Update...Finally!

Well,
I have intended to get on and give an update...but hasn't gone as planned. We've had long days and I haven't had consistent access to the internet. I found out I can access it at the NICU waiting area. That is not my ideal location...like to be in quiet and get "in the zone." :) I will just have to adjust though.
So, Spencer and I are staying here in Jackson at the Ronald McDonald house. It has been a blessing. Selah is in the NICU. They are taking good care of her and watching her closely. We've been blessed to have doctors and nurses that are compassionate. Of course there are times when it is still so hard to leave her in hands that aren't ours. It kills me to leave her there. I think about her care and if she is awake or upset and want to be there. I want to be there to comfort her and to love her and to reassure her that she has not been...just abandoned. It is a struggle but I try to just pray over her and pray against all those worries and concerns that surface.
She has her original trach in now. They are talking about changing it out this week. She will keep the trach because it is her way of breathing. She is breathing on her own but she still has some air/oxygen support. Her oxygen levels, breathing, and heart rate have been staying good. She has a NG tube now...a small tube that goes into her nostril and down her throat to her stomach. This is the way she receives milk/nutrients. She just got that put in today. We are praying for successful feedings with it. We should meet with the facial surgeons within the next week or so to discuss surgery for her. They call it a jaw distraction. We don't know what it will entail or when they look at doing it. We will just wait to meet with them. We met with the genetic specialist and they told us that she has Nagers Syndrome. It is a rare syndrome. Some characteristics of the syndrome that she presents with are the small jaw and lack of thumbs on both hands. Hearing difficulties are possible and they have been checking her hearing and don't have any definitive information yet. They will also check to see if reflux will occur as they increase her feeding...can be associated with the syndrome also. There are still some concerns that can arise but for now those are the main ones being looked at. They did say that it should not affect her cognitively or developmentally. There is still so much that is uncertain. We are truly trying to take it day by day...moment by moment.
We look at her beautiful face, her precious lips and nose, her long fingers and toes and are in awe...so precious! We are so thankful to get to see her and yet it hurts so bad to think of her hurting or having to go some of things she is or might have to. I do have to let God gently remind...again and again...that He did "knit her together and form her" (Psalm 139) and He knows about all of it. I don't like it or understand it, and I have a lot of unanswered questions. I do believe God's promises, I do hope in Him, I do trust in Him, I do thank Him for His presence...I pray and my heart cries out for God to continue to help us to rest in Him.
We are truly thankful for your prayers and support...thank you!