In a previous post, I mentioned that Wendell was tube fed until we spent a month at Hershey Penn State Feeding Clinic (http://www.pennstatehershey.org/web/feedingprogram/patientcare/services/evalclinic). I highly recommend this program, even if you live out of state. Most of their work is with Autistic kids, kids with Intellectual and Developmental Delays, and kids with medical concerns. They have a high success rate, even with kids having severe eating/feeding disorders. Here is our story, from the beginning…
Wendell was induced 4 weeks premature and weighed only 3 pounds 14 ounces. The doctor was concerned that he wasn’t growing at a significant enough rate, so she scheduled an ultrasound. The cause could not be identified, and after consultation with another doctor, she decided to induce labor as soon as possible. After 15 hours of discomfort, stress, and failure to progress, they prepared me for C-section.
Wendell was born at 11:24 pm, and by 10:00 am the next morning, they whisked him off to the NICU at another hospital. He had a low platelet count and required a platelet transfusion. It was two more days until the doctor released me and I got to see him again. I spent as much time there as I was permitted. For four weeks, he was tested for this, poked for that; x-rays, cat-scans, MRI’s, EEG’s, EKG’s.
During these four weeks, Wendell was fed my breast milk through a nasogastric tube (NG-tube). He couldn’t get the hang of the “suck, swallow, breathe” reflex that fully developed babies do automatically.
He needed to weigh at least 5 pounds before he would be released to home. We had to successfully pass an infant CPR class. We had to bring in our car seat and demonstrate that he would fit correctly and safely. We were taught how to insert and remove the NG-tube on a weekly basis, switching nostrils each time. We were given a continuous feeding pump to hook up to the NG-tube at night so a prescribed amount of calories could be pumped in overnight. Because of the feeding pump, we were equipped with a heart and lung monitor and instructed that anytime he was put down to sleep, we needed to attach the leads and run the machine.
We were scheduled to see pediatric specialists for all the things they found “wrong” during the four weeks of testing. There was the cardiologist for the 3 holes in his heart (fortunately, by 18 months, all had closed on their own without surgery). We saw a geneticist to determine what “syndrome” he might have (to date, nothing has been identified). We saw the neurologist because he suffered a brain hemorrhage, either before, during, or after birth, no one was ever sure. There was a Pulmonologist, Gastroenterologist, and a few other “ologists” I don’t remember.
The first year was rough. After several futile attempts to get Wendell to drink from a bottle, we resigned to the NG-tube. If you’ve never had to insert a skinny tube into your infant son’s nose, insuring in is properly set in the stomach, I must say the actual task is not that difficult. However, when said kid starts screaming and thrashing the minute you approach with the tube, I’m not sure who was traumatized more. Wendell’s dad (the ex) preferred that I do the dirty work while he held the kid down, then comforted him when I was finished. I know this is the root cause of some of our (mine and Wendell’s) difficulties today.
The look of fear and hatred in his eyes was often too much for me. After 11 months of that nonsense, and no progress toward eating or drinking like a typically developing infant, I made the executive decision to have the Gastroenterologist perform surgery to put a gastrostomy tube (G-tube) in Wendell’s stomach. His dad was against it, but he wasn’t the one torturing his son on a weekly basis. Night feeding with the pump continued, but we were no longer required to use the heart and lung monitor.
L to R: Shot of G-tube in 2003, Before removal of G-tube February 23, 2011, After removal.
We still lived in California at the time, and saw various specialists at Stanford Children’s Hospital, and Children’s Hospital in Oakland. OT’s worked on developing mouth muscles, but every time I approached with food on a spoon or in my fingers, it would send Wendell into a screaming fit, and reduce me to tears. The damage had been done. Feeding through a G-tube was much less stressful than the NG-tube. We continued to see specialists, but never saw any progress lasting more than a few weeks. He’d always revert back to refusing to eat or drink. The G-tube was always there as a fall back.
In 2005, Wendell and I moved to Pennsylvania. His dad and I divorced. We set up with new specialists and still attempted feeding with practically no success. With a doctor’s supervision, I even tried giving him nothing but water through the tube for 48 hours in an effort to make him feel hunger. It’s hard to explain eating to someone who is always fed through his stomach and on a schedule. And remember earlier I mentioned he never developed the “suck, swallow, breathe” reflex, which is the foundation for eating.
The new gastro doc suggested the Hershey Penn State Feeding Clinic in 2006. After research, I decided that it would be better if I could get Wendell toilet trained first. I’ve learned over the years that one major undertaking at a time with him is the most effective teaching method. We embarked on that journey with only moderate success. It wasn’t until 2007 after school let out and I switched to cotton underwear that we started to see success. It took 18 months before I could claim victory the end of 2008. (As an aside, I met DJ in September of 2008.)
In 2009, we started the process of getting evaluated for the Feeding Clinic. Finally, February 1, 2010, we started the day treatment in Hershey. We spent 4 weeks there, staying at Ronald McDonald House during the week, and going home for the weekend. I committed that once we started, we would not do any feeding through the tube. I even insisted the ex spend one week in Hershey with Wendell learning the correct protocol because past experience taught me that unless instruction came from a professional, my directions were not followed.
Dr. Williams and his staff were excellent to work with. The process involved 5 to 6 meal opportunities a day, trying a variety of foods and textures. The first week was primarily data collection to determine the best strategy to “teach” Wendell how to eat. Limiting the time spent at the table didn’t work well, because he quickly learned that if he sat for the 20 minutes whether he ate or not, when the timer went off he could leave the room. In the end, we utilized a check sheet; initially, he was required to eat 20 bites before he would be permitted to leave the room. The faster he ate, the sooner he could get out and play. When he mastered the 20 bites consistently in 15 to 20 minutes, the number of bites was increased.
At the end of the 4 weeks, he was discharged with a treatment plan of 28 bites for meals at home and 20 bites at school. In 4 weeks, Wendell went from all liquid meals delivered through the g-tube, to eating and drinking everything by mouth. We started with mostly soft foods, yogurt, applesauce, blended soups. The number of bites required steadily increased as he improved.
I think we were up to around 40 bites when his dad came for his week long visit. Even though the Ex participated in the training and was verbally given a refresher course before I left my son in his care for the week, his desire to be the “good dad” literally wiped out the months of hard work DJ and I put in with Wendell. Gone. Back to square one. It took 2 to 3 weeks to get him back on track. This became the pattern, dad visits, we have regression, we retrain. Many times I wanted to give up and go back to the G-tube, but DJ kept me strong and helped push forward.
These six pictures demonstrate Wendell’s over-stuffed, lip protruding, pouty “I hate you Mommy for making me eat so I’m not going to chew or swallow” look, which he can maintain from 5 to 45 minutes.
I did however, continue to use the G-tube for medication. I was not sure how Wendell would handle swallowing pills. After 6 months, we started giving his meds orally, and he took to it surprisingly well. I talked with the gastro doc about taking the tube out, which we did in February 2011.
Now, 3 years after the Feeding Clinic, eating for Wendell is still a major undertaking. Some meals take as long as 2 hours. He needs constant prompting to chew and swallow. We’ve tried various token reward systems, even taking away his favorite hats (Hats, Hats, TOO MANY Hats http://wp.me/p3cAwk-1J) if he doesn’t have a good meal. On a positive note, he is eating a variety of textures now. Peanut butter sandwiches, scrambled eggs, and many times has the same meal DJ and I are having, just cut in very small pieces. He has a tendency to shove numerous bites into his at once.
I figure it took 18 months to toilet train, and he had gone 8 years in diapers and pull-ups. Being tube fed for 10 years, it will take longer for eating to become second nature. And of course there are the visits from Dad which always set us back some. Fortunately on that front, Dad is visiting less frequently, but for longer duration. We aren’t there yet, but we’ve come a great distance already. I truly hope we are on the final stretch of this particular journey. I’m ready to move on to the next great challenge for Wendell, showering by himself.