A New Blog!!

Because of some computer issues at our home and serious lack of any computer know-hows, I am needing to change my blog address! 

I do want to get this out to you as soon as possible because we are nearing the date that Gracie will have her next surgery.  On October 11 some very fine doctors and incredibly skilled surgeons will open her chest once again to hopefully reroute her blood flow and give her the best chance at more years of life on this earth.  This is a very high-risk procedure that has been on the calendar a few times already.  Actually, a year and a half ago, we were all set and received the call that it was too high risk for her anatomy.  You may wonder, and believe me--we all do...WHAT HAS CHANGED??  The answer is nothing.

There is just not a good fix for all of the defects Gracie has.  Typically kids with Heterotaxy follow a surgical regime that includes two of Gracie's prior surgeries and around 2-4 years of age they finish up with the Fontan.  With Gracie, the fontan has never been a good fit--there is a lot of controversy with her because her heart disease, her anatomy is so involved.  She not only has the Hyplastic Left Heart, but also has severe pulmonary artery stenosis, TAPVR, complete dextrocardia, a history of clotting...the list goes on and on.  There is a 10 Commandments cardiologists follow when deciding on the Fontan and she breaks most all of them, putting her at much higher risk. 

The Mayo Clinic had decided back in June that they would just give her a larger shunt and see what happens.  I was told it would put a lot of pressure on her one ventricle and her life would likely be very short.  We couldn't accept this and had her files and prior procedures sent to the University of Michigan Hospitals in Ann Arbor, which just so happens to house what many believe to be the greatest pediatric heart surgeon in the United States.  Dr. Bove spent much time looking over her files and believes the best outcome for Gracie to have a future would be the Fontan.  He would be willing to do it!!  As excited as we were...and are... that we now have this option, we were/are very, very scared.  After Dr. Bove's recommendation to move forward, Dr. Burkhart, at the Mayo Clinic is willing to perform this operation.  We completely respect and trust Dr. Burkhart.  One huge advantage to having the surgery done at Mayo with Burkhart is that he knows Gracie's heart.  He's operated on it several times--many close calls.  He is very skilled at what he does and has a terrific reputation with CHDs.  Of course, we already know that Gracie's days have already been written--Psalm 139 tells us that--it is so freeing to know that whatever decision we make--He has this all figured out already!!  Don't get me wrong, the past days have been extremely difficult as we approach this date on the calendar.  I feel so responsible.

Sweet little Gracie trusts us with everything.  We tell her something, she accepts it.  What if we are wrong?  What if this surgery is too high of a risk?  What if it takes her life?  Right now, she is fairly healthy.  She's quite blue, has low O2 saturations, is somewhat fatigued, but feels good.  If you ask her if she's sick, she says "no".  Right now, she is singing her songs she learned at preschool and coloring up a storm!  She has no idea!!  And neither would anyone just meeting her or watching her play.  So to place this happy, spunky little girl on the operating table is very difficult.  We have no idea what her future holds.  But we do know WHO HOLDS IT!  Without that, without faith, without believing and knowing that this life and its challenges are temporary, there is no way we could enjoy this next week as we know we will.

We really do appreciate your prayers for our family.  As you can imagine, this not only affect Gracie.  We have four other children who ADORE her--the stress of a sick little girl in the family can be overwhelming, the fear is very real.  Gracie continues to teach all of us how to love, how to live intentionally!

I'll keep you posted--promise!

If you have been following my other blog, please switch over to this one--and let your friends know that we have switched addresses.  Remembering Gracie's earlier days and the prayers offered up on her behalf from around the entire world--feel free to share!

Much love to those of you who love Gracie!!

Gayle