#love4babylucastubeweaningjourney#

I am Rebecca, and my husband is Donald and we have  been blessed in August 2017 with our miracle baby boy, Lucas.  He has withstood the odds to be here after being diagnosed in utero with an Trachesophageal  Fistula
(which is where amniotic fluids can't pass  through the
 esophagus for the baby's lungs and GI parts to develop because of an abnormal connection) and needed surgery as soon as he was born. So, in August Rebecca
and Donald was unable to even hold their baby before he was whisk away to the NICU (neonatal intensive care unit) and prepared for surgery.  Thankfully the surgery was successful and baby Lucas was sent home after two weeks in the  NICU.  However,  he continued to show signs of feeding intolerance and fussed with every feed even vomiting  all  his  formula.  So, the doctors recommended  the NG-tube (Nasogastric tube) as an option for Lucas, to give him  the nutrition he needed to grow healthily and to avoid him getting dehydrated.  
In December he got the NG-tube and spent all but near his first Christmas in the hospital and then was sent home to battle the odds with his NG-tube and feeding issues with continued complications. Here we are  three months later Lucas condition has worsen he fusses with all 7 of his daily feedings, vomits blood and his formula constantly during these feedings, gags from the tube in the back of his throat  and have developed severe oral aversion (refusal to take anything by mouth even his pacifier) as a result of this inhumane NG-tube going through his nostril through the back of his throat down his trachea into his esophagus into his stomach, can you imagine going through this as an adult much less for a baby?
Feedings are very distressing for Lucas especially when he coughs up the NG-tube and it must be repalced which is not only frightening for him but torturous. 
Presently, because of his strict three hour feeding regime, and all the supplies and equipment he needs, we hardly ever leave our home because of the difficulty in doing so.  Lucas can't go to mommy and me groups and even baby groups, so he is missing out on social interaction with family and friends, it has been lonely and isolating for us as well.   
 Lucas's hasn't responded well to regular feeding  therapy.  He does, however, continue to require intensive feeding treatments to overcome his esophageal disabilities and develop his motor feeding abilities so that his life can be enhanced and enriched in a way where he can become an independent eater not relying on the NG-tube. This therapy is of course,  very  expensive $20,000.  
The name of the program is The Spectrum Pediatrics program in Virginia which was recommended by his GI specialist. This program has a 90% success rate in getting children to eat normally.  It's a 10-day program, and the cost is not covered by insurance.   Through their intense program children learn that eating is healthy and normal.  That’s why we need your help raising the funds to admit Lucas to this program so he can learn that eating is healthy and normal. 
Most of the children leave being 100% oral eaters!  
Without this intensive feeding therapy, children do not outgrow their dependency on the NG-tube which affects their quality of life.  Without getting this feeding program Lucas prognosis is poor and he will not be able to function in a capacity like any other normal child will.  Please give Lucas the opportunity to receive these services by contributing to his cause.   
Thank you all so much for reading, sharing, and for those who are able to donate.  This means the world to us, our little miracle baby boy deserves a stress-free existence, one where he can take pleasure in food and eating, and not be completely tied to machines,  regimes and tapes on his beautiful face.  
Thank you so kindly for your donations, and we ask that you keep us in your prayers. If you would like to donate and do not feel comfortable doing so online, please inbox me.  There is no time limit it's just until we have enough so that we can get Lucas eating again.  

 Parents Donald and Rebecca

Donations

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  • Ramonita Semper 
    • $100 
    • 34 mos
  • Anonymous 
    • $10 
    • 35 mos
  • Linda Iadevaia  
    • $50 
    • 35 mos
  • Tara Nelson 
    • $10 
    • 35 mos
  • Liz Smith 
    • $50 
    • 35 mos
See all

Organizer

Becky Pollard 
Organizer
Elmont, NY
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