding team at South West Human Development next week, and hope to find some new strategies to better support my son with his feeding challenges. I am also really interested in possible connections between Andreas’ early nutritional deprivation in utero (IUGR) and his chronic lack of appetite. I have a theory, that as a fetus, Andreas’ metabolism may have made adjustments to optimize his nutrient absorption and fat storage, as a survival mechanism to combat the placental insufficiency and nutrient deficient environment. I have been doing some research on IUGR babies/children and have found some studies relating to fetal programming and the “thrifty phenotype,” which support my theory on the possibility of metabolic adaptations that may occur in these individuals. The studies that have been conducted in this field are limited, so I have not found anything published to date that specifically addresses the appetite component, however I have some thoughts on that as well.
While I do feel like there is some sort of underlying physiological condition at the root of our struggles, I also understand that, regardless of initial cause, Andreas has formed an unhealthy relationship with food and acquired certain habits and approaches toward eating that are, at the very least, contributing to the whole picture. I feel that, at this point, it makes little difference whether the initial causes of Andreas’ feeding difficulties are psychological/behavioral, or if that is merely a secondary response to a physically routed dysfunction. It will be vital to address both the physical and the emotional aspects simultaneously, as they are both intertwinded. I think a collaborative, team approach will be the most effective way to support Andreas. I am really interested to hear from other moms with IUGR babies that have experienced feeding difficulties! I would also just love to find other local moms with similar feeding struggles, so that I don't have to feel so alone in the battle.