Wednesday, December 15, 2010

"like a hedgehog sitting on a fence eating waffles"

A note from Rebecca:

Claire has seemed to be resting well today.  They have increased her feeds and she is tolerating it well.  They have increased it to a level where they can take her off her IV fluids; yay!! That means she is completely on Elecare which is the broken down formula.  Santa Claus is coming to town...well to the ICN tomorrow!  He is going to make his rounds and visit and take pictures will all of the babies!  She has the perfect outfit to wear tomorrow from Nurse Marie; it has Santas all over it!  She also has her Santa hat from Mrs. Hilda.  

We heard back from the Radiologists today from Claire's MRI.  They are still unsure what is going on with Claire's liver.  They don't want to make a determination of what is going on without consulting other radiologists. Dr. Rachel (one of Claire's favorites doctors) said that radiologists are "like a hedgehog sitting on a fence eating a waffle" meaning they like to hedge around, sit on a fence not making a decision, and waffle back and forth about things.  

The radiologist has sent Claire's MRI results to a radiologist at the Texas Children's Hospital for consult.  They are also consulting with the GI and surgery teams before making a decision and determining what could be going on.  What they have determined is that there is still the 1 large cyst and several small 1/2cm x 1/2cm x 1/2cm cysts around it.  The large cyst looks the same to them, but the small cysts seem to "have a different consistency" and look even more solid than the large one.  

As of right now, they are still wanting to hold out on surgery of the liver until after the heart surgery.  The doctors said that there is a potential in small babies and preemies that the liver can bleed some and they want her heart to be functioning correctly just in case.  One of the nurses said today also that if the cysts had to be on any organ the liver was a "good" one to be on because if they have to cut a portion of her liver off during surgery, it will regenerate and grow back.  Other then that, we do not have any more information on what will happen with the liver or what could be causing all of the cysts.  

We hope to have more information and answers soon hopefully tomorrow; mainly before the weekend gets here.  We are all very stressed and scared about what the results will entail.  We are hoping for all good news!  Please keep Claire and us in your prayers as we hope to get some answers soon about what causing all of the cysts.  

We love her very much :)


  1. At least they are finally looking for answers. It shouldn't have taken 2 MONTHS to get here. We love Claire too, we want her to be perfect in every way. I am thinking I dont like hedgehogs, not one bit...

  2. We are continuing to pray... and are waiting for the cute Santa pics!