Fueling Life: Awareness

It's the first day of Feeding Tube Awareness Week 2017!

It's not our first,

 Nico has has his tube over 1 year now...

We are seasoned, 

Refined, 

"comfortable" in this new normal...

One question we still get answered is.

"Why is Nico Tube fed?"

I will share the short version...

Nico was born a healthy, "normal" baby on June 28th, 2014.

Gained pounds every month until around 5-7months old his weight gain stalled at 15.8lbs.

He had never been able to drink from a bottle, but my jobs made it possible to breastfeed him on demand as he slept through the night and he nursed up to 12 times daily until 11 months old.

We thought other than Torticalis and hypotonia which affected his mobility and gross motor skills that he was fine...we were wrong.

we had been down this road before 

and the signs were there that like his sister eating might be a problem.

we brought this up many times and were put off every time saying "he just needs more time".

He began choking on any solid food attempts 

and refusing to let anything in his mouth other than to nurse.

by 11 months he was "classic Failure to Thrive"

but we had networked around the healthcare providers and sought ENT, SLP, and tongue tie support.

He had oral surgery to release a severe posterior tongue tie at that time. 

It helped a little bit with solids, but not at all with liquids from a cup.

we continued to seek help from the speech language pathologist (SLP).

And we thought he was gaining weight,

 and doing fine as he had grown 2 clothes sizes and looked  more plump.

Oct. 14th, 2015 he was admitted to our local hospital for "FTT",

we were not able to leave because he couldn't hydrate himself enough even with continued breastfeeding and his kidneys were in distress.

by halloween that year we had been in hospital almost a month 

and were heading home with our baby...and a feeding tube.

We were scared, exhausted, and no diagnosis in sight.

He has since gained to 29lbs and is in 2 T clothing.

Our "diagnosis'" are:

• FTT
• Dysphagia
• Torticalis
• Sensory processing disorder
• gross motor delay
• hypotonia
• ...and a few others that are minor

We continue to offer drinks in guided amounts as he chokes still and can't drink more than 3ml in succession.

His food skills are that of a 9-12 month old:

• soft
• disolves
• non crunchy
• cut up or mashable
• learning to take his own bites
• chewing enough to swallow safely

We are also still searching and doing tests to finally get a real diagnosis,

and our most recent doctor/specialist told us he will probably have his tube until around 6 years old.

But that is because his suck, swallow, control, reflexes complete around that age.

We may still find another reason for his struggles.

But while we search we are striving to pave the way for his future with this life saving device.

Teaching him,

• hope for a future without his tube
• tolerance and acceptance of other's unique qualities
• to love his body, including his tube 
• that he is "normal" and can do anything other kids can, with the right equipment

So please join us this Feeding Tube Awareness Week in educating the community around you about feeding tubes so that my son and others like him can have a safe and happy world to grow up in.

Nico, Age 2 @ "My Belly Has Two Buttons" book launch Sept. 2016