Tuesday, June 30, 2009
He quelled some of our concerns about esophageal issues, and gave us a 7 step plan for dealing with Bella's reflux and gas issues. Bella is so irritable and crabby, that she is either sleeping or screaming, and that is wearing us out. It also puts her at risk for more blisters, because when she throws a fit, she bangs her hands, face, and legs and gives her self new blisters each day.
The 7 step plan allows us to add/drop out different treatments without having to see him in the office. We can just call in requests, and it will all be in Bella's chart. The guy was like a dream. Most of all, he spent a lot of time with us. We were his last appointment of the day, and he easily could have blown us off, but instead, he got really into her situation, and took his time talking about pros and cons of all different types of treatment options.
We feel a lot more comfortable having Dr. Grant in our treatment team.
Other good news...
Last Tuesday, Bella weighed in at 9 lbs. Yesterday, she weighed in at 9 lbs. 12 oz! She is 70th percentile in weight, which is HUGE, as malnutrition is one of the big three killers of RDEB babies.
Kelly, the home health nurse, called today to see if we needed her to come out and see Bella this week. Ang and I looked at each other and said, "No." Kelly was thrilled to hear that. She could tell that we have come a long way in a short time in terms of caring for Bella on our own.
Next Tuesday, Bella goes in for genetic testing. They will draw her blood (yikes) and then, if need be, they will do testing on Ang and I. We are still in the dark as to whether Bella has the dominant or recessive strain of dystrophic EB. Most likely, it's recessive, but we need to know one way or the other as it informs us as to the possible progression of her condition.
Meanwhile, our church continues to feed us, sending food every couple of days. We are so lucky to be surrounded by such abundance of love and support. I told my minister that I felt a little guilty receiving so much...we're used to being on the giving side, not the receiving side. Part of me feels like we should be able to feed ourselves...we're grown adults...but Dennis put me at ease real quick. He said, "That might be true, except that you deserve it." Then he just smiled at me, and that smile told me everything was okay.
We have been making dietary changes bit by bit, buying all kinds of mysterious things that we have never eaten/used before. Most of it has been strikingly good. There are a couple things that were misses, but for the most part, the transition is going slow and steady, and Ang has really charged ahead trying to cook and eat with new items every day. Today was my last day of 100% caffeine coffee. Tomorrow, I begin weening myself off by drinking half regular half decaf for about two weeks, then....oh man...decaf for two weeks, then....[shudder] off the coffee for good.
Thanks for all your encouragement/feedback/support as we rethink our lives to make the best environment possible for Bella. We know these changes will enhance all our lives ultimately, even if they seem a bit weird at first! We love you all and thank you again from the bottom of our hearts for sticking with us through this journey. Your love passes through us into Bella, and let me tell you, at 4:40 this morning as Bella was yelling at me while I did lap after lap with her in my arms on the stairs to try to calm her down...I needed every ounce of that love! :)
Sunday, June 28, 2009
Well, the EBMRF picnic was today, and we packed up the minivan and went for a trek up to Malibu. It was at a cool outdoor shopping mall (although, much smaller and hipper than a "mall" per se). The weather was a little warm, but there was plenty of shade. it was extremely well run, with TONS of activities for kids. Ali got her face painted, planted flowers, filled a butterfly shaped glass jar with different colors of sand, made and ate a cupcake, and danced away the afternoon trying to master the hula hoop. She's got a ways to go with that. Free valet parking, free food, free giveaways...it was a nice event.
We got to meet several EB families from Southern California with kids from 5, 8, 10, 11, to a woman who is 30, all with DEB. Most were more severe cases than Bella, and it was a little frightening to see the fused hands, and flaky, bandaged arms (and legs) and two wheelchairs. However, we met two kids who looked and led rather normal lives, one of which lives in Irvine, the city next to ours!
We all exchanged horror stories of nurses putting tape on our babies' faces and how the docs don't know as much as we do about this bizarre and rare disease. Out of all of Southern Califronia, there were maybe 5 families from the region today, all who knew each other.
It is a small brotherhood/sisterhood/familyhood...community. The parents couldn't have been nicer to us, and each offered their help with anything.
Ang's high point however, was the help she received in the ladies room while changing Bella. Women were ogling and cooing over Ang's shoulder as she was changing Bella, and then one voice said, when hearing Bella squak, "That's my favorite sound in the whole world!" The woman stepped up and helped Ang clean/straighten up...who was this woman? Brooke Shields.
Yup, Malibu did have a few stars in attendance today. We also ran into Tori Spelling and Denise Richards. I was yaking it up with some guy at one point, and we were talking about the superiority of the balloon lady, and how we'd never seen anything like her work...a few minutes later, I see people taking pictures with the guy...I still have no idea who he was. The interesting thing about the social dynamic of the scene was that we live in Orange County, where at most high-end malls, no one makes eye contact because they all think they are the most important person there anyway and filled with self importance. At this mall, everyone was making eye contact with each other to see if the other person was someone they knew from TV. I never had so many strangers make eye contact with me...only for a second before they realized I wasn't REALLY Brad Pitt after all. I know, I know...A LOT of double takes...yeah, in my dreams.
All in all, it was nice to meet some parents who KNEW...one guy and I talked about what it was like having your wife in one hospital and your infant child in another...the feeling that no matter where you were, you weren't at the other. I remember walking the tunnel alone that connects St. Joe's and CHOC time after time in those first 3 days in a daze...it was so nice to meet someone else who had made that same voyage.
Ultimately, we learned today that you learn from other parents whose kids are older than yours...NOT from the medical establishment. Then, when a new baby comes along, we'll help its parents the same way we're being helped. That's what Leslie's trip out to see us was all about. Solidarity.
Thanks to those who encouraged us to make the trip today. We were on the fence, but your words of encouragement pushed us off. THANK YOU!
Oh, and to see a new video of Bella, Ali, and Mommy that is SUPER CUTE, go to
Good night and God bless. Tomorrow, we meet Bella's GI Doc!
Friday, June 26, 2009
What a gift she is. I know that breakthroughs in health and vitality are on our doorstep because of our devotion to creating the optimal nurturing environment for such a fragile being. Dr. Young puts it simply. Think of a fish in a fish bowl. The health of that fish is greatly determined by the cleanliness of the water it lives in. Now think of your body as the fish. Your body is 70% water. Bella's is much higher...closer to 90% water. We (our cells, organs, tissue) live in our own fishbowl. If you don't keep the water clean, the fish's health suffers, right? Same with the fluid in our body. Sounds logical. Sounds simplistic even. Yet, ignorance is BLISS. As I continue to drink acidic beverages daily (soda, coffee) and eat foods my body is not designed to digest (animal protein, sugar, yeast), I wonder why I am exhausted by 3 pm every day, I have chronic pain, and get recurrent headaches, injuries, and soreness.
Thinking of Bella's optimal health has made me think of my own in a new way, and as I learn more each day about nutrition, I am saddened a little by what I am choosing to give up, but yet inspired to finally honor my body as it is designed. I see a healthy family full of vitality and strength: physical, emotional, and spiritual strength. That's worth making some changes for. My affirmation is, " I am restoring the structural integrity of my body, mind, and spirit."
For example, last night, we switched to cloth diapers. WOW, THEY ROCK! They are so vastly superior to disposable...I can't even imagine Bella (or us) suffering one more day in those awful plastic nightmares. Not only are the cloth diapers 100% softer, and more comfortable, Bella's butt looks better today than it has since she popped outta her mommy! No more lathering aquafor all over diapers and bottom every diaper change. No more blisters on her thighs from velcro. No more ripping out inner elastic waistbands 10 times a day. No more cutting oragami shapes outta the velcro closures so they won't cut her legs any more. That stuff was L-A-M-E.
So, I am heartened by this first lifestyle change going so well. I look forward to more of that.
Yesterday, I had to pick my first fight for Bella. Nothing like trying to get an appointment to see a referral. The referral was for a GI Doc, an integral part of a DEB patient. The customer service rep who was handling the scheduling tried to explain to me that the Doctor was booked through August, and I would have to see another GI Doc, and that they were all the same. Bella could see one next week. If they are all the same, why is Dr. Grant booked through August and the others available next week? I wouldn't have it. I simply told the gal, "NO. That's NOT how this is going to go. You are going to figure out a way for my daughter to see Dr. Grant. period. " "Well, I'll have to get my supervisor on the line." She quips. "Fine with me." That was 25 minutes into the call. Within 5 minutes, the supervisor understood the situation, said she would email the Doc and see what she could do. She called back today to say they moved their entire Monday schedule up so Bella could get in at the end of the day. Yeah, this Monday.
Pick your battles, folks, and never let ANYONE sitting in a call center tell you how it's gonna go.
So, Monday we go to the GI to check out Bella's reflux issues. Reflux comes on early and often for DEB kids, and she has been having a lot of symptoms, so no time to waste. She doesn't need another day of reflux damaging her esophagus causing any unnecessary scarring.
Still other news...
I got in touch with a woman locally who heads an EB support group who invited us to an EBMRF picnic in Malibu this Sunday! EBMRF is the west coast version of DEBRA, which is based in New York. It's a hike, but it's being thrown by David Arquette and Courtney Cox, so...pack the minivan! We haven't made up our mind yet. Malibu is a hike from Orange and we haven't set out on a trek away from home for that long yet. We'll see. I think it would be cool to plug in...but I'm the networking junkie in the family.
Oh yeah, Bella sat through her dressing change today AWAKE for just about the whole thing! Her foot IS SO CLOSE TO BEING CLOSED!!! Aw man...it's such a victory. Anyhow, her being able to chill out awake was a good sign that since she pretty much has no open wounds, the dressing changes are not as painful for her as they were, say, two weeks ago, or even last week. C'mon, Bella! Heal, baby, heal! Heal, baby, Heal!
Okay. Time to go pass out. Bella is out cold after being up both of the past two nights. I can handle one-all nighter okay, but back to back...I'm not the night owl I once was. This rock star is in retirement!
Best to you all. Thanks for the continued love and support. It is a bit overwhelming...but we LOVE it and welcome the overwhelm! Thank you for contributing to us so generously with your prayers, intentions, thoughts, emails, cards, food, errands, and donations. I learn of a new church EVERY DAY that has added Bella to their prayer list. Literally from coast to coast, people are praying for our Bella. We are so touched and inspired by this. It gives us the strength to stand in the face of DEB and continue to proclaim...say it with me...
One day, Bella will look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."
May the unending abundance that is God's love be with each of you this weekend.
Wednesday, June 24, 2009
Monday morning, as Angelique opened the blinds to the back patio, we noticed our rose bushes were in some serious need of clipping. Normally, that falls under a mildly annoying, but necessary chore, but when we looked out at the patio...it just seemed like a jungle. We are regaining our functionality around the house - albeit slowly - but this one still eluded us. She said, "The roses really need trimming. [sigh]." To which I said, "Maybe we can have someone trim them for us!" I was thinking of all the wonderful people that live near us that have been looking for ways to help out. However, there was also this small feeling of shame - like I should be able to handle such a basic task. Angelique replied with, "Okay, WHO?" My first thought went to my minister Dennis, who helped me with my roses before Ali was born; showing me how to trim them and how to put manure on the soil in the winter. Then I thought, "How am I gonna get Dennis to come up here to do that?" He lives and works 30 minutes away and again, I felt ashamed to call and ask. My shoulders slumped, and I answered back to Ang, "I dunno." and that was that.
Or so I thought.
Later that morning, who calls? Dennis.
He says he's bringing food to the house from folks from church. Later that afternoon, he arrives with his wife Linda, and Linda immediately tends to Angelique and Bella as Dennis walks straight to the patio door. He says, "Those roses need trimming. Want me to trim them for you?" Then he says, "I already trimmed mine and my neighbor's this morning!"
As I get Bella's wound care supplies ready for her dressing change, Dennis goes to work on the roses. Linda remarked to Angelique while watching him out there," Oh, he's in his element now!"
God doesn't just send someone over who knows roses, but DELIGHTS in caring for them...and not just his own, but those around him he cares for.
That's how good God is! All the time!
Thank you God. Thank you Dennis.
Okay, onto today...
Our home health nurse, Kelly, visited today during dressing change for Bella's first weekly check-up. It is really great having someone come to the house every week to assess her condition. We know that NOTHING will EVER get out of hand with such vigilant care and oversight.
Anyhow, it's been a week since Kelly has seen Bella. She couldn't believe her eyes. She said she thought she was looking at a different baby; Bella had improved that much since she last saw her. She couldn't believe how good her skin looked and how fast her wounds had healed. She was also thrilled to hear that Bella was a big fat 9 pounds at the Doctor's office yesterday!
It was so great to hear, because while we know she's getting a little better every day, we see her every day, so to have that someone who has tracked her progress step away and come back...well it's like when your aunt or uncle says, "I can't believe how much you've grown!" Remember that?
So, 3 for 3 with recent medical assessments. There are NO blisters in Bella's mouth anymore, and only one small one on her lip yesterday which mostly cleared up today. Every wound on her body is now healing well, and that left foot...the tough one...is almost closed! God willing, by this time next week, there will be NO OPEN WOUNDS ON OUR DAUGHTER!!! That will be a first since she was born exactly 4 weeks ago today. What a journey those 4 weeks have been. They feel like 4 months to me. Bella just keeps getting better, and better, and better. You know what? One day, Bella's gonna look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."
You know what else? You were there. You were there through it all. You saw it all unfold, and you willed/prayed/CAUSED it all to go this way. Our communion of intent has been seen and heard by God and the Universe, and they have listened! I use that language to honor all the belief systems at work here. No matter what language we use, I believe that we have summoned a power greater than our own to our aid in this time of crisis. Call it what you want, but make sure you THANK IT because IT WORKED.
Love and Gratitude.
The two most beautiful states to be in. Our love and gratitude extends to you all for your inspirational support of our family. You are noticed, you are loved, and you are appreciated.
Blessings to all of you and good night.
Tuesday, June 23, 2009
Well, today was the big day...the appointment with Dr. Metz, Bella's pediatric dermatologist who did the skin biopsy at CHOC.
Dr. Metz examined Bella and said her case looks MILD!
Bella weighed in at 9 POUNDS which means she's gained a pound in the last 2 weeks.
Dr. Metz said we were doing a good job with wound care and staying on top of Bella's needs.
The biopsy was unable to determine dominant or recessive subtype. Genetic testing needs to be done.
Bella still turns into a gremlin nightly at 8pm.
We'll take it.
Thank you all for your continued love, support, and PRAYERS. They are healing Bella every day. One day, Bella will look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."
We love you all. Keep it comin'.
View Bella's video at http://www.youtube.com/watch?v=VZ9MXSCfMzw
Purchase Bella's song above.
Sunday, June 21, 2009
Bella blessed me by SLEEPING IN this morning. Not only did she sleep through the night, but she slept right up to her 8:30 feeding. But her gift was when she started cooing this morning in her cradle. The only noises we usually hear from her are shouts, screams, and cries, but this morning, we got a little gift. I wish I could have video'd it. I'd watch it over and over again to remind myself there is a happy soul inside that angry body right now.
Blisters continue to heel, though a couple have returned exactly in the shape they had just finished healing. Bella has a new one on the back of her right middle finger that JUST healed...and now the whole process starts anew. Another three weeks of wrapping. However, Bella's face and mouth look better than EVER, and she EATS like there's no tomorrow. This is very important for an RDEB baby. Malnutrition is one of the big killers.
My thoughts on Father's Day take me back to my little country church, St. Patrick Church in Redding, CT. Every Father's Day, our Pastor, Fr. John Conlisk, would give his annual Father's Day sermon. I'll never forget his last line, "...because while any man can be a father, not every man is a daddy." (or something to that effect) For me, while yes I am a "father," next to being a husband, being a daddy is the best job of my life. The fun, the connection, the sense of purpose, the every day miracles...watching them develop and unfold before your very eyes...the wonder and awe of it all...awesome.
I also think about Father in Heaven today and the unending love, patience, abundance, forgiveness, and guidance He provides to all who are willing to listen no matter how many times they have ignored. I think about my own finite patience, and I marvel at His ability to endure all and still shower love and abundance with joy upon all who ask for it. God is my hero.
Growing up, I remember stories about "Manna from Heaven" and thought that God gave us gifts right out of the sky. Since then, I've learned to recognize that God gives us gifts through each other, through every day faces and people. There is no choir of angels announcing the arrival of more of God's gifts. Just a phone call, or an email, or a chance meeting in public, or a card in the mail. We are being fed (literally) by so many different people, including family, friends, our entire church, and Ang's work team, that we barely have enough room in the fridge and won't need to make a dinner (or lunch) for the next month. THAT is MANNA FROM HEAVEN.
Watch Bella's video: http://www.youtube.com/watch?v=VZ9MXSCfMzw
Purchase her song or make a donation above.
God bless each of you for your love and support. You are healing our daughter. Thank you.
Friday, June 19, 2009
Could have been any family today. It just happened to be ours. With the exception of an in home assessment from the Regional Center, it was a mild, dressing-change-free day. Mommy, daddy, and Bella surprised Ali at daycare. You should have seen the pride and joy on Ali's face when she introduced everyone to her little sister. We went to the grocery store together, ate dinner together, then sat on the bed and watched Madagascar 2 with big bowls of popcorn together. Awesome.
It's nice to have a day with no wind, good or bad.
Here's the worst of it:
Watching the velcro on Bella's disposable diapers poke holes in her thighs is killing us. We're going to fuzzibunz.
We're also changing our diet around somewhat to give Bella the healthiest milk we possibly can. That's funny. I said we. I don't give Bella any milk! ANGELIQUE is changing her diet somewhat. We're gonna be hippies before we know it. She used organic hemp oil in her homemade salad dressing today! See! It's already begun.
We've had close to 50 messages from the past two posts. We can't begin to tell you how much strength and power that provides us. Even if we don't respond directly, again, each and every one of you is noticed and appreciated. THANK YOU.
Now, enjoy your weekend. Tomorrow, we get Ali new pool toys and it's off to the pool for the next 2 days!
Blessings to all of you. Good night.
Thursday, June 18, 2009
That's a 50% reduction in weekly wound care, folks! We were so excited to hear that as wound care is definitely the high stress point of the day. The products we are using are designed to be left on for multiple days, and there are no gaping wounds right now, no signs of infection, just a lot of healing skin, so we have graduated to a new level with Bella! The three fingers that ballooned in the hospital are now completely healed. Her right foot is about 90% healed, and her left knee has finally closed over completely with new skin. She was born with NO skin on her left knee, shin, and foot, so this is huge.
We also found out there are 2 EB wound care clinics in the country, one in Cincinnati and one at Stanford U. where you can meet with an entire treatment team from dermatologist to GI to nutritionist to PT. While I am grateful they are there, I am creating that we won't need to visit them. We were thinking that an annual or semi-annual checkup there might be in good order, but hopefully we won't need to go for any emergencies.
She also showed us pictures of lots of RDEB kids who look great, and who are leading fairly normal lives. She also told us about a guy WHO IS 42 and has RDEB. We are pretty sure at this point that Bella has the recessive version due to the report that there was NO collagen VII present in the immunomapping. Recessive indicates there is no collagen VII, while in dominant, there is Collagen VII, it is just dysfunctional. The good news about that is that all the research and clinical trials are focusing on RDEB, so there is promise for breakthroughs in RDEB first.
Leslie also commented that Bella was the most relaxed and calm infant she had seen ever during a dressing change. She was also impressed by mommy and daddy's teamwork. She said her husband wouldn't even help out; that it was too much for him, so Leslie was left to wrap her daughter alone...her single fasted wrap was an hour and 45 minutes. Go teamwork!
Here's why today was so magical. Leslie is the first person who has seen our daughter who ACTUALLY KNOWS WHAT SHE IS TALKING ABOUT. No other person who has commented on her had ever seen an EB baby before. Dr. Metz, who took the biopsy, did not comment at all about her, so this was the first informed opinion we've gotten about how Bella looks in the grand scheme of EB. I forced her to categorize Bella at the end of the day into "MILD, MODERATE, or SEVERE" since that is what everyone talks about, and she said MILD. Music to our ears.
Providence of the day:
Last weekend, A grief & loss retreat was held in Phoenix, AZ at the Franciscan Renewal Center. I am usually one of the facilitators along with my mom and another colleague, but I backed out of last week's back in December when we realized Bella's due date (good thing, huh?) I missed being there, because it is an occasion where I get to realize my purpose, which is to heal with music. Leslie, today, confided that she was dealing with grief of her own, and we had the most tender conversation about how pain and memories are distinct from each other, but during grief, they get collapsed. I helped show her that as she heals, that pain will lessen, but the memories will endure. We realized that her daughter's life and death led her to her purpose...to our home, and because of my daughter's life, I wasn't able to express that purpose last weekend. Inside of our conversation, we both realized that sitting together in the living room today, we both got to realize our purpose for each other, and that neither of us had thought that would be how the day went at all.
So, pay attention to the people God puts on your path, and especially, "in your way." There are no coincidences.
Finally, thanks again for all the posts. We are so touched by each and every post. It means so much to us and gives us strength and confidence to continue being who we are being and doing what we are doing. Thank you for your prayers for Bella's healing. They are working. Her body heals every day, and for every little blister or flare up, there is faaaaar more healing occurring.
One day, Bella will look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."
God bless all of you.
Wednesday, June 17, 2009
At least, I think it's the 17th. I'm pretty sure it's Wednesday right now also.
We found out yesterday part of the biopsy results. "There was an absence of collagen VII in the immunomapping..." Dr. Metz rambled on. "Collagen VII connects the dermis to the epidermis," she went on to say. "This indicates that Bella has the Dystrophic form of EB."
My heart just dropped into my gut and my arms got cold.
"They weren't able to determine subtype do to some [blah blah blah] so they are redoing the second test and I'll let you know what it is either when I see you next Tuesday or before."
So, now the hunt for the next clinical trial of bone marrow stem cells takes place. In the mean time, there is another piece of the story that unfolded so fast, that I still am unsure it even happened.
As I sat in the dentist office two days ago awaiting an emergency crown, I called my friend Joe Polish, a close friend and marketing guru, to vent a little. Joe realized he was in over his head, that he had never been through anything like this, so he said, "I'm gonna put you in touch with someone who can better talk to you right now. His name is Sean Stephenson. I interviewed him recently and we've become great friends. Sean has a rare bone disease that left him with 200 fractures by the time he was 18. He's 3 feet tall. He's now a motivational speaker and Psychologist. Can you hold? I'll try to 3-way him in on the call."
As the nurse stands in the doorway waiting for me, I am introduced to Sean by Joe during taping of an A&E special they are doing on him right now. Sean gives me his cell number and says, "Any friend of Joe's is a friend of mine, and if there's anything I can do to bring peace, I will."
3 hours later, I come home from the dentist and hunker down for another long mostly sleepless night with a colicky baby wrapped in bandages.
The next morning (yesterday), I get a text from Joe "Did you call Sean?" I hadn't. It's too tough to make a single phone call right now at night. So, I call Sean on the way home from dropping Ali off at daycare.
We spend the next 45 minutes in an extraordinary conversation about what is at stake, who to BE in the face of this, and what there is to do. Sean says, "Don't listen to the Doctors, I was supposed to only live 24 hours." He follows with, "The only prognosis I listen to is the one I like!!" At this point, I still don't even know Sean's last name, when Joe said it, it went right by. I just had a hand scribbled name "Sean" and a phone number to call. Sean tells me that he wants to put me in touch with his Doctor, a microbiologist by the name of Robert Young. Sean started seeing Dr. Young about 5 years ago, and he hasn't broken a bone since. Not bad for someone who broke over 200 during the first 18 years of life. Sean said he'd let me go so he could call Dr. Young for me. A minute later, (10:04 to be exact) Sean calls back and says, "Dr. young is in London right now, but he said if you call him at this number in exactly 30 minutes, he will take your call."
It was during that 30 minute wait that Dr. Metz called me with the bad news. Without getting dramatic about it, we were hoping maybe Bella had the simplex version of EB which should could most likely grow out of. If it turns out to be Recessive Dystrophic EB (RDEB), it is fatal with subjects dying from malnutrition due to the erosion of the esophagus, infection from open wounds and/or resistance to antibiotics, or an aggressive skin cancer that usually comes in during adolescence. Most RDEB kids to live to adulthood.
So, at 10:34, I call the number and a man picks up the phone. It's Dr. Young. I explain who I am and he asks me to tell him what's going on with my daughter. Dr. Young is clearly a renegade. Within the first two sentences, he says, "Don't listen to the doctors. They don't have a clue. Here's what you need to do, you need to strengthen your daughter's blood. You strengthen her blood you strengthen her skin. Mom needs lots of green juices and get off sugar. Sugar is poison."
He then goes on to give me specific sprays he produces that he says will help Bella's mouth and skin be more blister resistant. He would like to see her blood tests results and any panels that have been done.
10:48. What just happened?
Yesterday Ang and I were faced with doing Bella's wound care all by ourselves. Bella was awake and crabby, and we just didn't know how we were going to pull it off, but we were literally running out of time before we had to go pick up Ali so we just went for it. Well, all I can say is that Bella is freakishly strong, and not just muscularly, but constitutionally. She was a trooper. I also want to publicly thank the angel that was in the room with us. I don't who it was, but Ang and I were not alone, and Bella was somehow calm and soothed the whole time. (She went right back to screaming her head off 5 minutes later). At the end of the procedure, I felt closer to Angelique than ever before.
Total time of procedure? 50 minutes.
So, in all this there is ups and downs, Bella sleeps all morning while we run around trying to keep the house/ laundry / bills / paperwork / research / pumping / feeding up to speed, then turns at 8 pm into the most irritated, upset little girl who can't be put down for more than 5 minutes till about 4 am.
We know of the clinical trials at U of M and Stanford. There is also one at Rady's in San Diego where I interned and I am looking into that today. Now that we know the main subtype of EB, we can navigate what options there are. Really, until these bone marrow stem cell transplants occurred, all there was to do is bandage and love your kid and keep 'em as comfortable as possible for however long God intended them to be here. Now, with this new breakthrough, there is hope for a tomorrow beyond unending discomfort.
NOW, STANDING IN THE FACE OF ALL THAT, I SAY WILL YOU PRAY 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 went away."
The body IS a miracle. It does miraculous things every day. It defies "the experts" every day. God has the power to produce all the collagen VII God wants. It is to be His will. Sean told me yesterday, "Pray for a miracle. You HAVE TO CHART A COURSE. God may come and adjust the winds on you, but you HAVE to at least CHART the course."
Thank you all for helping my family "CHART THE COURSE."
Tuesday, June 16, 2009
Too fried mentally and physically to expand too much tonight.
New big blister on left thumb. Imagine you had a blister that went from the back of your fingernail to the base of your thumb and that it was as wide as your thumb and as high as the thickness of your thumb. All in one day. Fingers are tough because we have Bella's hands wrapped 24x7 and can't see new blisters forming until the next day's dressing changes. We remove yesterday's bandages with anticipation to see if wounds are getting better, and in the case of fingers, if dressings are staying on her tiny, wiggly, lubed up fingers.
Thus the game of EB, one step forward, one step back.
THe good is that DEBRA is flying a volunteer out to spend an entire day with us later this week. She is bringing tons of information, dressings, diapers, and wants to observe our dressing changes to offer advice....we get her ALL DAY for ... um ... free. This DEBRA group is pretty amazingly funded and organized to provide such personalized and in-depth attention.
The volunteer also wants us to get the Stanford Biopsy results by the time she arrives so she can counsel us on which form Bella has. So, focus your intentions and prayers that the test is done and we get the results tomorrow and that the results are delightful. We need a miracle. We are praying for the version of the disease that children grow out of. Thank you for focusing on this tonight/today.
Okay. need sleep. Bless you all.
Monday, June 15, 2009
Is that a smile in there?
There were a lot of prayers said for Bella this morning around the country at various churches and congregations. We could tell, because today was like no other day in this journey for us. It felt...normal.
It was the first day since Bella's birthday that we all started and ended the day under one roof as a family.
It was the first day Bella got to go to the park.
Thanks to our Pastor Dennis and fellow congregant Mimi coming over to deliver flowers from our church, we cleaned and straightened and things look almost back to...normal.
In grief healing, we talk about "the new normal." It will never be as it was, but there is a new stability available from which to reach out and take life by the reigns again. We saw a glimpse of that "new normal" today, and we are grateful TO ALL OF YOU who have held that vision in your hearts and minds these recent days and weeks.
Now to the good and bad of the day:
Dressing change at just about an hour again. Ang and I have now worked out who does what and it is running very smoothly. Bless our next door neighbor Becky for stepping up and supporting us the past 3 days while home health care drops the ball.
Bella spent all morning awake and alert making eye contact, and visually tracking (at 6-12 inches), and appeared, like a normal, happy baby.
We stopped giving Bella the multivitamin drops they sent us home with. Passing gas and poop all morning without any pain at last! She's on breast milk+formula already, she's much happier now.
We walked to our neighborhood park today as a family, the way we thought we would all along. There were many many days where we thought even today was out of reach.
Bella is healing well in many places, but her left index and middle finger, shin, and ankle are all having trouble healing. We realized Bella kicks her left shin - more like rakes it - with her right foot, so she's beating herself up. The skin affected when I accidentally pulled her boot off looks like it has died and is going to slough off now. The fingers are tough because it is difficult to wrap them in such a way that keeps them covered and moist enough to break down all of the mangled dead skin on top from the giant blisters that formed in her isolette. She has to wear gloves on both hands now as she has knocked the skin of her lips more than once just today. Because of her GI pain, she has developed blisters on the ends of her fingers from squeezing her hands so tightly.
Ali spent so much time with Grandma recently that she has forgotten how to do what she's told! LOL. You can SEE the shock on her face when she asks mommy or daddy for something and they say no. It's mostly pretty funny and only occasionally annoying. Wouldn't have it any other way, though, grandma has been a LIFE SAVER over these past 3 weeks. We love you grandma!
Even with all the success, blessings, and miracles around, it's gonna be a long time before some of her wounds heal. Being in charge of that job is both empowering, frustrating, and scary at the same time. Wound care / daily dressing changes is the high point of anxiety for the parents and pain for the child. We have to psych ourselves up for the task every day. Please pray that Bella's wounds heal fast and permanently, please pray for continued strength for mommy and daddy as struggle each day to recover and reorganize.
Hold with me the vision that says, "One day, Bella will look back on this and say, "Yeah, when I was born, I had this rare skin condition, but when they took me home from the hospital, it went away."
Good night and God Bless each and every one of you for your love, generosity, and support.
Sunday, June 14, 2009
Dressing update: wound care took 1 hour today! We're starting to get the hang of it, and our neighbor Becky has volunteered to assist since our home care nurses couldn't staff Friday, Saturday, or Sunday. It's all good; I'd rather have Becky by our side than any stranger at such a time. NO new blisters today. Although, we figured out that Bella is doing a number on her self. We uncovered a wound on her left shin that we couldn't figure out where it came from. We thought maybe it was from our hands lifting her legs during diaper changes, but turns out, she kicks herself in the left shin with the inside of her right foot! Tomorrow, I will add shin guards.
Reflux update: Whatever it is Bella has, the formula didn't completely do the trick. When she either passes gas or poops, she screams in pain. That's really a drag, because she's pretty gassy. Really don't know what to do till Monday about that one. Also, she kicks and hits like a street fighter. She HATES diaper changes (kicks and screams till she's purple, and tonight was inconsolable even after a fresh diaper and a bottle. Is that colic? Ali was a saint in comparison!
Lastly, please go to http://www.youtube.com/watch?v=VZ9MXSCfMzw to see a tender video of Bella. It is her inner essence revealing itself amid the tumult her body is going through.
We love you,
Tim & Ang
P.S. Please purchase Bella's Song available above! Do it now! :)
Friday, June 12, 2009
We ran out of the most important product for Bella's wound care yesterday. No problem; box loads of products were en route and would be here today. However, on Thursday the home health nurse says she can only come at 9am...products won't be there by 9 am. I'm gonna have to use a different dressing...something less than what the wounds need right now.
9:05 am: The nursing manager calls to say the nurse called in sick with the flu.
Products show up at 10:30.
We head over to CHOC for Lactation Clinic, come home, and home health leaves a message: no coverage. (By the way, they already said no coverage over the weekend, too. So much for the 7 consecutive days of nurses the CHOC Case Manager promised me)
1 hour later, Becky ,my next door neighbor the nursing administrator indicates not only will she come Sat Sun, but tonight as well.
8pm: We dress Bella's wounds in 90 minutes listening to relaxing classical music, and use the RIGHT dressings for Bella's left leg with the RIGHT amount of people.
Bella slept well last night and today, crashing from her two day long scream fest. The Isomil formula supplementing the breast milk seems to be working.
While her fake looks a bit worse for wear today, ALL of Bella's wounds look better than yesterday.
Thank you all for visiting this site. Please go to www.careforanabella.com and buy Bella's Song.
I need to sleep now.
We love you all!
I am inventing new time with these late night posts.
Good news. NO emergencies today. Wound care went very well. I think we got it down to 90 minutes today with almost no help from the nurse. Actually, she only helps with extra hands getting something we forgot or soothing Ali with a pacifier laced with sweeties. We found a new, better place to do it daily with a plan of how to integrate dressing changes into our family's daily routine. Eventually, once Ang is back working, we'll put Ali to bed in the evening, then change Bella's dressings and put her to bed. Just having that kind of rather simple plan gives us the vision that even while Bella deals with this unusual disease, we can somehow integrate her needs into a relatively normal home.
Btw, we just got 3 hours of sleep for the first time in 2 days and it was AWESOME. :)
Having to be patient to wait 3 days or so to see if the new formula supplement kicks this reflux was killing me. Actually, just about every facet of this experience was killing me. I think as I drove to pick up Ali from daycare this evening, I hit my rock bottom. But guess who was sitting at the bottom waiting patiently? God.
I realized that I have been trying to control Bella's disease and ultimately her fate. I thought, "If I just get enough people praying for her, I can cause her to miraculously get better." It became about me. As a parent, of course I want her to get better and I am praying, as all of you are, for that miracle. And yet, in that moment, I understood that, "Yes Tim, there are things at work that 1)are not about you and 2) are more powerful than you." Each new blister mocked me into realizing I am powerless over controlling her.
In that moment, I surrendered to EB. I have a beautiful, magical, miraculous daughter, and she has EB. Now, she may not have it her whole life, and yet she may. But either way, I'm walking down whichever road by her side grateful just to have her.
That's when God's grace flooded me with peace. The peace I have been without (with tiny exceptions) since May 27th. It's a conundrum; in order to have that peace I so desperately needed, I had to give up asking for it.
Then it showed up.
I'm sorry to steal the spotlight a little here from Bella, but it is a big day for me because since that moment, I have been at peace, and enjoying my daughter and the rest of my family immensely. I no longer have to put on the strong face to write this. In fact, I went to bed content, as did Ang, and we forgot to check the update page! (Sorry ... we had been up for 2 days straight ...)
This is a long, moment by moment journey, and thank God for it, because now I see Ali's perfect skin, and realize what a miracle every action, every activity, every game played...truly is. I got to fall in love with both daughters again today.
Last, you have to see Ang in action to witness the power of woman. She is Rock solid and cool as ice. A stronger woman I do not know and I cannot imagine being side by side through this without her...not to mention that she dropped just under 30 pounds in 2 weeks post-op. She is healing and strong, not just for herself, but for her children, and her overtly sensitive and emotional husband. She is the foundation and the mortar of this home. Thank you, Angelique.
Keep it coming, your prayers make moments like today possible.
Here it is again. Please hold 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 went away."
We love you all. Thank you for walking this journey with us.
Thursday, June 11, 2009
Did anyone get that?
Yup. It's 1:55. Ang is feeding Bella her bottle and we are rocking out to Mozart's Rondo Alla Turca on piano. Yeah, I know I used Mozart and ricking in the same sentence. That's what sleep depravation does to you.
Bella's first pediatrician appointment went well in that she was 55-75% in each developmental area.
We started putting cotton balls in Bella's palms which is much healthier for her hands and little fingers to develop...keeps the natural shape of her grip while encased in tubing and socks.
Dressing changes look better and better each day...mommy and daddy are learning! It still took 2 houts though.
We tried a pacifier late the night before and it really helped with diaper changes.
Bella formed a giant new blister on her right elbow. The night before she literally beat the night before's blisters right off her face, so yesterday we tried to swaddle her. However, she is freakishly strong, a wiggle worm, and suffering from reflux on top of everything else (common in EB babies) so she spent most of last night wriggling and breaking free of her swaddle. We think the pressure of trying to pull her arm out caused the blister. It was little in the morning, but it almost wrapped around the back of her arm from one side to the other by 4pm. We had to lance it and drain it, otherwise it would just continue to spread. The way EB blisters work is that when a blister forms, it can just spread and spread because the pressure from the fluid building inside just continues to separate the adjacent skin. That doesn't happen to us; our blisters are restricted to their respective trauma site, because the healthy skin all around is bound down by that missing protein in EB.
Bella's reflux has made her REALLY irritable when awake (which is all night) She gurgles and hiccups in her cradle despite the 2" lift we gave her. Will try a higher incline later. Diaper changes at night have been wrestling matches which have also caused some new blistering. This evening, after the nurse left, while I was trying to change her diaper, she pulled her left foot COMPLETELY out of its dressing boot, which took three people to put on. I had to run next door to get our neighbor Becky, the OC public Nurse, to help feed Bella a bottle while we redressed the foot on the changing table.
Becky was reading my post from yesterday when I knocked at her door. Providence
Anyhow, we are tinkering with her feeding schedule, type of formula that is being used as a protein supplement for wound healing, EVERYTHING possible to try to make her comfortable. Oh, and diapers only get changed on a FULL tummy till Bella mellows out a little.
There will be good days and bad days, and there will be elements of good days in bad ones and vice versa.
Today, Ang had a good checkup and so did Bella. Today, hundreds of people prayed in their own way. for our daughter. Today, God placed my neighbor right where she needed to be.
Thank you all for visiting. It helps us soooo much. More than you know.
Please hold 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 went away."
Download Bella's music!
Tuesday, June 9, 2009
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.
Monday, June 8, 2009
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.
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?
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.
Sunday, June 7, 2009
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.
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.
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.
Saturday, June 6, 2009
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.
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!
Friday, June 5, 2009
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 ...
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.
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.
Thursday, June 4, 2009
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.
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.
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.
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.
Wednesday, June 3, 2009
So much for trying to get to bed early...
First off, Happy Birthday, Zoe! Our close friends' daughter (and one of Ali's bestest friends) turns 4 today! YAY!
We're still up because we are preparing for tomorrow morning. Tomorrow morning, we FINALLY meet the Pediatric Dermatologist, Dr. Brandie Metz from UCI Medical Center nearby. She is consulting with everyone at CHOC tomorrow morning as well as doing the very specific test to confirm diagnosis and determine subtype. There are staff literally lining up to pepper Dr. Metz with questions regarding Bella's care. The Director of Nursing, Linda Glenn, told me today that maybe one patient A YEAR comes through CHOC with this diagnosis...
...what diagnosis do you ask?
Well, we have been witholding this information to save you all from reading unnecessary information on the web about a very complex and rare disorder. Some of you (you know who you are) went out on the web anyway...I can see that it is very tempting, but I implore you to resist the temptation to try to peg this one.
Here's what we know:
Bella's symptoms present like Epidermolysis Bullosa, or EB. There are 4 types of EB, with multiple subtypes. Each subtype can vary in severity widely. It takes this very specific biopsy tomorrow to determine the type and subtype. EB affects 1 in 50,000. The biopsy will be sent to Stanford University (literally the nearest facility that can read this type of test) and we go from there.
For example, Bella presents with symptoms that both support AND confound a diagnosis of 2 of the 4 types. Even within one of the types, she presents like two subtypes...
So, more will be revealed tomorrow. Now, back to today's Summary:
We walked into Bella's room and there was no feeding tube in her nose!
Mommy and Daddy both got to bottle feed Bella this morning!
Wound care looked GREAT after yesterday's breakthrough. Great job, Betty!
Bella was awake and alert during the day now that she is off morphine!
Daddy met with the Director of Nursing who thanked me for transforming the vibe in her NICU through the music I played in there since we got there last Wednesday. I asked her permission to continue to play in the main pod that connects three 8-bed units while Bella recovers in her new private room. She couldn't believe it. She gave me the green light and sent out a communique to all staff as a heads up that I've got her blessing.
When Daddy returned to the main pod, I started playing for a couple and their preemie. After talking to each other for a little while, we shared about how powerful prayer is. When I confided that I am conflicted about asking God for a miracle, they came to Bella's room and prayed over her and...prayed for a miracle. How do you ask for God's Will and a miracle at the same time? They seemed to have that figured out and shared with us.
Because EB is so rare, most of the tx team has never treated a patient with it. We are stumbling through the treatment a little. They used a special bottle on Bella, but didn't know exactly how to use it. The development team was not too happy about that.
After the bottle feeds today, Bella developed new blisters in her mouth and was really agitated for the rest of the day. Her feeding tube was then put back in. No more bottles.
Bella didn't get enough pain relief before her bath/wound care. She screamed and cried all the way through. That sucked.
There is a subtype of EB where patients claim to "grow out of it" by the time they reach grade school. Through the power of prayer, could she perhaps grow out of it sooner? Her skin is sooo sensitive. We really need a miracle. Please create in your thoughts, prayers, intentions, and meditation that her skin heals and stays healed forever, that no new blisters appear, and that this condition clears up for good.
God heals so many so often in so many ways and so many places. We humbly ask that this child is granted this same grace beginning today.
Thank you to all who share in this sacred moment.
We are blessed by your love and generosity.Good night, be well, we'll talk to you tomorrow.