Wednesday, October 6, 2010

October 6: Day +96


Peepers!

Heaveno!

24 hours is plenty... whew!

Today was non-stop. Circuit change. Lines change. Arm dressings change. Sutures in, sutures accidentally out. Sutures in again, sutures out again. Gel foam in... I'll get to it all.

I'll tell ya, we are now using heparin in the Prisma circuit instead of citrate, and it has made all the difference when changing out filters. Bella used to HATE it when we would change her filter. It was quite an ordeal. See, every 72-96 hours, we have to change the filter on her circuit (I've probably told you this before). Whenever we would start up the new circuit, Bella would either get tachycardic or hypotensive. Now, on the new heparin circuit, she barely notices when we turn it on. We have also tweaked the process a little where we go back on just before her scheduled ativan and methadone, and we go on at a really slow rate, then ramp it up over a minute or so... like we're sneaking it on so to speak, and it works!

We went back on the new circuit a little behind schedule at 12:30, but it was all good.

Next up, new sutures. Bella's med line and her A-line were missing a suture in one of the wings on each line, and the other remaining suture was pulling out in each, so we got surgery to come up to re-suture them. The problem was they never told us when they were coming. I made the mistake of not setting EVERYTHING up in the morning, thinking naively that they would answer one of the many pages the resident made, trying to ascertain what time they were coming. Nope. They just walked in the door at 2;30 like it was nothing and BOOM! "Hey, let's do this!" Problem was, I wasn't ready. So, I ran around trying to get stuff ready on the fly, which is not my style, and the place got pretty disorganized pretty quickly. We got the new stitches in, the surgeon left, and about three minutes later, it happened.

I can't even say exactly how, but somehow, a portion of the a-line tubing caught the corner of the cloth under her arm (the chuck) and before I could blink, I was looking at the A-line hanging upside down from her arm. It tore one stitch right out of her arm, and it tore the skin along the wrist line above the other stitch. So, while the second stitch was still in skin, the skin was no longer attached to her arm.

Despite all the progress Bella's skin has made, it is still as fragile as warm butter.

So after trying to re-stitch it, the wave form of the A-line disappeared. We wrapped the line, hoping it was just spasming, and let it hang out for a while, no dice. No wave form. So, one of our stellar residents, Andrew, tried to take out the sutures and start over, but no matter where we tried positioning the line, we couldn't get a wave form again. We even brought in Dr. Kooy, the attending ICU doc, and both he and Andrew tried to run a wire in and replace the line, but no dice. So, we lost the A-line.


Andrew, one of our amazing current residents, in action trying to save the A-Line!

On top of this, Bella's hemoglobin and platelets are low, and she is on heparin, so she is leaking blood and bleeding from anything that is open, including the new suture sites. So, it was A MESS trying to put her lines back together. I had to completely redress both her med line and the A-line twice (then cram gel foam in the x-A-line hole), they were bleeding so much this evening.

I want to be mad about the whole thing. I want to be mad at the surgeons for not calling back. I want to be mad at myself for not prepping in advance, knowing that surgeons like to just come in when they have a minute and can't return calls easily. I want to be mad at myself for trying to sneak an hour of side work in when I should have been tending to Bella. I could have easily been ready if I had put my computer down (even though it was the first time since Friday I had logged in to do any extra work in the first place).

However, I'm noticing that when I allow myself to BE mad at either myself or the surgeons, one, it doesn't change what happened one bit, and two, I feel lousy. I am noticing that getting mad over what has already transpired really isn't very useful to me. I don't really like it, and it's not bringing the A-line back. Still, why is it that I can't just shrug it off? I HATE to ever admit that I might have made a mistake. I put more pressure on myself than you could imagine, and when I make a mistake at anything, ESPECIALLY Bella's care... man, it messes with me BIG TIME. I think it's because I want to think I am perfect and everyone else is to blame for every mistake that ever occurs. It's much easier to point the finger at others, and when I can't, I take it out on me. Overly critical? Maybe. Human nature? Probably.

I like to say that I am a "Recovering Perfectionist." It's not always easy admitting I'm not perfect, but here goes... :P

I am not perfect.

There. I said it. The word is out. Now, the whole world knows my big secret! LOL. I'm pretty sure I'm more worried about it than you, so I'll go ahead and drop the whole thing now. I just thought it would be interesting to share about how making mistakes as an adult, especially at work (I consider my role at the hospital with Bella my principal work right now), gets under my skin. Can you relate?


Mommy getting to hold Bella up today!

In other news regarding Bella's ongoing blood pressure roller coaster, it was a little less of a coaster today. Going off the circuit actually helps Bella's blood pressure in a couple of ways, so this morning, instead of having out normal toilet pressures, we had generous pressures. By the end of the day, we will probably be even for the day regarding fluid in and fluid out. This is a victory on a circuit change day, because back in the day, Bella would be up 300-700 mL in a circuit change day. We're learning! I hope that this learning curve will serve baby Elle now that she is on Prisma as well.

We held off on administering etanercept today. There is a similar drug, infliximab, that might be a little more accurate in targeting the exact nature of Bella's elevated TNF receptors. Dr. Wagner wanted to do a little research on his own before giving the okay, so we are waiting on him and his thoughts on the drug before we administer it. The good news is that Bella's life isn't in danger, so we don't have to rush into a decision on this.

In other news, Bella did a 12 hour pressure support trial today and did great! She was on pressure support from 8:30-8:30, and she'll rest overnight, then we'll do it again tomorrow. We are moving toward a point where we can take her off the vent real soon! We are excited that we are making forward progress here, even if we are a little stalemated on the blood pressure saga.

So, tomorrow, there will be lots of dressings to redress no doubt that will be soaked with thin bright red blood, and we'll get a visit hopefully from Dr. Sidell to place a new A-line in Bella's right wrist. The honest truth about the A-line is that it was on borrowed time; most A-lines peter out by this point in their lifespan anyway.

Thank you ALL for stepping up with the letters to Bella today! Holy Cow! We didn't finish reading them to her because things were so hectic for so long today, but keep 'em coming! We are so lucky to be at the center of this experience. To learn to love someone from far away....

Oh! I forgot to tell you this cool story....

A friend of mine set up "Google Analytics" on our blog so we could see where people visited from, how many people visit, etc. Well, I was looking at the visitors and length of time on the site today. Know what I noticed? Thursday and Friday, September 23 and 24, there was a SPIKE in activity on the blog.... like HUGE, not only in the number of visitors, but the amount of time they were on the page. That Thursday was the day that I felt abandoned by the ICU and BMT docs. That was when you started writing to Bella. THAT was when Bella's blood pressure mysteriously JUMPED and became hypERtensive after being 30s over 20s for Tues and Wed of that week...

Know what I saw when I looked at the graphs? I saw YOUR energy literally lifting Bella's blood pressure practically overnight. It was fascinating. I don't bother telling the docs this, and I know that correlation does not automatically indicate causality, but it sure made the hair on my arms stand up a little, and even better, it lifted the weight of my heart in my chest. It reminded me that there are powerful forces eminating from outside of Bella's room that are impacting her as much as the forces inside her room. THANK YOU for BEING that force. I am tired at this stage of this journey, and you may be, too, but PLEASE, don't give up. I need your strength when mine fades, as it has these past two weeks. Thank you for refilling our tanks, day in, and day out. I don't know what I would do if there weren't any comments to read to Bella. I am so grateful for you, I can't even express it here. It is a feeling that is beyond words.

Please, keep holding this vision 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."

God night.

47 comments:

  1. Amen! Gez Bella and you had a tough day! Praying that the bleeding stops and the dressings changes go smoothly. Also praying a new a-line goes in smoothly as well!!!
    WTG BELLA on the pressure trials!!!!!!!!

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  2. Not tired at all here, lots of energy to keep praying.

    Love,

    Bec xxxx

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  3. I'm praying you have a peaceful and healing day! It's always nice to see you sitting up. Your mom looks like she was listening to you tell her something really important. Keep fighting sweet Bella.
    Sending lots of love!

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  4. Praying for a smooth and seamless day tomorrow! Praying that God put his hand upon your care team and that the A-Line goes in perfectly! May God continue to fill your Mommy & Daddy with the wisdom he has so perfectly shed upon them. Bella Doll, your Daddy & Mommy are the definition of the WOW factor...I would want them to be at my side fighting for me too! Tim & Ang- you are truly an inspiration and I admire the love you share for each other and as a family. Bella, you are imprinted on my heart and mind...I think about you ALL the time, everyday! And with each thought, follows a prayer for you, always :) Sleep tight, get lots of rest...so excited that you're progress is going great...almost off the vent...AH-mazing! With all our love,
    nicole b

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  5. ps...since I'm Romanian, I'm partial to 'Dovleac'...the word for pumpkin! Hahaha...such a cute post, Jane :)

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  6. WOW I have goosebumps. That is just amazing that so many people can love and want to get to know a family they have never physically met. I'm so glad that you are able to feel our love. That's just amazing. Bella, you are so awesome and so strong. I'm sorry for what you had to go thru today with your A Line. That's terrible and Tim and Ang, I'm impressed with your ability to deal with this day in and day out. Your an amazing family. Stay strong.

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

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  7. WE will never give up, and when Bella goes home, healed, there will be more EB babies to help forward. We're are team bella, and many of us, i'm sure, are team EB, too!
    love and hugs

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  8. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. - Romans 5:3-4

    Before praying for Bella and all of you tonight, I closed my eyes, opened my bible and pointed to a verse. My intentions were to find inspirations for my prayer, and also have my words be that of God's and not my own. Remarkably (and with God's guidance), I selected the above Romans verse. I hope you find inspiration from it as well.

    In Christ!
    Kim (and family)

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  9. Dear sweet Bella-

    I love seeing you sitting up! That means you are inching closer to being so much better! Your dad mentioned how many people are learning to love you from far away. I can easily say it's not hard at all. You are a beautiful girl with a beautiful family. While it is not easy to see you (or anyone else whose blogs I read) hurt, I know that God is holding you in His hand and He is in control.

    Team A is praying for you in Texas! Hope your Thursday is calmer!!

    Love,
    Laura

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  10. Lisa (sum1lvsu@yahoo.com)October 7, 2010 at 12:18 AM

    All I can say is your family is devoted to your success Bella. I hope and pray for the best for you and I support your father's vision. God's plan is not finished; keep hanging in there. Words that come to mind regarding your status Bella--> Amazing, Incredible, Loved.

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  11. Stay strong Bella, you are so very strong to have endured everything you have so far. You are a fighter, and you have the best parents in the world, they love you so very much. I have two boys myself, I can't even imagine how they hold it together everyday. Please Bella, take strength from my words and energy, I feel its the very least I can give you. I pray for your wounds to heal, your inflammation to go away, and your blood pressures to become stable once again, and if all that could happen, for your kidneys to start working too.

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  12. Keep goin Bella you are doing so well, keep being strong, I hope tomorrow is a good day for you too. We are all thinking of you here in London and reading for updates, EB is very close to our hearts as my baby boy had RDEB too. Keep strong xx

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  13. Tim I have a question hope you dont mind, I have been reading how well Paynton is doing, and was wondering whether they know if Paxton was also a carrier of the EB gene. I know that Ali is, is it possible that the carrier gene could be causing Bella some extra problems? Just a thought, good luck today, will read tomorrow as always

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  14. Tim, don't be so hard on you. Of course you want to do everything pefect for Bella and you always do your best.
    Dear Bella,
    It's nice to see you sitting up with your mum. I'm sure she was telling you some nice stories and how much she loves you.
    The sun is out in Weybridge,UK and and we also have those beautiful colours of the automn.
    I pray for today to be a better a day.
    Love,
    Mariana

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  15. Dear Bella and Family,

    No giving up here! Never ever giving up! You are all in my thoughts every day. I am sure that one day Bella will say "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away.". I read that comment every day and I just have this feeling that it is slowly, oh so slowly, but still going the right direction. Hang in there.

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  16. Hi Lovely Bella!
    So super happy mommy got to see you sitting up! I know she is missing you tons when she is at work! Remember Bella steady slow progress is OK. I think of you all day, everyday and pray for strentgh and healing.

    Tim - how do you join the "Recovering Perfectionist" club. I am the same way - especially when people don't do things "my way". When I make a mistake I feel guilty for days! I am going to try hard to "NOT be perfect" and live with it! Thanks!!!!

    Tina in NJ

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  17. So wonderful to wake up to a new update! Sometimes I just can't stay up late enough to wait for it! ;) I love seeing what you have accomplished for the day, sweet Bella! You completely amaze me as you endure each day. I am even more marveled at how complex and amazing God made our bodies to be! I am praying and will be in PRAISE to see you competely healed! Ok, well I will praise God for each day you have but will be estatic to see you running and playing! You have an awesome family Bella, both immediate and now world wide! We love you and we are behind you every step of the way!!!
    Much love from TX, Michelle & family

    Dad- You have to be exhausted but can I tell you how much I admire your strength and ability to get in there and be SO involved in your childs care. I know you can't see it any other way but it is touching to see you handle it all in whatever way. :) Praying for your day too!

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  18. I will NEVER give up on Bella or on you!

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  19. Bella, I love you sweet girl. You keep fighting and never give up. So many people all over the country (and even the world!) are praying for you and loving you so much. KICK EB's BUTT! Jonah says "hi". You're so strong.

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  20. Bella, you and your dad are such an inspiration to everyone that reads your blog. Hang tight and maybe for a day or so you might want to give your dad just a little bit of a break ;).
    Thinking of you often.
    The Cooley family in Nebraska

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  21. Great Thursday Bella :)

    I pray that today you recover from all the hectic crazyness of yesterday. I pray that your blood pressure stabilizes and that your wounds begin to heal at a rapid speed. I pray that your neck ulcer begins to clear up and heal completely and that your fluid levels continue to decrease - I pray that you actually have some real enjoyment of the quality time you get to spend with your momma and daddy and sister.
    I pray that God's loving hand cradle you this day and improve you so miraculously that no man or doctor can do or say or attribute the healing to anything other than HIS PERFECT TOUCH.

    Blowing you kisses *** and sending you bubbles @@@(bubbles from my girls) a momma in TX (lauren in Sping, TX)

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  22. heaveno!

    it's a cool morning here in nc sweet bella! be sure and ask your daddy how many of your blog's visitors are from nc...you seem to have a lot of people that love you here :)

    please tell your daddy that we all think he is doing a fantastic job! your are so lucky to have a mommy and daddy and big sister who love you so much!

    prayers are being lifted for you sweet bella and your family!

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

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  23. bella, you continue to inspire me every day! to be a better mama, to not take things for granted, to always remember my prayers at night!! you are a hero in your tiny body! we love you and will never give up hope that you will heal completely!
    amber
    humboldt, ia

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  24. Hiya Bellagirl!
    its been a few days as this mommy/nurse has been quite tired and stressed out herself at night when I come home. I DO read, and pray/hope for you, however lately I've just not been able to write at night like I usually do.
    Tim, don't be so hard on yourself. Its ok to be mad at yourself or at others. Its human to have emotions and to feel these frustrations, especially in your shoes because you want things to run smoothly and you expect certain things out of people and that's just life. When someone like yourself (a perfectionist or ex-perfectionist..lol) has such high standards there is a bit of let down to expect as well. I'm not saying to lower your standards,not at all, however just remember to leave room for upset. its natural and it happens.

    Now Bellagirl..I do love your pumpkin hat, your socks from your last post , again I"m having sock envy. Do you realize that a 30 year old mother of 3 is having sock envy way over in wisconsin? haha. You're still beautiful and amazing and strong and you'll pull through. I know it. Life is full of ups and downs and you've made amazing achievements so far in your short life.
    Love from wisconsin!!!!

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  25. Bella- keep on fighting, little one! Still praying here in PA.

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  26. To answer the question about whether or not a sibiling being a carrier has an impact: I believe that most if not all the sibling donors are also carriers. I think Joy told me Paxton is a carrier as well. (But I'm not positive) The way it was explained to us is that as carriers, Tim , Ali and I have our skin intact because we still have about 50% of the Collagen VII that a non-carrier would have. Skin breakdown occurs somewhere around 30%. But, the theory is that we will blister more easily/faster than a non-carrier would. So, would it be better if Bella had a non-carrier donor....maybe, maybe not. They really haven't done enough of these EB BMTs to know for sure.

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  27. Dear Bella

    I hope you have a smooth day today. Keep hanging in there and know you are loved by many.

    Leslie, Louisville, KY

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  28. Dear Bella,
    You poor girl, what a rough day you had yesterday. I hope that today proves to be a little more boring for you. Hang in there, you have been through so much. We are not giving up! I love to see you sitting up, and it sure looks like you love it! Your cheeks definitely look less puffy too! I am praying that you have a peaceful day and that your Daddy can sing you some songs today. I wanted to come say hello and see you today, but I will wait until tomorrow because you have a lot going on today.

    Stay strong sweet girl, we love you!
    Amanda, Bryce and Corynn Schauer

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  29. Dear Bella
    Here is some song lyrics for you today written by karen Drucker. Maybe Daddy can sing them to you.
    I will surrender to my greatest highest good.
    I will release any fear that blocks my way.
    For every step I take is taken in pure faith,
    and I am stronger every moment every day.
    (2nd time: grateful 3rd time: kinder)
    My mind is willing and my heart is open wide.
    I trust my instincts and let Spirit be my guide.
    I vow to live a life that's real and true and free,
    as I continue walking in this mystery.
    Vicki

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  30. Bella: I thought I would say Hi and tell you a little about our son Benjamin. Benjamin is now a cute 7 year old boy who loves Legos and is our 3rd son. We live in the valley of the sun. When Benjamin was born He also spent time in the NICU. Benjamin came home and refused to feed and lost a lot of weight. As his first year came and went we still hadn't heard a single peep from his sweet little mouth. In the mean time he had 6 surgery's for hernias and ears. At the age of 2 he still hadn't made a peep. Not a wimper nothing. Then one cold (we used to live in Colorado) Christmas eve night Benjamin was sitting their and he said Cookie, Coco! Those were the fist words my son ever spoke he was nearly 3 years old. That is the best Christmas present I've ever had! That was 5 years ago and I can say we have fought hard and tried many things and even though we know that Benjamin special if I don't tell people his story no one would believe it! He is now in 2nd grade and is talking and doing everything the doctors said he would never do. I love when your dad says his last phrase in each of his posts! I was really hard on my self. I know how hard it is to have a hospitalized kid. It is very draining. Well I thought I would tell you a little about our son. Oh I almost forgot Bella in 2 weeks we are headed to your home town. We will wave as we go by! One day we will have to stop by and have some hot coco. Feel better today Bella. P.S. Good thing you are in a warm hospital soon your daddy's going to be very cold walking to come see you. Those midwest winters are brutal!

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

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  32. Look at you, Bella girl! Keep up the little victories, and soon enough, you'll be outta that silly ICU.

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  33. Dear Bella, Tim, Ang and Ali,

    I hope that today brings you rest, so that you may recover from your long day yesterday.

    You are such a loved family from all over the world; it is inspiring to see how prayer will change a situation. I pray for you all daily.

    Hang in there Tim and Ang, you are such an amazing couple to go through this and remained focused.

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  34. Lynne, Bob, Jack and BenOctober 7, 2010 at 10:12 AM

    Bella -- We will NEVER give up on you, because we know on 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." You are a miracle.

    Tim -- I'm with you in recovery. Here it goes . . . "Ahem. I am not perfect." And I'm giving up expecting the people I love to be perfect and how I want them to be. So there.

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  35. Never, ever giving up on Bella!

    Bella- What a day you and daddy had. I love your picture with mommy helping you sit up. :) I cant wait until the day you are feeling better...I know it is right around the corner. Hang in there peanut and keep fighting. Sending you love to keep you warm. Can you feel it? xoxox

    Denise WI

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  36. Hope you have a good day tomorrow and the pressure support trial works well.
    Martina

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  37. Bella, you are a courageous little girl with an AMAZING family. Keep fighting, we're cheering you on in New York City!

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  38. "Don't give up. Don't ever give up."

    In 1993 Jim Valvano (basketball coach at NC State University) was awarded the inaugural Arthur Ashe Courage and Humanitarian Award at the 1st annual ESPY Awards. Fighting cancer at the time, Valvano said the above quote in his moving acceptance speech. He also announced the creation of The V Foundation for cancer research.

    So why the lesson in sports history today? Well, mainly because of those stirring words about persevering in the most challenging of times. For some reason his words came to my mind as I read today's post and the comments. If you get a chance, go to www.jimmyv.org and find the text of his entire speech. I think you'll be inspired. Perhaps you can read it to Bella. Maybe she'll be inspired as well.

    So, Ringgold family - and especially Bella, I'll close with the words of a great man (and one heck of a coach): "Don't give up. Don't ever give up."

    Praying for healing,

    Susan
    A friend in NC

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  39. Sweet Bella,
    I think of you constantly and can't wait for you too get better and come back to California!! Now I have to write your Daddy a note :)

    Tim,
    Wanted to comment on this quote "I just thought it would be interesting to share about how making mistakes as an adult, especially at work (I consider my role at the hospital with Bella my principal work right now), gets under my skin. Can you relate?"
    Can I relate?!! As a self confessed psychotic type A personality, being a NICU nurse comes naturally... Look... No matter how many things we think we can control, it is impossible to effectively control everything. I hate that you fault yourself (even if for a short while) for things like the A-line. And I hate the realization that I recognize my own traits in taking care of my patients with your post. I can't even begin to think of how many times "I could've/would've/should've." Have the same patience for yourself that you have for Bella and your family. I will work on my patience as a practitioner too :)
    Tanya

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  40. Hi Bella! I hope you are feeling good today. I will pray for you and I hope you can come home soon! You are beautiful!

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  41. Hi Sweet Bella!
    Writing to you from North Carolina. I am a Labor & Delivery nurse and found Bella blog through Daylons and Jonahs. I began following Jonah's journey about a year ago and feel that I need to spread the word about EB anyway that I can. I am running in a 5K race the end of October and I'm ruuning it for you Bella and all the other kids with EB. Your daddy sent me a beautiful picture of you to put on my shirt so I can share you with everyone. I am so proud of you for going 12hrs on your pressure support trial today. Way to go!!!! Keep up the good work Bella. Lots of prayers coming your way!

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  42. Hello Bella!
    Just wanted to know you are truly an inspiration. We continue to pray for you! Keep up the good work!
    Jeff, Heather and Henry

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  43. Hey, just peeking in to say "Hi". Bella, it was nice to see you sitting up. I don't have much to say tonight, I have a headache. So, I'm going to join you in slumber, and I'll stop by tomorrow. Carla

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  44. Sweet sweet Bella,
    We are still here and will always be until the day you are posting this blog yourself. We love you and will never give up on you no matter how much time you need to heal completely.
    You have inspired so many people with your strength and courage. Your daddy, mommy and sister love you so much and fight for you so diligently as are we. I feel very honored to be able to call myself part of Team BELLA, Tripp, Daylon, Jonah, Elle, Payton and all other EB Babes in the world even if I have never had the blessings of meeting any of you in person, I fell like I have known you all forever.

    Tim, you and Angelique are amazing people with two beautiful daughters and your writing is amazing and very passionate and I stay up late every night just to check on Bella. May God Bless you all!

    Praying for you always!!!!

    Love,
    Susan H. Troy, AL

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  45. Bella, you put the warmth in our California sun!

    Leetle Bella, I pray that you are having ANGEL DREAMS & SUNNY warm fun days as you lie there and daddy is reading to you. I pray that you soon are running and playing with your big sister Ali and holding mommy's hand walking through the park and down to the beach here in California where you live. The warm sunshine is missing you and is NOT as warm without you and your BRIGHT-EYED smile giving it to us.
    So hurry up LEETLE BELLA and come home soon! The warm sun needs you.
    Love,
    Denise

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  46. Lisa (sum1lvsu@yahoo.com)October 12, 2010 at 9:26 PM

    I am saddened to hear the news, yet happy that little Bella no longer suffers. We are adults and we don't know what pain that little child was having. Nevermind the fact that the little baby never had sleep. Procedure after procedure gave her no energy. Diligently, the doctor's kept trying, the parents still held on. True faith and devotion. God will bless all of you for the past few months of 'just being there and serving God's child.' It has to seem like the world has ended, but there is a light at the end - keep your faith, keep your strength in tact for those that follow you. There are going to be more "Bella's" and if you can turn this around and be the support for the parents of those children. God will guide you and calm your hearts that must feel like they've just exploded - None of us can say we know how you feel because we did not walk in your shoes one day. Me, I can only say I imagine how hurtful and confusing it must be as I look at my healthy child, and if I could share my kid with you and it actually lessen your sorrow I would. But I know that no other child would mean as much as one's OWN child. Just be thankful that Bella is not here on this place we call earth, to suffer through all those tests, the constant necessary pampering and hovering over her and she not being able to do the normal things expected at her age. She knows you were there, she knows! You have nothing to prove but to one another. Show your care and concern by helping others; it will help grow you and your family stronger during this point in your lives. God Bless you all. You are remarkably inspirational and your life this past year should have others really thinking and feeling gratitude for having normal children with a normal chance at life unlike anything that Bella endured. It's over - It's over - so much pain, so much suffering, it's over! Little Bella, Little Bella God took you and you are safe and free and looking down and wishing your parents did not cry. They will Little Bella, they will. The tears will turn to smiles of remembrance, as dad continues to write and they devote their time to others that need to hear their story and to see the strength they possess. Don't give up the writing Tim, it will help pull your family through the sorrow. There were beautiful days to share.

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