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Living with a child who has difficulty eating is a unique experience. No story is the same, but we all experience similar struggles and successes. Feeding Matters would like to thank everyone who has shared their stories that provide hope and healing to others. As you read these stories, know that you are not alone.

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A Feeding Tube for Support

My son was not quite two years old when the words “alternative feeding methods” were first said to me. Alternative feeding methods? I knew that meant a feeding tube. We had good friends whose son had had one for several years. But my son? Apollo was still breastfeeding several times a day and throughout the night. He ate solid food…here and there. Feeding had always been a struggle as had weight gain. But a feeding tube?

Apollo had been a sick, slow to gain baby who was labeled with failure to thrive. Test after test revealed no issues. He was a mystery. Finally, at 18 months old we began to get answers. Through an MRI Apollo was diagnosed with a double aortic arch. This is a rare heart defect in which the aorta grows around the esophagus and trachea. Apollo was literally being strangled by his heart. This is why he couldn’t gain weight and why eating was so difficult. Within weeks he had closed heart surgery to finally free his esophagus and trachea. We were told his breathing problems would take time to improve, but his feeding issues would resolve right away.

Except they didn’t. It was just a month after his heart surgery that the therapists mentioned “alternative feeding methods”. Within three weeks he would have more tests done, revealing yet more compression. A week later had a g-tube placed in his stomach.

Apollo’s adjustment wasn’t easy. His stomach wasn't used to being “full”. He didn’t like the tube hanging out of his body. It was hard on everyone. But he began to grow. Slowly, ever so slowly. He never experienced the amazing “catch up growth” the doctors promised. His growth was slow and not always steady. He had a second heart surgery and this time the compression on his esophagus was completely removed. We were thrilled! The surgeon told us he would probably be off the feeding tube within six months, but he wasn’t.

He still ate only a few bites of food at a time. He attended months of feeding therapy with very little change. He would try a new food now and then, but still limited himself to 2-3 bites. Life moved on. Apollo turned 3 and then 4. He was still getting 1/3 of his calories through his feeding tube. Nobody really knew why he wouldn't’ or couldn’t eat. As a mom, I reminded myself a feeding tube wasn't’ the end of the world.

The summer Apollo was 4 he began to experience severe sleep apnea. After sleep study and bronchoscopy, the decision was made to remove his tonsils. Apollo had a very rough recovery from the surgery. He refuse to take a single sip of liquid for six days. You can bet I was thankful for the feeding tube then! Having a tube meant we could keep him hydrated and go home…instead of staying in the hospital for IV fluids.

Once he recovered from the surgery we noticed a change. Apollo began eating foods he had never eaten before: cookies, bread, muffins. He still ate small amounts, but a little more than before. Within six months Apollo would eat part of a sandwich or a whole cookie. It turns out those big tonsils were affecting this ability to eat. He was doing so well we decided to cut back on the calories he was getting through his tube and he immediately began to lose weight. So back we went, watching Apollo take baby steps (or in this case baby bites). Just before he turned 5 apollo began visiting the Feeding Clinic at Seattle Children’s Hospital. There he was weighed to the gram. There we learned techniques the helped us get him eating at the table with us (a source of anxiety in the past), eating more and at regular mealtimes.

At five and a half,  Apollo still has his feeding tube but, but we are currently just using it for medicine and vitamins. We are very hopeful that he will get it out late this year. Our journey with a feeding tube was l longer, bumpier and more complicated than I ever imagined. But it has allowed him to grow, and now, a few years in, to finally thrive.

 


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Eli The Great

My son, Eli, was born at 36wks. Everything was fine, until he developed congestion. I did everything to help clear up his congestion, but nothing worked. He soon started to snore so loud at night, followed by silent episodes where I swore he wasn't breathing. Our Pediatrician took one look at him and sent us to Lucile Packard, Stanford Childrens Hospital. We learned Eli had mulitple complications. Eli had severe GERD that would irritate his esophagus so much that it would swell and press up against this trachea  causing him to obstruct, and stop breathing. When he was fed by mouth he aspirated food and/or reflux into his lungs. The primary diagnosis was Laryngeal and Tracheal Malacia w/ GERD. He underwent a sternotomy and removed his Thymus gland ( to make room for his airway to expand). A Gtube was placed a few weeks later and he began to gain weight quickly. He is now 10ths old and our GI team is considering removing the tube.

It took so many sleepless nights to get to this point. From continuous feeds to bolus feeds every four hours, to weekly visits for occupational therapy. Now to transitioning off the tube, I am filled with anticipation. Eli is scheduled for a repeat Swallow study in October and my "finger are crossed." Anyone with child who has feeding difficulties know first hand that their progress is typically one step forward, two steps back. I am anxiously waiting for that day, when I dont have to document his daily feeds or obsess over every ounce he gains. Eli has taught me to appreciate every victory, no matter how small.


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My Journey with Andreas--Raising an IUGR Baby

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.

 

 


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When picky eating is more than pickiness

My daughter was a full term baby, a late in life baby, I was 42 when I became pregnant. My pregnancy was easy as was delivery. As an infant Jessica ate normally, in fact I never even had to burp her because when I took the bottle out to do so she screamed, when she started jar baby food she loved everything, even those horrible jar meats! At 3 years old we were at McDonalds and she asked me to take the hamburger off the bun. I was confused and asked her why and she said "I am not eating meat anymore because I love animals" that was the start of our nightmare, before we knew she had ARFID. She became extremly picky. I found myself sometimes making her 3 different meals before she would eat. She was down to spaghetti noodles with only Hunts tomato sauce, hot dogs - only microwaved, and dinosaur shaped chicken nuggets! If I made something and it did not taste just right I was making it again. Even grocery shopping became horrendous. If one store was out of Hunts tomato sauce I had to go to another store. Her pediatrician told me the same thing over and over "keep offering her things, she will eventually eat." Family members would say "when she is hungry enough she will eat, she cant starve herself." Her weight was always ok, but that is probably because chips and sweets were a staple in her diet. Eating was not enjoyable for her, she hated the fact that she had to eat. She could not do sleepovers with friends, in fact she could only go to friends houses for a few hours at a time because she would not eat. One day when she was 8 years old she choked on a hard candy. I tried the heimlich but it would not budge. I was just about to call 911 when she got it out. That was the start of an even bigger nighmare. She refused to eat, not even drink milk. She was so afraid of choking again she didnt eat for 2 weeks. I was frantic. At that time her insurance changed and I was force to find a new pediatrician. Wow what a blessing! This woman knew just what to do. She referred us to a specialist. She called me every day to check on her. It has been a long road but today she is eating broccoli, carrots, sugarsnap peas, meatballs, chicken. The list goes on! It has not been easy and 3 years ago I had to quit my job to be home with her. Believe me it is possible to cure this. Please don't give up because if my daughter can do it your child can too. My advice to all parents is "trust your gut" I doubted mine for a time, but now I always follow it. If I feel the doctor should do more I make sure they do. Sometimes my husband thinks I'm crazy when he comes home from work and I tell him I had to make the doctor or school or whoever listen. I tell him, today I had to put on my big girl pants!


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Liam

Hi my name is Linnea. My son Liam has struggled with weight gain since before he was born. Our first indication that something was not quite right was after our 20 week ultrasound. My OB called me two days later and told me there appeared to be an abnormality with his umbilical cord. He appeared to have a marginal cord insertion, but they were not sure. She scheduled another ultrasound for 24 weeks. The marginal cord insertion was confirmed at the second ultrasound. I was referred to a perinatologist for follow up. She told me typically there are no complications with the marginal; however, they need to monitor his growth. So we went in for for ultrasounds every 4 weeks.

Between week 30 and 34, Liam did not appear to grow at all, and actually appeared to lose a little weight. After this I noticed that he moved very little and began to have strange heart patterns. At this time I was going in for 2 weekly stress tests, weekly OB visits and perinatologist visits every other week. We were taken to the ER 3 times for monitoring due to no movement. Low heart rate, or high heart rate. They decided to flip him head down and he appeared to react well. He began moving again and his heart rate evened out. He even began growing again. They induced him at 39 weeks 5 days because they did not want to risk me going past my due date with all the complications we had.

At the end of labor he began having late decals, but he was already to far into the birth canal for a c section. He was born blue with a weak cry, and his cord wrapped around his abdomen 4 times. All that was needed to bring him around was a sternal rub. After all that he seemed to be a healthy 6 lb 14 oz, 19 1/2 in baby boy. We breast fed him exclusively, and he latched great. He would unlatch frequently and take a few seconds break, then rematch and eat more. I did notice he coughed and choked when I let down, but I was able to control that with a couple minutes of pumping before each feed. And I noticed he always leaked milk out the side of his mouth. He spit up frequently, and at 3 weeks old he began to projectile vomit after every feeding. We feared he had pyloric stenosis, but that was ruled out. He was diagnosed with severe GERD, and placed on Zantac. This helped with his arching, crying, and projectile vomiting; but he continued to spit up with every feed. Every few months his Zantac would need to be increased. But for the most part all seemed well again. We introduced a bottle at 4 weeks old, and it took us until he was 8 weeks until we found one he would take and we used pumped milk. He would only take the MAM type of bottles/pacifiers.

Then we began to have problems with his latch. He was forgetting how to breast feed and couldn't go between the two. We chose to continue with breast feed, and he would only take a couple oz at a time with the bottle, but when I was home he only breast fed. Everything seemed to be going normally, until his 6 month well baby check. We had noticed a slow decline on his growth chart for weight from 23% to 10% between months 2-5. He went in at the beginning of his 5th month for a fever and was at the 10%. He had a viral infection that only lasted a couple days and didn't seem to effect his eating. Then we went back in 3 weeks later for his 6 months well baby check, and he had dropped to -3%. We stopped breast feeding and began keeping a food log. We noticed he was only eating 18-22 oz a day and it should have been 25-27 a day. We began adding in formula to make his cal/oz of his breast milk to 22cal /oz. this was going ok for a while but then he dropped to -4%. At this point I was out of breast milk so we had him on 24 cal Similac sensitive.

After a few weeks on full similac his projectile vomiting returned. We switch to soy and for 2 weeks he could not have a BM on his own, he refused alumentium. We ended up on 24 cal Neocate infant. Within a month his spitting up was basically gone! He was 10 months old and still only eating 3-4 oz a bottle, and would only eat about 1 jar of baby food a day, but many times much less. We also began introducing finger foods, but had no luck with those. He would pocket them in his cheek, then spit them out when his mouth was full. If he would accidentally swallow he choked, gagged, then would vomit. He continued to have very slow weight gain. It was a great month if he gained a couple oz all month! At this point he was diagnosed with Failure to thrive, and we were referred to a geneticist for a suspected genetic condition. Since he was still gaining weight (albeit very slowly) we continued with increased cal Neocate infant by mouth. After his 1 year well child check his was 15 lbs 10 oz. he then got sick at the end of January 2015 (2 weeks after his 1st bday). And he dropped his intake from 20-25 oz to 6-8 oz a day. We had to go to the ER for fluids, and were sent home after and told to follow up if his intake does not increase over the next couple days.

By 3 days he was no longer sick, but still only eating 15-18 oz a day. We were referred to GI because Liam had lost 14 oz since his birthday, which was only a month before being referred to GI. At this time we still had no results from genetics and he still is not eating solids without choking, and is still drinking formula from bottles. He is not talking, but doing everything else he is supposed to be doing at 13 months old. Liam's GI increased his formula from 24 to 30 cal/ oz. then Liam dropped his intake again to 10 oz a day. We backed off and did 26 cal/oz but his intake did not come back up. On February 16, 2015 we placed an NG tube with the plan to use it to supplement what he would not take orally. We were to offer 3 oz every 3 hours for 6 feedings and if he did not eat the entire 3 oz, to do a slow push through the NG. After a couple days he began to refuse all oral feedings after the 10:00 am feed. Neither his GI or myself were comfortable with this, because we did not want him to become completely tube dependent since there was no reason he could not eat by mouth safely. He does not aspirate, has never had an infection worse then a common cold/ear infection. Swallow study showed no concerns. So we got a pump to give overnight feeds and only oral a day, or 1-2 push feeds at most during the day.

After a couple days of this I seemed to notice a sudden comeback of his GERD symptoms, he had maxed out on Zantac in December 2014, and has been on omeprazole since. I asked if we could increase his dose, and found that he is maxed out on omeprazole as well. We decided to slow his overnight feeds and that seemed to help. He then got the stomach flu and was not tolerating any oral feeds and we had to run his 3 oz day feeds over 30-45 mins for 4 days. This brings us to march 3, 2015. I had gotten Liam to eat 2 oz oral for the first time since before he was sick, and laid him down hair a nap. An hour later he woke up screaming. He had pulled out his NG tube. His GI decided that he wanted to try to stimulate his appetite with cyproheptadine and leave the NG out. On March 5, 2015 we heard from genetics, and they found a deletion on his 1st chromosome. They said this was a perplexing find because some people with the same deletion show no symptoms while others do. They believe there may be something else that their test is not sensitive enough to catch that causes some people to have symptoms, so he will be tested again in 1 year. He also had surgery to fix an upper lip tie on March 6, 2015. It is believed this could contribute to some of his feeding problems but most likely not the main cause.

Also on March 6 he saw a feeding therapist for the 1st time (we had been on a waiting list for 2 months) so since he was eating as he had been before his surgery (which still wasn't great at only 15 oz a day) we jumped at the chance to go in when someone else cancelled. She diagnosed him with generalized low tone, ineffective suck/swallow/breathe pattern and poor/weak oral motor skills. She explained that he is holding his breath on occasion while eating a bottle and gets very tense in an attempt to control his swallow. This burns a lot of calories, and has caused him to be sensitive to large volume because his over the last year he could not eat more than 3-4 oz at s time because he would get fatigued and his stomach did not get accustomed to larger volumes. On Saturday March 7, we noticed he was taking very long naps(2 three hour naps), had only eaten 6 oz by 4 pm, and neither my husband had changed a diaper since he had woken up that morning at 6 am. We took him to the ER for dehydration, and GI reinserted the NG tube. His GI and I decided that his issues are going to take longer than we originally believed. We are now going to do a endoscope and reflex text on 3/17/15 then after that schedule to have a gtube placed. He will also have extensive physical, occupational, and feeding therapies.


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