Monday, February 6, 2012

Thank God for Feeding Tubes

Thank you, God, for this modern marvel of medicine.

Did I just type that?

Yes... looks as though I did.

I never, ever would have thought I would be thankful for Jack's feeding tube. When he got it, after a severe love/hate relationship with food for almost a year, we felt defeated.

A little background: When Jack was discharged from the NICU, he had an NG (nose feeding tube). He got that around 26 weeks gestation. He was already a pro. After about a month at home, we were able to take it out. Jack was eating enough to grow and we thought we were in the clear! We had heard of many micro's struggling with eating and had even seen some leave the NICU with permanent G-tubes (tummy tube), but Jack seemed to be spared of at least this one common issue.  Jack continued to gain weight like a champ and seemed very content. I remember having a wonderful first Christmas, feeling on top of the world. We thought we had cleared that hurdle. Jack had a good 6 months of drinking his bottle very well.

Then something happened and Jack stopped eating. He just stopped.

Panic Mode.

We tried everything, and I mean everything, to get him to eat. We used distraction. We fed him while he slept (yes, it's more common than you think). We thickened his formula. We added yummy tasting stuff to his formula. We even used a medicine dropper and cc by cc, dropped formula into Jack's mouth. We did a swallow study. We did an upper and lower GI study. We did an endoscopy and bronchioscopy. We met with specialists across the state. We got so many different opinions that now, when I look back at it, makes me wonder how we navigated the murky waters. 

Jack lost a pound. A pound is a whole lot when you weigh twelve.  Jack was labeled "failure to thrive" (what a cruel label) and we were defeated. We had lost the battle and Jack wasn't showing any signs of returning. Jack was starving. He was so hungry. But something wasn't "clicking" and no amount of hunger would make him eat. And he was wasting away. As parents, we were exhausted and emotionally spent. Our lives revolved around food in the very worst way possible. There is nothing more horrifying than seeing your child starve to death.

We resigned ourselves that Jack needed a permanent tube. There wasn't another answer because we had tried it all. Jack would be getting a gastric feeding tube, otherwise known as a g-tube, that looks just like the picture at the top.

The week leading up to Jack's surgery, we had to place a horrible NG to get Jack's strength up for surgery. Poor guy was miserable with that thing stuck in his nose and down his throat.

First ever outing to a store the night before surgery to get some last minute essentials. Trying to keep that NG in with lots of tape. 
May 6, 2010, surgery day. Cuddling with Grams pre-op. 

Pre-op. Getting ready for an IV.

Post op. Recovering on the Peds floor

After Jack's surgery, with a huge sigh of relief, we rested. The panic left. We knew that our boy would be getting the nutrients he needed to grow. He gained his strength back. And it gave us time to come up with a plan. We no longer felt defeated. Instead, something else. Content and hopeful. Energized. Jack needed a feeding tube like grass needs water, there was no question. We entered into a whole new world.  Of kids that are tube-fed formula and blenderized diets and of kids that just need the tube for water or meds. We have met so many wonderful people along the way.

This is national Feeding Tube Awareness week. I'll be spending some time talking about our experience with Jack's tube for the next few days in honor of the occasion. Topics will include feeding therapy, tube weaning, and living with a tube. It will be fun, I promise :)

You ask why I'm thankful for feeding tubes? Beyond the obvious, Jack had a very sick day yesterday. He had one of his CVS migraines. Each time I gave him meds or pedialyte through his tube, I thanked God.

Really, I did.

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Angie said...

Thanks for sharing and bringing awareness. Feeding issues is one of my fears. I didn't know that Jack just stopped eating one day. Looking fwd to reading more this week and hope that migraine is gone. Just curious how do you know he has one? I suffered from them before and I just can't imagine one on your little guy.

Jessi said...

Jack didn't stop eating in a day, but it sure felt like it! It was more of a gradual eating less and less... until he'd go days with just eating one small container of baby bananas. As for the migraines, Jack does the same thing each and every time he gets one. First, he wakes up and starts puking, then he acts very disoriented (shifting eyes, etc.), then moaning in pain. Last about 12 hours. Poor guy :(

Jon said...

That picture of Jack with the NG tube in May of 2010 broke my heart. He acted so uncomfortable - almost defeated himself. I suppose it's good to never forget even bad times, but that is one I wouldn't mind forgetting. His feeding tube ended up being an awesome thing, even if we felt like failures for having to go that route.

Julia said...

Your entry feels eerily familiar.. Somewhat unlike you we had feeding issues from almost the very start and our hospital stay was extended by 6 weeks waiting for him to drink enough milk.. Unfortunately that day never came and we had no choice but to do the g tube because we weren't allowed to take him home w ng tube.. After coming home feeling went from bad to just horrible and within a month of being home he stopped eating.. He now has an aversion to food.. And general oral stimuli.. He knows when it'd food vs toys abd refuses to open up his mouth and even shakes his head No!!! I hope one day he won't need the tube!! It's been a catch 22!! Love hate relationship!! I hope one day our little guys won't need them but until then it's a must!!! Hope Jack feels better from his migrane soon!! They suck! I know!!! Keep us posted!!!

Jenna said...

Hi Jack
My name is Jenna and i came across your site. You are an amazing, courageous, strong and determined fighter. you are a brave warrior, smilen champ and an inspiration. u are a precious gift and a special earthly angel. You are a super hero, super trooper and a tough cookie. You are full of life, spunk, sunshine, and smiles. You have taught of us what there is to know about life. I was born with a rare life threatening disease, and 13 other diagnosis. http:/

Marcie said...

Just like Angie, I am nervous about feeding issues. If we ever get to that point, I will know to come back to you blog for helpful information. And thank you for posting the picture of the g-tube. In my line of work (social work) we often deal with children with g-tubes but I had never actually seen what one looked like. I always wondered, but never really had any idea.

Are the migraines related to the prematurity?

Jessi said...

Hey Marcie,

We think his migraines are related to his complex medical makeup.. but it's hard to say. His shunts probably play into it.

Dee Lindsay/Mom of preemie 27weeker said...

I have a wonderful tubie baby. She is now 8yrs old and still tubed.. My heart goes out to you and complete understanding. My daughter has issues with eating from her birth of being a preemie. Now she uses it when she is sick and does not eat enough. I am hoping that there will be a day she gets it out but totally ok until that day comes. Good luck with your lil' man

Jessi said...

@dee Lindsay thanks so much for your comment! I always love to hear from people who have already walked our road.

Kaci said...

Feeding issues are one of most difficult things I have battled. Our son Garrett was born at 35 weeks weighing 2 pounds 2 ounces due to severe growth restriction. Like Jack, he ate like a champ in the NICU and we thought 'we have this'. We also fed while he was asleep, fed with distraction, tried everything!! Somehow we kept up with the fight until he was 2, and then we realized the feeding disorder was winning. We had his g-button placed last week. Of course I've read many parents say they should have done it sooner and I am feeling the same way. We put unbelievable amounts of stress on Garrett trying to make him into a normal eater when it just wasn't time for it to happen!

Jessi said...


You are so right - we can't force our little ones to become eaters when it's not their time!

Sean Carter said...

it can be such a rough time, I remember all the worries we had when our child needed a corpak feeding tube to make it through the day. But it worked so well and now we have nothing but joy