Our Stories

Chloe

My name is Elizabeth and I would like to introduce my daughter, Chloe Joy.  Chloe is a happy, active five-year-old, who is 19 lbs, 33 inches tall and has MOPDII, more commonly known as Primordial Dwarfism.

My pregnancy was complicated by severe IUGR and cessation of growth.  The doctors suspected complications at the 18-week ultrasound, and then were even more alarmed at the 30 week ultrasound.  They told me the baby was not growing and to prepare for the worst.  I had 2 amniocenteses to determine the cause of the problem, but no genetic syndrome was identified.  She was born at 36 ½ weeks weighing 3 lb 3 oz (1460 grams) and measuring 16 inches in length.  She had APGAR scores of 8 and 9, was still given a very bleak prognosis.  She remained in the NICU for a total of 45 days.  Her doctors added an NG-tube at only 10-days-old in an attempt to accelerate growth, even though she was eating fairly well at that point.   She would nurse gently, but not aggressively.  When given a bottle, she would drink most of it, but never all of it.  Most times, she would drink 50 to 55 ml and I would be forced to gavage the remaining 5 – 10 ml to achieve a total of 2 ounces.  During this time, the NICU nurses would point out other small babies and tell me that those babies drank 4 ounces and my baby should drink 4 ounces too.   Also during this time, I was accused of interfering with my daughter’s growth. A nurse approached me and stated that every other baby in this NICU was growing, and then asked what I was doing to cause my daughter not to grow.  Oddly enough, Chloe was growing at a normal rate, just not at the accelerated “catch up” rate they were expecting.  By the end of the NICU stay, Chloe would take a bottle, drink 58 ml, stop, and then I would have to gavage the rest, at which point she would vomit.  The NG-tube came out of her mouth almost every time she vomited.  It was an absolute heartache to put the tube down multiple times a day.  We tried our hardest to keep eating pleasant.  We rocked and cuddled as I bottle or tube-fed her.  Each time she would vomit, I would estimate the volume she lost and put that amount in again.  It was a terrible cycle.  I tried everything I could think to do.  If 2 ounces every 2 hours wasn’t working, maybe 1 ounce every hour would?  She still didn’t want to eat.  I fed her small amounts around the clock.  I tried feeding her in her sleep.  Nothing helped.  She continued to vomit and never wanted to eat the volume the doctors required that I put in her.

By 3-months-old, she stopped taking anything by mouth.  All testing was coming back without a clue: swallow studies, gastric emptying, even MRI’s and CAT scans.  There was no indication as to why she didn’t want to eat.  Chloe was working with speech therapists.  One told me babies at this age take 8 ounces and I should go home and do whatever it takes to get 8 ounces into this child.  No one suggested any oral exercises or special feeding aids.  I didn’t even know about a feeding pump at this point.  All I knew was to gavage after each unsuccessful feeding attempt.  Looking back, I have to wonder if making up the calories overnight with a pump would have helped.  When she was 5 months of age, my frustration and fear had reached a peak.  I insisted our pediatrician check her in to the hospital for observation.  Chloe was hospitalized for 7 days.  They observed the retching and the vomiting, an endoscopy was done with no clinical findings, and we left with no answers.  Our discharge orders were to feed her on a 24-drip and allow nothing in her mouth, including her pacifier.  At least I had the feeding pump as a tool now.  My gut instinct would not let me follow the orders exactly.  I fed her on the drip, but I let her have her pacifier and a bottle with water to play and chew on.  Months went by and I was now following a crawling baby around with a giant kangaroo pump on an IV pole.  She still had the ng-tube, which she vomited out her mouth repeatedly throughout the day.  I would have to thread it back out her nose in order to re-insert it down into the proper position.  It was unbelievably cruel to hold down your own baby to do this.  One day, she didn’t cry or fight me.  My heart broke and I allowed the doctors to put in a gastrostomy tube.  The G-tube went in when she was 10-months-old, without fundoplication.  Her GI doctor had pushed very hard for a fundoplication. It had been scheduled and cancelled three times.  The first time, I had a strong feeling it wasn’t the answer, then it was scheduled again and my husband felt it wasn’t right.  The last time, we reached the point of desperation and scheduled it, than our insurance cancelled it the night before it was to be performed.  It would be months until we would learn this saved her from a lifetime of pain.

After Chloe’s one-year check up, I begged her pediatrician for permission to back-down her feeds.  I told him I could tell there were two types of vomiting.  One was a choking, gagging vomit like something was stuck and the other was an overflow vomit that came up without effort and looked completely unchanged from what was put in.  Her growth was minimal at this point.  She wasn’t at a height or weight that was even on the growth chart.  Her doctor could see that her length had slowed while her weight continued to increase, so we were allowed to back off slightly on her calories.  Her vomiting decreased dramatically.  However, she lost quite a bit of weight, which was concerning for an already extremely small child.  We had proved the vomiting was linked to the volume, but we couldn’t concentrate the formula enough to get all the calories into her with a volume she could handle.  On the positive side, I had somehow managed to keep food experiences somewhat happy.  She was willing to sit at the table during meals and was given food with which to play.  She dug her hands through oatmeal, finger painted with pudding, and pushed cheerios around her tray.  Occasionally, she would put something in her mouth, but it would be followed by an immediate fear reaction, then choking and vomiting.  Any time she cried, she vomited.  Often, even if she laughed too much, she vomited.  It was also around this time one of her doctors picked-up my diaper bag after a visit and asked why it was so heavy.  He realized that I was carrying around the kangaroo pump and told me about the Zevex, a pump that weighs very little and works whether upside down or right side up.  This was much more convenient for an active toddler.  She was still too small to wear the backpack, but she dragged it around as she played.

A few months later, another family in Phoenix heard our story and asked if they could phone me.  It was the mother of a girl who had gotten help out of state by Dr. Paul Hyman.  I took Chloe right away.  The other mother had warned me that the testing would be the best and worst day of my life, and it was.  It was a long, hard day of testing, but Dr. Hyman’s team was compassionate and kind.  It was the best day because for the first time, I had answers, proof of why she wasn’t eating.  The testing showed extreme spasms in the esophagus, enough to make it close off completely. She couldn’t swallow her own saliva.  This explained the choking, gagging vomiting.  The testing also showed her stomach did not stretch.  A balloon placed inside inflated to the equivalent of 3 ounces and would not stretch more with added pressure.  This explained the “overflow” vomiting.   She left on Amitriptyline for chronic pain and Isradapine to relax her esophagus.  The vomiting basically stopped.  Occasionally, she would vomit when crying or pushed to eat, but it wasn’t anywhere close to the constant vomiting she had known for the first 18 months.  Dr. Hyman’s team instructed me to have Chloe eat one bite per day now that the vomiting had stopped.  It took more than 20 minutes of negotiating to get her to take and swallow one bite of pureed food.  Gradually, she worked up to 3 bites at a time.  After an immense amount of prayer, she turned a corner and jumped up to 5 jars of baby food a day!  It was the most beautiful and fulfilling thing I had ever experienced.  She was eating for the first time in her life.  Her calories were supplemented overnight with an extremely concentrated pre-digested formula, but she was off the tube during the day.  It was an amazing freedom to allow her to play unrestricted from the feeding pump.  Her fears gradually decreased and she experimented with meltable solids, mostly chocolate.  She seemed to have less fear tasting food that didn’t crumble or go to pieces in her mouth.  A bite of oatmeal cookie would make her panic, but she could control a bite of peanut butter.  Around this time, she began chiropractic treatments and I noticed her need for the Isradapine decreasing.  She went longer periods of time without needing it, until eventually she was off that medication all together.  She did stay on the Amitriptyline for about 1 year.

Eating remained a constant struggle.  She ate mostly pureed foods.  She always told me she was full.  If I pushed for one extra bite, she vomited.  Gradually, her food choices expanded.  She stopped using her tube at age four.  I calculated the calories she was getting overnight and figured they could be added in during the day in the form of a high calorie drink (she was drinking only water up to this point).  It worked, because without the overnight food, she was hungry in the mornings and I could work in a bedtime snack with no fear of filling her too much during the night.  She maintained her weight.  Six months later, she was diagnosed with a rare form of extreme dwarfism.  She would be small for life.  She hadn’t needed all those calories all along.  She hadn’t needed the tube.  She had been trying all her life to tell us when she was full and had enough.  The tube was taken out immediately following the diagnosis and for the first time in her life, she was allowed to eat the amount she wanted.  The stress in our family drained out like a flood.   Today, Chloe eats all regular food by herself, in small amounts throughout the day.  Despite that, eating is still a concern.  She has fears when it comes to trying new foods.  A new food is usually sits on her plate the first few times it is introduced, but eventually she gets around to trying it.

Emilie

We’ll never forget the day, March 15, 2003.  The day after a “perfect” check-up at the OB’s office.  Emilie and Zachary were born at 25 weeks 3-days gestation.  I had a placental abruption that shattered our dreams of the beautiful delivery we were expecting to have.  At only 1lb 9 oz and 1lb 10 oz respectively, Emilie and Zachary were rushed to the NICU and were required to be on ventilators, to be tube-fed, and to remain in incubators for a couple of months.  During that time, Emilie also had to have a PDA ligation surgery and Zachary was discovered to have Downs Syndrome.  We had so many up and down days with both of them getting numerous infections, having complications, etc.  Emilie finally came home in May of 2003, only to return to Phoenix Children’s Hospital three weeks later due to aspiration issues.  She was put on an NG-tube and it remained for 19 months.  Zachary came home one- and a half months later and continued to have many problems due to a hole in his heart that was discovered after being home for a few months.  Zachary was in and out of hospitals for one year until he passed away at one year and three days old.  The doctors had discovered a rare heart disease called Pulminary Sclerosis.  We miss him terribly and think about him every single day.  He was beautiful and taught us so much without ever saying a word. 

Emilie continued struggling with reflux and was on several medications (i.e. Prevacid, Reglan, Zantac, etc.)  She continued being diagnosed with Failure to Thrive and finally had to have a G-tube inserted at 19 months old.  The G-tube was the best thing we ever did considering she was not going to be eating enough on her own for several more months.  At age three, we were introduced to a feeding program in Richmond, VA at the Children’s Hospital.  Although we were thrilled to have a possible source for help, we knew Emilie would not make progress if we didn’t know the root cause of why she didn’t want to eat.  We were introduced to Shannon Goldwater, whose triplets were enrolled in Richmond, VA at the time.  Shannon referred us to Dr. Paul Hyman for advice before considering Richmond, VA.  Dr. Hyman suggested a medication called Amitriptyline.  It made a huge difference for Emilie.  She went from vomiting up to five times a day to vomiting maybe five times per week.  Now, she rarely vomits at all!  We enrolled her in the Richmond, VA feeding program and it turned out to be the best thing we’ve ever done for her.  Within two weeks of being at the program, she ate four McDonald’s French fries one evening… We called everyone we knew to tell them about it!  After 10 weeks at the program, we came home with a child who enrolled at 100% tube-fed to a child who was discharged at 25% tube-fed.  As we’ve continued to make progress over the last five months since being home, we’re happy to report that Emilie only requires approximately 5% of her nutrition through the tube…. something we never thought possible until Richmond.  We hope her G-tube will be removed before her 5th birthday in March 2008.  It is such an amazing experience to finally sit down to a meal with a child who actually enjoys eating!  We know our feeding program will help other families discover similar positive experiences.

Christian

I had a great pregnancy, but discovered that I had gestational diabetes. At 33 weeks, I went in for a non-fetal stress test. During that test, the nurses discovered that I was contracting every 3-5 minutes and they put me on Terbeutline. After two shots, I was sent home because the contractions went down to every hour. Two days later, I went in for another non-fetal stress test and they discovered that I was still contracting but, now my baby’s heartbeat was slowing down during them. My baby was having fetal heart decelerations.

I was admitted to the hospital and put on Magnesium , TRUB and bed rest. During a 7-day stay with fetal decelerations and contractions every two hours at the first hospital, I was air-lifted to another hospital and saw a perinatologist. After a few hours, the doctor took me off the meds and did an emergency c-section due to the fetal heart decelerations. Christian was born at 35 weeks at 4lbs 13 oz and 16 inches long. He did not require the NICU, even though he did not feed well. He only took a little bit at a time and took a long time to eat.

After we were discharged and sent home, he started to vomit a lot. At two –and a half months, we thought he had Pyloric Stenosis. The results were negative. He continued to feed poorly and vomit chronically. At four months, he was diagnosed with Failure to Thrive, developmental delay, reflux, delayed gastric emptying and Cyclic Vomiting Syndrome. After several upper GI's, barium swallows and EEG’s, he was finally admitted to the hospital. He had several biopsies of his gut.  We still had no answer on why he only ate while he was sleeping and why he would retch and vomit all the time. After 14 days in the hospital, we were sent home on an NG-tube doing a 24-hour drip. After four months of him being on the NG-tube, we still had no answers to why he would not eat and why he vomited so much. We had been to five states in America and seen several Dr.'s but still had no answer on why Christian would not eat. We went to see Dr. Paul Hyman, a motility specialist in California, who told us to take the NG-tube out. He put Christian on a bunch of different meds (Resperdol, Megace, Neurontin and Amitriptyline) that made a tremendous difference for him. Still, we had no diagnosis… But, with these new meds, he was eating and a lot happier but we needed to wean him off some of the meds due to side effects. When he came off the meds, he went right back to not eating, so we had to put in a G-tube. Through this journey, we felt like we were the only ones who had a child who did not eat or have the will to thrive. After three years of just tube-feedings, we finally got him to take a bite. We used reinforcers like toys and movies to get him through the meals. Still, with all the therapy we were doing with him, we only saw small improvements. Now all of his meals are by mouth. Even though he needs to be distracted to eat, we took his tube out. At the age of five, we went to see Kay Toomey in Colorado. Her program is great, but we do not live there; we live in Arizona. Before we went to Kay Toomey’s a friend told me about another mom who was struggling with triplets who sounded similar to Christian. I gave her a call. Finally, after five years of a long, lonely, sad and tiresome journey, I met another mom like myself with the same type of feeding problems. She too had no answers for these types of children. After seven years, yes, my son eats with reinforcers and distracters, but it is still very much a struggle to get him to “take a bite.” Now, at 7- years-old, he has been diagnosed with Failure to Thrive, Autism and Lennox-Gastaut Seizure Disorder. Low and behold, his first typical seizure was at 6- years-old with an extreme amount of vomiting. This led us to believe he was having absent seizures with vomiting for a long time.

Megan, Will and Lee

Born four months prematurely, the triplets have suffered with major feeding issues since their birth.  Reflux, aspiration, severe vomiting and fundoplications have contributed to many negative feeding experiences.  They have participated in several intensive pediatric feeding programs and received ongoing medical and therapeutic interventions.  Currently, Megan is eating 80% of her calories by mouth.  Will and Lee still require 100% of their nutrition from the G-tube but are starting to touch and taste food without choking, gagging and retching.  We are moving toward, “Happy Mealtime Experiences” for the whole family!

Kitty

When you have a sick child, everything is frightening. And when your child doesn’t eat, life turns into a nightmare. If you weren’t living with it every day, you wouldn’t believe it. I mean, how is that even possible? EVERYONE has to eat, right? It is an instinct… At least that’s what I remember from school, like breathing.

Not our daughter. Born early at only 24 weeks (1lb 9oz), she had difficulty taking in nutrition from the beginning. She had other medical issues as well, but the suck /swallow / breath concept was just too complex for one so tiny. She had to choose, and she usually (but not always!) selected breathing. Very early, she received her nutrition from a Nasal-Gastro (NG) tube, and then progressed to a Gastro-Tube (Mickey Button). To complicate matters, once she was fed, she routinely vomited her meals. The reflux severely impacted her ability to gain weight.

She had Failure to Thrive (FTT), and as parents, we were at our wits end. This was a primary, critical function of parenting, and we were not successful. Love alone could not make her grow. As first time parents, we wanted to rely on the experts, yet none of her Dr.’s or specialists could fix the problem. They would restate the number of calories she needed to ingest to grow and be healthy, like perhaps we didn’t hear them correctly the first time. While our family and friends loved us and wanted to support us, they couldn’t understand such a foreign concept, our daughter didn’t eat. “Just give her ice cream,” or, “Did you try Ovaltine?”

When a concerned therapist mentioned another mom she knew who had a similar experience and offered to share her phone number, we were excited. Finally, someone who wouldn’t think we were either crazy or incompetent. My first conversation with Shannon Goldwater was a breakthrough. Not only did she know exactly what I was going through, she invited me to a support group for parents facing similar experiences through P.O.P.S.I.C.L.E. Center®.

Here, we met other families whose children also had difficulty eating, for many different reasons. We shared our frustrations, stories, suggestions, doctor reviews and tips on meds and tests to request. Finally, a network of people who understood! Through this group, we have attended special training sessions held by feeding experts who have opened our eyes to what successful meal times should look like.

We learned of a drug that would reduce the vomiting (which it did) and it changed our life. Once our daughter was able to keep in more of the calories she took in, her quality of life improved, and we began to see weight gain.

She is now six and attending typical Kindergarten. We have progressed to only 50% of her nutrition via formula and the G- button.

P.O.P.S.I.C.L.E. has made a difference in our lives, and we are happy to work with this group to help bring a feeding clinic to the Phoenix area in order to make a difference in the lives of others.

Jack

When your child doesn’t enjoy eating for medical, physical and/or psychological reasons, a parent can feel frustrated, confused and worst of all, alone. Many people don’t understand that eating isn’t as simple as placing a plate of food in front of a hungry child and expecting them to eat. Our son Jack suffers from Eosinophilic Esophagitis Disorder which made eating solid food a painful and unpleasant experience. By the age of 12 months, we realized he wasn’t just a “picky” eater, but really disliked eating all together. At the age of five, he still struggles with eating and doesn’t always enjoy food.

At my first P.O.P.S.I.C.L.E. Center® ® support group meeting, I finally found what I was looking for. This was a group of parents, medical professionals and advisors who knew exactly how I felt. They were there to listen and empathize with me. They were knowledgeable regarding feeding therapists in our area, intensive feeding programs out of state, and they put me in contact with other parents whose children were in similar situations to mine. They gave me the educational tools to help make the right decisions regarding our child.

As our son continues make significant improvements with regards to his feeding issues, I am very thankful to P.O.P.S.I.C.L.E. Their support and knowledge assisted our family at a very difficult time. I attribute much of our success to their guidance.