One
year ago, Gavin and I packed up our car and said good-bye to the miracle
workers at the St. Mary’s Feeding Clinic and all of our friends at the Ronald
McDonald House headed back to real life.
I will never forget the mixed feelings of gratitude for the progress
Gavin had made in those eight long weeks mixed with the feeling of sheer panic
that set in as we went out on our own to continue to feed Gavin in the real
world. Thanks to the incredible help we
received at the clinic, Gavin had gone from eating five ounces of yogurt on a
good day to eating just over 30 ounces of a wide variety of pureed food and
nibbling on some solids. He was
completely weaned from his feeding tube for all nutritional needs. I’d say we reached all of our realistic goals
for the eight weeks!!! In my head, I
knew this progress was incredible and it was our time to go back home and
continue to move forward, but of course the mom in me that wanted to see her
little boy eating birthday cake and a hamburger was slightly disappointed that
we hadn’t met those unrealistic goals quite yet. Leaving was bittersweet.
Looking
back today over the past year, I am amazed at the transformations that have
occurred in our sweet little boy. He
eats, really eats!!! Hamburgers, cake,
broccoli, carrots, you name it, Gavin eats it!!! We still have our struggles for sure and we are
not quite at the finish line of Gavin’s feeding journey, but for the first time
I know we are close! I don’t think anyone
in Indiana would recognize Gavin today. He
has become your typical three year old, full of life and energy that I
attribute completely to being off the feeding tube and eating solid foods. He has a new level of confidence with both
food and people that we never saw while he was tube fed. Eric and I are more than proud of our little
boy and how far he has come this past year.
It is
hard to believe it has only been a year since we finished at the feeding
clinic. It feels like a lifetime
ago! I am happy to say that the memories
of tube feeding Gavin have faded away. I’m
not going to lie, there were days that I thought ‘how easy would it be to just
tube him some PediaSure now and not have to deal with this battle?’ I never thought I would look back and see
some of the positives of tube feeding, but it was easy. While I rarely see Monster Gavin during a
meal, he has found new ways to sabotage mealtimes and remind me that we still
have issues. A few months after
returning home, we started transitioning Gavin to more solid foods and reduce
the volume of pureed food. With all the
motor exercises Gavin had learned in Indiana, he was able to chew pretty
well. We worked on modifying foods and
bite sizes to avoid gagging and vomiting, and he gradually became comfortable
with different foods and textures. He
was and is very aware of the food that he is eating and will ask for certain
things to be modified slightly. For a
while he would ask for mesh with some foods, or he would request a smaller bite
size. For better or worse, I tried to accommodate
these requests, provided they didn’t seem like they were meant to derail a
meal. Usually we would use mesh for a
couple of bites and then be able to move on without it. Overall, I think Gavin has finally
transitioned to solid food incredibly fast considering he wouldn’t even eat a
cookie a year ago!
The
process has been challenging to say the least.
While Gavin has made incredible progress and we are lucky to be where we
are now, it is hard not to get frustrated with the day to day struggles. Meals can take FOREVER! Chewing solid food requires more work on Gavin’s
part and isn’t as simple as accepting a smooth puree to slip down his throat in
a matter of seconds. Suddenly, Gavin has
a little more control over the eating process, which is not always a good thing! My bag of tricks is quickly emptied, and I
find myself wanting to scream ‘JUST EAT!!!!’
Encouraging self-feeding has been another challenge. In typical three year old style, Gavin has
days where he has no issues and appears to be starving. He can polish off his whole meal completely
on his own by some miracle. Thankfully
we are starting to see this more and more!
Other days, Gavin wants nothing to do with food, and I end up feeding
him each bite. As long as Gavin is at
home in his usual eating routine, he is fairly successful. Meal times are speeding up and he is taking
more initiative to eat. All bets are off
when we leave the limited structure of our home. Gavin goes to preschool
Monday/Wednesday/Friday from 8:00 – 1:00, where he attempts eats lunch. Most of the year, Gavin would come home with
his entire lunch completely untouched and starving. Recently, we have changed our approach and
send him to school with a small portion of snack foods that I know he will
eat. I started off giving him 1/16th of
an apple cut in thin strips, ¼ of a granola bar, and a couple of teddy grahams,
and he ate it ALL!!! Granted it wasn’t much
volume wise, but he received so much positive reaction from his teacher and all
of us at home, that he started to realize that eating a little food was an attainable
goal that he wanted to meet. Gradually I
have increased the amount of food to ¼ of an apple, ½ of a granola bar, and a handful
of teddy grahams. Two out of three days
he’s been coming home with a clean plate, and the other day he has at least
eaten all but one of the foods! Our next
step will be moving to a sandwich.
Weight
has also been a struggle this past year.
Poor Gavin is confined to a chair half the day eating a decent volume of
food, but for whatever reason, the calories just shed right off. He just has too much energy and runs around
burning all that precious food off!! We
have put him on a high fat, high calorie diet, and are finally seeing some
growth and weight gain. Gavin drinks
whole milk mixed with half and half, a tablespoon of sugar mixed with his
yogurt, unsalted butter on everything, heavy cream and oil in pasta, sugar and
butter or cheese in all vegetables…basically he eats what doctors tell all of
us not to. I foresee issues with weight
at the other extreme when it’s time to wean Gavin back onto a normal calorie
diet!
Appropriate
for springtime, April will always be a special time for our family with
exciting new beginnings. Gavin and I
left Evansville April 5, 2014, happy to be home with our new little eater. Ironically, almost exactly one year later, April
6, 2015, we are anxiously awaiting the arrival of our second child, another
little boy. We are truly blessed! Gavin is very excited to be a big brother,
and he has even offered to teach his little brother how to eatJ. Let’s just hope this child will not need
quite the same assistance with eating, but we are prepared if he does!
Again, thank you to all of our
friends and family for your incredible support.
Eric and I could not have made it so far on our journey with Gavin
without all of you. I especially want to
thank Eric for all of his love, support, and dedication to both Gavin and
I. I know I could not have made it one
day without you, Eric! Gavin, I hope you
are reading this someday and know how much love went into your journey. While I hope you don’t remember the
struggles, I hope you see the scar from where your feeding tube once was and
know we are so proud of you for all the challenges you have overcome. We love you Gavin!
