Tuesday, January 31, 2012

The Kid with the G-Tube

When we met him, he weighed 4 pounds 9 ounces. Not a bad start to life considering that he was a twin and was born at 37 weeks. Thank you dear, dear midwife for inducing me. His twin weighed 6 pounds 4 ounces which looked pudgy in comparison to Mr. Scrawny.



But honestly, we didn't freak out. Max started growing and was eating fine. His appetite wasn't as hearty as Mia's but not enough to cause concern. Then I started giving them a bottle in the evenings when they were about 4 or 5 months old. Yes, I nursed twins. Yes, it's possible. No, it's not amazing. Or very discreet.

Max wasn't cracked about his bottle. Actually, I think we tried 4 different brands until we found one he would tolerate. That was our first clue. Then we introduced solids. That was met with much gagging, sputtering and vomiting. 

At his first birthday party Max chose the plate over the cake. I love this picture though because he looks healthy and squishable.

Those months were a little stressful. Who am I kidding? They were very stressful. Here is an already tiny kid who doesn't want to eat and then throws up the little food he manages to swallow. You want to know the most fattening foods on the planet? Ask me cuz I know.

I vividly remember that one doctor appointment (there were many) when his sweet doctor looked at him standing in his little nakedness on the table and said, Ok, he needs to see a specialist. We all breathed a sigh of relief.

What was the problem? After many tests we ruled out allergies, abnormalities in the stomach, esophagus, intestines and colon. But we did find that he has situs inversus. You know, where the heart and stomach are flip-flopped inside his chest. Totally unrelated to eating issues, they finally decided.

Instead he was diagnosed with oral aversion. They described it this way: most of us gag when something hits the back of our mouth. Max's gag reflex kicks in at about this front teeth. What? Well at least we finally knew what was going on. 



They put a feeding tube through his nose for a week to see if he really would gain weight. Oh YES he did! They did surgery and placed a button in his belly called a g-tube. It is the coolest thing ever invented! We can put nutrition directly into his stomach.

Thank you Jesus!!

The second thing they did was sign him up for occupational therapy. Which was so super helpful. We soon realized that his mouth wasn't the only place sensitive to textures. He would not even touch sand or pokey balls. It was actually quite funny. The therapist gave him shaving cream to play with and he was like, No thanks! We finally convinced him to drive a matchbox through it and then he spent the next 5 minutes trying to clean the truck with a towel. 

Thank you Jesus for therapy!!

Max graduated from therapy in a little over a year and we thought ok, our troubles should be over. The kid can chew, handle chunks bigger than a grain of salt, and even swallow without spewing. And there is not nearly the pressure to eat because we can pump the most fattening milk right into his belly.  

Sounds uncomplicated right?

For some reason this silly little crazy monkey of a kiddo still doesn't want to eat! Max is now 5 and still gets feedings thru his G-Tube after breakfast, lunch and dinner, unless he can drink the milk by himself, plus he gets a bonus feeding while he is sleeping.

Max helping with a tube feeding.

Yes, my son does eat. He eats a little at every meal and has been known to put away an entire slice of pizza, but it's just not enough to keep him growing. He weighs about 35 pounds which is really good for him. He is just super picky and super duper slow. I just rolled my eyes.

My daily prayer right now is for Max to feel the physical hunger that makes him want to pig out. And spiritual hunger for Jesus too.

In case you are wondering, Max is right on track at school, counting to 110, learning to read, running, tackling and 1000% boy. Yes, that's 1000%.

And this son of mine is so stinking funny and lovable and stubborn and silly. I feel really blessed to be his mama. He is embedded in the tenderest place of my heart.

And God is so very good to us. At least 400 times I have thought, what would have happened to my Max if he would have been born in other situation? What if his family didn't have access to incredible medical care? He would have either starved to death or be suffering from malnutrition and brain damage. 

Thank you, thank you Jesus!

If any one out there has a child with a story similar to Max's or that uses a G-Tube, I would so love to talk to you!!




Update on Max:
He is almost 10 and growing bigger and stronger. He is so proud of himself for weighing in at 64.4 last week. Yes, he still has a g-tube but we only use it once a day and we have swapped his high-calorie milk mix for a homemade smoothie. After we made the switch, we started to see a jump on his growth chart! 

As I was figuring out the recipe, I found myself worrying and became hung up on counting calories. God told me to chill on the calories and focus on better nutrition. God knows what he's talking about.

Max's PowerSmoothie Recipe:
2 medium avocado
2 T olive oil
5 T coconut oil
1 T fish oil
2 T flax oil
1/2 C kefir
1/4 C grape juice concentrate
spinach or kale, if I feel especially energetic
vitamins

Vitamix it, divide into 8 oz. containers, freeze until needed. 
Because avocados discolor quickly, we pop one container into the fridge for the next day's use.

1 batch =  (approx) 2,150 calories, 20 oz.

Any other tube parent out there want to toss ideas back and forth? 

6 comments:

  1. Our little girlie that died at 4 months had a G-tube & yes, they are wonderful! She had so many other problems that getting her to eat would have been terrible! We had her on a pump that gave it to her over a certain amount of time & the last several weeks of her life we had it on a continual drip & boy did she gain weight. A friend of mine has a little girl with chromosome problems & she has a g tube too. She gets milk & her medicines through it & does eat some pureed baby food 3 times a day. I too am thankful for the medical help available for such things & can't imagine the hopeless feeling if you had a child with problems like this & couldn't do anything for them.
    Natalie

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    1. oh natalie, i'm so sorry. i remember hearing about your sweet baby. so glad the g-tube took some of the stress off of you! hugs.

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  2. Last week Max came up to me in the hallway and opened his arms, looking so sincere about giving me a rare hug. Then he stomped on my foot and ran away :-). I love this post and I love that boy of yours.

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    1. oh. my. word. thanks for seeing the good in that son of mine. :) he is so busted.

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  3. Hi! You don't know me, but my mom sent me this link knowing that I would find it interesting. I just had to comment cause I can so relate (although it has never gotten to the point of needing a g-tube). We have 1 1/2 yr old twins and I can honestly say the biggest challenge has been feeding them! Even back when they were just on milk, feedings would take forrrevverr. And solid foods have been such a struggle too! Crying, gagging, pushing away,distracting, you know...
    It's just a very helpless, frustrating feeling thinking "this kid is not getting enough nutrition and it's up to me to fix that"... they've always been lil peanuts for their age and so there's always been pressure from the doctors to get them gaining. I totally know all the high-calorie, high-fat tricks too! :) It feels like we've had countless appts with docs, pediatricians and dieticians.
    I say with a very thankful heart that things are getting better though! The last month their appetite has seemed to actually be there! PTL! :)
    Wow, anyway, that was a long comment, but just wanted to say thanks for writing this... it's nice to know someone out there understands!
    Monika

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    1. hi monika, great to hear from ya! sorry you can relate so well. it is such a helpless feeling. God's grace is always there!
      and it DOES get better. as they get older you can bribe them to eat. :)
      blessings to your family!

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