Monday, September 3, 2012

September 3

This day has been a long short day...try to wrap your brain around that one :)  Vivi is having a hard time living in her skin.  I can't say I blame her, and will take full credit of the long fuse she has had.  In that aspect, I feel like Viv and I share DNA.  It is interesting how we both have gotten to our witt's end these past few days and how I realize I have to now choose to be here in this time and space, and she, well has every right to be having meltdowns hourly.

While Rod and I were speaking with the doctors today, my reaction is a numbness.  I am at a place where I recognize a.)  I have no control and b.) God knows.  I have human emotions of not wanting my baby to suffer any longer.  I want her to be able to be held whenever, I want her to be able to feed, I want her to move and not worry about why she's moving--is she in pain, does she need suctioned?  is she going to cry?  or is she just being normal? I want her to be able to cry and throw little tantrums and not count the seconds before we need to give her some drug to calm down.  But under all of that, I know...I know in a way that surpasses all human understanding and explainations that Vivi is going to be ok.  This time too shall pass, and we will look back on these days and praise God for the goodness He has done in us, in others and for Viv.  I guess that within itself is a supreme gift of great grace.

After tests this morning, her liver billirubin levels are a bit high...the cardiac docs aren't sure as to why, so I will be speaking with the liver docs tomorrow in more depth about what this means.  Our spectulation is that it is a consequence of the dosage of the nutrition she is receiveing from the TPN and lipids.  To this, I pray, ask for prayers, smirk and shrug my shoulders.  God knows the directions-- I just have to agree to follow.


  1. Re I love you sweetie....thats all... i just want you to know how deeply i love you , Mom

  2. Hang in there. I am praying around the clock for you all.