Saturday, June 6, 2009

NICU Weekend #2

Happy birthday to my guitar hero and inspiration Steve Vai today.

Day number ... [I lost count] ... in the NICU ... [seems ... like ... 30]. I think it is actually day 11.

Our brains are mush. Ask me how long did wound care take today. Go ahead. Ask me.

I think 3.5 hours is right. 2 hours for the hands, groin, and right leg...then a break. Then, 1.5 hours just on the left leg.

Three and a half hours of wound care dressing changes today. Why, because I was doing it for the first time myself. Luckily, our awesome favorite day shift nurse Tanya was on a different floor but came down to help Ang, the new nurse du jour and myself. Otherwise we would have been up the creek as our hero Betty does not work weekends.

We're hoping to get it down to 2 - 2.5 hours tomorrow.

We just may be doing it at home on Monday. we're hoping we get one more session with Betty watching us before we venture home.

Having said all that, it was AWESOME and EXHAUSTING at the same time. Bella tolerated the two sessions really well, which helps immensely. The four of us in the room worked together AMAZINGLY. We really worked like a think-tank; constantly brainstorming and bouncing ideas off each other. Really great teamwork today!

But, let me tell you about the latest act of Providence.

I have to give you the short version because I am falling asleep writing this, but it's gooood.

This morning, I saw my next door neighbor while out walking my dog. I wanted to avoid him and not get into it all, and as I was retreating from him, I felt a tap on my left shoulder and a voice/feeling that said "Mike's wife is a NICU and pediatric nurse and has volunteered to to help if ever needed. GO TALK TO HIM." So, I walked up to Mike and asked him if she is still in the biz.

He then proceeds to say that she is in charge of home visits for OC nurses Dept. of Public Health. If we ever call the county for a nurse to come visit...turns out Becky is that administrator who sends the right people to the right cases. In fact, she has a nurse who has a EB kid in her case load who she will send when we are ready for her.

Turns out my next door neighbor is a key player in this journey once we enter the outpatient world. What are the odds?

Who cares. It's Providence in motion.

To other events...Ali's potty party was awesome! Tonight after I played guitar for her in bed and sang her Bella's Song AT HER REQUEST, she began to improvise lyrics to a new song and asked that I play guitar.

Her are her lyrics:

God is healing her
Because she is a strong girl
Because she drinks her milk
Because she drinks a lot of milk.

I didn't ask...she just went there on her own. She is the greatest daughter ever.

Okay, I can't see straight any longer. Thank you all for your continued support. Please keep posting comments and messages. They are the wind beneath our.....collective wings.

Please check out for more songs available for download.

Good night and God bless every one of you.


The bad?

1 small new blister on the left arm and two medium sized blisters showed up inside existing wounds under the dressings. Betty, NO blisters from the pulsoximeter!

1 comment:

  1. From Care Pages Site:

    Posted Jun 7, 2009 9:09pm
    by Robin Setto

    Dear Tim, Angelique, Ali and Bella,
    You all are such troopers! We can only imagine how exhausting this has been for each one of you but can tell you are so focused! Our intense prayers continue and thoughts of strength and hope surround you.
    Michael and Robin Setto
    Posted Jun 7, 2009 3:45pm
    by Dennis Jarosh

    Tim and Ang, Thanks for taking the time to keep us in the loop. I start most mornings with a Bella check. She is a lucky girl to have a family and friends commited to her healing. Please let us know what more we can do for you, Angelique, and Ali.
    Posted Jun 7, 2009 2:10pm
    by Conde Rogers

    We don't always pay attention to the tap on our shoulder ~ thank goodness you did.

    I love your updates. I am so touched, so moved and so inspired by who you all are being; each of you individually and as a family.

    Much love to you and miracles each and every day.
    Posted Jun 7, 2009 12:15pm
    by Kathryn Fulton

    Great update Tim. Miracles abound. Thanks for keeping us posted ~ Keep up your good health. Lots of love, Kat
    Posted Jun 7, 2009 12:13pm
    by Betty Kuo

    :) you guys rock! i will come see you guys first thing tomorrow am :) i'll be at 8-815 am :) seriously, no blister from the pulsox? wow!!! :) :) so happy to hear...sad about the 3 new blisters though :(
    Posted Jun 7, 2009 10:59am
    by Barbara Dailey

    what the heck is a pulsoximeter? Never mind - we sure don't wnt to add anything to your load by having to anser that - we see God's miracles over and over in your story -How can anyone not believe in God? Our very best love, prayers, and wishes to you and your beautiful little family and to litttle Bella, who lives in our prayers - Walt and Barb
    Posted Jun 7, 2009 10:33am
    by terri wiener

    Providence is a mighty awesome thing. Thank you for continuing to send these emails. I think of you all and send you healing thoughts.
    Posted Jun 7, 2009 10:04am
    by Cindy Barr

    Another fine example of God's grace through the power of prayer! God IS good -- all the time!

    More Prayer Warriers in prayer for Angel-Bella: The Pacific Southwest Region Women's Board of the Christian Church Disciples of Christ.