Day 4 - G-Button 101

Just a warning, this post is techy, better stuff another day:)

As we sat in the NICU day after day, continuing to work on feedings, it became apparent that Eisley just did not have the reserve to successfully consume the needed calories on her own.  This was prior to her heart repair and the cardiology team had a goal of her being 4-6 months old and 10 pounds before surgery (as well as some other cardiac changes).  No way was I just going to continue being in the NICU with Eisley until surgery was complete.  We began petitioning to come home.

Soon after we were told going home with an NG (feeding tube through the nose to the stomach) was unheard of from the hospital we were in (due to some unfortunate outcomes of prior patients).  Eventually, our persistence paid off.  Dr Anderson heads the NICU and felt we could handle it at home.  She got the ok from everyone else...and then I got cold feet.  How to manage this with a not yet 2 yr old at your side wanting to help?  Eisley had already pulled out her tube several times on her own.  I was also concerned about being overwhelmed with it at home and not being able to get Eisley back in to have the button placed.

We decided it was best to proceed with having the G-button placed.  This meant a transfer to Children's so the anesthesiologist from the cardiac team could watch over E for this procedure as well.  Eisley had a puncture mark near the button and then a longer incision at her belly button - it used to look like a snowflake and turned into looking like a cat's mouth/nose.  We came home 2 days later.


3 weeks later



July, taken to document her scar, but shows the tube feeding hooked up.

 

Some of Eisley's supplies, frozen breastmilk, bag for tubefeeds, spoon, NUK brush.

As Daddy describes it, it looks like the valve to a beach ball right over Eisley's stomach.  Surprisingly to me, many people thought it would go into her belly button, but goes directly to her stomach instead.  Inside there is a balloon filled with water which holds it in place.  Management is pretty simple, kind of like basic plumbing.  The extension tube, when attached allows fluid to flow in or out, otherwise nothing will come out of the button.

For a couple weeks we had a 2 oz syringe and just used gravity to flow the milk in.  Not a quick process and once holding the syringe, you can't exactly set it down.  If you went too fast, Eisley spit up.  I decided this was not the best solution for us and requested a pump.  This means lots of supplies, a new bag daily, extension tubes, and pump rental, about $500 monthly, which fortunately insurance covers 100%. 

Of course we've had a few snafoos as well.  The first one being a night of a huge thunderstorm we had been out in, hubby out of town, picked up E to put her in the swing and pop, out came the button!  Most of the water had evaporated so there wasn't much holding it in.  The oncall nurse from home health care talked us through replacing it.  Just the other day Lexi pulled it out, she burst into tears and told me right away.  I think she was trying to stop Eisley from pulling on the tube, but hopefully that won't be a regular occurance.

Without having the nursing background, Daddy has come along pretty well with all the cares.  Tristan and Keira are not far behind, they can run the pump and help put things away when Eisley's feeding is done.  I sure miss my helpers now that school has started, but soon I'll have Lexi trained too!  Although this is not exactly the route we had envisioned for Eisley, the button does have advantages.  Sometimes it is nice to just hook her up, push go and get other things done.