Feeding Tube Awareness Week 2013

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Last February, we celebrated Feeding Tube Awareness Week with our post here

Here is a partial excerpt from the original post:

After Jack had surgery to repair his hypospadias on November 10, he had trouble breathing and was admitted to the PICU at Riley Children’s Hospital.  There wasn’t much improvement in the days following surgery and he then began showing some other symptoms with his belly. On Monday, November 14, Jack went back to surgery and they found he had a perforation is his duodenum.  The recovery from this surgery was very slow as Jack’s stomach was not working.  After weeks of TPN nutrition (through his veins), Jack had a G-J Tube placed. We were grateful for the tube to provide nutrition for Jack and also allow us to bring him home for his 1st birthday and Christmas.

Jack had his feeding tube for around 7 months. Jack progressed very quickly from continuous jejunal feedings to just needing additional feedings at night. Around March, he was able to take everything orally. After 3 moths of not using the tube and proving he could gain (some) weight, we were able to have the tube removed. You can read about that here and here!

Looking back on the last year, it has definitely been an adventure. While Jack progressed from the feeding tube, we have still had many struggles. When Jack went in for his surgery in November of 2011, he was getting all of his nutrition from a bottle. When we weaned him from the feeding tube, Jack went back to taking his formula from a bottle. We had attempted some solids before surgery and Jack wasn’t interested, so we didn’t push it.

We began seeing a feeding team at St. Elizabeth around March of 2012. They gave us some ideas on introducing solids and helped with his caloric needs. We saw the feeding team monthly through the spring. At one point, we began cutting back on his formula to make him more hungry. This didn’t work and he lost weight. While we did make some progress during this time, it felt like we weren’t heading in the right direction.

In September of 2012, we visited the feeding team at Riley. We came home with TONS of new information, recipes and rules. In September, Jack was getting most of his calories from a bottle and swallowed very little food. We learned he had very weak oral motor skills and couldn’t chew well enough to swallow most foods.

Since September, we have been very faithful to his feeding plan, increased his occupational therapy to once a week to help with feeding and put in a LOT of hard work. When we saw the feeding team at Riley in January, they were VERY pleased with his progress. We had instructions to stick with the plan and we also started a new drug, cyproheptadine, which is an appetite stimulant.

Since Jack’s January 3rd appointment, we are pretty much bottle free! He is drinking all of his high calorie milk from a cup with a straw AND he has gained over 1 whole pound. Jack tells me he is hungry, is willing to try most foods and we couldn’t be more proud! We still have work to do on his amounts of foods and being consistent, but WOW! The appetite stimulant was certainly the push we needed. 

So, while Jack no longer has a feeding tube, we still want to do our part to share awareness for tube feeding. I believe Tube Feeding Awareness Week also brings light to feeding difficulties in general. Eating is something most of us take for granted. Of all of Jack’s complications from prematurity, this has most certainly been the most stressful.

Happy Feeding Tube Awareness Week and Keep up the good work, Jack!

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