Friday, September 9, 2011

The Fighter

Naya absolutely astounds me. Right now, her sats are holding steady at 97/98 (out of a possible 100) and her blood pressure has remained stable all day. We are so absolutely thankful and grateful that we did not lose her yesterday. It would have been dreadful for multiple reasons. Yesterday, our first niece was born. Mom and baby are doing well and we are so thankful for that. She is a beautiful little girl and I hope that someday, my princess will be able to run around and play with her lovely cousin.

Dan and I are doing all right today but we are still apprehensive and torn. We have ridden this roller coaster for so long that we know not to get our hopes up too high when good things happen. I know that sounds depressing but there really is no other way we can see to deal with it. Hope for the best and prepare for the worst. I just know that my daughter is a fighter. Yesterday, before they readjusted her chest tube, I kissed her and told her and told her that if she was too tired and sick and wanted to go, we would let her. That no matter what, her dad and I would love her and that she would always be in our hearts. I told her that it was her decision and her actions would dictate what road we would take. I don't know if I'm fooling myself but I truly believe she made the decision to keep trucking. She wants to keep fighting and when she wants to give up, she will. At least that's where I'm at today.

Everyday, I play her music on Pandora on my phone. I am one of those people that always takes musical lyrics to heart and interprets them within the state of my own life. Today, the song "You Are My Sunshine" came on. I don't know if you all realize this but that is an extremely depressing song but also very fitting. It says:

You Are My Sunshine
My only sunshine.
You make me happy
When skies are grey.
You'll never know, dear,
How much I love you.
Please don't take my sunshine away

The other nite, dear,
As I lay sleeping
I dreamed I held you in my arms.
When I awoke, dear,
I was mistaken
And I hung my head and cried.

I never really listened to the lyrics before but I did this time. I too restlessly dream and think about my baby all night long. I kissed my little girl while stroking her head, singing along and crying into her hair. I really don't want to lose her. I know that any parent in my situation says the same thing but I don't care. My heart is breaking so badly right now. It kills me to think that she is suffering but at this point, I can't let her go. She is truly the sickest kid in this entire unit right now and this is the hospital where they send the sickest children. She has something that they have no idea how to treat, let alone how to diagnose. I try to have hope but with that fact slapping me in the face every minute, it's very hard. I truly don't know what to think or feel. I just have to keep taking this day by day, hour by hour, minute by minute and hope I don't go crazy in the meantime.

Thank you all for your kind thoughts and words. It may not seem like it but it does help us during this time to know that so many people are thinking and caring about our baby.


  1. Jamie~ I pray every day for that lil darling to keep fighting and for you and your family to keep up your strength while Naya fights through this. You are staying so incredibly darn strong during this hellish time! I pray that they find a reason for Naya being so ill and that they can find a cure or treatment for her. Stay positive and know that you have so many people praying for you guys.

  2. Jamie, you and Dan are in our thoughts and prayers constantly. I wish I could do something or say something to make this all go away! Unfortunately we can't. Just know that we love you all soooo much and we wish we could fix this! Naya is on my mind the second I fall asleep and the moment I wake up! She truly is an inspiration to us all as are you! God will bless this little fighter and no matter how bad this is I will always believe in her! All our love is with you during this time!

  3. It's so hard to find the right words, Jamie, but I read your blog here everyday. I can't even begin to imagine how you feel but I know that you are handling it extremely well under such an extreme situation.

    You, Naya, Dan and Ty are in my daily prayers. You all have so many that are thinking of you at any moment of the day, and we all hope we can give Naya the strength she needs, and you and your family a happy, peaceful resolution to all of this soon.

    Much love (((hugs)))

  4. My neice, Sara Smith, is your friend and she has asked us to pray for you, your family and your daughter, Naya, I am also Denise Haight's mother and she posted a comment on your blog last night. She is an awesome woman of God and she has walked in some pretty tough shoes too...not as tough as yours but tough just the same. I have read many of your posts and my heart cries out to the Lord for all of you. I pray that God gives the doctors the answers they seek, I pray that God give you answers to the questions that you ask and I pray that the right door is opened at the right time for Naya. The Bible says: "Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you." Little Naya has many people who have never met her or her family praying. We are asking God that His will be done, we are seeking answers to our prayers and we are knocking on Heaven's gate that God will open and pour out a healing on Naya. The healing He pours out may not be the one you are expecting. I pray that whatever the outcome that God gives you the strength and the courage to stand strong. Jesus Christ is our Healer, our Comforter and our Rock. "I can do all things through Him who strengthens me." Philipians 4:13. I have seen first hand what the power of prayer can do. My grandson is living proof of God's power. Sara's husband is living proof. I will continue to pray for all of you. May God's hands rest gently upon Naya. God Bless you. Joan Rose

  5. From the day we arrive on the planet
    And blinking, step into the sun
    There's more to see than can ever be seen
    More to do than can ever be done
    There's far too much to take in here
    More to find than can ever be found
    But the sun rolling high
    Through the sapphire sky
    Keeps great and small on the endless round

    It's the Circle of Life
    And it moves us all
    Through despair and hope
    Through faith and love
    Till we find our place
    On the path unwinding
    In the Circle
    The Circle of Life

    From the Lion King by Elton John

  6. I was directed here by Cristina Cabrera. I've been reading all your posts for the last 2 hours and my heart is aching for you guys. I wish you all the best, you are in my thoughts and prayers.