Jacob Paul White
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Jacob Paul White was born March 25, 2003 at 12:10 a.m. weighing in at 6 pounds 1.5 ounces and 18 1/2 inches long. His original due date was April 16, 2003. I was put in the hospital February 9, 2003 at 31 weeks for premature labor. I was diagnosed with polyhydramnios and spent the next six weeks on bed rest.
In the NICU, Jacob was diagnosed with Choanal Stenosis and shortened radius limbs. He under went several nasal dilation surgeries. All failed. On April 29, 2003 Jacob went in to have his tracheostomy surgery. It was a heart wrenching decision for two parents to make, but at this point I just wanted my angel safe at home.
He did really well once he received his trach. On May 20, 2003 Jacob was released from the hospital. We were very lucky with Jacob, he ate orally very well. It was slow at first but he grew a little and gained his strength.
To date it has still not been determined exactly why this happened with Jacob. He does not fit into any syndromes. Everyone who meets him says that they were expecting to see a tiny child and instead see a bright eyed thick little man with much attitude.
Now Jacob has been home for a year and has done great. He started walking at 10 months of age. He will sign MILK, MORE and BALL. I am still working with him. He is a very intelligent little boy with a big heart and way too much energy. His first
word was 'hey' he will say it around the trach and only for certain people that he feels comfortable with.
He will need a single LTR surgery once he is closer to 25 pounds. He is currently 29 inches tall, and 20 pounds. I am nervous for him, but know that he is a fighter and will make it just fine.
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October 27, 2004: Dr. Robin T. Cotton and his team performed the LTP single stage rib graft on Jacob. Jacob was decannulated with the surgery. It was a long week of sedation and on November 1, 2004 a follow up bronch showed that all was well. On November 2, 2004 the sedation was stopped and Jacob was successfully extubated. No words can describe how grateful and proud I was at that very moment. Jacob was released to come home on November 9, 2004 and the follow-up bronch was done on December 9, 2004 all looked well. He had a small piece of granulation tissue that just fell off during the bronchscopy and his airway went from a 3.5 to a 4.0 in just 4 weeks. We will return in March for a follow-up.
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Amy White
Mom to Jacob Paul White, 13 months old
Tracheostomy, radial limb defect
whit3369@bellsouth.net
