Rise or Run?

Fear

We've all experienced it,

and if we are at this point in life probably overcome quite a bit of it.

What do you do when your family and friends "FEAR" your child?

In this life though tough, we see people rise to the challenge and come along side us to help create our new normal.

But we all know at least one person, whether a friend or family member who doesn't.

• In some cases they are very vocal  
• Other times show favor to your "typical" children over your Tubie,
• Still other times it's a distinct hesitation and uncomfortable air when they are around your family.
• And it can be a quick change due to experiencing an emergency medical situation

I will tell you about my mom, 

she is kind of a mix of all of these.

She is and has been super supportive, helpful around my house or willing to take my older girls for the night, 

But the thought of taking Nico and being the sole care provider just really makes her uncomfortable.

At first we were learning how to use all Nico's equipment and so I didn't notice how out of sorts it all made her, then over the last 18 months I began to catch onto bits of conversation like,

"well we will be there for one night so we will take the kids so you can have a date, and then you can come pick Nico up and take him home for the night okay..."

Or

"kelz, I got trained in CPR at work this week, but it hurts my neck so in an emergency I don't know how I would do?"

And so I recently asked her if she would ever be comfortable taking Nico too.

She said "Yes, but not unless you were close by and available because I am secretly afraid he will choke on something and that he could die on my watch."

I tell you this story because my mom has seen me have to remove food from Nico's airway, and I was a breath away from having her call 911 because he had it lodged good! We both knew without saying how close it was, but I got it out.

My mom loves her grandchildren and 4 of the 8 have a special need of some kind and she has adapted into a very knowledgeable Grammy, but one who isn't afraid to let us know her limits.

She has a healthy FEAR and respect for the things that could go wrong.

But the difference between her and some other's is she is not doing it to be mean, and she does rise to the occasion when confident.

What do you do when the "FEAR" of your child becomes abusive to your family?

Is say abusive because giving someone ultimatums or the opinions I've heard said to the parents of these kids is emotional abuse in my opinion.

And you work to hard keeping your kids safe to be spoken to that way ever!

Such as...

• "you allow the doctor to put that tube in and we will NEVER babysit your kids again"
• "well if it was my kid he/she wouldn't behave that way, I wouldn't allow it"
• "you must not being doing it right"
• "can't you do that somewhere else! it's gross" (bolus feeding in public)

You have two choices...Rise or Run...

I don't think we should try to force people to want to be around our kids/family, 

but I also now wouldn't hesitate to let those people know how saying things like this are not okay.

We would also not be around people who said things like this, as we are teaching our kids that people's differences make them special and we still treat them with respect.

But...

If you choose to keep associating with them then you need to go into it with the strength to know you are doing what your child needs, 

feeding tubes aren't given for no reason,

That you can stick up for yourself and your family and should,

That being angry will only hurt you so develop a thick skin.

Find a group of people who you can be around who aren't afraid whether online or in person.

How To Build Your "Emergency Kit"

Going Out with a Tubie

 New or Seasoned

 

One of the  most stressful new experiences with our son was going OUT...

even if it was just going to be a few hours.

We looked like we were moving away from home, quite literally.

• Multiple bags
• extra syringes
• extra formula
• snacks for him and his sisters
• all the creams and tapes
• extra extensions
• Blankies, toys, etc.

You name it we had it not only for our older children who one was still in diapers, but our new "Tubie" who had this new device that we were finally comfortable with taking care of at home but God forbid we had to step foot out our front door.

My Husband hates packing a whole bunch of items with us anywhere,

He has PTSD and that just makes him a little (or a lot) OCD.

Clutter just sends him to the moon and his mood soon follows suit, and we would have to go home early for him to decompress before he shuts down completely.

Something had to change!

My goal was to attempt getting us out of the house with the least amount, but still everything we may need in a feeding tube emergency.

We got a an small emergency kit from our hospital after surgery.

I insisted; since we live almost 2 hours away from a hospital capable of helping with his tube, and in Montana you never know what the weather will do so that trip could take a lot longer in the snow.

But I added to it and now it all fits in the diaper bag, or even a big purse.

And my 6 yr old daughter can even find what we need this way!

Keep in mind some children have trach's, colostomy bags, multiple other sites/needs to work with and you will need to adjust your packing accordingly to fit your needs,

This is just for 1 Mic-key kid who can eat like a 9-12 month old by mouth.

Nico's Kit

1. 60ml piston syringe
2. 14mm foley catheter
3. 12mm foley catheter
4. 1 old, sterilized mic-key
5. 2 sheets tagaderm
6. 2 250ml bottles formula
7. KY jelly
8. small bottle water
9. 1 tube nystatin/mupriocine 
10. 1 tube calmoseptine
11. wipes
12. 4 diapers
13. 1 complete outfit weather compatible 
14. 1 extension
15. 2 nutragrain bars
16. 2 rice husk snacks
17. 1 5ml syringe capable of deflating mic-key balloon
18. 4 sheets gauze
19. Small hand sanitizer
20. Chew tube or nuk brush

**he usually has a lite jacket on or winter coat, and brings one small toy with**

This all fits in my diaper bag which is a Mrs. Smith bag with a zippered insulation spot and messenger style strap.

This works for us much better for short and long trips.

Longer trips: we would add enough food to last the days we are gone

  PLUS an emergency 2 day cushion, 

on top of the pump/pole/charger,

 and more diapers and clothes.

We have also learned to request that family members get a cheap highchair and Pack and Play.

 So that we don't have to pack all the medical supplies as well as these bulky items.

This has been agreeable with all of them thus far without issue,

 and we thank them for helping us keep Nico safe.

Streamlining your packing can save you a lot of work and time as most of these supplies can stay in the diaper bag at all times. 

Happy Travels Super Tubies!

Let's get these amazing kiddos out into the public!

**I am not affiliated with Mrs. Smith company in any way,  nor am I being compensated for this statement**

"Life Support"

Fueling Life: Support

"Support"

Is a verb, it requires ACTION!

What action have the supporters in your feeding tube journey done?

Ours have been amazing, and I hope your's have as well.

They are the unsung hero's of our son's medical adventures,

The ones there in the middle of the night, wee hours of the morning for surgery, 

joining us in all the help we need whether it be:

• Financial
• Spiritual
• Emotional
• Physical

They have allowed us to endure bravely the things required of us.

 Like watching and waiting for our son to come out of yet another invasive procedure.

Like my Dad 

Who drove 2 hours to get there the morning of Nico's G-tube/Fundo. 

Because he knew we needed him, It makes me cry remembering exactly how much we needed him.

Or my Mom, 

Who has been there to hug me, call me, challenge me when I was about to lose faith in myself, the doctors, and God. 

Like my Sisters,

One who is willing to take on our older children at a moments notice and we know they will have the time of their life playing with cousins and not worry and wait in a hospital.

The other who took on a challenge and agreed to help me with a crazy book idea,

and did a wonderful job that I won't ever be able to fully pay her back for.

and has been a listening ear since distance makes physical help limiting.

My friend Mary,

Who has allowed me to vent and has taken the most amazing photos of this journey,

and deserves so much recognition.

To the friends and family,

 who promote our book and feeding tube awareness, even when they may be overwhelmed with the topic.

Friends and Family like:

• Nana and Papa
• Becky and Cy
• Aunt Eva
• Pat and Gloria
• Linda 
• Jesse Butler/Publisher
• Tabitha
• Alyssa Flores/Reporter
• Jc Penneys Salon Team
• Mt. Youth homes staff
• Lori
• April and Tyler
• And many more...

It's allowed us to get to where we are with book sales, news segments, and reviews.

These supporters have served as a foundation to prop us up when we were at our lowest or felt defeated by what our son's future may look like.

You all continue to give us the courage to keep looking for answers for Nico.

You are invaluable and we love you all.

How can you support a Tubie Family?

If you know one here is how:

• Learn to use the equipment
• Call them to see how they are doing
• Visit them if possible while in Hospital
• Take their other children, or if you know how to use the equipment then take all
• invite them to your home
• be supportive of raising feeding tube awareness
• Pray, chant, send good vibes whatever your spiritual good will is then focus it on them once in a while.

Even the smallest things are greatly appreciated and make more of an impact on long term health and success than you could know.

We can't and shouldn't do this journey alone.

Thank You For Your Support!

Fueling Life: Positives

Positives?

"How could an adaptive device like a feeding tube ever feel positive?"

This was my thought leaving the hospital with my 15 month old son...

 and since we have seen many, and come to love his tube.

Let's count the blessings of how a feeding tube is fueling Nico's life:

• 10+lbs of weight gain/maintenance
• 5 clothing sizes
• eating food at meal times
• playing and active with his sisters, and cousins
• physically almost caught up with his motor skills
• loving little man
• in a community with amazing supporters and cheerleaders who "get us"
• able to stay hydrated fully
• good medical team
• supportive extended family and friends
• smart
• Happy
• He's "famous" and inspiring others, thanks to "My Belly Has Two Buttons" book

Having a feeding tube is not the end of the world,

and as a parent I want you all to know...

• an invisible illnesses doesn't mean nothing is wrong
• we see doctor's regularly and if he could be without it he would
• we ARE good parents
• he IS happy
• he can play and do things like other kids
• if you want to ask intelligent, non-judgemental questions be my guest, but if you are just asking something to make it seem like you would do a better job with him then don't.
• we would love for you to come hang out with us, feeding tubes aren't "catching"
• it is safe for him to be watched/babysat so if we ask you to then you ARE CAPABLE
• If you want to know how to support us as a family, come learn how to hook him up and give him water...I am happy to show you
• I am NOT wonder woman, you would do just as well in this situation. It takes practice.

Let's not pretend that all parts have been positive, but a lot of the important ones have.

Because of that I will always be proud to say, 

"My son Nico has a Feeding Tube and it saved his life!"

No matter how long he has one.

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

Heaven needed him more...

While our Nation seems at war over what rights women do or do not have,

 my Twin sister was fighting a battle all her own.

One that ONLY women can do.

This is a true women's right movement,

The choice to be strong when you feel broken, 

and bring a baby forth you know you won't be able to bring home.

Whether you are Pro-choice or Pro-life is not the issue in this instance,

All that matters is a baby's heart stopped beating and a mama who loved him had to make choices.

D&E, induction, or go into labor on your own?

All risky, all a heartbreaking end to pregnancy.

I have always been absolutely proud of the mother my sister is, 

Any child born to her is going to be cared for, healthy and loved beyond measure.

But I do have to say, until this moment I didn't realize I could be MORE proud of her.

2 miscarriages for her, Multiple for our younger sister and one of my own have taught me she is a fountain of reproductive knowledge and support. 

But a stillbirth? 

This is something completely different. 

You knew for sure the heart was beating, body moving, baby growing...

You had made it past the supposed "scary part" where everyone is just counting the weeks until the magic #12...

The part where you can for sure tell friends, family and shout it from the rooftops 

"We are having a baby!"

But to be in an appointment past the magic 12 and there be no heart beating where you knew there was one before? 

That for a mom is the stuff nightmares are made of...

and I believe was in the top pregnancy fears for my sister as I know it was in mine.

Well she has now lived it.

She has handled it with a grace and peace that I have never seen,

She is the one keeping other's strong and consoling them when she should be consoled.

She is proving that when a woman makes a choice she can move mountains.

And that a woman of faith is not a weak and cowed person, 

they are strong because they have hope for the future weather it be here or in heaven.

She has done this all despite being alone with her other children because her husband is away training for a medical alert dog.

When she told him about the loss of their unborn son he wanted to come home.

She told him No, not because he didn't need to be here with her.

But because she knew that watching and waiting for her to deliver this child would be more painful for her whole family, and the dog was needed more.

Yet another choice my strong sister made that impressed me in this tough circumstance.

In the days preceding the news she made the choice to deliver her son WHOLE.

I only say this because at the gestational age he was his body wouldn't have survived a D&E.

She wanted to see her son, Hold him, let him be born with dignity and love.

To use this to heal her broken heart and mend herself. 

Having done what she set out to do,

Be his Mother, 

Something she had dreamed of from the first moment she knew he was coming.

Something she had prepared herself and her other children for with anticipation, now never to be.

My own daughter asked me "why did God take the baby away?", 

My only answer was "Heaven needed this baby more..."

How else do you explain life and death to children?

It's a hard subject for Adults.

I have seen more teachable moments in this circumstance, 

More times where Nicole could have been angry, lashed out, 

but instead she has shown her children a loving example of how to deal with dashed hopes and tough circumstances.

She herself has drawn strength from the compassion of her kids and the child-like faith that they will see their brother in heaven.

SHE knows she delivered a child,

 but to those outside they don't know that... 

• No maternity leave to recover from her 16+ hours of labor, 
• No healing time from the daily marching on of life to grieve, 
• No baby in her arms to distract her from the after pains that leave you exhausted and on edge.
• Back to school just one day after, and back to work at less than a week.

McCleod Eugene was born the day our nation was Marching for Women's rights, and my sister "marched" right along with them in another way, 

her own way. 

She may not look "fine" but she will be.

She said it best...

Nicole:

The day I went in to deliver my child, many other women were marching at capital cities across the United States.

They say they were marching for women's rights, reproductive rights, the right to choose what happens to their bodies and the right to abortion.

My heart on many of those subjects are vastly different than the women who participated, but I was expressing my own reproductive rights, the right to choose what happens to my body, and the right for my son to be born whole, no matter his gestational age or what the medical community considers him. 

 The point is that we have rights as women. Some of us choose to stick up for the opposite side and it doesn't make us oppressed. I believe if many women saw the masterpiece I got to hold in my hands on Sunday morning that they may feel the burden I do. I was a mother, a wife, a daughter, a sister, a friend, and most importantly a woman that day doing something only a woman can do...bring forth a child from my own body. In all it's painful, heart-wrenching glory it is going to be one of the top 6 blessed and WOMANLY moments in my life. #iamfree #allwoman #daughteroftheking

Do you get time away?

While having a house full of 8 kids this week (yes, I said 8) ranging from 1-7 years old,

 it made me pause and think about how often we as parents of children with special needs get time away.

These kids have multiple diagnosis, disorders, allergies, delays etc...

• Autism
• Dysphagia
• G-Tube
• Apraxia of speech
• Celiac with Dairy intolerance
• Sensory Processing Disorder
• Frontal Lobe delay 
• Gross/Fine motor delays

Now I list this not because I want to get sympathy or a woe-is-me, I love having all these babies under the same roof.

They get a long so well with minimal fighting, and the food restrictions are not difficult to work with and everyone can eat and be healthy.

Just ask my husband I can't stop cuddling the baby because she is squishy and snuggly and my 2 yr old (baby)  is a touch me not because of his sensory needs.

I am posting this because for the first time in 7 years my sister is having a break.

I kid you not she has been with one or all her 5 babies since birth for the last 7 years.

 She needed a break a LONG time ago, but it's sad that we as parents of special needs kids struggle to feel comfortable leaving these babies in the care of other even for a few hours let alone a day or more.

Parts are certainly overwhelming and we all learn to move into a new "Normal" once a routine or plan of care is in place.

But it's terrible that we don't get to take time for ourselves. 

I am happy for my sister!

She is currently pregnant with #6 and will be welcoming that precious baby in July 2017.

She is also working and going to Medical Assistant school and will graduate in May 2017.

 My Brother-in-Law is in Florida training with his new service dog.

And honestly if he wasn't needing to be down there I know this 8+ days with the kiddos wouldn't have happened. 

Not because we weren't willing or able (we offered to take them so they didn't have a babysitter for 3 weeks to help while dad was gone).

 But because I think as parents of kids with multiple special needs/dietary restrictions we feel guilty.

Yes, GUILTY!

• To take any extended time/vacation away
• Ask for help
• Make plans that would involve more than a trip to the store
• Feel vulnerable and less than Super Man/Woman to friends and family

Why is it more acceptable when your child is "Typical"?

We all need time away to recharge and date our spouse.

We need to make sure our own mental and physical health is met, and that we can detach ourselves from wrapping up our whole identity in our child's disorder/condition.

Have we ever thought what life may look like when we no longer have to be the 24/7 caregiver? 

God willing because they have started living on their own or have mastered enough skills to function unattended outside the home at a job or school?

There needs to be a life for us outside of "mom/dad/therapist/teacher/driver/cook/maid" otherwise we will have a very hard time transitioning from carer to just ME.

And I know I am being optimistic, sometimes and actually more often than not the parent(s) have:

•  A limited and really non-existent local support system.  
• Don't get out much to be able to meet good friends. 
• Too expensive to pay a suitable babysitter.
• Child's needs are too great to have someone who doesn't understand complex medical needs

So friends and family of these special parents please I beg of you...

If you have an afternoon or evening offer to watch their child, 

If you don't know how to care for the child ask to be taught.

Come over and have coffee or lunch with them if they can't leave the house.

Call and chat with them.

Let them have a NAP! Believe me they are chronically exhausted.

It is these moments where someone else can meet them where they're at that will make such a difference.

Don't be afraid, if the parent's can learn and handle this then so can you it just takes a willing heart.