Friday, June 20, 2014

Feeding Cohen: How To Setup a Kangaroo Joey Feeding Pump

Our littlest bullfrog doesn't do things conventionally... so why should eating be any different.  For the past nine months he has required enteral feedings to survive.  He had a NG tube placed last September but was later switched to a gastronomy tube (G-tube) because he can't eat food and refuses to take in his formula orally.  Our little guy is on continuous feeds for 22 hours a day, which requires us to refill his formula every four hours around the clock.  

The idea that your child needs external resources to thrive is difficult to digest and can be very stressful at first.  We were just kind of thrust into this new life and given very little instruction on how to navigate through it.  Although, I was given a brief lesson on how to run our pump during our discharge, my sleep deprived overwhelmed mind was less than focused. So when an IV pole (which required setup) and a bag full of supplies finally arrived at my door at 11:00 at night I was feeling slightly defeated to say the least!    

I have created a video, which explains the basic steps of setting up an enteral feed.  I hope this information will become a resource for others that are trying to feel their way through this process.  

Just remember you are not alone and things will get easier as you become acclimated to this new way of feeding your little one. 

1 Peter 5:7 Casting all your anxieties on him, because he cares for you.

Life With An NG Tube
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Wednesday, June 11, 2014

I wonder what I would say to her....

I wonder what I would say to the woman I was a year ago... that exhausted woman that sat at the bedside of a sleeping, sick little boy covered in bruises from unsuccessful attempts to hydrate him. Discouraged, feeling helpless and unsure of what was happening to her perfect baby, wondering why she couldn't make him better, why she couldn't feed him, and unaware of just how sick he was.

Where would I even begin when trying to explain the course of the year that awaited her or the fight she had coming.  She was so naive to the coming events of countless doctor appointments and hospital stays that spanned across four states.  She had no idea that her precious baby would endure 50 IV sticks, 3 surgeries, countless (literally) countless blood draws & x-rays, as well as 11 hospital stays in four different hospitals before he would turn 19 months old.

The woman in that hospital room that night had no idea that she was about to be thrust into overcoming her insecurities... to be the one that would find her sons disease and then confidently present it to his unfamiliar healthcare providers.

She had no idea that soon she would learn how to run equipment that she had never even heard of up until this point in her life.

She had no idea how many times she was about to watch her child look at her through fear filled eyes, desperately urging her to rescue him from the tubes, needles, and procedures that he had to undergo.

She had no idea that her secret urge from years ago of wanting to be a nurse was about to become a reality in a way that she had never envisioned.  Or that she would be taking on that role for one of her greatest joys.

So what would I tell her...

I would start with... Your faith is about be tested so hold tight to what you know. Trust in the one you have given your life to.... the same one that you dedicated your son too.  You are about to experience some the most difficult days of your life but you will weather the storms, not because you have obtained super strength but because you trust in one that does.  You are about to experience love in the truest form from your family and friends and to see why God placed these people in your life.  You are about to understand the real reason God created an earthly church and filled with people that lift each other up when their strength is depleted.  Take heart because although you are about to face many struggles, you will also experience great blessings, so embrace them when the come and use them to propel you through the difficult times.

I believe that if that same woman could have peered into the future she would have had a few words for the me that I have become.  I think she would tell me that she is proud of me. Proud of how I stood up for my sweet baby. Proud of how I listened to my instincts when everything around me suggested otherwise.  Proud of how I learned to overcome my insecurities and speak up when Cohen desperately needed me too.

You won't hear me say this very often... but I am proud of me as well.  I'm  a constant work in progress and I'll be the first to admit that I am far from perfect but for just one moment I am going to hold my head high in accomplishment... and be thankful for my successes thus far.

The truth is we all share one commonality... one absolute for all of us....   At one point or another we are all guaranteed to experience pain.  And although it may not look the same for each of us and will certainly affect us each differently, you can rest assure we will all be changed... either for the better... or the worse.  So I will make a choice... I will allow my pain to have purpose.... choosing to bring meaning to the struggles that I have hurdled.... allowing what was intended for evil to be used for good.

My hope is that you will allow  our pain to receive its purpose through the way it impacts your hearts.  Our family does not live in sorrow or sadness but we celebrate everyday as a new beginning filled with hope and promises from our God.  We will continue to face the trials of this life, not as loners lost in confusion but as children sheltered in the arms of loving Father.

I pray that the strength that resides in our little superhero will permeate into the lives of all who hear his story, allowing our Pain to be transformed into Purpose.

Isaiah 40:28-29  "Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak"

Living In A FPIES Fog
FPIES-Our beginging
Our Little Puzzle
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