Saturday, June 18, 2016

G-tube Update

I shouldn't stop writing. Because when I try to start up again? I don't know where to start!  It's been the fastest 6 months I think I can ever remember. The last time I sat down to whittle away at my thoughts was a couple of short months after Grandma Jo had passed away.  My life had changed in an instant and the hole left was deep.  She had consumed every waking and sleeping minute for so long I didn't know how to continue.  But life keeps moving at a fast pace and little glimmers of our times together still hit me throughout each and every day.

What I didn't know is that the months after Grandma's passing would be a whirlwind of events where Zachary would need my undivided attention.  While Zachary's weight gain has always been a constant struggle since his first weeks of life, we always had held out hope that we could get him to grow enough to avoid alternative methods of making him grow.  I tried so hard to get him to eat, counted the calories, added all the extra calorie boost.  Deep inside I think I knew I could only try so hard.  No matter my efforts he just wouldn't grow and was having consistent dips in his weight.  Meal times were getting more and more frustrating and unfortunately there's a part of this process that makes the mama want to blame herself. Blame that I'm not doing it right.  That I'm not feeding him enough.  Not trying hard enough.  That it's my fault.

Looking back?  It wasn't my fault at all.  Zachary's body just couldn't do it on his own.  He couldn't eat the amount of calories his body requires to grow even the littlest bit.  So early spring brought an NG tube - a tube in his nose to pump Pediasure into his tiny tummy.  We spent a few days in the hospital waiting to see if it would help and ended up coming home with the NG.  Oh how those days were stressful.  Trying to keep the tube from coming out, going back to the doctor to get it re-inserted and the torture that was for my boy was almost enough to make this strong mama break.  Thankfully it was decided that the extra feeding support would make a difference and surgery was scheduled.

The Friday before Easter Zachary had g-tube surgery.  Medicine these days truly is fascinating.  His stomach was pulled up and stitched to his abdominal wall and a button was inserted in his belly.  When we open the button we can attach a tube and he has Pediasure pumped straight in.

I'll never forget surgery day.  Peter and I sat in the quiet waiting room while our boy was in surgery.  We paced the floor watching the television screen on the wall like hawks for updates on how Zachary was doing.  When the nurse came back to tell us everything was done and went well, my stomach flipped.  She left the room and I'll never forget Peter's simple words.  "Well, we have a tube baby."  Tears began to flow.  "I'm sorry little man" my heard cried.  Again I felt like I failed, that it was my fault my boy was now in pain and his stomach would never look the same.

We are now almost 3 months into this new journey and I'm SO GLAD we made the decision to get the g-tube. Mealtimes are still a massive battle.  Of course I want him to continue to learn to eat by month.  But the pressure is off.  If he won't eat?  It's okay - he's still getting calories.  We definitely have not necessarily arrived to the weight gaining finish line.  He's been gaining but also losing, and as we adjust his intake by tube we've had lots of vomiting.  It's exhausting and very time consuming to give him his feeds by tube during the day.  I watch his every move hoping and praying the food stays in.

This is our new path and I'm now so glad we're here.  We have help and hopefully he will grow.  Zachary is our bright light and always smiling joy.

A couple of prayer requests:

1. That we would be able to figure out a feed schedule that help him grow and not vomit!

2. We have been waiting months for insurance approval of a medical crib for him.  Zachary is hooked to a tube each night so he needs to be contained.  Unfortunately he can climb out of a regular crib.  For now he is sleeping in a porta-crib so we would love to have a bed for him SOON!


  1. We have followed your journey on face book. Thanks for sharing what you are going through. It helps us understand better. Caring for a special child is the hardest job God can call us to. But He also supplies the strength that is needed. You are doing well in the job God has given you. Thanks for sharing your prayer requests. We will remember you. God bless.

  2. You are an awesome mom, Jess! Thank you for sharing this journey and letting us all follow along.