"Tubie" care crash course

One of the things we constantly get asked about having a "tubie" is... "How do you do it all?" Quickly followed by "I wouldn't be able to do it!"
Well here is a quick list, if you answer yes to any of these then let me tell you a secret. YOU COULD DO THIS TOO.

1. Are you a functioning adult?
2. Are you capable of loving someone or something more than yourself?
3. Can you bathe yourself? Or Generally clean any skin surface to where you don't smell?
4. Can you do laundry?
5. Can you follow written and verbal instructions from medical professionals?
6. Do you feel you have common sense?

I think as parents we constantly compare our "skills" with other's and that's not right.
We don't have the magic formula or really anything special that others don't have.
We love our children and want them to thrive no matter what that looks like.

Now that we have that out of the way let me tell you more...
As a parent of a tubie you will need #'s for these things:

"DME"- that is shorthand for your supply company, find one that is good about 24/7 customer care and reliable on delivery schedule.

GI-  gastroenterologist is pretty much a given since sometimes the reason for a tube is malabsorption or reflux.

Genetic counsel- it's always good to try to get a clear picture of your child even down to DNA, sometimes it can definitively tell you what is wrong.

Pediatrician that is willing to "hear" you, not just go by facts and figures.

Speech/physical/occupational therapists- you may need 1, 2 or all 3 of these at any time in the tubie journey make sure they hear your concerns as well.

And possibly the hardest person to find, but really maybe the most valuable...a babysitter.

I am not joking or exaggerating in the least. Having one who is comfortable and capable with your tubie is hard to find. As a parent who is still in search of that elusive team member I dream of a time when my husband and I can just call someone and go be "us" for as long gone as we need as often as needed.
Some families qualify for home health or some other assistance, but often that is not the case and the mental/physical exhaustion is inevitable.
Take heart if this is you...you are not alone. I pray that all of us find them soon.

Get involved on support sites, blogs, whatever social media platform you prefer should have them. It's a great resource for ideas or the chance to just vent frustration or share joy in what new things are happening. Sometimes only people who have been where you are or are currently going on the same journey will appreciate things the way you do.

I hope this has been helpful whether new to the tubie life or just curious. More to come...