Monday, August 9, 2010

August 9: Day +38




Happy Day!!!!!

Daylon's extubation was a SUCCESS! Please got check out Jennifer's (Daylon's mommy) update at their blog listed on the right.

Bella had a pretty rootin' tootin' good day as well! Docs were buzzing at her progress today! They were able to turn down her norepinephrine and her vent quite a bit. They also took off a bunch of the excess fluid they left on her on Saturday. Her blood pressure was STRONG throughout the night, all day, and into the evening, but by about 8pm, she had had enough of all the weening and evened off for a while. All in all, GREAT strides today.

We needed to go up on her precedex today as well after watching her do the "reverse caterpillar" breakdance move in bed. She was a breakdancin' fool this morning, and again this evening. It was kinda cute to see her so animated, except that all the movement could cause damage to her airway from her tube, so it really was more stressful than anything else.

Renee, her evening nurse, and I started a bet on what day Bella will get extubated. I said Thursday, and she picked Wednesday. We started getting other staff in on it, and at one point, there were more people thinking Wednesday than Thursday, but Bella recovery hasn't exactly moved in a straight line, so I foresee a little ebb and flow of progress between now and then. Regardless, there is a lot of good energy right now surrounding Bella's care, and I think Bella just doesn't wanna get left behind on 5C now that Daylon is off his vent! She's so smitten.

Angelique has a side bet going that Bella will also PEE on Thursday. I learned today that it is hard to pee while on continuous dialysis because it is constantly pulling off whatever is going in, so it doesn't give the body a chance to convert excess fluid into urine. That made me feel better; like her kidneys may not be as bad off after all, but more like we are doing all the work for her right now to help her recover.

Anyhow, it's nice to have a positive air on our wing; room 1 and 3 on the PICU have been pretty intense these past 40 days and 40 nights. I am grateful that I've been allowed to sleep at home every night with Ang and Ali this whole time so that I can remain healthy and rested. I know that once we get back over to 5D, it's gonna be a little hectic at night for a while, so sleep while I can!

Lastly, I want to thank those of you who have taken the time to post comments about returning to prayer and buy groceries et cetera. I sat on my prayer bench this morning and wept tears of joy reading those comments. I am reminded of a song I wrote called "Ripples in the Pond." I have shared these words before, but not for a long time. The chorus is:

Sometimes you never know
how far the ripples go
when you throw yourself
into the pond called 'Life.'

Sometimes you never know
how far the ripples go
but you throw yourself back in again and again...
... with a smile.


This community is real. We love one another. We pray for one another. We are a part of each other's lives. Though most reading this have never met each other, we feel connected. Bella connects people. Our evening nurse Renee DREAMS about Bella, and our Renal Fellow, Jurat, loses sleep over her. When you write and tell me that Bella is on your mind or in your heart as you move through your day, it washes the pain away. In a world where it is so easy to be resigned and cynical that one person can make a difference any more, I watch my daughter, a helpless child, mobilize an international army of prayer and support.

I also want to make a special acknowledgement to those who lift Bella up in prayer. That is your most sacred, most intimate space. That is your most private time. THANK YOU for allowing Bella, and our whole family, into such a sacred space. We are honored to be there.

For those of you that may not call your thoughts, mediations, wishes, or intentions "prayer," I thank you with the same reverence, for I believe the energy and purpose is the same.

When people ask, "Why does God let bad things happen in the world?" I think it is so we get the opportunity to experience ourselves as generous, loving, compassionate, and nurturing. We don't need tough times to call upon these things. However, I think each tragedy or trial is 'an alarm clock' that 'wakes us up' to the opportunity to BE these things FOR EACH OTHER. THAT is when I experience the richness of what life has to offer. To give and receive these things, that is what it is to be wealthy.

I may not be financially rich, but I am wealthy beyond my dreams. Thank you for 'investing' in us. We are so blessed to have you walking with us. Good night.

16 comments:

  1. Oh...these posts are so positive. Now I'm smiling too much to sleep.
    Not only do things sound Good...She looks great in that picture ( as does Ali!)! I was just reading daylons update...so much happiness! These babies will change the world....thank God for everyone involved! Prayers continue for similar posts!

    ReplyDelete
  2. Jack and Molly's NanaAugust 9, 2010 at 11:00 PM

    Another spectacular day in your neighborhood; I love it! She looks healthier every day; what more could we ask?
    It's so wonderful to hear the joy in your "voice" and to know that your prayer army's work is paying off. This is the kind of post that lets us all know that He really does have our ear; must be REALLY wondering about that pee-pee prayer thing.......
    Here's to another great day!

    ReplyDelete
  3. Whew hew!!!! Thank you Lord for watching over Bella, and for these great updates! I looked like a plucked chicken with the chills I got reading this update....praise God! And right on Daylon- fan-ta-bu-lous!! Prayers are still going strong....I haven't and will not let off!

    ReplyDelete
  4. So great to see more pictures of your girls! Bella looks wonderful and I love to see Ali leaning over to kiss her sweetly! Prayers are non-stop here for you all and our two year old son, Salvatore, says special prayers for Bella each night!

    ReplyDelete
  5. It's so great to see daily improvement in your gorgeous daughter! Thank you for acknowledging those who do not formally pray, but rather send positive thoughts and energy. I rarely respond when someone asks for prayers, because I don't want to offend...But, we devote time each day to think about those who are in pain, struggling, lost etc....that they may find comfort and peace. You all are AMAZING:)

    Shannon

    ReplyDelete
  6. I love the post. It's so uplifting. Smiles and Sunshine all around 5C now! Some nurse came in today and told me that Bella and Daylon are having a race to see how is released from the hospital first! This is news to me, but I'm for it! These kids have needed some motivating! Whatever gets them going, I'm good with! I'm so grateful we're here with your family to not only rally each other in the bad times, but to celebrate the good times with. Love, Jenn

    ReplyDelete
  7. Hooray for Daylon! Hooray for Bella! Its so wonderful to hear positive news again! Sending more positive vibes to all of you today. And blessings to you Tim, for being the bridge that makes it possible for all of us out here to feel "connected". Connected to Bella, connected to each other, connected to the universe...it is a feeling like no other. And one I think we are meant to have always, but somehow we have forgotten. That we can change the world with our very thoughts and feelings. Thank you for awakening that knowledge in me again. And always, Bella, beautiful baby girl, will be well! Hugs to all!

    ReplyDelete
  8. I may not comment often on your page but I do want you to know that I check in on Bella everyday, it's one of the first things I do everyday. She is prayed for everyday as well. May God bless you as you continue to be Bella's voice.

    ReplyDelete
  9. Just wanted to let you know that although we are in Boise, Idaho, we check Bella's blog every morning and think about and pray for all of you every day. Love, Thomas & Elaine

    ReplyDelete
  10. Great news. And I loved the beginning of your post "Happy Day". Our friends (the mom is recovering from surgery to remove cancer) just got a kitten and their little girl named her "Happy Day". I just read that right before I read your blog, so it was pretty neat.

    ReplyDelete
  11. You ask why God allows bad things to happen................. I have come to the understanding that God set up the laws of nature to help govern his creation. When things happen, he weeps with you and gives you what you need (strenght) to move through the situation. Ask and you shall receive. I have experienced a birth defect with my child and came to understand this. I am a retired NICU/Recovery Room (pedi specialty) RN so I have seen Gods power and love abound in many situations. Never could I believe He would inflict such pain on parents. He is a loving God and bestows blessings on those that ask!
    With love and admiration -
    Elizabeth

    ReplyDelete
  12. WE are so smitten with these wonderful posts of such progress! We talk about you guys and Bella everyday on our drive home. I read the blog first thing every morning as soon as I get work and my sister Natalie and I email each other to go over the news of the day from the blog... then we talk about what we will pray for and who else we can get to pray with us :)
    We want in on the side bet with Ang that pee will come Thursday... we'll be doing pee pee dances for her!!
    Always in our hearts,
    The Vanderbooms

    ReplyDelete
  13. So glad to hear that Daylon's procedure went well! Continued prayers for Bella's recovery from Los Angeles...

    ReplyDelete
  14. Oh yes the ripples in the pond....... always nice to be reminded of that :) These were such great words to read. Lots of love to bella Bella!

    ReplyDelete
  15. I follow Bella and Daylon's journey daily. I am a good friend of Courtney and Tripp!! Courtney and I went to high school together and we live in the same town and see each other regularly. I am IN LOVE with your Bella as i am with Tripp and Daylon. I never knew i could be so touched and so inspired by these children, but they humble me everyday. God Bless them and may his strength forever be with you guys as their parents. You guys are truly full of God's grace...keep it up. I pray to the fullest for Bella and love to see the positive news! Lots of continued love, support, and prayers! Sheri

    ReplyDelete
  16. You are not the only ones blessed...you have blessed us by sharing your Bella. Denise, WI

    ReplyDelete