Baby Christian

Baby Christian
Christian was born with two very rare congenital heart defects; Hypoplastic Left Heart Syndrome (HLHS) and Endocardial Fibroelastosis (EFE) He will require three (two down, one to go!) open-heart surgeries to sustain life. He is a miracle and a blessing. We are so greatful to have him here with us. Thank you for stopping in. Lilypie 2nd Birthday Ticker

Tuesday, July 31, 2007

Great News!

Nicole and Bryan got the call today that San Francisco wanted to do the in utero surgery. We will know tomorrow what day, but they wanted her there the end of this week or the beginning of next week. We are so excited! Now I am needing to make a bunch of casseroles to freeze and catch up on laundry. I still do not know if we are going to fly or drive yet. But either way I am done with daycare on Friday. So I do not need to worry about that while I am gone.Anyway, thats all for now. I will post as things transpire. Also, I will be posting to Christians blog while we are in San Francisco.

Sunday, July 29, 2007

Friday's News

Well, on Friday we all met with the pediatric cardiologist. It went well and there were no new surprises. After the new echo and fetal EKG Dr. Rice came in and chatted with us. So, here is the scoop...

There is no change in the diagnosis of endocardial fibroelastosis. The EFE has caused aortic stenosis. Basically a thickening and closure of the aortic valve at the heart. There also is some abnormality of the mitral valve allowing for backflow but it is still functioning just not as efficiently as they would like. SOOOOOO, Dr. Rice is sending information to San Francisco (the University there) and requesting review for the in utero procedure. If they say no then the baby will receive a series of 3 operations beginning at birth to stabilize him until he can get a heart transplant. The surgeries are described really well at this web site: http://heart.health.ivillage.com/pediatricheartsurgery/norwoodprocedure2.cfm

It sounds like he is going to need the surgeries regardless but I need to double check that.

Well, thats it for now. We have to hurry up and wait again. Keep checking in as I plan on posting some new pictures when we get them...

Tuesday, July 24, 2007

Just What the Heck is Endocardial Fibroelastosis?

That is what we all wanted to know! So, here is the official definition of EFE...

Endocardial fibroelastosis (EFE) is a rare heart disorder that affects infants and children. It is characterized by a thickening within the muscular lining of the heart chambers due to an increase in the amount of supporting connective tissue (inelastic collagen) and elastic fibers. The normal heart has four chambers. Two chambers, known as atria, are separated from each other by a partition called the atrial septum. The other two chambers, known as ventricles, are also separated by a septum. Valves connect the atria (left and right) to their respective ventricles.The symptoms of endocardial fibroelastosis are related to the overgrowth of fibrous tissues causing abnormal enlargement of the heart (cardiac hypertrophy), especially the left ventricle. Impaired heart and lung function eventually lead to congestive heart failure. Endocardial fibroelastosis may occur for no apparent reason (sporadic) or may be inherited as an X-linked (EFE2) or autosomal recessive (EFE1) genetic trait. (INFORMATION TAKEN FROM THE FOLLOWING WEBSITE: http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Endocardial%20Fibroelastosis)

A lot of medical jargon but so far this is the best I have found.

Friday we get to venture to Portland to meet with the pediatric cardiologist with OHSU. She will give the final thumbs up or thumbs down on the in utero procedure that we were informed of last friday. Lets all hope for the thumbs up!

Nicole and Bryan are doing very well handling all this information. Better than the grandmas most days I think! Bryan is of course concerned with the everyday issues of running a family. Bill paying, moving, job changes. It is a lot for him. Nicole is concentrating on the baby and still having a life. I am amazed at how well they are doing.

So, that is it for now. I will post as events unfold. Be sure to comment so we know who popped in!

Denise

Welcome to Baby Christian's Blog

Thank you for stopping in! This new blog has been created to keep family and friends informed as to Christian David's ongoing fight for life. Please stop in often. Be sure to post comments when you do so we can know who popped in!