"I'm a survivor"

Jaylan is still fist pumping along.  Two and a half days and going strong! She had a great night and maintained consistent temp, heart rate and respiratory.  She ate 4 times last night and peed and pooped several times.  The jaundice they noticed yesterday has slowly began leaving.  God is good.  I'm thankful that she's doing well and not struggling.  The nursery nurses were just talking about how amazed they were because she's such a fighter and keeps doing better and better.  One of her nurses said that this is her third trisomy baby that she's taken care of and the other two had nothing on my Jay.  I know without a doubt in my heart it's the prayer.  The power of prayer can blow you away.  I just don't know how anyone can go through life not being covered by the blood of Jesus it just gives me chills.  My prayer is that God blesses my attitude to continue to embrace whatever time we have with her and only He knows.  Romans 8:28 tells us that all things work together for good for those that love God, for those who are called according to His purpose.  I'm excited to see what God has in store. God is good!

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.