Wait Mode...

Jay had a pretty good day today.  The pediatrician has been really good to us with providing insight and direction.  She spoke with ACH and UAMS today to see if Jaylan has full Trisomy 13 or maybe partial but they said it was full.  To my surprise her abnormal heart isn't the biggest of her problems but it's her brain.  Makes me so sad that she looks so perfect and normal only for her not to be.  They're still telling me that it's just a matter of time.  Right now we are in the boarding room right across the hall from the nursery which means I've been discharged but Jaylan hasn't.  I'm trying to embrace every moment that we have with her but the longer we have the harder it gets.   She smells so good and she has the most beautiful black curly hair but I know that I won't remember her smell when she's gone or the softness of her hair and skin.  It makes me feel really helpless.  I wish I was back home laying in my bed with her still in my belly where I know she was safe and having no struggles.  I just can't envision her little precious body with no spirit.  Although we've already taken our mind to her memorial service I still can't completely wrap my mind around it.  Michael said today it just seems like we're in a bad dream and it doesn't seem real.  Raghan asked when was she coming home.  It really broke my heart.  She thinks that since she is still alive that she's all better and I had to remind her that Jay was still sick.  If she lives long enough they're going to push for us to bring her home and use hospice.  The sound of that just takes my breath away.  How do you even think about calling in a hospice nurse for your newborn baby??  I'm still giving God the glory.  I want to find the joy in the circumstances.  God is so good to us and I know this is all in His plans and His will.  I just don't want to miss the purpose of it all.  I'm still praying for the peace that surpasseth all understanding.  God is good.