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.

Thank You for Your Messages and Prayers

Hahaha...one minute off last night's post. Creatures of habit, OR WHAT??? :)

Hello all you beautiful people out there generous enough in your life to take the time to log in and read and follow and pray for us on our journey. You are the breath of life and strength keeping us moving through each day. Without you, this would all be going terribly different. Ang and I read each and every one of your posts at least once at day (once at night and if we have time, once in the morning). While we don't respond to them, please know that every one of you that has posted and visited (just seeing your name on the visitor list makes a difference!...but go ahead and post anyway! ;)) has been thanked by us. THANK YOU ALL.

Well, the day has arrived, and nearly gone. The biopsy was this morning. Armed with information for EBnurse.org, we strode into the NICU this morning with new confidence, clarity, and purpose. We were grateful to finally be pushed into reading about EB; that website is AMAZING. We learned so many useful tips that made a difference in Bella's care TODAY.

We actually told the staff a thing or two today! It was awesome because Dr. Metz was there to confirm what we were telling the staff. Here's the deal:

Dr. Metz felt Betty's wound care has been FANTASTIC and was impressed.

EB babies can deal with blisters in their mouth and still bottle feed.

Sooo....the big question was, "Was Bella averse to bottle feeding?" which the answer was, "No, she took it like a champ and was PISSED it was taken away and another tube stuck down her throat."

Sit down if your standing....

10 minutes later, Dr. Metz says to me in the nurses station, "They want to send [Bella] home tomorrow."

I just stared at her like a deer in headlights. Tomorrow?

Yeah, that's right, tomorrow, folks.

Now, it may be "as soon as" tomorrow, IF they can get the discharge planning complete by then, which anyone who knows hospitals knows is a daunting task to coordinate case managers home health, equipment, all within 24 hours. More than likely it will be early next week since the weekend will be a big waste of time since none of those people will be working.

BUT...

Bella is medically cleared to come home tomorrow.

She can feed orally on her own and wound care can be done at home. The risk of infection, believe it or not, is much lower at home than in an ICU...so they want her out of there for her own sake ASAP.

It gets better.

Because she is a medical marvel and everyone wants a pice of this story, the company that manufactures the wound care products Betty is using IS COMING TO THE HOSPITAL TOMORROW to find out more about what breakthroughs Betty caused and how to potentially re-engineer some of their existing products based on how she has modified them. They are bringing BOXES of supplies for her/our use.

But wait, there is more.

The PR team at CHOC got wind of this story a few days ago and has been trying to contact Ang and I about doing a story on Bella and her music, but GOD LOVE or social worker for keeping them at bay. today, she finally told us they would like to meet with us, and we agreed. The power of music therapy and prayer needs to be read about as often and by as many as possible.

Your prayers are being answered. I say it that way specifically because Ang and I are CLEAR that the power YOU all are generating GREATLY exceeds what we have been able to do on our own. We acknowledge and own that we have stood and loved and nurtured and prayed and played over our daughter to the best of our ability, and that first line of support has been vital and crucial to her progress, AND without YOU...our army of positivity, love, compassion, generosity, and support...we couldn't have been so strong ourselves being the parents we've always hoped we could be.

Thank you.

Thank you.

Thank you.

Now, to the bad...

One of the staff, bless her heart, didn't realize yesterday when she hastily taped the feeding tube BACK IN, that you cannot use adhesives of any kind on an EB baby. So today, as I held Bella, I watched from point blank range the nurse pull that tape off bella's cheek, along with a roughly one inch long by half inch wide chunk of her skin.

Man, that made us so mad. Mad at the nurse for making a knee-jerk reaction while we were at lunch to reinstitute that feeding tube. Mad at the staff for not having read enough on EB to have known not to use ANY adhesives. Mad at the system for giving us a new nurse every day, so that every day, it was her first time ever dealing with EB, so the collective growth curve was far lower than it could have been. And, mad at ourselves for not being brave enough to read up on EB sooner.

What can you do? I don't blame anyone for it. Her skin will heal as it is doing so well. This case is so rare, everyone is learning as they go, including us...but man, in the moment...grrrrrrrrrrrrrrrrrrrrrrrrrrrrrr...

Bella's face today is covered in blisters from her rooting yesterday after getting a bottle, then getting it taken away for 24 hours. She was trying to eat her hands, suck her thumb, self soothe orally all night and her face llos the way it does today because of this trial and error method that could have been avoided if our dermatologist had seen our baby 7 DAYS AGO when she was first called.

Thanks for enduring this rant. I know that we "practice" medicine, heck, I "practice" music therapy. I know that this case is SUPER RARE...but knowing doesn't stop feeling.

So, the long and the sort of it is that her skin heals well, but blisters so easily that the slightest friction to her skin causes it to separate. She IS a miracle, you're right! AND, the miracle isn't finished manifesting.

The Request:

Bella's quality of life if her current level of severity persists will be debilitating. There are versions of EB that have "gone away" as children grow older. Here is the story I am envisioning, and I humbly request you do the same:

One day, years from now, Bella will say,"Yeah, when I was born, I had this rare skin condition, but somehow, it just went away when I came home from the hospital." She will speak of it with no conscious connection to her own words. It will be as if she is reciting an event from her history book.

However, this event will have left in its wake...faith strengthened in many all across the country, faith even restored in a few, and music, oh sweet healing music therapy for thousands of infants at CHOC over the years to come. Questions were already asked in meetings at CHOC this week as to why there is no music therapy in the NICU...they have a part time MT on the units...why not the NICU???

It all started with a song. Bella's song. Written by her mommy and daddy and recorded by her daddy in the midst of being totally sick. It was sung and played to her while in the womb for months, it resonated in the O.R. as she was delivered, and a tender, softer lullaby version floated through a NICU and helped heal the patients, their families, and the staff.

Oh, see the ripples in the pond you cause? YOUR PRAYERS gave strength for that third vital chapter to be written.

Hopefully, by the end of the day tomorrow, a new blogspot will be finished. My dear friend Jim Hornaday and his girlfriend Jody Gnant have been working hard on creating a public blog where you can go read about Bella, listen to her music, and if you feel like it, contributing to her care by downloading her song as well as a couple of others that are appropriate.

The site is www.careforanabella.com

you can also go to www.myspace.com/timringgold and hear and purchase "Bella's Song" there as well.

During the biopsy today, Bella started to have a meltdown. Before the third lyric of her song was out of my mouth, ( I was playing my guitar for her during the procedure), she stopped crying and looked up toward my direction of the room. She knows her song, and I think she likes it.

Finally, I just say publicly THANK YOU to my amazing wife Angelique and my beautiful daughter Alessandra. First and foremost, they the angels that keep me afloat each day. Thank you all for reading all of these words. I hope they inspire you as much as they do me.

Talk to you tomorrow.