First 24 Hours at Home

First 24 hours at home...done...still a roller coaster, but with moments of almost normal serenity!

Our in home nurse was great today. Turns out she'll be our nurse all week, and if not, only one more nurse will come by. I thought it would be like the NICU where Bella saw a different nurse every day.

Today was nice at times to be so peaceful, but Bella beat herself up pretty good with her own two fists today and her face has taken a beating. We also found out from the EB nurse educator that reflux is common in EB, so we installed a 2" elevation for Bella's head in her cradle to hopefully help with that. She just seems to have two main states...sleeping and crying. Normal right, but the crying is like turning purple screaming and almost inconsolable. Ali wasn't like that so it wore Ang and I out. Also the nurse had to leave to go to her other job in the middle of the wound care. Ang and I thought we could do the right leg and hands by ourselves, but you just need 6 hands to manage it and it took us pretty close to 2 hours to finish up. THANK GOD Nanny and Manny stuck around this afternoon; they helped care for Ali wonderfully during our first in home wound care session.

Gang, we thank you all for the continued prayer and support. We are pretty worn out right now, and really are carried by you.

Tomorrow: the first trip out to the pediatrician. She's already due for her 2 week check up...never mind the fits 12 days were in a hospital. Please pray that Bella tolerates the checkup well.

Please hold with me this vision again:

"One day, Bella will look back and say, "Yeah, when I was born, I had this rare skin condition. But when they brought me home from the hospital, it went away."

All things are possible through God.

Good night, keep the posts coming. Your messages keep us going.

We love you all.

We Made It. We're Home.

We made it. We're home.

One Chapter ends, another begins.

First of all, where do we put all the crap we came home with???

The house was already splitting at the seams...wow, wound care stuff...and there are literally BOXES of supplies en route from Indiana for dressing changes for Bella's limbs. Whew. Lots more to figure out!

Bella and Ang are asleep on the couch downstairs, and it would make a great pic if I could just get out of bed myself. Till today, I have overused or misused the word EXHAUSTION. Let me briefly recap the absolute drama of the day...

It all started when we thought that we had to be at the hospital at 8am this morning to meet Betty, Bella's Physical Therapist, to do the dressing changes on Bella's wounds. Thank GOD Ang's mom could be at our house at 7 this morning to help get Ali off to daycare. When we arrived, Betty informed us that Tara and Jen, our wound care reps, were coming out again to see what else we need and brainstorm one last time, but that they weren't coming till 10:30. Ang's & my mind immediately calculate the wasted 2.5 hours of sleep and growl under our breath.

I had my first anxiety attack this morning about 30 minutes into the shift. I couldn't catch my breath, was nauseous, and dizzy. I've never felt that way before. It was extremely frightening and uncomfortable. Luckily, I had the presence of mind to practice what I preach tom my patients and spent about 5 minutes doing DEEP breathing and it finally passed. We had so much to accomplish at the hospital, then we were coming home, and WHO KNOWS how that's gonna go. It just began to crush me form all sides.

HOWEVER, Betty rescued me with another breakthrough with Bella's wound care. Bella was asleep in my arms and Betty asked if we wanted to change the dressings while she slept in my arms...hmmmm...never crossed our minds that we could do that. Long story short, Betty did the hands and right leg in 30 minutes. Once the reps came, we designed a new strategy using a new product on the left leg. 30 minutes.

3.5 hours
2 hours
1 hour

We're figuring this whole thing out a little more with each day. The wound care reps COULDN'T have been nicer and more accommodating. We feel really well taken care of by them.

So, home health nurse was lined up by 8:30, wound care is happening early...discharge should be easy...right?

Wrong.

One of the neonatologists comes in to talk about yesterday's episode. I reiterate exactly what happened, and he felt he would be remiss if he let us leave without doing an EEG and EKG just so if something was going on, we wouldn't be doing a u-turn. Cool. We feel the same way, EXCEPT the results of the tests may not come in till TOMORROW...a la there's a good chance you're not going anywhere today. Our nurse yesterday prepared us for the possibility of a hurdle so I wasn't too surprised. Really, we were more concerned that whatever Bella was ding was alarming the people in the know...and that's always a drag.

So, we leave for lunch and return to have Bella dressed and sleeping in her car seat...one of the things left to do...carseat test. Okay. Check. So, Ang and I work in the waiting room setting up outpatient visits, talking to our insurance provider, who has been STELLAR to date, etc. As we are working away, suddenly I get this powerful sensation that my baby is at risk and I need to get back to her room. I explain to Ang I'll be right back.

I walk in to a scene out of a movie. A cameraman has two video cameras on tripods with various other gear set up right across from Bella's door. The EEG Team has also pulled up with their mobile cart. There are a handful of Doctors, some I recognize, some I don't standing around. It is chaos. Then, hearing test people show up, and while EEG team is there, EKG team shows up as well. I start dealing on people telling them who can do their tests and who can't and in what order...two of the teams wanted to "pumice the skin" or attach super sticky leads all over Bella's body. Nope. Not on my watch.

I was so grateful I had been listening again...call it intuition, gut, guardian angel, whatever. We were 2 for 2 with reaching out to my neighbor and keeping the techs away from Bella!

Anyhow, EEG came back normal as did EKG. Green light. Go home!

Bless the grandmas; they had been working all day to get the house ready with dinner on the table even!

We got home, tired, hungry, and exhausted by the 40 things that were done or attempted to be done to Bella. We had a wonderful meal with grandma (Ang's mom), Nanny (my mom) and Manny (my step-dad).

It is so peaceful here.

Part of me is sad to leave the NICU since it is where I want to work. The conversations I had with nursing and Doctors over the past 12 days has been really exciting, but having Bella at home recovering feels so good. I'll be back in a NICU soon enough. Now it's time to hunker down in the nest and get down to some serious healing.

Part of me also hopes you'll continue to come back to the site. I had this fear that once you saw Bella came home, you'd think," Yay! Glad that's over with!" To some extent that statement is true, but Bella's journey is far from over. We have some seriously big wounds to heal, as well as CAUSE the prevention of any new ones through proper, tender care, and the power of prayer and intention. When so many people put their mind and heart into one outcome, God, the Universe, the collective unconscious (again, whatever label works) responds.

What you all HAVE to know is that since the building of this page, Bella has had no new giant blisters like she developed in the first day-3 days. New blisters have been small in size, fewer and farther between, and have often healed themselves completely in the matter of 24-48 hours.

Thank you for all of your prayers, messages, thoughts, emails, and to those local who helped out in various ways THANK YOU. This wouldn't have turned around so fast if it weren't for you.

it's now 3:22 and Bella just went down for some serious ZZZ's and now so shall I.

Good night, and God bless all of you.

Last Night in the NICU

Big Shout out to our dear friend Jim Thomas whose birthday was Friday! Our bad, Jim!

In 24 hours, God willing, I'll be typing in this same position while Bella lies peacefully in her cradle at the foot of the bed I'm typing on.

In 8 hours, I'll be prepping for our final in-hospital wound care dressing change session with Betty our PT who is coming BRIGHT AND EARLY AT 8 AM to Bella's room. (Why Betty? That is just m-e-a-n. j/k we love you)

The fatigue is running deep, and anxiety high. The last two days have been exhausting, more so mentally and emotionally. Transitioning so quickly into EB wound care specialists has gone well, but has required every ounce of concentration and focus...two things we've been running in short supply of since the 27th. We realized that because of Bella's rare condition, we're going to know more about how to dress and care for her wounds than a nurse assigned to drop in each day. This has already become the case at CHOC. This is a little scary because, on the one hand, we expect of ourselves to be our daughter's first line of care, but learning about skin healing/infections, and types of dressings, how to apply what when...it's a lot when it's NOT your kid. I'll spare you the long tedious order of operations, but each limb has 8-10 steps depending on severity (left leg is still the doozy). However, each day, we troubleshoot and brain storm and learn a little more about how to do better for Bella. Wound care is the most painful part of this disease. EB patients liken their blisters and lesions to 3rd degree burns, so what we are concentrating on now is how to minimize the time the wound is exposed to air. That reduces pain and risk of infection, the two big hurdles this condition throws at you.

Having said all that, Ang and I completed all Bella's dressing changes in 2 hours flat today! Big improvement from 3.5 hours yesterday.

Katie, the PT today, said that CHLA (Children's Hospital Los Angeles) used to have an outpatient EB wound care clinic. She gave me the name of the PT Director there to follow up with to see if they still have that service. CHLA isn't anywhere close to where we want to be schlepping for any reason, but in case something gets too intense for us to handle with home care nurses, it will be nice to know a clinic specializing in this is only 50 miles away. (Let's hope they still have it!)

Bella is feeding like a champ with the Haberman Bottle still although we will have to fortify her breast milk with protein and extra supplements. That's cool. Mommy and daddy take supplements and protein shakes, why not our daughter?

Unfortunately, this afternoon, Bella started to display some unusual behavior that alarmed our nurse. She was twitching uncontrollably during sleep, and her heart rate spiked over 200 beats per minute during her afternoon bottle. She was also really upset whenever awake in between sleeps. She turned all sorts of dark red and purple today during her screaming fits. It was enough to completely break your heart. The resident on hand didn't think it was another seizure because seizures rarely happen in your sleep and the twitching needs to be more rhythmic and steady than Bella's was. No one had an answer for her heart rate. I walked in to the hospital confident of her medical condition, but nervous about her wound care. I walked out of the hospital nervous about her medical condition and confident (mostly) about her wound care. The switch was off-putting, and I am definitely scared about how tomorrow is going to go. Thank you for all your thoughts, wishes and prayers. All of us really need them at this crucial juncture.

Meanwhile, thanks goes out to so many for so much. I just don't have any more gas in the tank tonight.

The request:

Keep creating this vision with me: One day, Bella will look back and say, "Yeah, when I was born, I had this rare skin condition, but when they took me home from the hospital, it just went away."

I hold on to this vision with a tired and fragile grip. So many have learned so much in such a short time since Bella's arrival. We pray that once she is home where she belongs, she sheds this disorder and blossoms into a fully functioning, inspirational child and adult capable of all the things her big sister is capable of.

Transformation happens.

Please keep the messages and comments on the photos coming, and please visit myspace.com/timringgold to download "Bella's Song" as well as several others to help support Bella. (edit- the songs can also be purchased above! Thank you :) )

We love you all.

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.