A Lil' Boy's Journey to Live….

Archive for February, 2008

update

We have updated the Heterotaxy page.  The information about Hypo Plastic Right Heart has been removed.  Hopefully the update will better describe what is going on with Riley’s heart! 
Wednesday I go to CHOP for an OB appt.  It should be a normal appt., but I will keep everyone informed of any changes or updates!  Thanks!
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OB/ Echo Appt.

Today I had my echo, and my OB visit, which included an ultrasound.  It was not the best of visits.  Everything is pretty much the same, except, the cardiologist adjusted her survival rate from 75% to 54%.  Actually, I shouldn’t say that everything is the same.  Riley does not have a Hypoplastic Right Heart.  I don’t know how these things got confused.  They say he has a single functioning ventricle.  It is a single right ventricle w/ Pulmonary Astresia, Total Anamalous, and Pulmonary Venous Return.   This was explained to me in my appt., but it is hard to put into writing.  His biggest issue is whether his pulmonary veins are obstructed below the diaphram.  They will not be know this until he is born.  This is what will determine if he needs immediate surgery, or can wait 5 days.  The cardiologist says that he does have somethings on his side…like….his heart is pumping good, it appears that the pericardium effusion has gone away, the aorta looks big and strong and able to pump out to the body, and there is not alot of leakage through the valve, and the pulmonary veins look good, again, we dont know what is going to happen below the diaphram.  Soo…the cardiologist is the one who really got me upset today.  I was holding on to that 75%, tight, so her making 50% really breaks my heart.  In a way I cant explain.
 
My OB appt. was good.  Riley weighs about 2 lbs. 10 oz.  He is where he should be in growth.  The CCam is hard to see, now, in the right lung.  It is still there, and will need to be removed, but it is no longer an issue.  So much so that I don’t need to have an ultrasound at my next appt.  Everything else was ok.  BP was good, results from my lab work all came back good.
 
My next OB appt. is in 2 wks.  My appt. two wks. after that will include an ultrasound and an echo.  We also will tour the Cardiac NICU at that time, and meet the social worker, and some other people that will become important to us as time moves forward.
 
Soo…Riley’s future is pretty much depends on his heart.  So everyone that was praying…please continue.  Maybe even pray alittle more!
We are in the calm before the storm.

Appt on January 25th

Just to update things a little bit….I went for an OB appt. on January 25th.  Everything went well.  We did a fetal strip, which had Riley’s heart sounding good.  I also had an ultrasound, and my glucose test.  Glucose levels were good.  Ultrasound showed everything to be the same, except the CCam.  The CCam appeared a little smaller, measuring .25mm.  The original ultrasound had it measuring .3mm.  This is good!  It means that his lungs are continuing to grow around the CCam.  That is what we want.  We don’t want the CCam to grow with the lungs.
We are also looking to have an induction.  They said it would be scheduled for around 37-38 wks.  The date will be confirmed as we move forward.
My next appt. is Febuary 12th.  That will be a normal OB appt. along with an ultrasound, and a fetal echo.  I’ll let you know how that goes!  Thanks for all your support!!

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