Posts Tagged Tube Weaning

Just Keep Swimming


We celebrated Francesca’s 2nd birthday with a Finding Nemo themed party on Saturday! It was so much fun to be surrounded by friends and family. Francesca had a fabulous time being escorted by balloons, playing with her friends, watching excerpts from Finding Nemo, and blowing out the candle on her elaborate Nemo cake (twice)!

We picked Nemo as the theme for Francesca’s party based on the fact that she adores the movie. However, it was not until I started actually planning the details of the party that I realized exactly how meaningful the movie’s message had become for us.

To be perfectly honest, I normally skip the first scene where Nemo’s mother is eaten by a shark. This is only partially to protect Francesca and mostly to protect myself. I think that all parents go through an incredible and somewhat more intense than expected transformation the moment their first child is born.

The day Francesca entered the world, I became consumed with a love more powerful than I could have imagined and with that love came the equally powerful inverse of fear. Just like Marlin, every parent wants to protect their children from all harm. In the last two years, I have felt more depths of both rational and irrational fear than ever before.

There have been the more normal parenting fears of whether or not Francesca was meeting her developmental milestones, would end up throwing a temper tantrum in public, or was going to poop all over a relative stranger (which to my mortification really did happen).

And then, there have been the intense fears relating to Francesca’s health issues. From the incessant worry about her growth, caloric intake, and relationship with food to the moments of sheer panic (the kind where breathing becomes labored and everything moves in slow motion) as we sat in the hospital waiting for the nurse’s surgical report or listened to the siren of the ambulance from the inside or prayed that our infant would not have to undergo an emergency operation by a pediatric surgeon we had never met.

So, yes, I have all of Francesca’s doctors on speed dial.

As I planned Francesca’s party, I spent time laughing at and identifying with Marlin’s many parenting fears. And I realized that we are at the point of having been swallowed by a whale and a little voice is interpreting the “whale speak”, just as Dory did for Marlin and, in Dory’s words, that voice is saying “It’s time to let go! Everything’s gonna be all right!”

Today was our last normal day of tube feeding (if you can call tube feeding normal). Tomorrow we begin the tube weaning process. We are ready to let go of our fears. As I put Francesca to bed, I told her that tomorrow she was going to start to learn how to eat and I asked her if she was ready. She confidently answered “yes” (not a standard response from a two-year old). I told her that I could not be more proud.

With the help of Finding Nemo, our fundamental philosophy is to “Just keep swimming. Just keep swimming, swimming, swimming. What do we do? We swim, swim.”

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The Reality of Chubby Cheeks

Francesca has chubby cheeks!  I wish I could claim they are from eating lots of fruits, vegetables, and lean meats…or even ice cream, pizza, and french fries, but unfortunately that has not been our reality.  Francesca has never eaten those foods or any food for that matter.  All of her nutritional needs have been met by a complete formula for tube-feeding and devoted, but exhausted parents.  Our reality has been regular weight checks, infinite doctor’s appointments, and inconclusive medical testing – every waking and sleeping moment consumed with getting Francesca to do something that comes naturally to other children: to grow.

We found out on November 10, 2009 that for the first time in twenty months, Francesca was back on the growth chart at twenty-one pounds and ten ounces, the third percentile for weight.  When our doctor turned her computer screen around to show us the proof, a little dot actually sitting on the line for normal growth, the room was filled with emotion.  All of our hearts swelled with relief and our eyes filled with tears.  Contained in that little dot were so many complexities of our struggle over the last two years (see “Francesca’s Story” for a more complete picture).

Francesca is currently 100% tube-fed through a small little port that goes directly into her stomach.  She eats virtually nothing by mouth.  In the past, she has occasionally (once a week, maybe) taken small nibbles of a few foods (apple, corn chips, carrots), but to be honest, they are microscopic and calorically completely insignificant.  Her feedings are regimented, according to a clock, every four hours.  We aim to maximize the volume of formula and minimize the amount of vomit.  Everything that has gone into her or come out of her over the last year is recorded on detailed spreadsheets.  Francesca has never experienced the joy of eating.

That little dot on the growth chart not only symbolized the relief of no longer having a malnourished child, but it also represented the potential of a new and daunting challenge.  We are ready to relinquish control and shift our focus from battling for every ounce of weight gain to endowing Francesca with the power to choose and trusting that she will listen to her body, overcome her fear, and be brave enough to uncover the joy of eating.  This process of letting go is going to be both terrifying and liberating for both Francesca and us, as her parents.

Francesca has attended several therapies weekly for the last 15 months and has made absolutely no progress on her oral intake.  In desperation, I have spent many late nights scouring the internet for information, success stories, and hope.  We finally found our solution in a clinic located in Graz, Austria that has specialized in the psychology of pediatric feeding disorders for the last 20 years.  They have staggering statistics, heart-moving success stories, and a logical therapeutic philosophy.  We know we will need endless strength, but have faith that with their guidance, Francesca will someday ask for seconds at the dinner table.

We completed our due diligence, talking to parents around the world, and found nothing but hope.  I have been moved to tears over and over again, listening to the successes (and challenges) of many  families whose children have finally internalized the joy of eating (See Blog Roll).  I have found support, encouragement, and testimony of it being the most difficult and also the best decision they ever made.  Without coverage by our insurance company, we have wired our registration fee, completed the intake paperwork, and scheduled a start date of January 4, 2010 to begin their netcoaching program (an online tube weaning program).

The program will likely take four weeks.  I plan to update this blog to share our moments of triumph and struggle.  Francesca is an incredibly bright, strong-willed, resilient, and independent character.  She has taught us so much about patience, sacrifice, strength, and love.  We are ready to take this leap of faith, knowing that as we jump, there will be moments where we have no ground beneath our feet, but that we will eventually land on the other side believing in Francesca, as she talks with her mouth full.  We appreciate your support as we prepare to embark on the journey to help Francesca uncover the joy of eating.

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