Diving into the Deep End

THE WONDERFUL WORLD OF WATER PLAY

This summer was the summer of water recreation.  We couldn’t get enough of it; mostly because we were so deprived of it the summer before.  Brady had an NG feeding tube the summer of 2012 from May – July, then a PEG G-tube insertion from July – November.  He had his mic-key button surgery in November which allowed his world to open up to the wonderful world of water sports.

When the summer of 2013 came around, we were ready.  We were more than ready as we had our first beach vacation scheduled for mid-June, a new inflatable pool for the backyard, and swim lessons scheduled for July.  It sort of felt like we were taking back control over our lives.  This disease, the setbacks, the inconveniences of life with EoE, and feeding tube were no longer going to rule.  We were back.  And it felt good.

Brady's first time in the new inflatable backyard pool



Sydney's first time in the new inflatable backyard pool



 

TADPOLES

I enrolled Brady (age 5) and his little sister, Sydney (age 3), for their first swim lessons.  They were both in the “Tadpoles” class for ages 3-6 beginner swimmers.  The first day of swim lessons brought anxiety and excitement.  To be truly honest, it was mostly nerves for me.  Sydney I wasn’t as worried about as I saw her take quite easily to the pool earlier in the summer.  For Brady, it was a different story.  Water = sensory.  Brady doesn’t do well with getting his face wet and my biggest fear was around him accidentally getting water in his mouth, or even worse, swallowing a bunch of water at one time.  That simple act could easily send Brady into a fit of coughing and inevitably, vomiting.  From there it could be a downhill spiral with Brady becoming afraid of swim lessons or the pool.  I was clearly getting ahead of myself, but it seems a mama’s worry never goes away, no matter how hard I fight against it.

It came as no surprise when the first class started and Sydney immediately jumped in and did all the instructed activities.  Her smile was infectious as she laughed and giggled her way through each activity.  I looked over to where Brady sat on the side of the pool, unsure of himself, and even more unsure of the water.  He looked pretty miserable as the instructor guided him around the pool as he halfheartedly kicked his feet.  It’s in these moments I try to push away the sadness that threatens to overcome me.  It’s sometimes hard to see one child, the younger one at that, flourish and shine in an activity, while the other more mature child struggles.

  

Brady not enjoying the kicking activity at swim lessons

Brady doing much better with kicking in shallow waters

I know that some kids just enjoy the water more than others, and that could very easily be the case here.  But sometimes I wonder if some of Brady’s struggles are the side effects of this crazy EoE disease.  Interestingly enough, Brady seemed to become more comfortable with the pool with each passing swim lesson.  Sydney, on the other hand, declined going down the “big” water slide and trying out the diving board.  Brady tried it all and I was so proud of him by the end of the two-week class.  Neither child was brave enough to go under the water just yet.  There’s always the summer of 2014 to look forward to more underwater adventures.

Sydney and  Brady loving pool time

Sydney loving pool time... our water girl.

REVELATION

As Brady and Sydney progressed through their two-week swim lesson class, I began thinking about how far Brady has come in just a little over a year with a feeding tube.  I suppose with all the water activity we participated in the past few months, Brady’s mic-key button was front and center.  It’s not that I ever forget that he has a feeding tube, more like “out of sight, out of mind” some days.   While Brady was at the pool, splash pad, or playing in the sprinkler this summer, the mic-key button was exposed and it made me think.  It’s become such a part of him and a part of who he is.  I’ve given so much thought to how the feeding tube has truly changed our lives.

DIVING INTO THE DEEP END

                          

It was not long ago, April 2012 to be exact, that my husband and I were faced with the heartbreaking decision to move forward with a feeding tube.  It felt exactly like diving into the deep end.  At night.  With a blind fold.  A total free fall that felt out of control and full of fear.  The water was cold and uninviting and I wasn’t sure if I would ever warm up.  After the NG tube insertion, we went through some pretty dark days as we adjusted to medical supplies, nighttime feeds, and the inevitable, tortuous reinsertions.   My husband and I learned to tread water very quickly, although there was a lot of exhaustion involved.

Brady braving the deep end




Okay, so technically Brady didn't jump into the deep end.  But he was brave enough to be passed down into the deep end.  Baby steps.

  COMING UP FOR AIR

By the time we reached Brady’s PEG g-tube surgery in July 2012, it felt a bit like that moment when you take that flying leap of the high dive and there’s no turning back.  Perhaps it was because of all the training we had with the NG tube that we were able to come up for air much faster this time and catch our breath.  Yes, it was a transition, but the PEG g-tube made Brady’s life much easier and more normal.  Whatever “normal” is. 

This time also marked a sense of calm with the realization that we were headed in the right direction with weight gain and tolerance of both nighttime and bolus feeds.  This also marked a time in this journey where it felt that the worst was behind us because for so long we had fought against a feeding tube insertion.  We had all survived the NG tube, the PEG g-tube and mic-key button surgeries.  Check, check and check. 

PERFECT 10

Now that Brady has had a feeding tube for 14 months, we have seen HUGE progress.  In fact, in just a year’s time Brady gained 10 pounds. Our perfect, hard-fought perfect 10.  This 10-pound gain felt nothing short of miraculous as Brady has always had a difficult time gaining weight from birth up until the feeding tube.

I’ll admit, I was a skeptic in the beginning.  I had many mother’s of children with EoE or feeding tubes reach out and say they have never regretted their decision for a feeding tube insertion.  And now I can happily say that I too, am one of those people with absolutely no regrets.  I’m a believer.  This transformation in Brady over just a years’ time is undeniably extraordinary.

It was not long ago that I would hug him, hold him and love on him and I could feel fear squeeze my heart as I felt his bones protruding through his skin.  Now when I hug my little boy, I feel substance. I feel the meat on his bones.  I feel relief.  I feel success.

My husband and I decided Brady's hard work and accomplishment of weight gain would never go unnoticed.  When Brady hit the 40-pound milestone, we threw him a "40 Pound Party", candles and all.  I was overcome with joy as I saw Brady blow out his 40 Pound candles and make his wish.  (I know what my wish is for him and for the many kids surviving with EoE.)  

40 Pound Party!

Brady making his wish.

Brady is now up to 41 pounds, up 13 pounds from his initial feeding tube insertion in April 2012.  He’s grown several inches as well.  He looks like a totally different boy to me, especially with his cheeks filled out with a beautiful smile that I cherish.  He actually LIKES his mic-key button.  He’s quite proud of it and will show it off to anyone who asks.  Brady is happy, despite this horrible disease and life-changing events that has come across his young path.  He’s happy.  And that alone helps me to deal a little bit better.



Brady showing off his mic-key button at the beach

There's that smile.

UNCHARTERED WATERS

Someone asked me the other day how long Brady will have his feeding tube.  Like most families dealing with and struggling with EoE, this is unchartered waters.  We have no idea how long he will need the feeding tube for.  Our hope is to get Brady to eat his safe foods and eventually become less dependent on the caloric intake from his feeding tube.  For now, especially with the success of the tube, it’s sticking around for a while.  And that’s okay.  Brady is growing and has finally outgrown clothes he has been in for almost two years.  This mama is quite excited about school clothes shopping this year. 

I’m just grateful we took that giant leap of faith and dove into the deep end.