Best Mother's Day Ever: We have a G-tube Graduate!

It’s been a part of him for as long as I can remember.  Up until he was 12 days old, I was able to hold him belly to belly without worrying if I was going to hurt him.  There was no medical device interfering with our bonding time.  There weren't many tubes or chords either.  

This image is one of the final days holding him before he had his g-tube surgery. At the time he had an NG down his nose to supply nutrients to him.  

That all changed on day 12.  Looking and thinking back I was so scared and traumatized of Cohen getting a feeding tube, because to me it was like bringing a part of the hospital home with us.  It wasn't natural and it definitely didn't look typical.  I was so resistant to this little 16 french 1.0 button that was put into his belly.  But after looking at my son with this as part of his body for 5 years, it has blended into the background.  It is him in all aspects, and it has helped keep him alive which I'll be eternally grateful for.  

This is Cohen at 1.5 years old with some teething toys at his high chair. From the beginning we would treat him like any typical kid, providing him with typical feeding experiences.  

It has consumed me for almost 4 years, constantly worrying.  As a parent, this has been the hardest thing I’ve ever had to do in my entire life. Often it would consume me daily with worries and hopes and fears and sadness.  We would often take one step forward followed by 4 steps backward.  When he was little it was worrying about whether or not he was going to pull it out, when the next time he was going to vomit all over my house, and if he would ever be able to eat orally by mouth.  Then as he grew, the worries changed.  He began taking purees around almost 2 years old.

Cohen is enjoying some delicious purees.  Yummmmm!

The worries turned into: Was he going to choke? Was he getting enough calories?   Around 2.5 years old we transitioned him to a blended diet through his g-tube. Up until this point he was receiving baby formula to provide calories for him.  A blended diet is a diet that is real, whole food blended and syringed to him through his feeding tube.  My worries turned into acting as if I were his nutritionist.  Was he getting enough fruits? Carbs? Nutrients?  

And by the age of 3.5 he finally was showing many more signs to eat and be interested in food.  His list of foods began to lengthen and with feeding therapy weekly, I was trying my best to make sure he received balanced meals.  

A picture of him receiving therapy in our home.  He would be visited weekly by his in home therapists and we would also work on weekly feeding therapy up at Stanford as well.  

In mid-2018 I was able to transition Cohen off of his feeding tube, receiving no calories through it.  It was evident that his chewing abilities had improved, his love for food had increased, and he was generally a decent oral eater.  This picture below shows him eating his first hamburger (and yes it's in the car).  I love this picture and wanted to share it because it truly represents our life. Cohen is an oral eater, but mostly on his terms even today.  He is a grazer and often eats on the go. Whether that be in the car, or in line for a doctor's appointment.  I never leave the house without a cooler full of a variety of foods so that there is never an opportunity for him to be hungry.  

In order to usually have the doctor's approval to remove a feeding tube, children or adults need to prove themselves for generally a 6 month period of time, sometimes shorter, sometimes longer. What does that mean?  Being able to hold his own through sickness, surgeries, and other ups and downs of daily life, Cohen would need to prove he did not need to use the tube during these occasions.  And he did just that!  He had multiple colds in late 2018 and then in 2019 had a tonsillectomy.  I was convinced he would need to use the tube, even if to administer medications.  But because he had been weaned off it since May 2018, he was confused and honestly scared of the feeding tube supplies when I brought them out.  An hour after surgery in the hospital he told the nurses and I that he would drink all of his medications.  And by two hours post-op he was scarfing down scrambled eggs and pancakes.  To no surprise to us, Cohen was once again showing that he was a badass! 

He had proved himself and at our GI appointment last week I received the incredible news that it was time.  Time to take it out and let him be an oral eater.  Yes we would most likely still rest uneasy some days that he didn't take in enough calories or became sick that we wouldn't have our safety net "tube" to fall back on.  But he had proved himself and was ready to graduate.  

When we took it out two nights ago, the entire family was chanting, “Bye, bye tube!”  My daughter Isla seemed to be the happiest.  I know she didn’t understand to the caliber of what this moment represented for us and for him, but she couldn’t have been more proud of her brother.  He walked over to throw it away in the garbage and suddenly hesitated.  He began to cry.  He didn’t want to throw the tube away. “I want my tube back,” he said.  This reaction wasn’t something that crossed my mind anticipating this moment for so long.  I thought it would be a celebration like none other.  This wasn’t happening to me, but to him.  Of course he would be attached to something that he had always known to be part of his little body.  That plastic button often got in the way, and he would sometimes utter, “Watch out for my tube” if someone would brush up against his belly.  It made it challenging for him to do easy things like go belly down on a slide, or be able to give strong hugs. 

So as we were holding him and trying to wipe away his tears, we shared and brainstormed as a family all of the things he could do now with his tube removed. Here is just a small list of what we came up with:

-Go down on my belly on the slide.

-Wrestle with my sister

-Swing on my belly

-Roll down the stairs or grassy hill

It's crazy to think about how long this journey has been for him, but it just feels like yesterday that the nurses at Ann and Robert H. Lurie Children's Hospital in Chicago were training Ryan and I on how to care for our newborn baby boy.  This process and journey didn't come easy and took an entire tribe of people to make it a successful one.  

Thank you to everyone who has helped make this possible.  All of his in-home therapists, his school therapists, his collection of nurses, his feeding therapists now, both of his grandmas for getting trained in feeding him when my husband and I had to leave.  Thank you to Kelli, his first nanny who learned for a hot minute how to feed him.  She gave it her all.  We are so proud of our little man.  For so many families that at one point in time have to learn and care for a child with a feeding struggle, this post is for you.  I hope it brings hope to you to know that you aren't alone and that you are rockstar parents!  Your child may graduate sooner than later, or maybe they will be feeding tube dependent for life.  But I can honestly say that I'm so thankful Cohen had a feeding tube because it kept him healthy and alive for these past years.  

https://youtu.be/8mfm_Icv2Vw