Jameson And Family

Jameson was born on October 7th, 2015 with a rare birth defect called Bladder Exstrophy.  He was immediately taken from mom and dad and brought to the Neonatal Intensive Care Unit at Seattle Children's.  There we learned that there are between 100-300 new cases worldwide of Bladder Exstrophy each year - rare indeed!  This defect not only affects his bladder, which was on the outside of his abdomen, it also affects his pelvis, kidneys, ureters, and penis.  At 5 1/2 weeks old, Jameson underwent a 13 hour procedure to put his bladder back inside of his body and realign his pelvis by breaking it and then putting him in a spica cast that went from his armpits to his ankles.  He lived in this cast for 6 weeks,  He was also give a belly button!  Kids with Bladder Exstrophy are not born with belly buttons so the surgeon sewed in one of his tubes and made a little "outie" for Jameson.  We were told that after the surgery we would be able to return to a somewhat normal life until Jameson was around 2 or 3 years of age when he would need penis reconstruction and to have both of his ureters re-implanted into his bladder.  Unfortunately, Jameson became an outlier of the outliers, and so begins the story of Jameson's first year of life.

We came to live in and out of Seattle Children's for the last 13 months.  Jameson kept getting kidney infection after kidney infection and the doctor's still do not know why.  We took Jameson to see another Bladder Exstrophy specialist at John Hopkins in Baltimore in hopes of having some better answers.  Unfortunately, he didn't have any answers either, and he is the guy who wrote the textbooks on this rare defect!!!  After our 12th inpatient stay for an infection, they decided to move forward with re-implanting Jameson's ureters into his bladder in hopes we could decrease the number of kidney infections he was getting.  That surgery took place on September 9th, 2016.  A week later, we were back in the operating room putting in stents and drainage tubes from his kidneys as his tiny body was not handling the surgery well.  We were discharged and back within 6 days with a fever of 105.  Yet another infection.  They took him back to the operating room to remove his stents and tubes and everything looked good, until Jameson stopped eating and started loosing weight.  We still have no answers as to why he won't eat, so we are feeding him through a tube in his nose down to his stomach.  We are working with a great feeding team to get Jameson feeding therapy and watch his nutrition closely.  We are still waiting to hear what the plan will be for the next few months with this.  There has been talk of bringing him back to the operating room and putting in what is called a G-tube, a tube that is inserted through the abdominal wall and into the stomach as a better means of feeding.

I wish I could say this will be the end of Jameson's saga, but for these Baldder Exstrophy children, this is a life long disease process.  Jameson will have another surgery around the age of 2 or 3 to reconstruct his penis, a surgery around 5 or 6 to try to help him gain continence and "stay dry", and a few more procedures throughout his teen years to help correct his penis issues and the continence issue if the surgery at 5 doesn't work.  Jameson, Andrew, and I can't thank our friends and family enough for all of the outpouring of love that we have received over the last 13 months.  Spending a total of 6 months inside hospital walls has definitely taken its toll on all of us, Jameson especially, as he is starting to fall behind on developmental milestones.  We are not ones to ask for help, other than thoughts, prayers, and positive vibes sent our way.  This account a very old friend set up for us is more than we would ever ask for on our own.  We want you all to know that we appreciate each and every one of you that have reached out to us during this difficult time and helped in any way you could.

Love,

Jameson, Amber, and Andrew

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.:: Where there is hope there can be faith, and where there is faith, miracles can occur::. (Think it.  Live it.  Love it.)