Pressing on...

Jaylan is still with us though she's had her struggles.  Although she doesn't eat much, she eats and although she hasn't gone through many diapers she is going through them.  Today has been a great day but a hard day.  We've had a ton of visitors, family and friends, and the support is awesome!!  Thank you to everyone that came by the visit, hold and love on baby Jay.  That's our goal, to give her as much love as we can possibly give.  We don't want to rob her of a lifetime of love because of the fact that we may only have her for a short period of time. 

She started off eating better and better but now she's slowing down.   She's beginning to have harsh breathing problems.  I was feeding her today when Michael and I noticed that she was starting to turn blue.  I stopped her feeding and she started gasping for breath just as the pediatrician walked in.  It was the scariest moment of our life.  How do you make the decision to not resuscitate your own child if need be?  We don't want her to struggle and it was the hardest thing ever to watch and be so helpless, a feeling I've never felt in my life.  All we could do is hold her and love on her.  The pediatrician said it looked as if she was trying to pass.  We just want her to be peaceful.  After several minutes of gasping she calmed down with shallow breathing and her color returned.  It totally breaks my heart.  You want to bear the pain for your babies when they are going through and to not be able to do that is definitely overwhelming.  Now I'm scared to feed her in fear of cutting off her oxygen.   It makes me think she's starving but the pediatrician said she wasn't.  I just want her to be comfortable.  Under normal circumstances I would be getting ready to go home with my new baby but instead we've just had a teleconference with UAMS to give us options.  There were only two, discharge baby Jay and have hospice come or allow her to stay in the hospital for a few more days.  I feel more comfortable here in the hospital for a few more days.  On a lighter note, we had a volunteer photographer come and take pictures of our family.  It was very sweet of her.  We also got Jay's footprints done today.  You never know what God has in store.  He's the potter we are the clay.  He has His own plans.  I'm definitely still praising Him in spite of.  God is good.

Our little fighter...

Jay's first night was pretty peaceful.  She's still yet to cry bless her heart.  She's such a good baby and I could hold her forever.  Her heart rate is still consistent which amazes me how good God is.  The cardiologist at ACH gave me the assumption that she was only living off of me in the womb.  Well, she's still going.  Only God knows how strong we really are, afterall He is our Creator.  I've entrusted her in His hands and I'm going to embrace every momet I have with her.  She's so soft and precious.  Never could I have imagined what this moment would feel like.   God is good.