Thursday, February 28, 2013

You know that feeling when you look down and see that your son has pulled out his feeding tube while you've been holding him?

It's not the best feeling I've ever had. 

It happened on Tuesday as I was getting Nate's food ready for his nightly tubular feast.  There he was, smiling, his feeding tube swinging freely from his nose. 

It wasn't totally out, but it certainly wasn't in anymore.  Since it wouldn't do any good hanging from his nose and could be a safety concern during the night {if it were to get wrapped around his neck or something}, we needed to take it out. 

And this is where Handsome meets Hero in my book.  I can't peel sunburns or pop zits, and runny noses {even on my own kids} make me gag.  Needless to say, I was not pulling the tube out the rest of the way.  I held Nate and did lamaze breathing with my eyes closed while Handsome Hero took it out and peeled off the rest of the tape.  Poor kid.  Poor me. 

You'd think this was the first time this has happened.  It's actually the second, and I'm sure it won't be the last.  This time, however, we decided to leave the tube out until Monday and see if we can get some results and maybe not need to have it reinserted.  Who knows?  Maybe he'll gain.  That is a small hope but since the opportunity was presented, we took it. 

It isn't going well.  Nate has yet to eat a single thing, though he is nursing better.  I even tried {on the advice of a friend} dicing teeny tiny bites of avocado and banana and seeing if he would feed himself with his hands. 

He won't.  I even opened his mouth and put a piece of banana inside, and he just gave me a look and popped it right back out. 

Today we had speech therapy with a new therapist and we might have had a breakthrough.  Not a breakthrough as in, "He gets it and now he's eating steak!" but more of a "Oh.  So maybe that's the problem" kind of a breakthrough.  The therapist, who I will call Ashley, because her name is Ashley, noticed that Nate turns his head away from anything coming near his mouth.  He also doesn't like to touch things with his hands.  He holds them up and away {she called it a high block or something like that}.  He doesn't even put them down during tummy time - they are in the air behind him and he holds his head up by using his stomach and back muscles. 

Now, we know he does funny things with his hands - we've always said he looks like he's flying. Just in case it had significance, I have mentioned it to each of the doctors who have treated him, and no one has attached any importance to it.

According to Ashley, these things are indicators that Gater has sensory issues, that he doesn't want to touch things with his hands or have things touch his mouth.  She says that it will take awhile for him to willingly take food into his mouth and that we can expect to be in speech therapy for some time.  She also thinks that eating is just the first sensory issue we'll have to deal with and that physical and occupational therapy are in our future.

*very deep sigh*

Okay, so this is how I feel.

1.  I don't really understand.  What she is saying makes a lot of sense in the way she presents it, but why didn't anyone else catch this? 

2.  It seems like we have several medical professionals, from pediatricians and GI docs to nutritionists and speech therapists, who aren't communicating, or if they are, we have been left out of the loop.  If you were to put all of these people in a room and put Gater's file in front of them and say, "discuss," I don't know if they would agree with each other or not.  Is it supposed to be like this? 

3.  It seems that no one has Nate's full file - I have repeated the same story about twenty times, and it is always new to the person with whom I am speaking.  Why does no one have the pertinent information?  In the hospital, a woman came by three times in one day to check Nate's I.V.  Nate didn't have an I.V.

4.  I'm pretty certain we're putting the tube back in very soon. 

5.  I'm fairly certain Jack's reverting potty issues and Ella's clingy and needy attitude are directly related to Nate's condition. 

6.  I'm totally certain that my constant state of exhaustion and need for a good cry are related to Nate's condition. 

7.  I'm absolutely certain that I hate being in this place of knowing there is a problem but not knowing if it is able to be solved or cured or if it is going to be ongoing.  But,

8.  I'm as certain as certain is that I can rest knowing that the Creator of Nate and One who loves him more than we ever could has him in His hand.

**  I am sorry if this post has been a bit disjointed or difficult to follow.  My attempts at rereading have been interrupted so much I'm giving up and just publishing it. 


  1. Beth, while I was visiting your sister, I met a girl with Synesthesia, it's condition where sensory nerves didn't separate in forming and signals get crossed. Anyway, this girl saw colors when she heard music. There are various forms and combinations including touch and taste. Could it be possible that Nate's sense of touch is related to his sense of taste? It might be a starting point for some questions. I just wanted to share in case it leads to potential insight. I hope that the doctors are able to help him soon, the poor little guy!

  2. A dear Friend memorized the Book of James(while pregnant) during a huge transition in her family. Reciting God's promises when counting it all JOY. Not realizing she was ministering to her friends that JOY is a Decision not a natural Reaction to situations at hand. Thank you! Even though the health issues Nate has is similar to Jack, you have the demands of three little people. I pray you take time to do something that gives you Joy. As well as not letting the the day to day take Joy out of the moment to moment. I miss you and your family, dearly.