To thrive or not to thrive.

Thrive: 1. To grow vigorously; flourish

This has been the question at our house for quite some time.  Is King thriving?  Is King labeled "failure to thrive"?  What does that mean?  For King, failure to thrive meant that he was no longer on the growth chart for weight to length. I have a tendency to get swept away in the details of things like this.  I like to argue the facts and make my case.  The day that we went to Vanderbilt for our last weigh in, I had my case in hand and I was ready to argue.  King's Godmother came with us that day.  I prepared her for what I knew would take place.  It turned out to be one of the most emotional days of King's diagnosis.  Once I allowed myself to listen to what the dietitian and doctor were telling us I couldn't argue any more.  I began to feel selfish that I would put my thoughts and opinions ahead of my son's best interests.  I wake up every day praying that King and Emma Virginia will be afforded the very best in everything.  How could I deny King this opportunity to grow?

I think that allowing the feeding tube was a difficult decision because we had to admit that King was not thriving.  He was not growing vigorously nor was he growing.  We also had to admit the severe deficit that his pancreas had presented and would continue to present.  When we went for the requisite 9 month check up our pediatrician, Dr. Meredith, told Mama and I that King was sustaining the weight and length from 3 months prior; he said that King was essentially in his 6 month body.  At home I was watching King crawl and begin to pull up, babble, coo, and laugh.  I had already made the decision to allow the feeding tube when Dr. Meredith told us this stat from King's chart.  I knew that I wanted my precious son's body to withstand the vigor which he so yearned to display.

Everything worked in harmony.  The surgeons (we had several other surgeries in addition to the gastrostomy) worked together to schedule the surgeries back to back, the pulmonology clinic answered my zillion questions with certainty and compassion, Alex and I were on the same page, and King did not have a serious respiratory infection going into surgery.

Since I have a hard time letting sleeping dogs lie (no, I really do-I would much rather gaze into their eyes and squeeze them) I began to ask questions of anyone with decent hearing and the decency to listen.  I was able to find several innocent souls that I could pepper with feeding tube questions.  God bless the nurse that answered the phone at our local Gastroenterologist's office.  About 20 minutes in she finally referred me to a website that "would be increeeediblyyy helpful."  I see where she was going with that, but that website scared the hell out of me...there was a lot of Mad Mommy syndrome happening in that neck of the woods. After reading nearly 50 comments on the site I pictured the feeding tube to be a geyser overflowing with bile, popping out of it's designated space every other day, and creating a ring of fire on sweet King's belly.  King's pulminologist, Dr. Brown, was tasked with undoing the horror of that "increeeediblyyy helpful" website.  If Dr. Brown made a strong enough case I would probably eat Vienna Sausage. (I feel sick at the thought of the can.)  She really is "increeeediblyyy helpful"!

Guess what?  It wasn't so damn bad!  I sat in the surgical waiting room praying and cursing myself all at once to accept what was happening.  I don't know why I had such a hard time accepting the gastrostomy at first.  I like to be positive and own change.  That is how it works best for me. I prayed to Mary that she would help me to love this new part of my son's body, I prayed that I wouldn't wince when I saw his red flesh, I prayed that I wouldn't be squeamish and he would be able to tell, I prayed that I, of all people, would be able to teach him to be proud of all parts of his body, I prayed that I would be able to parent him as he got used to this "new body" and the new opening from which he would be fed at night, and I prayed that I would forgive myself for having to pray so hard.  Just before they called us back for the post-op consult I felt myself ease into this new role.  My prayers worked.  It was amazing.  I still had a hard time looking at the surgical sight at first; I was scared.  It took me a few days to get into the swing of things. In the meantime, Alex was a champion!  I also talked to another mother who I think the world of, Lauren Casevechia.  She promised me that it would get easier and that I would be an old pro in no time.  You were right, Lauren.  You'll never know how good it was to hear your voice on the phone that day:)  My dear friend, Meryl, allowed me to go on endlessly as I presented my spiel on feeding tubes and the other maladys which we were working to conquer. PS she is a nurse who doesn't need an extravagant explanation when it comes to feeding tubes or anything else.  Gee, Meryl, it sure helped to put it all in words:)

I can now honestly report that King's feeding tube, Walter the Schwillderbeast, and I are pals.  He and King get along quite well with only mild GI issues.  Emma Virginia has gotten to know Walter and approaches him with only slight trepidation which is quite the deal.  Emma Virginia fears nothing.  She takes the bull by the horns...no, literally, I feel sure that one day we will find her shaking a bull by his horns.

Ok!  I am going to stop "milking" the feeding tube story.  Gotta love a pun.

Oh, and also, if you are considering a feeding tube for your child please note that our experience has been NOTHING like what I read on that unhappy website.  I do understand that some of these issues can present at a later date and each case is different.  Currently, there is no volcanic field upon my child's stomach, there is no rebel feeding tube, and the ring of fire is nowhere to be seen.  I'll be sure to keep you updated if and when issues worth discussing arise.