Monday, December 10, 2012

Update on Dr's appointments...

There is something about our new normal that I still struggle with and that's the butterflies, or bats I should say, that I get in my stomach when I see any of Grace's Dr's phone numbers appear on my phone...  for reasons such as this, two weeks ago on Friday I got a call from Grace's cardiologist saying that her lab results came back and there was something that she wanted to talk to me about, so to please call her back.  When I called her back as fast as my fingers could dial, of course she was busy and unable to take my call and the administrator said that she would try to call me back that afternoon or on Monday....  Ummmmm....  Momma can't wait until Monday!  Clearly God knows that, so by His grace she called me back that afternoon and shared with me that her liver enzymes came back super high.  Her normal had been around 20ish and continuing to come down since the scare that we had in the hospital when she was one week old (remember the central line in her umbilical cord that went through the vein going to her liver and lodged itself into her liver, dumping all of the fluids and meds she was receiving into her liver :-/?).  The Dr said that her labs now showed that her liver enzymes were over 400!  They weren't sure why, so they ordered a repeat ultrasound and labs.  Her labs came back and her number went down to 85-105, still not normal, but much improved.  Grace had her ultrasound today and while we don't have the results back yet (I get to wait until one of her Dr's call me), the tech doing the ultrasound told my husband that she didn't think there was anything to be concerned about.  PRAISE BE TO GOD!!!  We have a cardiology appointment tomorrow (Tuesday), where she will get an echo to see if her heart has grown any, etc.  Will you please pray us through this appointment?  We pray that if it's the Lord's will that the left side of her heart will have grown so much that both the cardiologists and surgeons agree confidently that she can be a two ventricle baby (up until this point there has been a divide in opinion with more people believing that she will have to be a single ventricle baby).  The difference between being a two ventricle and single ventricle baby is whether you have two pumping chambers (the way that a normal heart functions) or just one (which is a process that is pretty amazing in that they basically rebuild the heart to function with just one side of the heart doing all of the work).  The singe ventricle route is less desirable for multiple obvious reasons, but having "Up's" complicates it even more.  The single ventricle route is far more risky and requires at least one additional surgery (in addition to the one that she must have in 3-6 months from now- Lord willing).  The good news is that God is certainly big enough and powerful enough to heal her heart if that is what would bring Him the most glory, so if we find out that her heart hasn't grown and single ventricle is the Lord's will, it will be good because God is good.  Now, I didn't say easy or with out heart ache and many tears, but it will be good.

Andrew has his 4 year old check up tomorrow (which comes with a ton of shots- poor guy!).  Will you please pray that he is healthy and checks out well?  The last couple of times his Dr listened to his heart she heard a murmur, which can be common in boys around his age, but they should grow out of it, so if she still hears it at his 4 year old check up, she wants him to see a Cardiologist.  Please pray for no more broken tickers!  They are kind of important :-).
    "Thank you for lifting us up in prayer for our Dr appointments tomorrow!"

Another praise, we have had a ton of comments (the most recent ones from her ECI case worker and ultrasound people) that Grace is very wiggly (moves both of her arms and legs a lot) and is very curious and observant.  I'm not sure what they would expect her to be like, but we are grateful that she appears to be exceeding expectations from that stand point and that is praise worthy for sure :-).

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