This week is feeding tube awareness week.
Since feeding tubes are such a big part of our lives I thought I would share our story on the matter.
When Parker was three months old, he had his g-button (gastrostomy button) surgically placed. He was in the hospital at the time for aspiration pneumonia which was likely caused by his fragile airway and his inability to properly manage eating orally. We were told that Parker should no longer eat or drink anything by mouth for further risk of aspiration (when food goes down the wrong pipe).
Since this was probably going to be an on-going issue and because he was going under anesthesia for other surgeries anyway, we decided it was the right time for a more permanent solution than just a NG-tube (naso-gastric feeding tube). The NG-tube is when they place the tube through your nose and down into your stomach. Parker had a NG-tube for several weeks when he was in the NICU.
This was obviously devastating news and the idea of a permanent feeding tube scared me. However, it wasn't long before we learned all about Parker's g-button and providing nutrition through a feeding tube. It turned out that feeding tubes aren't so bad after all.
This is Parker and his g-button:
This is Parker's feeding pump:
And here is the whole set-up:
Not too scary, huh?
Right now, Parker gets four tube feedings a day that run for about 45 minutes each. Then he gets a continuous tube feeding overnight that runs for seven hours. This provides him with about 38 ounces of special formula each day. We are able to very carefully track his intake and we increase it as needed with the help of a dietician from Children's Hospital.
The feeding tube (and the trach which Parker got during the same surgery) saved Parker's life. The decision wasn't easy but it was the right one for us. It allowed Parker to get the nutrition he needed to grow and to do so safely. He started gaining weight and catching up on the growth charts pretty quickly after getting the g-button. We no longer had to worry about him aspirating which could cause life-threatening illnesses. He was able to use his energy for new and different things and he surpassed everyone's expectations.
We hope the feeding tube won't be necessary forever. At some point, we hope Parker's airway will be strong enough and he will have the coordination necessary to safely eat by mouth. We have done some oral trials over the past couple of years but they haven't been successful. We won't give up though.
Right now, Parker really has no interest in putting food in his mouth. He will play with food and make a mess with it but isn't terribly interested in "eating". He does, however, like putting other things in his mouth and we encourage that to help him from developing an oral aversion. He loves chewing on toys, his chewy tubes, and anything else he can find. He may make a mess by doing so but we don't mind. That's what bibs are for.
Last night was a pretty exciting developmental milestone for Parker. We were sitting at the dinner table and I had Parker on my lap as I was finishing up my meal. There were some carrots on my plate and Parker had been very intently watching me eat. He picked up a carrot and put it in my mouth. We gave him such a positive reaction when he did this that he picked up several more carrots and put them in my mouth. When I had all the carrots I could handle, he even gave a carrot to Paul. This may not sound that exciting to someone that is not in our shoes but this showed that Parker is starting to figure out where food goes and that it can be an enjoyable experience. I'm excited to see where this will lead and will keep everyone posted.
So for now the feeding tube is our friend. There are days when the pump malfunctions, I can't get the bag to prime or Parker opens the med port and formula spills all over the carpet (which happened just this morning). On those days, I want to throw the thing away but all in all I'm very grateful to have it and thankful for all it's done for my little guy!!
