Welcome

2013-06-16  'Marinkovich Family'  001Welcome to Ain’t No Roller Coaster (ANRC); a blog about our family’s journey with prematurity and special needs.  I focus my writing on Celebrating each milestone, Healing each layer of hurt and Connecting with those on a similar journey.  

Much of ANRC revolves around Owen, who was born in April 2011 at 24 weeks 5 days gestation.  Owen had a complicated course that included 2/3 of his first year in the hospital.  He has come far and continues to work to overcome global delays, feeding issues (80-100% g-tube fed), multiple food allergiesPVL and severe chronic lung disease.  Supporting cast includes, 4-year old Kellen, who was a 34 week preemie; my husband, Kyle; and me, the mom who recently returned to work after two years home with Owen.  

I write to share my truth because I have a feeling that I’m not alone.  My symbol is the zebra whose black and white color signifies the duality of life; sometimes the most difficult challenges come with the greatest joys.  I love hearing your stories too, so please, feel free to share.

Tatum

Recent Posts

G-Tube Acceptance and our Experience with VitalStim

I’ve written a lot about the anxiety that I feel about Owen not eating.  I’ve tried to explain that he’s not just picky, I’ve vented about regression and I’ve given detailed summaries of what worked and didn’t work.

Owen turns 3 in 8 days (I know, I can’t believe it either) and he still doesn’t eat measurable amounts of food.  He puts things in mouth,  bites a piece off, chews and chews and then spits it out.  He asks for food, seems to enjoy the taste of food and even likes the sensory experience of it in his mouth, he’s even starting to express hunger.  He just won’t swallow.

He used to swallow, before what I call the “Pediasure debacle” and the suspected case of Eosinophilic Esophogitis (all described in excruciating detail in the link above).

In January, we started VitalStim Therapy.  VitalStim, in mom terms, uses electrodes to teach the muscles and the brain how to swallow.  It’s similar to how people who have paralysis will use electrodes to ride exercise bikes.  It doesn’t hurt – he is slowly transitioned into higher settings of electrodes.  As with all feeding therapy, the goal is for Owen to enjoy eating, so we keep him comfortable and often distract him with the iPad.  Here is a picture of Owen in feeding therapy with the electrodes in use.

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I had a lot of hope for Owen with VitalStim.  My expectations were probably unrealistic, but I kind of just thought since he used to like eating, if we could get this one piece solved for him that he’d jump right on board.

In reality, it’s been sssllllloooowwwww going.  First, Owen had several illnesses during cold and flu season that had him missing sessions.  The idea with the program is to be more intensive with 2-3 sessions a week.  Owen’s been averaging closer to 1 session a week.  The other thing is this is eating and eating just takes a long time to learn to do when you’re this old.

We’re definitely keeping up with therapy and keeping food fun.  I want Owen to eat and am going to provide the best environment to give him that chance.  But here’s the thing.

I AM DONE STRESSING ABOUT IT!

Owen is relatively healthy.  Other than some occasional constipation/diarrhea cycle issues, his gut is happy.  I no longer fear feeding him.  He’s a big boy.  37″ tall and 32 pounds.  He’s breathing on his own.  He’s walking on his own.  He’s talking in 4-5 word sentences.  Most importantly, he’s comfortable!  It’s taken 3 GI doctors and 18 months to finally get him back to comfortable.

We had a GI appointment today.  The doctor was realistic, he said that Owen’s allergies are going to complicate his ability to meet his caloric needs with a regular diet.  That’s not to say never.  It’s just to say, there is one more variable to overcome.  It’s never fun to hear of the roadblocks, but I do appreciate the candor and honestly.

He’s doing so well.  He can live a long healthy life with a g-tube.  I’ll keep trying to give him every chance to eat on his own and I’m never losing hope, but the truth is, if he always needs it, it’s okay…and it sure makes giving icky medicines a lot easier!

That’s my story and I’m stickin’ to it…at least as long as he needs a g-tube.

 

 

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