The Button

When Smiley Boy was born, we were told that he had to do three things before he could go home: he had to weigh at least four pounds; he had to maintain his own body temperature; and he had to eat on his own. We were also told not to expect him to do any of this before his due date--June 4th. At the time, all I could think of was his weight--he was so incredibly tiny!!!!! He did grow, and he did maintain his own body temp so he could be taken out of the warmer, and he did both of those things before his due date. However, he was on the ventilator until April 30th(eight weeks), so we couldn't even begin to work on bottle feeds until then. By the end of May there had been almost no progress with the bottle. I had had several people ask me if there was any talk in the NICU of sending him home with a feeding tube, but no, no one had mentioned it to me.

Once school got out, I moved in with Ronald McDonald and was at the hospital all the time. Then I was able to see more clearly how little progress he was actually making, and I did finally ask the question--what about sending him home with a feeding tube? Up to this point, the feeding tube being used was an NG tube that went through his nose, and I assumed that was what we were talking about. I could see that it wasn't completely practical for at home because taking it out and putting it back in would be complicated for someone who wasn't medically trained (me), but once I started asking questions, I learned that a tube would surgically be placed directly into his stomach, and milk would be poured into a large (60cc) syringe and through the tube to his stomach. Hmmmm.

This was a strange day because it was almost as if the doctor had been waiting for me to suggest it; once I started asking questions, the ball rolled--and quickly. The OT who had been working with SB on the bottle couldn't believe it when she came in the next day and he was being taken down for a barium swallow as a preliminary to decide if he qualified for the surgery.

Anyway, the first conversations about surgically placing a tube happened on a Wednesday afternoon, and he had the surgery the following Monday. The only stressful part of that for me was that he had to be put back on the vent for the surgery, and because the pain meds kept his system sluggish, it took a while to get him back off of it. After so many weeks of waiting to get rid of that thing, I really had a hard time with this.

(Wow, this has gotten long.)

The g-tube was a yellowish-brown tube about 15 inches long that had a stopper in the end of it. Once the surgery site healed, it would be replaced with a more practical port that would only have a tube attached when it was in use. That happend about six weeks later when he went for hernia surgery; Dr. C. installed a "Bard button" that we could close off when we didn't need it.

When we initially talked about installing a tube, all the nurses said, "Oh, he won't need it for long at all! Once he gets home with Mom and Dad taking care of him and in his own routine, that sucking reflex will kick right in, and that tube will be out in no time!" That was ten months ago.

So what was the point in this whole post? May 3rd, we will be going back to see Dr. C., and he will remove the button! Smiley Boy's eating has taken off tremendously, and we haven't used the tube in three weeks. It has been an unexpectedly long road, but the ride hasn't been too bad, and we've met some wonderful people as a result--namely, the amazing speech therapist who has been working with SB on eating since August. We'll talk about her another day.