Encouragement Feeding Program

Tomorrow we head to Charlottesville, Virginia to attend the Encouragement Feeding Program at the University of Virginia Children's Hospital. It is an intensive outpatient program designed for children like Olive who have long term tube dependency. It's been a long two and a half years tube feeding our child, and we finally reached a point where we decided that we needed something to change our course. Local therapies have been unsuccessful in helping Olive learn how to eat orally, so we are hoping that taking the drastic step of intensive program will at least kickstart Olive's motivation, hunger, and eating skills. Unfortunately, there are no intensive inpatient or outpatient programs in Minnesota, which is why we are hoping on a plane and setting up camp in a hotel room in Charlottesville.

Olive at 2 days old

There are numerous intensive feeding programs around the country.  Some that come up frequently are Children's Hospital of Orange County, Seattle Children's Hospital, and Kennedy Krieger Institute in Baltimore. There are many others, and there is even one relatively nearby at the Children's Hospital of Wisconsin in Milwaukee. However, UVA comes highly recommended to us from one of our all time favorite doctors, Dr. Ronald Hoekstra.

November 2012

He is a neonatalogist who cared for Olive frequently during her 94 day stay in the NICU at Children's Hospital in Minneapolis following her premature birth.  It is not a good thing to have him care for your child, as he deals with the sickest of the sick, but luckily we didn't learn this until after the fact. He has over 35 years experience, and he is absolutely the best of the best. Many of the doctors we encountered are great, but Dr. Hoekstra stood out as the most genuine and caring. I was always there when he would do rounds, and he spent so much time with me, answering all of my questions and going so far as to draw diagrams of Olive's lungs and her brain when she was dealing her most difficult challenges like intraventricular hemorrhages and underdeveloped lungs. I never lost him in medical jargon, and he always had a kind and encouraging word, with his visits always lifting me up during a very difficult time. I really can't say enough good things about him.

Lucky for us, he is also the medical director of the NICU follow-up clinic at Children's, which we regularly visit in order for them to follow Olive's progress. She is part of a few research studies, one of which aims to track long term outcomes of micropreemies like herself. Therefore, we get to see Dr. Hoekstra and the wonderful staff of the follow-up clinic where they do a medical exam as well as developmental exams to track her progress. It is from this experience and from Dr. Hoekstra that we first learned about the UVA feeding program. He mentioned it at Olive's first visit in the fall of 2012, and he said it was too early to think about it then.

NICU Follow-Up Clinic May 2013

In the spring of 2013 we had another visit where he explained to me that he has sent a handful of children there over his career, and it has always been with great success. He still felt it was too early at that point, but at our last visit in April 2014 he finally said that we should pursue an intensive feeding program since Olive was making little progress. He said there are other closer programs, but his advice was that if we were going to take the time and spend the money and energy to do this, we mind as well go for the best program from the get-go. 

UVA was an obvious choice for us because we trust the advice of Dr. Hoekstra. He put us in touch with the coordinator of the program, Polly Bickley, in April. From there, we applied to the program through a lengthy application including medical records, questionnaires, and a video of Olive. Olive was accepted in June, and we were put on the calendar for October. We really don't know exactly what to expect. The information packet has a general outline, and it will include obvious things like occupational and speech therapy (as feeding therapists are one of those specialties), but also fun things like preschool and a fun with food class. The goal of the program is to start the tube weaning process in an environment of wellness and normalcy.

NICU Follow-Up Clinic April 2014

We are taking a big leap of faith, but we are considering it an adventure no matter what the outcome.  There is a lot to be nervous about. It's Olive's first plane trip. And she gets really nervous in new places. To the point where she throws up from anxiety. We will make a scene. At least at the airport. 

Our hope is that the feeding program itself will be life changing in all of the best ways. Because we need a change. We know Olive has it in her to be an eater. We just need help in getting her to realize that too. And considering some days I can't even get her to wear pants, we obviously need some outside assistance in this whole eating endeavor. We plan to update this blog as we go to keep friends and family informed about our progress and also for other families who may be in a similar situation of considering an intensive feeding program for their tube-fed child.  With that, here we go.