Life as we know it....with a G tube

Its been almost a month since we "opted" to go with a G-tube for Gabriel, and it was definitely the best decision for our family.  Although it took a while before Gabriel was pain-free and Trent and I were completely comfortable with the open hole in our son's stomach, we all got there.  Now, feeding time consists of priming a connector extension set and opening the "beach ball top" of the button on Gabriel's stomach and "plugging it in".  Originally a bit un-nerving, it is, thankfully, now very routine and easy, but by no means a quick fix.  The G tube doesn't address his reflux, or his resulting behavioral aversions, it simply allows us to nourish our son while we work on the rest of his issues. Medically, the reflux is being treated with high doses of Zantac and EryPed (erythromyocin to increase intestinal motility).  The G tube blows the NG out of the water in every way, since it doesn't choke Gabriel, he can't pull it out (and I don't have to re-place it), and its not affecting his development in other areas.



G tube with extension connected

Dr. O'niel is the developmental pediatrician who initiated Gabriel's hospital stay that EVENTUALLY  resulted in the g-tube placement (and a $107,000 bill from Riley!).  In a follow up appointment with him this week he said, "The day we put a G-tube in is the day we begin the work to get it out", meaning now the hard work really starts.  The plan we have in place includes weekly visits to the speech therapist as well as weekly home visits from the physical and occupational therapists.  Trent and I finally feel like our whole team is working together (along with us) to move forward and get Gabriel to eat.  At home, we are to offer him Level 1 baby foods on a spoon 2-3 times a day (Trent has now termed this "Schpooney time") in the most positive way possible.  It isn't necessarily the quantity of food, but the quality of schpooney time.  For example, I just cannot resist posting this video (Trent sounds a little like an angry bird):

 

As you can see in the video, father and son have created quite the bond in the time that Trent has been home on FMLA leave (January and February).  Trent has had a lot of hard days - in the hospital, recovering from surgery, gagging, throwing up, etc etc....but he has really found a way to make Gabriel happy.  He is a phenomenal dad, and it is amazing to see them laughing, playing, and enjoying each other now in a way that was impossible before the G-tube.  The frustrations, once abundant, are now fewer and farther between....I think they have been transferred to me!  I am finding it challenging to work full time in a demanding field, then come home and spend quality time with "the boys".  Some days, I am so tired....I get home and want to relax, but there is still SO MUCH to do, and Trent definitely deserves a break.  I like to think that I am learning to juggle everything, but I'm definitely not a pro....yet.

This month, Gabriel got his first sister....a goldendoodle who we named Lola.  It was love at first sight, and Lola and George are becoming fast friends (which is what we hoped for in the first place).  She is very laid back, smart and soft (perfect for cuddling).  Trent is showing how much he wants a girl by proxy - he calls her "Lola, honey" - a real softie.  I see I will have no help disciplining ANY girls in this house!

In other news, we are traveling to Florida on Monday for a mini-family vacation in addition to my perfusion meeting of the year.  It is our first family trip, and Gabriel's first time out of the state!  I am VERY nervous about the details....I mean there are so many things that may go wrong - can I bring formula into the airport?  How many ounces?  Does it have to be unopened?  Can we carry on Gabriel's meds?  What if we forget/lose his tube accessories?  Do we check the car seat or the stroller? Are we going to be "those people" on the plane with a crying baby? Should I pack the diapers and food for the week or buy it there? What if he gets sick while we are away? What about the re-circulated air on the plane carrying all kinds of germs?  What if someone touches him?  AHHHH.  Luckily, at our small group last week, we talked about worrying and what it accomplishes....nothing.  My mom always told me 90% of what you worry about never comes to fruition, and the Bible says, "Who of you by worrying can add a single hour to his life? " and “Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God."  So I have decided to organize and plan as much as possible and hand the rest over to the Lord.  This is going to be one great trip!