A CHILD’S STRUGGLE TO LEARN TO EAT

Categories: Family Stories

Emily Klinges

Emily Klinges

Michele and Eric Klinges of Clearwater were first-time parents and excited for their baby girl to arrive. Michele had gestational diabetes, so she and Eric were nervous about how this might affect their child. When Emily was born she was whisked away to the NICU while mom recuperated, and soon they headed home to begin their new life as a family.

Michele struggled with feeding her tiny baby, because Emily was not interested in breastfeeding or taking a bottle. Dehydration would set in and Emily would become sick, requiring several visits to the emergency room. The doctors determined that Emily had acid reflux, so at three months of age they tried a round of medication without success. Emily was going 8 to12 hours with no liquid, and the doctors were very concerned. Emily was diagnosed with “failure to thrive,” and Michele spent hours researching what could be wrong with her little girl.

During Emily’s third month the doctors realized that the situation was dire, and they put in a G-tube (gastrostomy tube) so that Emily could receive fluid and calories directly through her abdomen. Every night, Michele and Eric would get up two times per night (every 2-4 hours) to refresh the nutrients in the tube so their little girl could get the nutrition she needed. Michele continued to look for solutions to Emily’s problem and was hopeful when she located a clinic in Palm Harbor that offered a feeding program. However, the program was only one-half hour per week, and it made little difference. Finally, Michele came across Happy Mealtimes, a four-week intensive feeding program at All Children’s Hospital. The program seemed perfect for Emily, but she would not be eligible to enroll until she was 18 months old, and there was also a lengthy waiting list.

Finally the day arrived when Emily could enroll in Happy Mealtimes, and the family left their home to check into the St. Petersburg West Ronald McDonald House (RMH). Nervous about what they could expect, the parents were ecstatic to see the beautiful house and all the amenities it offered. A lovely patio and playroom for little Emily made them smile, and they realized their little girl would be happy here during their stay.

By the second week of therapy, Emily had already made great progress. Before treatment she was only drinking three to six ounces of liquid on a good day, but after the second week she was up to 10 to12 ounces per day. For the first time in 18 months Michele and Eric found themselves only getting up once per night to feed Emily instead of the twice per night routine they had followed previously.

The Happy Mealtimes program is modeled after other nationally respected feeding programs. The program provides multiple daytime sessions over a four-week period, requiring the families to stay nearby. The Ronald McDonald House is perfect for families in the program like the Klinges who do not live close to All Children’s, because they do not have time to go home in between treatments. The clinic makes feeding fun, using feeding techniques that make it look like they are playing with the children. The staff is cheerful and kid-friendly, making it easy to understand why Emily is excited to go. This is a huge relief for Michele, as being away from home and her job is stressful. Emily also receives occupational therapy to work on stretching her cheeks, using her back teeth, moving her tongue, chewing exercises, and more.

Because the RMH West House is so close to the hospital, Michele and Emily walk back and forth to the House between their five visits per day to the clinic. After they finish the four-week program, she and Emily will still come two to three times per week for treatment visits. Michele comments that All Children’s Hospital is one of the best hospitals in the country, and their program has a 70% success rate of tube removal within a year of treatment. She is excited to note that just in the past two weeks, Emily has experienced a decreased reliance on the G-Tube.

Michele is grateful for her amazing boss at Acclaris who has given her all the leave she needs, especially since Emily has been constantly sick with a compromised immune system. She is also very grateful for Kid-A-Rama Daycare in Clearwater, which she says is “amazing.” They feed Emily through her G-tube and help out in any way they can.

Like many families, Michele now loves RMH, commenting, “It’s wonderful, friendly, and accommodating. I have my own space, meet nice people who make meals, and the rooms are clean and welcoming.” When her in-laws came to visit, they were very impressed. Michele was nervous to come to RMH because she had no idea what to expect, but says that it’s “more than we could ever ask for.” Eric comes after work to stay each night, because he likes the house and is eager to support Emily, who has always been a very easygoing child.

Staying at RMH has also given Michele a new perspective on their situation. She has met other families with kids going through difficult times and notes, “We’re the lucky ones because this can be fixed, while others are dealing with much worse medical issues.”

Emily now eats tiny bits of food, a few noodles or pureed baby food. She drinks Pediasure for nutrition, and what she doesn’t drink goes into her tube. Her stomach has begun to change and now tolerates more within a smaller time frame. In just two weeks, they are putting 50% less food into her tube because she is eating.

Did you know that one in four children experience some type of feeding problem? Some feeding issues prevent children from eating enough to grow. In 2014, the Ronald McDonald House of Tampa Bay cared for seven feeding program families who stayed with us a total of 223 nights.

We are hopeful that this experience for the Klinges family will become a distant memory once Emily learns to eat normally and become the healthy child she is destined to be. In the meantime, RMH has earned a few more fans in our community, and we are thankful that we are able to care for families like the Klinges when they need us most.

 

Author: RMHC Tampa Bay