The G-Tube debate
Failure to thrive... At 3 months old it was Sophia's first real red flag diagnosis. One I took very hard and very personally. At that point she was strictly breast fed and I felt like it was calling ME a failure somehow. She just wasn't gaining weight. Like AT ALL.
That could have been it. The only reason we would have needed to make this choice. As a matter of fact I went though a great deal of personal effort to ensure that we didn't need to take the road we are now on when sophia was an infant. Its always felt so extreme to me.
Over that first year of her life I breast fed, I supplimented with formula, I switched formulas five different times. She developed HORRIBLE reflux that left her crying for hours. I sought treatment for her reflux. She battled severe constipation (which made her hysterically upset) as a result of the reflux meds. I ended up quitting my job because she was ALWAYS home crying and the guilt of leaving her with anyone other then me was insurmountable..
NOTHING helped her..
I removed the reflux meds,
Stopped needing treatment for the constipation..
She STILL wasn't gaining weight.
No-one seemed to be able to figure out why.
We've been to see feeding teams, feeding therapists, nutritionists and Occupational therapists. You name it , I've tried it. Still at nearly six years old sophia is just not gaining weight like she needs to be.
We were fortunate and found a very supportive GI doctor who did everything she could to help support me keeping sophia on an all oral diet. She said to me " Im with you, however you want to combat this issue I'm behind you. But know there will likely come a day where her oral calorie intake will not be enough to support the growth and operation of her body and when that day comes. None of us will have a choice in it anymore."
She supported us when we said NO to an NG tube. ( a tube that goes from her nose to her stomach ) She supported my choice to start sophia on Pedisure at 10 months because none of the available formulas seemed to help. She gave me a script for medical grade Pedisure with more calories per serving then is available OTC. She gave me scripts for powdered carbohydrates called DUOCAL that we mixed into her purees. She hooked us up with a nutritionist who gave me the info I needed to make sophias baby food myself to ensure that she was getting whole nutrition and as many calories as possible per serving. I would sit and recipe test and calculate calories per 4 oz serving like a mad scientist.
For a very short period of time sophia was gaining, well, like she actually was ON the growth chart for weight rather then under it. It too Sophia five years to gain 20 lbs. FIVE. YEARS.
But unfortunatly it turns out that all the effort, fancy feeding products, support and scripts in this hemisphere won't help a child who just refuses to eat.....
About 6 months ago Sophia began refusing her meals. She would just refuse to swallow the first bite I gave her. She would sit for an hour just not swallowing the same one bite of food. After all my hard work to get her to a place where she was taking five ounce servings of Pedisure four times a day by bottle, greek yogurt for breakfast, pudding for snack at school, and homemade calorie packed purees for lunch and dinner she just stopped wanting to eat..
She outright refuses everything except her Pedisure and her greek yogurt.
Including her Duocal, Sleep and Seizure medications..
We were ablate track down totally powdered multivitamins that we can mix into her yogurt, but vitamins aren't calories. She needs calories.
It devastated me and her father. Its been horrible. Everyday we stress about her intake. She barely swallows her water she spits out her meds.. We just can't force her to do anything she doesn't want to do.
So I spent the better part of the last five and a half years fighting against what was always the inevitable I guess. Sophia needs a feeding tube. Sophia WILL be a tubie.
Im terrified. I've been feeling defeated to say the least and guilty for not just giving into this five years ago when I was first told she would need one. But after two surgical consults and scheduling the placement of Sophias G-Tube for early January I've decided something....
Its virtually impossible to be wrong for believing in your child. For giving them the chance to prove people wrong. For thinking that maybe with enough effort they WILL overcome the odds and do what we were told she couldn't do. There were days when Sophia LOVED her food and having a G-tube doesn't mean Sophia has to STOP eating orally or that I can't help her get to the place I originally wanted her to be. The two visions are not mutually exclusive.
She can be a tubie kid who is working towards independent oral eating while still being given the water, medication and calories she needs to be successful and strong in other areas of her life. With proper hydration she could no longer suffer from lower GI motility issues. With proper medication administration her seizures could be stopped. She can sleep at night again. We can sleep at night again.
All of this can be achieved without having to stress sophia out or force her to endure swallowing things that are clearly causing her discomfort. I am choosing now to see it as an increase in her personal awareness and a way for her to be voicing her feelings about her life. Which is a major WIN in our book.
It has caused me to persue a method of treatment I very much wanted to avoid. But really its never been about what I wanted. It always has been and always will be about what is best for her. What will help her maximize her chances at being happy and healthy. No matter what the emotional or physical cost is for me and her father. We will ALWAYS go forth with he choice that most benefits her.
It will be my upmost hope that we can get her to place where she is successful without the use of her tube. But for now we know that the method is not what matters. What matters is that she's fed. She's not stressed out and she's back on the road to success.
So yes FED IS BEST.
Sophia will be undergoing a surgery for the placement of her g-tube the second week in January. Good vibes are always welcome.
***As always thank you for keeping up with our story and I promise to get back to this blog. Having these issues and a newborn in the house cause me to put this on the back burner. But I should be back in full force by mid January at the latest. ***
