Leah is 4 days old!!

Our goals for Leah is to see if it will be possible to work towards bringing her home to care for her whatever length of time she can survive. In order to do this, her needs have to drop down to a level of care, that we too can provide at home. So, different from hospice care, our goal is to continue to provide medical interventions from home (hormone therapies, if they help, to replace those missing since it was discovered today that she does not have pituitary function.) This is the "master gland" that controls endrocrine function....however some hormones can be given through her feeding tube that could help her to stabalize enough to come home, but ONLY if her body can respond appropriately to them.) So we meet with the Endocronologist on Thursday to learn how to test her blood sugars, etc. We'll learn to use her NG tube for feedings....it goes through her nose...so we'd have to be able to insert, clean, maintain it. They think that she "should" still be with us for at least the present few days, as nothing seems immediately unstable that they are not able to treat within the NICU through IV, Photo Therapy for Jaunice, etc.
Sorry this update is so brief! It's been an incredibly busy day, and I'm off here at 8pm to go back up to visit Leah. We were unable to hold her today due to her being inside a "box" today receiving the Photo Therapy, as well as an EEG scan of her brain waves that took several hours. But they said I could come back in the evening and possibly get to hold her.
We love her more and more each day! Everything she does is so cute to both Luke and I. Her noises, movements, face, hair, etc. We are definately adoring parents! Kyla got to peek at Leah through the NICU window again, which was very sweet!
Thank you for your continued prayers, that Leah could become stable enough to come home. We understand that her bain malformation is very severe, and that her stabalizing may or may not be possible for Leah. We are waiting to see what God has in store for her life!