Details

Details...... over your very own daughter going to be with Jesus are absolutely....unthinkable......unimaginable.  Being told that your daughters final days are here and now, are just to much to deal with.  Then, you add in funeral arrangements, burial arrangements, wondering when the Lord is going to take her, wondering when we as parents may be forced to pull her off life support, details of leaving the hospital and traveling over two state borders with your daughter that has already left her earthly body to be with Jesus, wondering how we are going to go home again... without our child, on and on and on.  These are things in life that no one, and I mean no one thinks about.  And I am grateful for that.  God doesn't allow many of us to feel this kind of hurt and experience these types of situations.  Why he has chosen us?  We are not sure.  But we do know that there is a purpose, a much bigger purpose than just our little family.  We trust that our Lord doesn't give us any more than we can handle.  While this is the most difficult time in our lives, He is our Rock and we know He is with us.  It is difficult, very difficult, but when the Bible says, "Trust the Lord with all your heart, and don't depend on your own understanding." Proverbs 3:5, we know we have to do just that.   Because, we don't understand.  We are not capable of understanding... That's why He is God and we are not. 

Being told one day that your daughter is improving and being told the next that she is not, is torture.  Being in the hospital day in and day out and spending every night here for almost a month straight, I'm tired.  I have slept on average less than 3 hours per night for over a week and a half now.  And I'm prepared to do it for the rest of my life if hat's what my baby girl needs.  I would go to the ends of the earth for her.  I would lay down my life right now for her.  But, it wouldn't help her and I don't need to, because my Lord and Savior Jesus Christ already did!!!  And he has suffered much more than I could ever dream of.  It doesn't make my human heart hurt any less though.  I want my baby girl.  I want to continue changing her diapers.  I want to continue to clean her trach site.  I want to continue to clean her nose.  I want to continue suctioning her mouth.  I want to hold her.  I want to tell her how much I love her.  I want to continue to comfort her when she gets upset.  I want to show her her room at her home.  I want to celebrate her first Christmas and Easter and her birthday with her.  I want to take her to her first day of school.  I want to tell her all about Jesus and what he has done for all of us.  I want to teach her how to drive a car.  I want to walk her down the isle.......scratch that, I want her to live with us forever.  But, I can't.  But, Heaven, for her, and for all of us who believe, will be all of those glorious moments that we experience her on earth and much more..... with no pain, no suffering, no lies, no false hope, no sin.  Period!  And for me, I cannot, as Ellie's daddy take that away from her.  The Lord is calling her, I know I have to let her go.  I just haven't fully come to terms with that.  I want to keep fighting for her.  But I have to keep telling myself that I know that my Heavenly Father is going to be a much better daddy than I could ever be.

Please continue to pray for Ellie, April and me.  We need help from our Lord.  We need strength and peace.  Please pray for the nurses, doctors and respiratory therapists that are sad and hurting because of Ellie.  Please pray that our little miracle, our little world changer, continues to touch lives.... I know she has touched mine.  Please pray for all of the wonderful children that are here.  Please pray for their families.  Please pray that God continues to work miracles in these babies lives.  Just tonight I was informed of yet another miracle from a mom down the hall.  These parents were told that their son needed a stomach feeding tube and guess what - HE DOESN'T.  After over 8 months in two different NICU's, he's going home next week for the first time.  PRAISE GOD!!  God is still in the miracle making business.  Sometimes the miracles he performs are not the same miracles we pray for.

God bless you all for your prayers and support.  The comments that you all leave touch our hearts!  FYI - this blog is know being hit over 4,000 times a day now.  What a blessing!   Thank you all!

Matt (Ellie's fighting daddy)

P.S. Just in case you are wondering how crazy I am about my baby girl.....I just took the 10,000th picture/video of Ellie today.  For those of you that know me, you know I don't do anything small, I go all out!!