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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21 Months!

Jack turned 21 months on Thursday. It was a BIG day in a number of ways. We started the day extra early with a trip to the Riley Developmental Clinic. We spent over 3 hours with a doctor, speech therapist and dietitian. We had been seeing a feeding team here, but something just told me we could be doing more and he needed more help. So, I called our pediatrician’s office and we talked about Riley’s clinic and also a clinic at St. Mary’s in Evansville. The Riley clinic called back a few days later and the soonest they could see Jack was November 15. I went ahead and scheduled the appointment, but also was placed on a cancellation list. A few days later, last Tuesday to be exact, my phone rang and it was the developmental clinic saying they had an appointment available Thursday. Of course we took the opportunity and plans came right together. A colleague was able to cover my clinical, Henry took the day off and we arranged for Kendrick to be dropped off early at school.

We started off meeting with the developmental pediatrician and a dietitian. We spent over 1 1/2 hours talking about Jack’s current eating and how to start his new plan. His 21 month stats were not too bad. He gained quite a bit of weight in the last month. He weighed 18 lbs 12 oz and was 29.5 inches tall. His weight for length fell in the 10th percentile. The pediatrician wanted this more in the range of the 25th. After we met with the pediatrician and dietitian, we headed across the hospital and down to the basement to see the speech therapist. She actually watched Jack eat and we spent another hour or so with her. We learned so much and have a lot of work to do with Jack. I think our key take away points include the following:

  • Jack has aversions to food due to his history of severe reflux. Feeding has not always been a pleasant experience for him.
  • Jack also has some sensory issues when it comes to food, but he has made great strides in this area.
  • Jack has weak oral motor skills. He cannot chew food effectively. This is why he often spits food out, he can’t chew it well enough to swallow.
  • Jack is at a high risk for aspiration. We may do a swallow study in the near future.

Our new plan is pretty detailed. Jack has 5 meals a day. At each meal he is offered 3 foods and high calorie milk. If Jack doesn’t drink all of his milk, we make up for the amount in a bottle. We also have a lot of new recipes for increasing calories. We have a whole stack of papers with tips and tricks. Consistency is the key and we have to keep Jack on schedule. This means starting our day with breakfast at 6:30. We also know Jack has the tendency to be an attention seeker, so we must ignore his bad behaviors. This includes when Jack put pudding in his hair, like he did during the appointment. At one point, the speech therapist said “he is just too smart, that’s the problem!” They also said that it takes a normal child 10-20 times or more to accept a new food. For Jack, they said this is more like 50-100. WOW! If this doesn’t teach me a lesson in patience, I’m not sure what will!

The developmental pediatrician also looked at Jack’s development as a whole. She was pleased at his social skills and speech. She was concerned about him not walking and said very matter of factually that he was severely delayed gross motor wise. Jack has a sacral dimple which can be a sign of spina bifida. When he was a few months old, we had an ultrasound that appeared to be normal. However, the pediatrician wanted to take a closer look at the ultrasound since he was not walking. We obviously were somewhat concerned with this news, but I knew he was so close to walking, I didn’t panic too much.

After our appointment, we met with my friend, Emily, for a few minutes in the lobby. Emily is the director of the March of Dimes in Lafayette and I have gotten to know her over the last year. Emily and her husband, Jeff, have three children, Lauren, Ella and Anders. Anders is 11 months old and is currently in the PICU at Riley. In my last post, I asked Jack’s Pack to please keep a special baby boy in your prayers. This special little boy is Anders. Since May, he has undergone testing for hypotonia. In the last month he has had several respiratory complications which has landed him in the PICU. With the testing that has been done, they believe Anders is suffering from a muscle and or mitochondrial disease that is effecting his muscles including his ability to breathe. This is not the news his family or anyone wanted to hear. You can learn more about Anders and keep up with updates at http://www.facebook.com/PrayersForAnders Please keep Anders and his family in your prayers. If you are interested in helping in anyway, family is collecting gift cards for gas and food. They are also asking kids to send artwork to decorate Ander’s hospital room. I will happily help get these items to the family if you want to help!

I was feeling pretty emotional after visiting with Emily and our long day of appointments, but we headed home for Jack to have another hour of therapy. Jack usually has PT on Friday afternoons, but this week we switched to Thursday because it was Sarah’s (PT) birthday. I wasn’t sure how things would go, Jack was exhausted and only napped in the car. Sarah walked in the door and Jack was excited to see her. He pointed over to his car in the corner, so Sarah said “Well Jack, get up and walk to your car!” I was barely paying attention, but looked up just in time to see Jack walking to his car. He literally stood up from the middle of the floor and walked. I was speechless! His walking continued down the hall, to the kitchen, all around the house. It was like Jack knew how to do this all along. Whatever it was, we were ecstatic!

There was some other significance to the day. On September 20, 2010 we went to our 19 week ultrasound to find we lost Baby B. We were also told that things did not look good for Baby A and it was likely a chromosomal issue. So, for Jack to decide to walk on this day seemed like more than a coincidence!

This post has ended up much longer than I planned and I have piles of laundry to put away, so I will leave you with some pictures! Have a great week!

Looking at the fish! His favorite part about Riley!