And Sometimes Feeding Your Kiddo Looks Like This...

A simple sentence. No one said it to me in the beginning, but boy did that tube cause a lot of chaos. The NG tube graduated to the G-tube which morphed to a GJ- tube….

A brief history of Ivey's feeding tubes:

*The NG tube was in place the first time I ever saw my daughter in the NICU.  My only memory of her without a feeding tube is them placing her in my arms immediately following her birth.

*The G-tube, well, that is a story within itself.  That decision did not come lightly.  Another hole in her.  Another decision on our plate, but not really on our plate, it was apparent it was a medical necessity for her survival.  Literally to give her a chance to live.  A permanent decision.  A 5am panic attack in the Scottish Rite elevator that happened to coincide with Dr. Meyers arriving at the hospital at the same time as me.... Our intersection in the elevator set the stage for the years to follow. From that point on, he knew I was a little nuts and a lot sleep deprived.  I missed home.  I missed my boys.  My brain had yet figured out how to compartmentalize the overwhelming decisions. Ivey was barely 6 months old. 

*The GJ, that decision came easier.  Her stomach was found to be smaller than a typical stomach.  She had an insane case of GERDS.  She was aspirating her reflux.  Reality was setting in.  The G was switched to a GJ before she left SR following the trach.  

Back to the days of speech and feeding therapy a.k.a. the retribution of Ivey's feeding tube. 

Speech therapists broke my heart over the tube, except for Heather and Libby. I began to tune them out. I angered many with years of experience under their belts. Yet, none of them sat in the specialists offices with me, none had to put all of the information together and apply it to my tiny tiny human fighting for life or be the final decision maker as to Ivey’s best interest. I was a broken momma over the tube, food, nutrition, and torturing my child daily as she fought to live- all in vein efforts for her to swallow, and, maybe at some point, be verbal. But, Dr. Meyers, Ivey’s GI specialist- he put me back together.

He put me back together using different pieces. He gave me the authority (though it was always mine) to be in charge of Ivey’s means of “eating”. He was one of several special people that reminded me that I am Ivey’s mom. I alone govern Ivey and I know what is best for her- best for her unequivocally and based on a certitude of information no therapist gathered while sitting with us in 17 various specialists offices - all trying to figure out this rare, never seen, genetic syndrome and its affects on Ivey - "You are mom- just you". "She trusts you. Just you." -

Dr. Meyers taught me to trust my instincts and to trust what Ivey’s BODY was telling me. He explained the importance of the tube. Her need for the tube for growth and to thrive (she was failure to thrive)- all outweighed any need for social eating or burning massive calories fighting to eat orally. He looked me in the eye and stressed her need for nutrition would never be like ours, she would never ever sit at a table for a meal and socialization. He said, and I can't stress this enough for other mommas out there, "Take that meal time and focus on your boys. Make it their time." We still do this to this day. Ivey is the center of attention, but during meals, our boys are center. He explained clearly that even if Ivey ever had a meal orally- she would always always and forever rely on the tube for her max caloric intake to survive. Always. Period.

It’s funny what transformations happen in your brain when you have clarity that your choices will determine if your child lives or dies. (There have been many of those "Come to Jesus" conversations through Ivey's life.)

Maybe that will help others understand me. I make decisions no parent ever wants to make- I make decisions most parents will never make - therefore, I alone will live with those decisions- I am Ivey’s mother. I am her guardian. Dr. Meyers words brought clarity. The tube is a permanent piece of Ivey. Forever-

Acceptance.

I stopped the feeding portions of speech therapy. All of it.

Speech became a component of executing communication best practices for the deafblind only.

The biggest perk to having a tubbie kid…she takes her medicine, no mess, no fuss, no problem. She has 3 bolus feeds per day and a 10 hour continual feed at night.

Moral of the story, Ivey is thriving. With Ivey’s feeding tube- we have more time for more things that are fun and positive. We have more time to rest. The tubes are extra appendages we don’t really think about these days- they are part of her -

Therapists- ask the questions, “How can we combine multiple therapy needs into one session? What are the therapy priorities? Where does my specific goal fit into the overall daily or weekly schedule? How can we combine this exercises with another therapy routine or daily living routine? What is the impact of vision loss, hearing loss, being deafblind? Can the child and family handle this at the moment? Are we being realistic? Are the combined expectations from outsiders adding up that one parent will be the SLP, PT, OT, VI, DHH, OM, and Nurse? What about siblings? How are adjustments to any "new normals"? Eating the "typical" way isn't always the best way. Who cares what a textbook says. The answer to all of these questions will almost always fall to one parent.

As for me, yes, I still carry the open wounds from the implementations of the tube and the forcefulness of professionals and a couple of family members who expressed their opinions, applying extra and unwarranted stress. My brain interpreted the lingering pauses in the air that somehow Ivey needing the tube was in someway a failure on my part, not trying hard enough, scheduling enough feeding time on-top of trach care...learning about deafblindness.... PT, OT, VI, and hearing, unstoppable trips to CHOA, home health nurses in our home around the clock…or worrying that she would fail to thrive….Being the mom to two boys...How to be her mom....Keeping a marriage together. The list is extensive.

Parts of me became a casualty in a medical decision that kept Ivey alive. During this phase of adjustment, it wasn’t just a lone therapist pushing ever harder. This applied to family "wanting to help" but only help in the way they saw fit. A bottle, a fork, a spoon, unsolicited suggestions... too many words. Dismissing that I needed to heal, grieve, be scared, find my feet in the harsh slamming into the medical world, just breathe. A breath to just be. Wanting my daughter to stay alive. Being allowed to be vulnerable when others were around. Figure it out. We were told - she may not live through the day...the week...month - she may make it to childhood. The pressure, at times, was suffocating. Trying to let her live - while being optimistic. Believing in the impossible, but knowing it possible to, at some point, live in a world where she might not exist. She wasn't broken. I had no desire to "fix" her. I just wanted to hold her. Parts of me wanted to be held.

As a family. As a mom. As a dad. We all needed safety nets. Strong safety nets. The Earth had shifted under our feet without warning.

Families - parents need support. We are traversing unexpected and very stormy waters, waters you didn't experience with your own children. You can't base your experiences as parents against the uncharted territory of a medically complex person. Even the siblings of the child are having vast differences in their childhood than your experiences raising a family without a disability. Even if you are in a professional field encompassing disabilities, you have no real idea. I promise, professionals go home at the end of the day. Family members visit- then go home. Very different expectations on Life. Families don't get that option. We are home. Listen to what the parents need...not what you think they need. Parents need support and to feel safe being raw and broken in the privacy of family. Often with certain family members - I had to be the most stoic and composed, which led to being very defensive and very protective of Ivey. Much resentment. It was exhausting. It broke bonds. There was no right or wrong in my behavior. I was in complete survival mode.

Survival modes raise their ugly heads, still, to this very day. Surviving is a verb. Surviving is not an emotion. I was surviving. I continue to survive as best I can for all three of my (grown) babies and Matt. They will always come first. When in survival mode, there is rarely anything left for anyone else, including myself.

These days our biggest dilemma is remembering to unplug the feeding pump in a lightening storm…If you are tubbie parent with a feeding pump, you know if you know!