Monday, October 4, 2010

October 4: Day +94


My new favorite "not nap" position... I rest in Bella's room in all kinds of uncomfortable positions, but this one makes me the happiest... Yes, I am actually standing, and partially laying on her bed at the same time!

Heaveno!

Before I forget... Ali's mystery item in her mouth? It was the cap to our green dry erass marker... Stumped you all! I know I know, parent of the year award goes to... yours truly for not noticing anything in her mouth till I was looking at the photos! What's your best parent of the year award? I asked this once a long time ago, and I'm sure there are PLENTY of new readers since, although I think my friend Lynne won for leaving her... oh, never mind... ;)


So... What day is it again? Monday, right? Feels like Tuesday already. Don't know why. Oh well. Rounds went well this morning, I walked out of Bella's room in my new Black sweatshirt from Grandma Carolyn (see above - thanks again, Grandma!) to a few chuckles, smirks, and smiles, but said nothing. I just smiled as always. The resident went through the plan for the day, and it was a great feeling to have her look at me each time she said what she'd like to do to see how I would react. I would either shake my head yes or no and she would adjust accordingly. I was really appreciative to have earned that much respect in rounds. I work hard at always stating my opinions on Bella's plan of care based on logic and reason, and not on emotions during rounds. In the room, I may say something like, "I just feel...," but in rounds, everyone realizes I occur more like part of the treatment team and less like an emotional parent. I take that as a compliment. Tomorrow, I will be in sweatshirt number 2. (See below - thanks Jack and Molly's Nana, Janet!)


Today's plan was again to sneak off whatever fluid we could, wean a little more sedation, wean her vent again, and hope to not go up on pressers. Well, we ended up with 2 out of 4 for the day, so we were "batting 500," to borrow another sports analogy. We had to go up on vasopressin yet again, and we will probably be exactly even for the day, which in a weird was is a victory, because we had to give 110 mL of albumin this morning as Bella's central venous pressure (measure of her fluid volume in her vasculature) finally dipped down to 6 when it had been running at 12-15 for the last two weeks. That was okay, since a month ago, they were giving her fluid 3-5 times a week, and now it's maybe once every 10 days or less. We were able to take that fluid back off within the same day, and her blood pressure held. Unfortunately, it was a roller coaster day with pressures.

On the positive side, we weaned her vent down to a rate of 8 breaths a minute from 10. She did fine with that. Tomorrow, we will increase the length of her pressure support trials to 3 hours 3 times a day. We will continue to gradually extend the length of the trials till she inevitably ends up breathing on her own all the time. I think she's almost ready for this. We also weaned her precedex to .3 today, and she tolerated it very well. The funny thing is, she's not jumping out of bed from either withdrawals or super energy. In fact, she seems quite comfortable most of the time, and still sleeps a lot. I really hits home just HOW MUCH (too much?) sedation she WAS on just 3 weeks ago. NO WONDER she couldn't regulate her blood pressure! She's on less than half of what she was on, and she's still pretty sleepy!


It seems that Bella's favorite part of the day is in the afternoon when we sit her up! She is very calm, and you just get the feeling that she is happy to be up off her back and sitting up again. Several staff who were off over the weekend and hadn't seen her for 5-10 days remarked how much better her skin looks, and they noticed she's lost some fluid. That was nice to hear, since I am up close and personal every day, I don't see the difference as clearly as someone who is close, but hasn't seen her in a while. You know how that goes at family/friend reunions...


"HEY! YOU LOOKIN' AT ME???"

So again, we're not out of the woods, but we are moving toward the clearing a little bit at a time, every day. I can't remember if I mentioned this thought recently; forgive me if I did... you know the phrase, "One day at a time?" I know it sounds cliche, but some times, one day is more than enough to have on my plate at a time! This whole thing is way too much for me to grasp and certainly control, so I just have to let the enormity wash over me, and reach up to God and hand him the pack of anxiety and worry on my shoulders. I am so grateful God has pushed us out of the nest, so to speak. I have learn and grown so much from this experience.

I have learned that one day can be enough.

I have learned that I am not in control, but I need to work like I am.

I have learned that I am far stronger than I ever gave myself credit for.

I have learned that home is where the heart is.

I have learned that strangers can offer just as much love and support as friends and family.

I have learned that education is a hinderance without the ability to think critically.

I have learned that I don't care how much you know, unless I first know how much you care.

I have learned that good intentions do not prevent mistakes from happening.

I have learned that if I don't take care of me, I can't take care of you.

I have learned that I have the heart of a child, but not the body.

I have learned that a baby can change the world, one person at a time. Again.

I have learned that just because I see providence, it doesn't mean I know God's mind.

I have learned that God knows what I can handle, while I think I know what I can't.

I have learned that my favorite color is pink.

I have learned that butterflies are magical.

I have learned that I LOVE SQUIRRELS.

I have learned to keep moving.

I have learned that 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."

What have you learned?

God night.

46 comments:

  1. I have learned, through this blog that anything is possible, and to always keep your faith!!

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  2. heaveno!

    i have learned that there are a lot of really good, kind people in this world.

    i have learned to love a family that i have never personally met, but feel blessed to "know."

    i have learned that sweet bella has changed so many lives and will continue to do so.

    i have learned that i stay up too late waiting for the latest update on sweet bella - trying to learn patience from that precious little girl :)

    i have learned to look for the fabulous socks of the day and think a certain aunt in nc might appreciate a shot of those dr. suess socks!

    i have learned that one day sweet bella will say "yeah i was born with this rare skin condition, but when they brought me home from the hospital,it went away."

    god bless y'all!
    susan
    w-s, nc

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  3. I have learned:

    That I am SO blessed to have a healthy beautiful 14 week old baby girl (Isabella)

    That I can fall in love with complete strangers!

    That I can fall asleep at night thinking about a beautiful little girl named Bella!

    To NEVER give up!

    I have learned to never take life for granted!

    Bella, the pictures of you sitting up made my heart so happy! Dont give up sweet girl! You WILL get better! One day you 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."

    xoxo

    Sarah In Colorado

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  4. Beautiful Bella...I love seeing you sit up. I'm so glad that you enjoy it too! The weather has been beautiful here in Dallas and today when I was outside I saw your butterfly again. I've been trying to print out the butterfly your daddy posted the other day to have my son color for you but my printer isn't working so well. Tomorrow I'm just going to cut some out cause I know you'll like them all the same.

    I've learned from your journey that a parent is truly the one who will fight tooth and nail for their child. Your daddy has taught me that if I have a question about my babies...I need to speak up because nobody else will. I am Aaron, Sydney and Elle's Mouthpiece.

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  5. Bella, you are so beautiful!

    Love always
    Shana
    (Australia)

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  6. I am learning to trust God and know that He sees the whole finished picture that is our life.
    I am praying for you, precious Bella!
    Mary Chinn, Valparaiso, IN

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  7. Sweet sweet baby!

    I have learned that everyday that goes by that I have met the most amazing little girl in the world.

    I have learned to pray a lot harder and have faith in the healing of this precious child.

    I have learned the love of a strong family that has lived through more trials than any one little girl and family should ever have to in a lifetime.

    I have learned to love people that I have never met through the dedication and strong will of a father and mothers love for their daughters.

    I have learned that everyday I am more amazed by Bellas strength and courage than any human being I have ever met.

    I have learned to love my two babies more and not to sweat the little things because after finding Bella and learning about this horrible disease everything else just seems so small and irrelevant.

    I have learned that I don't like computers sometimes, especially when they will not let me post a comment in over a week due to internet issues.

    Sweet Bella I cannot wait to see those fabulous socks dirty from you running around in them darling baby girl. Keep fighting precious and know that we love you and will be right here with you everyday until the day you get to play in those leaves right along with Daddy and Ali no matter how long it takes.

    Keep fighting baby gir!!! We will be praying constantly for you and your family!!!

    Love,
    Susan H. Troy, AL

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  8. I have learned that enormous strength comes in small packages. (Bella) I have learned that love and perseverence and prayer can bring miracles. I have learned to try and be more humble and grateful for our daily lives. I have learned that there are beautiful things happening in what others might see as dismal lives. I can't wait for the photos on this blog to be full of Bella and Ali running and playing with their parents looking on....All my love and prayers to Team Bella. Here for you out in California!!

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  9. I have learned that you are an awesome poser in your fancy sweatshirts :)

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  10. I have learned that anything is possible.

    I have learned that miracles happen everyday.

    I have learned that God answers prayers.

    I have learned the love of a child is the sweetest love.

    I have learned that being a mommy is the BEST job in the world.

    I have learned my house CAN be a mess.

    I have learned patience.

    I have learned to speak "2 year old".

    I have learned to enjoy the moment before its gone.

    Stay Strong sweet Bella!!

    Lots of Love,
    Amber, Craig, Malorie(2 1/2), Liam(9mos.)
    The McLaughlin Family
    Moreno Valley,CA

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  11. I have learned that when you have 3 children, you quickly become outnumbered. I"m not sure if that's good or bad.

    I"ve learned my youngest is going to give me early grey hairs.

    I've learned that when your youngest eats vics vapo rub(just a smidgen) it doesn't make them sick, but poison control will call an hour later and check up on you(tonights lesson thanks)..

    I've learned it takes both sun AND rain to make a rainboy(important lesson in life)...

    I"ve learned with sharing your own expirences, others offer THEIR expirences no matter what , sometimes making you feel not so bad that your kid just ate vics vapo rub...


    I"ve learned I"m not very patient waiting for new bella updates.

    I've learned sometimes you get sock envy(thanks Bellagirl!)

    My mother of the year award ? my youngest is like a train wreck at eating things he shouldn't. I love/hate the calls when the husband calls me at work and it starts with "what would happen if someone ate....".
    I just want to bang my head on the desk. My 19 month old has eaten way more than his fair share of things that probably should not be eaten. My middle child MY Bella, went through a fascination with butt paste and what it would do if she painted said little brother and the carpets..and then added baby powder.
    I must.invest.in.hair dye.

    love from wisconsin
    Kasie, Matt, Jace, Bella, and Jax

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  12. Hi, Bella, and family, I couldn't sleep, so I thought I would drop you a line. Bella, I saw you sitting up with some help, You're doing good. I could even see a little neck peeking thur. I know you still feel pretty bad, but hang in there, it will get better.
    Now, for a little about me. My name is Carla, Rose is my middle name. I live in Portsmouth, Ohio, which is where I grew up. Although, we have lived in several different over the last 21 years because my husband works for the Norfolk Southern Railroad. He has a pretty exciting , and sometimes sad, job. He is a Claim Agent. He has to investigate all the train accidents in his territory. Sometimes, people do foolish things when they are driving, they horse around with their friends, talk on their cell phones, and don't pay attention. Then it's too, they drive their car in front of or into the side of a moving train, or they try to beat the train across the tracks. Most of the time, those people pay dearly with their life for not paying attention. My husband, Ron, has to investigate the scene of the accident and all people involved. Sometimes, he has to go visit family's of love ones that lost their lives. That is very hard for him, especially,when is it a young person. It's very sad.
    I am a nurse, an LPN, to be exact. I've been a nurse for 34 years, but I haven't been able to work for a year and a half because of my back hurting. I had surgery in July, and it helped some, but may have to have another to make it all better. I also like to cook, bake cakes and decorate them. That is my second passion. If we lived closer, I could bake your next birthday cake. At work, they used to call me "the cake lady".
    My son is 28yrs old, and he lives in Florida. He does some kind of top secret work that he isn't allowed to tell us about, but he did reassure me that it was all legal. HaHa. And, he enjoys it. He used to be a Marine, he is very patriotic to his country and loves this wonderful country that we live in.
    My daughter will be 25 on Halloween, Oct 31st. She's my little witch. She even dressed up as a witch for several years when she was a little girl. Now, she is all grown up. She is a Hair Stylist and works for Smart Styles, which is the beauty shop inside of Walmart. She is also going to college full time. She wants to teach elementary students, and write poems, short stories, and books. She has had a couple of poems published in local magazines. She wrote a beautiful poem for all the students that were killed in the Columbine High School in Colorado several years ago. That poem is framed and sits in the display windows at the school, placed there by one of her teachers.
    Ron and I love in Southern Ohio, not far from the Ohio River. Most of the people here don't have much, but everyone is friendly and loving. My husband got transferred back here after we had been away for 21 years. It's very different here. Much warmer that Fort Wayne, IN where we moved from. Most of our family is here. Aunts, Uncles, cousins, his parents. Our son, Jeremy lives in Florida, right outside of Fort Lauderdale. Our dau, Becky, stayed in Fort Wayne, for now.
    Our weather is changing. The leaves have all turned bright colors, and it has rained all day. Feels like the beginning of winter. I like summer and feeling the sun on my face, while I'm floating in the pool.
    Well, I'd better go, I've talked to long, probably bored you.
    I'll probably talk to you tomorrow, but will keep it shorter.
    You rest when it's nap time, so you can enjoy some more sitting up time with daddy tomorrow. I'll try to dig up some pictures of my family and send to you. When you feel better, you'll have lots of cards and pictures to look at.
    We love you and are praying for you.
    The Spradins, Carla and Ron, Portsmouth, OH

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  13. I have learned that sweatshirts that say "Bella's Mouthpiece are both fun and prophetic. Thanks to Grandma Carolyn, and the sended of the other shirt.

    I have learned that you ask interesting questions that people respond to, from all over the world, with replies that are heartwarming to read.

    I have learned, but am not surprised, that you, Ang, Ali and Bella are stronger than anyone realized, because who could imagine the courage necessary to do what you all have been doing so well, or as your cousin, Claire, says "with such grace."

    Love you all!
    Mom/Nanny Sheila

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  14. I was nominated for parent of the year in 2008 when I let go of Nolan's stroller on our driveway hill and he hit the curb, split open his lip and needed three stitches. Am up for it again this year when Kellen hit Nolan in the eye with the Wii remote in February, but stayed at the movies with Ang and let Jim take him to the ER and showed up three hours later. The cap incident is no biggie, at least you were in the room and nearby if something bad happened. You can't be in the running for both best parent of the year and bad, leave the rest of us a chance at winning something.
    Breathe strong Miss Bella, you will be off the vent, soon!
    Love you, Jen.

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  15. AMAZING picture of you and Bella! It looks so peaceful. You have an AWESOME family! Stay STRONG!!!

    Ali, you are a WONDERFUL big SISTER!
    MOM, you are a SPECIAL super hero!
    DAD, you are a SUPER STRONG Dad!
    ~~~GO~~~BELLA~~~GO~~~


    TEAM BELLA
    Becky (TEXAS)

    TEAM BELLA

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  16. Tim,

    I am glad that Bella is stable and going ahead with drugs weaning. She really was on too much and it's good she tolerates the weaning. You know, when you Re on your back you are in "defeated" position. Sitting and staying feels like you Are a human, not an object in somebody's hands. No wonder Bella likes to sit. Go on, dear little girl!
    I am glad, that you, Tim, look more playful and think about philosophical not medical issues today. I agree with you, only wonder why there must be so much pain to gain these conclusions. It seems God doesn't care for the ways as long as he reaches his goal.
    You see, all the changes to other people Bella is bringing is happening again and again in so many parts of the world with other EB children and other communities. I think it is cruel. It is cruel to hurt your child every day, just to keep him alive. What kind of love is it, and still you have to keep doing it.
    Sorry I cannot laugh at Ali chewing the marker cap, you can't prevent such small and harmless things. Bella has much more chemistry in her body now and you have to agree with it out of pure love.
    Sorry for the darker tone, I was as enthusiastic ans as philosophical as you, when my son was alive, but seeing it again and again with other children breaks my heart. What does God think of us, people, if we can be changed only by such cruel situations?...
    Keep on going, Bella, I want you be the happiest child on the block, running around, climbing trees and playing football. Please, get better!
    Hugs and best wishes tomthe whole family!

    Elena
    Bulgaria

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  17. I am learning about the power of prayer and about ASCII art as I tried to find a nice butterfly for you.
    ` '
    ;,,, ` ' ,,,;
    `Y888888bo. : : .od888888Y'
    8888888888b. : : .d8888888888
    88888Y' `Y8b. ` ' .d8Y' `Y88888
    j88888 .db. Yb. ' ' .dY .db. 88888k
    `888 Y88Y `b ( ) d' Y88Y 888'
    888b '" ,', "' d888
    j888888bd8gf"' ':' `"?g8bd888888k
    'Y' .8' d' 'b '8. 'Y'
    ! .8' db d'; ;`b db '8. !
    d88 `' 8 ; ; 8 `' 88b
    d888b .g8 ',' 8g. d888b
    :888888888Y' 'Y888888888:
    '! 8888888' `8888888 !'
    '8Y `Y Y' Y8'
    Y Y
    ! !
    Loving you from Germany, Laura Valetutto

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  18. Hi Bella, Tim and family! My family and I just spent two weeks in Spain, but I continued to follow your story from there. While I was unable to comment (reading from phone), I continued to pray and was very happy to hear about all the improvements. The pictures of her sitting up just warm my heart... what a miracle!

    Our trip to Spain was to visit my mom who had a lung transplant in April. Her doctor didn't want my kids to be around her until she was a bit stronger, so we had to wait until almost 6 months post-transplant to visit. She is doing well after a mild rejection episode this summer. It was a blessing to finally see her after 10 months, although she still has a long recovery road ahead of her.

    I couldn't help but think of your sweet Bella as I saw my Mom take 28 pills during a 24-hour period. She is so grateful for what the transplant has done for her quality of life, and I can't wait until Bella is in the same place.

    Thank you for sharing your story with us, it has made me a better person. A better mom. A better daughter. A better wife. A better friend. Thank you Bella!

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  19. Oops, sorry that didn't work. I'll keep trying :)

    Laura V.

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  20. Bella, keep on going - slow and steady wins the race! And babe, you're getting to te finish line, just focus on healing and kicking EB to the corner!

    I've learned enumerable things from you are your family - you're touching hearts, taking numbers, and changing lives Bella!

    Keep on going,
    Tamar in Boston

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  21. That's all the Lord asks of us - one day at a time. Every day is like a mini lifetime so don't dispair. And thank God you have such fabulous fashions to face each day with!

    Go Bella - we love you and are "with you" all day long.

    Love,
    Aunt Mary

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  22. ______________•____________•_______________
    ;,,,_____________`._________.´____________,,,;__
    'Y888888bo.._______:______:______..od888888Y'_
    __8888888888b..____:_____:____.d8888888888___
    __88888Y'__`Y8b.____`___´___.d8Y'__`Y88888__
    _Y88888__.db.__.Yb.__'.__.'__.dY.__.db.__8888Y_
    ___`888__Y88Y____¨b_(♥)_d¨___Y88Y__888´____
    ____888b___"'' _______(.)_______"''__.d888______
    ___Y888888bd8g."'__.....':'.....__'".g8bd888888Y____
    _______'Y'___.8.___....d(♥)b....___.8.___'Y'________
    ________.!__.8'_.db_.d..':'..b._db._'8.__!._________
    __________d88__'__.8_(.)_8.__'__88b___________
    ________d888b__.g8._.(♥)._.8g.__d888b_________
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    _________'8Y__`"Y__________Y"´__Y8'__________
    ________'Y_______________________Y'_________
    ________!________________________!_________

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  23. Good morning!

    Sweet Bella - keep chuggin along - heal more and more every day. I will pray that you continue to see progress and improvement and that you and your family are comforted and strengthened and supported.

    Smiles :)

    Lauren in Spring TX ( a momma in Spring, TX)

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  24. We love you Bella! Keep it up! We're still praying!

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  25. Bella- I love seeing you sit up! :) You have come a long way in a short time. It is so good to see it brings tears to my eyes. Sending you love...can you feel it? xoxox


    I have learned there are still good people in the world. People like me that care about someone they have never met. People that come together and offer prayers for healing and support. It still amazes me.

    Parent of the year...hmmm. Noah "eating" hand sanitizer is one (thankfully it was more like a taste...he licked it). The other...one night my stepdaughter was chasing Noah he tripped and fell. No biggie. When he fell he landed and hit his chin on a soup can waiting to be put away. Er trip and stitches....yep felt like a heel. If only I would have put that can away. Like the dr said. Girls like scars. :)

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  26. Good morning Bella and Family! I love and giggled at Bella's picture where she is giving the "you messing with me?" look! So cute!

    I have learned that with all the negative/sad/bad news we see on TV from all over the world that is shoved down our throats, that there IS good in people and this blog is a prime example of that! People from every corner of the Earth pray and love Bella and most of us have never even met her! What an inspiration!

    I have learned that every second/minute/hour/day with my Jack is precious and I savour them - even when he is a screaming mess because I once again took my chapstick away from him! :-)

    I haven't had much time to win the "Parent of the Year" awared, but I have one incident that comes to mind. I run in the evenings with Jack in his jogging stroller; well the first time I took him out in the jogging stroller I rolled him out the front door onto the cement patio, let go (without putting the brake on), turned around to lock the front door, and as I turned around I see Jack rolling off the patio, down the step, onto the sidewalk, through the fountain grass, and finally the jogging stroller toppled on its side. After I resumed breathing, I ran over and there was Jack hanging by the stroller harness looking around like "What just happened?"!!! He then started crying as soon as he saw me - I'm sure the look on my face didn't help! We dusted him off and laughed a bit, gathered ourselves, and took off on our run!

    Keep being strong Bella! Praying for you!

    Darci Spear and Jack (16 months)
    Pittsburg, KS

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  27. I've learned what love looks like.

    Still praying,
    Mandy

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  28. i've learned that bella is a fighter.

    i've learned what a wonderful family bella has.

    i've learned thru your story to love deeper and "love" a family i don't know.

    thanks for sharing your journey and sweet family.

    your army is behind you bella

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  29. I've learned that I don't know it all but God wants me to know more.

    I've learned that letting go doesn't always mean giving up. It was just time to let it go and move on to something better.

    I've learned to TRUST in GOD, He WILL take care of what I thought I could better than I EVER thought I could!!

    I've learned there is more for me to do to serve Our Father.

    I've learned I'm okay today in my own skin

    I've learned just how HUMONGUS YOUR heart is Tim and I've learned the POWER of MOTHERHOOD from Angelique


    I've learned that PRAYERS REALLY DO WORK.

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  30. Praying is a way, like an escape from the reality, leaving the final responsibility to someone else - like thee in real was anyone for an infant. This baby is actually living her reality in truth, the very reality her parents have chosen for her after being chosen to be parents for a child with a bad sad and horrible illness. I feel for the parents to be in front to choose, I feel for the poor infant with no vote whatsoever, I feel for all the ones in there close to these poor ones. I think it is just so so very unfair. Deeply. All the best with too many tears.

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  31. T, A, A, & B,
    We miss and love you!
    Love,
    S, D, W, & M

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  32. OH MY GOSH! Her skin looks awesome!!!!!

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  33. My 5 year old proclaimed, "She is peaking!"

    -Cheryl

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  34. Lynne, Bob, Jack and BenOctober 5, 2010 at 11:57 AM

    Among a bazillion other things Bella has taught me, I have learned that prayer, intentions, energy or whatever you want to call it, truly does create miracles. For years I wanted to really believe that people can cause miracles and even told myself I did, all the while questioning it. Through Bella's journey, I now KNOW it. Thank you, Bella. And keep creating those miracles baby girl.

    My favorite comment is from Mandy: "I've learned what love looks like." That too.

    Finally, I'm taking on just being mindful and present with my kids. This blog, and who you are for Bella, is a big part of my daily meditation on that. (You'll have to remind me of my worst parenting moment!)

    I'm behind on blogs, and you requested a "what's up out there?" So here it is. Work is crazy as I have a client who's been given a new job in her company without losing the old one, but it feels good to make a difference for her. We're exhausted and grateful and we try to keep pace with Ben and his strong will and loving watching Jack grow into himself. In a weak moment, I agreed to let him play two sports this fall, American and (you'll be proud), English football. So, we spend a big part of our week running to practice, games, etc. Put that kid on a playing field, and he is one big ball of joy. Yup, I have the SUV, the folding chair with the built-in awning and the big cooler. And I'm not even embarrassed. :-)

    Throughout our days, we think of you and send you love. Bella, you go get 'em.

    Love you guys.

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  35. Love the sweatshirts!

    One of the many things that Bella has taught me, is the need for an "EB" policy at my NICU. To have a policy in place, so that if and when we take care of a baby with (suspected) EB, we can have the right equipment and knowledge from the start.

    Bella's skin does look awesome by the way!

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  36. Hi All,

    I have learned from Bella that one really can pray continuously, nearly 24 hours a day...it has, as I have said before, become my purring mantra (There is a balm in Gilead...mmmmmmmm).

    Bella, continue to fight on, drawing from the power of love that is resonating all around you...

    Ali, continue to smile, play and sing, for your spirt is the sweetness in the resonance...

    Tim and Ang, know how much we miss you all, and that our love and longing is like the strongest rope in the universe, gently pulling you all, healthy, happy and healed, back to us.

    Love,

    Brian

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  37. Yay Bella!! Keep up the good work at getting better!! I dont always comment, but know that my family and I are praying hard for you all everyday!!! Parent of the year award- today. sending my 7 year old to school in a cute dress for school pictures. Only to realize when she got home that she had no underwear on! Yeah. I am a little embarrassed!!

    Kara, NY

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  38. @ Jessica,

    Bella's NICU nurse, Tanya, helped create an EB policy in our local hospital after treating Bella and 3 other EB kiddos in the same year. Email Tim and we can put you in touch with her.

    timringgold@gmail.com

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  39. Laurie L (Mnpls, MN)October 5, 2010 at 6:19 PM

    I have learned that a child I have never even met can be a true inspiration to me and my family.

    I have learned that I need to hug my kids a little longer and be a lot more patient.

    The journey your family is on has taught me about what real strength and faith is through the power of your words and willingness to share your story and your Bella with us. Thank you.

    Laurie L (Minneapolis, MN)

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  40. Bella such a sweet picture of you and daddy! Glad daddy is able to recharge a little during the day with his sweet girl!

    Also awesome pictures of you sitting up - we can all see how hard you are fighting and working! Praying so hard for you to keep up the good work and to keep moving slow and steady toward recovery!

    Daddy asked us all what we have learned. Great question.
    I have learned that even in the darkest times, I can still see a glimmer of hope!

    I have learned that life is precious and wonderful, no matter what!

    I have learned that one small baby can affect the whole world in a truely amazing and positive way!

    Non-stop prayers for strength and continued healing for you! Also non-stop prayers for strength for Ali, Daddy, & Mommy!

    Tina in NJ

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  41. I love reading what everyone has learned. :)

    Denise WI

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  42. I have learned that even though we get older, and think we've experienced so much, that there is still room for "amazement". Pure amazement. And it's breathtaking, heartwarming, awe inspiring. It comes in the form a small child and her big sister, and the mommy and daddy chosen for them. And it captures their struggles, their strength, their faith, and their eventual triumph. Thanks for the continuing life lessons. Much love to you all, Terri

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  43. Dearest Bella, your skin looks so good. It's also really good to see you sitting up. Looking forward to when your Daddy tells us the you are crawling around and getting into everything. I pray for you every day. You have soooo many prayers coming your way - I see all these people responding and it is just AMAZING!! Tim, love the modeling of the new sweatshirts - so great. Cracks me up. She is going to look back at those pictures some day and have so much fun with them. Love you guys.

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  44. Hi sweet Bella! Its been a couple of days since I have been able to chat with you. Having 3 2-yr-olds at home keeps me busy. =) I am happy to read that your sedation is weaning down. And I just wanted to jump for joy when I saw you sitting up today. Dont you for one minute worry about that blood pressure of yours, I just know in my heart its going to be just fine. Daddy wanted us to share our "Mommy of the year" moments and boy I have a few I could share. But I will share the "best" one with you. I was cutting fruit one day with a huge cutting knife when the phone rang. It was a dear friend of mine that I dont get to talk to very often. I sat on the couch and chatted a bit. After a couple of minutes, my sweet daughter Lainey came trotting into the front room with that great big knife. Now Bella, you cant ever do this to your mommy and daddy because it will scare the bajeepers out of them. For me however, having witnessed just about everything with triplets, simple chuckled and quickly told my friend to hold on while I went and got the sharp object. Now Bella, I am not sure which is worse. The fact that my daughter got this sharp object, or the fact that I have seen so many crafty heart-stopping incidents with these three that I was barely phased! You will be happy to know that we are much more aware of things we leave on the counter within the 3 sweet darlings reach. I have learned that life is too serious to be taken seriously and to keep sharp objects towards the back of the kitchen counter. Whaddya think, should I win the award?? =P

    Hugs
    Mary, Nick, Gabey, and sweet Lainey
    Omaha NE

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  45. I have learned that the strongest, bravest, most courageous people often times come in the smallest of packages! Keeping you all in my thoughts and prayers!

    Tina C. - NJ

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  46. Hi Bella!

    You're Dad asked us to tell you what we've learned from you. Well, I have to tell you that your Dad taught me something important today - that I'm not in control, but I need to work like I am... I'm a bit (!) of a control freak and this is something I really needed to hear today.

    I've learned something surprisingly (at least to me) from you - It really is possible to connect to people over something as seemingly impersonal as the internet.

    Another thing that you have reinforced - everyone has (at least) a bit of the hero in them. You, your sister and your parents are all heroic people.

    Have a good day and night!

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