A Lil' Boy's Journey to Live….

CHOP visit

Today was a long day!  We were at CHOP for about 6 hours, but it was productive.  First was my OB appt. w/ my ultrasound.  It went well.  CCam still not visible.  That wont change at this point.  His size is good.  He is about 5lbs. 3oz.  Everything with me was ok.  BP was a little high, but nothing crazy.  144/88.  Now I will start going back every week.  I have already scheduled those appts. through the next month.  In the doctors words, "Everything seems good, now we just wait for you to deliver this baby!"  
Next we went and had the Echo.  Again, nothing there has changed.  The consultation after the Echo didnt seem like as much as a downer as last time.  Maybe because no percentages were thrown out there this time. 
After having lunch, we meet back up with the Cardiac Nurse, and toured the Cardiac ICU.  It wasnt, quite, what I expected.  I thought it was one big room, but it’s not.  There are a bunch of rooms that have 4 pods each in them.  Each baby is assigned a nurse, or there may be 2 babies to a nurse depending on the baby’s situation.  There are also single rooms, but we wont be there, at least not for a while.  There is also a step down unit.  We may or may not go there.  Babies can be discharged right from the ICU.  We wont know till we get to that point.
We then meet with a woman who will help us explain things to Christian.   She gave us the option of bringing Christian in before Riley is born, and letting him see the Cardiac ICU, or waiting until after he is born.  Either way, they help to explain things in a way that will make Christian comfortable with the situation.   I think, at this point, we will wait to take Christian to CHOP.  It will be to much for him to worry about right now.  
Our last visit was with the heart surgeon, Dr. Spray.  We did wait about a hour and a half for him, but what can you do?  He was very nice.  He did explain some things we already new.  The point that there are alot of unknowns.  I believe, though, that he came across hopeful.  He did say that sometimes Transpant becomes a option for baby’s with hearts like Rileys, but that we could discuss that later.  The best route, right now, is the Fontan Procedures.  
So as I say with almost every blog…..keep praying!!  Riley is going to have a rough start, but with God’s help can pull through this! 

Comments on: "CHOP visit" (1)

  1. Christina said:

    Yea, Riley is 5 pounds 3 oz.  Donny was only 5 pounds 8 oz so we will out weigh Donny at birth.  Big and strong that is good! 

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