Yesterday

I spent most of yesterday in the room with Stephen so I didn't find any time to post about the day.  Yesterday one of the lines through his umbilical cord was taken out so we were able to begin feeding him.  He did so great.  He took an ounce the first time, 2 the second and 1 more before I said goodnight.  He is such a sweet little boy.  The nurses just love his full head of blonde hair and how mellow he is which is, surprising due to the medication he is on.
This has been such an emotional roller coaster.  At times I am able to just sit and truly enjoy my son.  Being able to hold him and feed him has made it all feel more real and me feel more like a mom to him.  I am so grateful that he is stable and doing so well and that we have this precious time him.  But there are the other times when you realize this "stable" baby is being kept alive through an IV.  Stephen would not be able to live right now on his own and the realization of that is more than my heart can handle.  Joe and  I know that he has to get a lot worse before he can truly get better.  Our little baby will have to undergo full blown open heart surgery.  How do you prepare for that?  How do you give over his life to someone else's care?  It hurts every night I have to leave him when he is doing so well, how will it be when he is not?  We have been told that there will be ups and downs.  He will take 1 step forward and 2 steps backward.  We will want to know if he is going to make it, and they will not be able to give us an answer.  Only time will tell.  There are so many different variables and possibilities that predicting an outcome will be impossible.
I know all of the "answers".  He is God's child and he been entrusted and gifted to us.  God has a perfect plan for him.  God cares more for him than we could ever know or understand.  God can heal him.  God can use this for his glory.  All of this we "know" but I can promise you that knowing it and living through it are not the same.  Before Stephen was born I didn't daily meditate on the fact that my children are god's children and that it is he who is holding them in his arms.  I didn't need to because I felt more in control of their lives.  I dress them, feed them, play with the them, coach them, etc.  With Stephen's life I have very little control.  I can't give him all the care he needs.  I can't fix his heart or sustain his life.  I can't even be there physically with him all of the time.  Every day I understand what it means that his life is not mine alone.  Every day I thank God for my time with him and plead with God to give me more.  Every day I struggle with the possibility of death...every day.   God has given me what I need for each day.  He gives me peace, he gives me hope, but that doesn't take away the painful reality that because of sin there is pain and death and that even babies suffer those consequences.  I don't blame God.  I know he is sovereign and I know he is with me.  I know that death ultimately brings life to those who believe.  I know he will walk us through whatever outcome may come our way.  I know a lot but I have never had to live out the reality of it before.
As of now there is no schedule date for his surgery.  They said it will most likely not be before Monday but would probably be sometime next week.  We were told that we will most likely only be given 12-24 hours notice.  They don't want to do the surgery too early.  They want to give their lungs time to adjust, etc.  And they don't want to wait too long because other side effects begin to kick in.  So they monitor him and look for signs that signal it is time and then they do it.
So please continue to pray for us all.  The kids seem to be handling it very well.  They love heir brother.  Michael and Lizzie even got to help feed him a bottle which was so fun to watch their excitement.  Audrey just adores Stephen.  I look forward to the day when she can hold him in her arms.
And please continue to pray for Stephen's life.  We pray that death isn't an option and that he will love a long life to the glory of God.
And pray for our hearts.  This is one of the hardest thing a parent can ever go through.
Thank You =0)