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 www.myspace.com/timringgold for more songs available for download.

Good night and God bless every one of you.

Namaste.

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!

Ready To Come Home?

Same bat time, same bat channel...11:21!

First off, thank you all for your love, thoughts, intentions, prayers, visits, and messages. They have transformed this journey into one of hope...from Tragedy to Triumph.

I really gushed last night...don't have quite the energy tonight. Today was so busy. We walked into the NICU and there were 5 staff members and 2 reps from the bandage company waiting for us. We're there 2 minutes before we're asked if we're ready for Bella to come home today. Before we can answer, we are told there will be no nurses visiting to assist with wound care till Monday.

...how about ...

NO WAY!?!?

She is still missing a large amount of skin on her feet and left knee. We're just not ready. We also need to come up with a car seat solution. Her car seat looks like it's made out of sandpaper. We haven't had time to figure out what clothes will work, and we need new bedding. 24 hours notice was just not enough to be prepared and not overwhelmed.

So...Monday is the day. It gives us 2 days to work with the attending nurse on perfecting wound care and have family and friends shop for necessities for home care.

Now, let me tell you about how prayer is driving this experience.

1) The reps from the dressing company sent us home with a week's worth of dressings for free.

2) That distributor isn't in our insurance network unfortunately. The in-network provider only carries 4 of the 6 products needed to dress Bella's wounds every day. Sooo, the case manager managed to convince CIGNA to change distributors so we don't have to order her supplies from 2 different companies. Insurance companies willing to serve their customers?

3) Bella's blisters on her face from yesterday...almost healed themselves OVERNIGHT. The same size blisters that formed in the first 2 days in her isolette are still healing. She is healing faster and faster from smaller and smaller blisters.

4) DEBRA ( national non-profit for EB patients and families ) has a dedicated EB nurse educator in Ohio who knows about Bella and is awaiting our call. DEBRA is sending us a welcome home basket full of supplies and resources!

5) I got my first referral for music therapy in the NICU today. A nurse came into our room during Bella's wound care to say a parent from the NICU pod where Bella started out called into the NICU this morning and asked for me to play for his daughter. I was happy to do so.

6) This may not be a prayer thing, but it was good. Bella's clinical nursing specialist, Beverly, said today that while this is only the 2nd EB baby she's seen in 8 YEARS, SHE APOLOGIZED for the slow learning curve of the nursing staff regarding Bella's care. It was really great for her to take responsibility for the reality that while this is a rare case, there were several things that could have been done to make Bella's care even better. She was a class act.

7) Lastly, I want you all to know about Daphne. She is a baby in the same pod (room of 9 beds) Bella was in. She was the most chronically agitated baby in the pod while we were in it. My heart went out to her. Her mom appears to be a young, single mom who we see waiting by herself at the end of each day for the city bus outside the hospital when we roll out in our comfy Toyota Sienna. Mom appears to only speak spanish, so I had never really connected with her, but I really wanted to try to calm Daphne while in there. Well, today, when I went in to play for Faith, my referral, Daphne was crying, clearly agitated, and mom was struggling to finish what looked like a diaper change. I decided today was the day, so I just slowly walked up to play, when I hear music coming from Daphne's crib! Mom had brought in a little wind up music device that played lullabies. Good for her, except it didn't appear to be helping. Right as I stopped playing so it would sound like chaos, the winder ran out and stopped. That was my cue. I started to improvise a gently lullaby about how much her mommy loved her and how everything was okay. Within about 3 minutes, Daphne was in mommy's arms, just staring peacefully at mommy. After 4 minutes, Daphne was asleep in mommy's arms.

Man, I was so grateful to finally get to connect with Daphne and her mom.

8) Oh, by the way...

...THERE WERE NO NEW BLISTERS ON BELLA TODAY! IT IS WORKING!!!!!!!! I can't even tell you the confidence in this miracle unfolding as I held and bottle fed Bella this afternoon. She felt stronger, bigger, healthier. We joked together (well, I joked with her as she slept while she was supposed to be eating). Things felt, well, normal.

9) Oh, p.p.s. Tomorrow night (Saturday) is Ali's POTTY PARTY! She is fully potty trained through the night with a 9 day dry streak currently intact....and...tonight is her first night in big girl underpants! YEAHHHHH!!!!!! You know what that means?

We'll have 2 WHOLE DAYS of diaper free living before diaper wearer 2.0 arrives on Monday! Cheers to another 3 years of diapers....but not till Monday, baby! WOOOHOOOOO!!!!!

Good times, good times.

Really, there is no bad today. It is really alllllllll good.

The request:

Please create this vision with me again. One day, Bella will be able to say, "Yeah, I had this rare skin condition when I was born, but when they brought me home from the hospital, it just went away."

Also, please pray for Bella's neighbors: Daphne, Faith, Elizabeth, and Jordan. Some of them will be in the NICU for many many weeks to come. Thank you for extending your love and generosity to them!

Oh, and don't forget go to www.myspace.com/timringgold to purchase "Bella's Song" at the bottom of the page.

Thank you all. We love you. Good night.