Tuesday, September 28, 2010

September 28: Day +88



Heaveno!

Well, the avastin is IN! Let me tell you how we got there...

We were still undecided this morning, even while walking to the hospital. Angelique took the day off so we could meet with the docs together and so she could be there to support Bella as well. We were waiting for some sort of signal from God (apart from the two signs we already got) saying today is the day... or not.

Well, when we walked into Bella's room, we got the sign.

It was like Groundhog Day... again.

Blood pressure was in the toilet... again.

I know.

It hit us like a ton of bricks. This has happened before, where I walk in after thinking we cracked the blood pressure code the day before, only to walk in to pressures in the toilet, and Bella having received fluid to bump up her BP through increased fluid volume.

Today was just like one of those days. Pressers were up, not down from when we left, fluid was up, not down, and pressures were still alarming.

In one sense, it really put a chink into my faith armor, but in another, it made the decision to use the drug very easy! One of the things I realized on the way to the hospital this morning was that after Thursday's miracle turnaround, I made the mistake of thinking that we wouldn't have any more setbacks, and that we wouldn't have to make any more tough decisions.

Tee hee! Silly, daddy.

So, we got to work doing a good old-fashioned, two-parent, full-body dressing change, just like old times! It was nice to really clean and preen and fuss over just about every inch of Bella. Believe it or not, I got to a point before we left home where I actually enjoyed dressing changes. Bella was peaceful during them; she was lobotomized by Baby Einstein and Mickey Mouse Clubhouse on the flat screen in mommy and daddy's room. Mommy would give Bella a bath while daddy would cut and prepare all her dressings. Then, we would get to work. It was like our little special time where we could touch, caress, and care for Bella. My favorite thing was massaging Bella with cetaphil. Normally, you can't rub her skin at all, but with all that lubrication, I could rub and massage her skin and allow her to FEEL sensations she otherwise never felt since much of her skin remained wrapped under dressings 24/7.


Arm wrestling Champion... BELLA!

Anyhow, it was nice to have the three of us reunited in this ritual again. We played Mickey Mouse Clubhouse on the DVD player so Bella could hear it while we washed and changed her bandages. At one point, she was actually sticking her foot out for mommy to massage it! Super cute.


Bella sticks her foot out, as if to say, "Oh yeah, mommy, right there!"

So, back to the bevacizumab (avastin). We spent all last night researching it, and we found that most of the side effects are from repeated use for elderly patients with cancer while also on chemotherapy. So, we decided that the single dose would not present a big enough risk. We also met with both Dr. Somani and Lund this afternoon and they agreed. They both felt it was a safe option. At the end of the conversation, there wasn't this "Alright, let's do it! Yee-ha!" attitude. The room was pretty somber. There was a realization that it is quite possible that it was pure coincidence that the one other patient recovered due to this drug. There was also the realization that this is that "out-of-the-box" option we've been searching for. What happens if it doesn't work?

However, I am reminded, yet again, of Daylon, Bella's boyfriend. I am reminded of how "out of ideas" they were with him, and how he has since not only left the ICU, but he's been discharged from the hospital!

I am reminded that God sets out cups of water for us in this marathon of life at more than one water table along the way.

I am reminded that you can drive all the way across the country at night, never seeing more than 200 feet in front of you at any given time.


One dose is all it takes...

I am reminded that God alone is in charge of this situation, and while we did our best due diligence, and while we infused the drug over 90 minutes, I laid into my guitar for Bella till my fingers were pins and needles. "I played my best for him," ran through my mind from "Little Drummer Boy" as I offered up my most sincere and heartfelt musical prayer. Would any of it be enough? Only God knows. We are in the process business, and God is in the results business. So we did every thing we knew to do to make this as safe and successful as possible, and at the end of the day, we literally left knowing that by tomorrow the drug will have most likely worked or not worked. It is now out of our hands.


Daddy rockin' the Rally Cap for Bella while offering musical support and prayer...

Again, this returns to the basic conundrum of this journey: you make decisions as if you are in control of the outcome, all the while knowing (but not always remembering) that you are not in control at all.

So, we did what we could, and by offering up your prayers, intentions, energy, thoughts, wishes, etc., you did what you could. WE ALL DID WHAT WE COULD to make today a success, and now it is up to God. I know I'll sleep (maybe not the entire night) due to the exhaustion I feel, but I just have this intense urge to bargain with God over Bella! I want to promise all kinds of things in return if he just make this drug work. I want to promise that I'll never bargain again, just like I promised last time. :) I want to lobby and advocate for Bella to God like I do to the docs, hoping my twin talent of appealing to logic and emotion will be enough to sway him into saving our daughter. Once again, I am giving my power to the drug, not God.


Bella has the most amazing big sister ever...

When we left tonight, Bella's pressures were still soft, and we tweaked her sedation a little, rolling the precedex back a little since it is the only sedation on a drip that we could easily titrate, and based on Bella's response, adjust as needed. Bella just seemed really tired, and really sedated all day. I think the weekend of withdrawals into yesterday really wore her out.

We ended up greater than -100 yesterday in fluid ins and outs, but today we'll end up just over +100. But, combined with her insensible losses, a net zero for two days minus a couple hundred mLs a day is a pace we sill be happy maintaining if we can.

Thank you for your most honest and heartfelt prayers and energy. In this present moment, please focus on one thing:

Bella's capillary leak is completely healed by tomorrow, as are her kidneys, and she begins to pee tomorrow.

Please hold this thought and none other for the next 24 hours. As a result of this true statement, the house of cards will fall and Bella's complications from BMT will all but go away. Specifically, Bella's blood pressure will return to normal, and she will begin to peeeeee!!!!
Thanks for holding this space for the next day. I am a firm believer in the energy you send out. There are enough of you, and your intensity with which you offer your love is second to none.


Bella's Fabulous Fall Socks of the Day!

Angelique and I have a nickname for us as a couple; Team Heam. Long story, but our motto/slogan is "Together, there's NOTHING we can't do!"

Well, I feel the same way about our international Team Bella. Together, there is nothing we can't do!

P.S. Angelique and I like the Bella tour idea... in a few years... So keep that vision coming as well!

P.P.S. 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.

God night.

64 comments:

  1. Dear sweet Bella,

    I'm praying for you even now that your capillary leak will be healed and that your kidneys will start working. God hears our prayers and He loves you and your family. Please know that you are loved ALL over the world and we are all praying for you!!

    Love,
    Laura (for Team Anderson in TX)

    ReplyDelete
  2. Doing the peeeeee dance all the way from Spain!

    ReplyDelete
  3. Praying specifically! Loving you sweet Bella! Praying for your complete healing!

    ReplyDelete
  4. I am praying for you Bella!
    Love in Christ, Mary Chinn

    ReplyDelete
  5. I am a teacher by trade, but into tonight and while I am watching over my students tomorrow, I will be thinking of nothing except Bella and some pee. No lie. I am envisioning this for her, and for y'all, and for the world of EB.
    Still praying in Central Arkansas...Go Hogs!

    ReplyDelete
  6. heaveno y'all!

    praying for you sweet bella. prayers of gratitude for your parents - your personal warriors - and your brave sister are being lifted up too! keep enjoying those foot massages!

    looking forward to the day we'll all get to meet in your aunt mary's backyard and you will tell stories of..."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

    ReplyDelete
  7. Tim and Ang,
    We're all here for you and for Bella and even when we might not know what to say, know that we haven't left you, you haven't left our thoughts and prayers, and God is there whether we acknowledge Him or not in our moments of weakness or strength. God is in control and will help you all navigate this winding path. No matter the situations we all face there are bound to be highs and lows. The lucky ones realize that God is not absent when the path dips low, that is when He is carrying us through and we can be most assured that He has our back. Helping us through the mire until we again reach the sunlight. The sunlight is always there, but if we never saw the darkness we wouldn't know how bright or how blessed we really are. Bella is blessed and we have all been blessed by witnessing how God is and has so clearly used her and your love to shine His love throughout the world. We may never understand why things happen this way or that, why Bella's blood pressure is up one day and down then next, but ultimately, we can rest assured that WE ARE LOVED. We rest in His arms and tonight my prayer is that God carries sweet Bella and the two of you for awhile. Rest easy. Trust that He will not drop you and trust in His plan and purpose.

    Sweet Bella- rest easy baby girl. Know your daddy, mommy and sister love you sooooo much! Looking forward to seeing your smiling eyes and hearing as your daddy describes the first time he hears you laugh after this time in your young life has past. Hang in there princess! Love you

    ReplyDelete
  8. Big honking "please pee" dance being done here in Chicago. The baby my orientee and I are taking care of here in the NICU tonight could use the "pee dance" as well tonight!

    ReplyDelete
  9. Bella...you've gotta get outta there. Isn't it embarrassing to have your daddy wear your PINK hat?
    Praying this is the trick.
    Love from....HOME.

    ReplyDelete
  10. From a little farm out in Nebraska...

    In the strong name of our Lord and Savior Jesus Christ, name above all names:

    Bella, may you be completely and totally healed of your capillary leak. May your kidneys function perfectly.

    May our God and Father display His power in your life.... NOW!!!!

    For there is NO OTHER NAME by which you must be saved!

    He is able.

    Loving you and your sweet family from afar...
    Kim

    ReplyDelete
  11. Oh sweet Bella. My heart sank hearing your numbers weren't good. But before I even read what your daddy wrote I knew it made the decision easy to use the new drug. And maybe that's all you need. I hope it's a good sign that while I read your daddy's post I have had to pee. I'm pretty sure it is :)

    Tonight I'll pray, think positive thoughts, send energy balls (something crazy I thought I could do when I was in high school)...you will be on my mind as I fall asleep tonight. If I'm lucky maybe we'll get to visit in my dreams.

    Sleep tight Bella and let that medicine help work a miracle.

    ReplyDelete
  12. Tim and Angelique, I was glad to hear you decided to try Avastin today. With positive results for the other patient (and a drop in Bella's blood pressure again), how could you not? I pray that it makes a positive difference for her tomorrow. Heartfelt prayers from all of us here.

    Bonnie in OH

    ReplyDelete
  13. Dearest Bella,

    You are one of the STRONGEST people I know. I am praying that this new medicine fixes your capillary and kidneys and you show us some peeeee! You are awesome Bella. Stay strong!

    Lots of Love,
    Amber, Craig, Malorie(2 1/2), and Liam(8 mos.)
    The McLaughlin Family
    Moreno Valley,CA

    ReplyDelete
  14. Bellagirl;
    over here in the land of cheese and cows (good ol wisconsin) we're doing the please pee pee dance. I"m wishing you the best of luck to get those kidneys going!
    I"m sorry to hear you've had some tanking numbers today but it seems you're still holding strong, like the strong girl you are!
    I love the socks! Again, very jealous they don't come in my size.
    I must admit, I had a very frustrating night at work and the first thing I did when I came home was check this blog to see how you were doing! We also adore Mickey Mouse club house in OUR house. Our favorite thing is doing the hot dog dance!!!! My 18 month old gets up and claps and does his rendition of "hot dog" which kinda sounds like "rot rog!" (scooby doo maybe?"
    you keep your chin up Bellagirl, you'll pull through. Everything in its own time.

    much love from Wisconsin

    ReplyDelete
  15. Praying in Colorado. May you feel the love and prayers that surround you tonight.

    ReplyDelete
  16. Tim, Angelique, Ali and Bella
    We are thinking of you and praying for you during this time. Our oldest son and I were talking about a bible verse last night which reminded me of your story and of you Tim and Angelique. I shared your story with him and he read a few of your posts and immediately said, "Mom, I just know she's going to be ok. God will take care of ALL of them." Please know that your friends at HCC have not forgotten you and are praying for you and for Bella's kidney's to start functioning and produce some pee! Sleep well.

    Blessings,
    Nancy and family from HCC

    ReplyDelete
  17. Can't wait til tomorrow...please, please, let it work...

    Love and hugs
    from an island in the mediterranean to you, dear Bella

    ReplyDelete
  18. Your specific requests are dialed into to our prayers tonight, and will be until the victory comes!
    Praying for you sweet Bella Doll...I'm so grateful for you...you hold a special place in my heart. Dear Lord, please protect Bella & her family, through tonight, tomorrow and furthermore. God's love is perfect :)
    xoxo
    nicole

    ReplyDelete
  19. Praying, sweet Bella, that the new drug does the trick and that you feel better even now! In the Name of our Lord, Jesus Christ! Blessings to your family.

    ReplyDelete
  20. Bella, praying for the medicine to work as needed on your body, and for your kidneys to start producing urine. Your Dad, Mom and nurses all want to be changing lots of pee-pee diapers ASAP. Judy T. (Leah's Grandma), Bowie, MD

    ReplyDelete
  21. Ok. This is all I will think about all day.

    Bella's capillary leak is completely healed by tomorrow, as are her kidneys, and she begins to pee tomorrow.
    Bella's capillary leak is completely healed by tomorrow, as are her kidneys, and she begins to pee tomorrow.
    Bella's capillary leak is completely healed by tomorrow, as are her kidneys, and she begins to pee tomorrow.
    Bella's capillary leak is completely healed by tomorrow, as are her kidneys, and she begins to pee tomorrow.
    love Lolly

    ReplyDelete
  22. While we sleep, there will be people around the world, who are awake, and keep the constant prayers going. It's like, rest and sleep, someone is visiting with God with your prayer requests--at all times.
    Sending lots of love and prayers to you all.
    Nanny Sheila

    ReplyDelete
  23. I loved seeing the picture of you playing guitar for Bella today. Yesterday I was going back and looking at the videos you have posted and was thinking to myself I would love to see Tim playing his guitar for Bella again in a recent picture and low and behold today my thought appeared on the screen...we must be on the same wavelength...I hope this medicine works and Bella keep strong and get better...baby steps are fine.

    Love and support from Madrid

    Jeni

    ReplyDelete
  24. I'm still here from good old Belvidere, Illinois and still sending up many thoughts and prayers for you Bellababy!!!! As I look at my own kids it stops me in my tracks the war you are fighting....but you are one tough cookie Bella...with god's help you can do it and we can keep reminding him!

    ReplyDelete
  25. Sending lots of love and prayers to you Bella ... to all.

    Big Kiss

    Sandra, Lisbon, Portugal

    ReplyDelete
  26. Praying for pee all the way over here in Sydney, Australia xxxxx

    ReplyDelete
  27. Dear Sweet Bella,

    I'm looking into your fabulous socks of the day... and dreaming... of the day when you and Ali are playing in the leaves... with caramel apples stuck to your hands...being pulled by horses on a hayride with Ali, Mommy and Daddy playing his guitar wearing your pink hat.

    'Be still and know that I am God'...and then PEEEEE!!

    Love,
    Aunt Mary

    ReplyDelete
  28. Praying that the drug works!!!!

    ReplyDelete
  29. All of Bella's vessels are seaworthy...NO LEAKS HERE! AND...she is a peepee MACHINE!! Hope Mom and Dad have LOTS of diapers on hand...love and hugs to all! And Blessings to Bella, beautiful baby girl, who has already been healed!

    ReplyDelete
  30. Bella, I am envisioning a world of heeling and only good things for you! I will wait on baited breath for tomorrow update.

    Lots of love
    Tamar in Boston

    ReplyDelete
  31. Praying, praying, praying that today is a BRAND NEW DAY for you, Bella!

    I printed out the butterflies for my little guys and hopefully we'll be able to write your notes today so we can mail them!

    Much Love!
    -Susan in Pittsburgh

    ReplyDelete
  32. capillary leak BE GONE and pee come back! Like a chant, right? =) Praying hard for the above things.

    ReplyDelete
  33. Good morning, sweet Bella and family...

    I was on my way to work early this morning, before the sun was officially up (lots of papers needing to be graded). While I was driving and looking at the morning sky - still somewhat dark but with hints of light beginning behind the clouds - I was talking to God about my day. I do that a lot in the car...talk out loud to God. Please know that foremost in my conversation was Miss Bella. The same God that can turn night into day has the power bring Bella through this rough place she's been in for a while. Thank you for the specific request so Team Bella can go to work storming the gates of Heaven on her behalf.

    Blessings for a good day!

    With affection and praying for healing (and those capillaries and pee),

    Susan
    A friend in NC

    ReplyDelete
  34. Sweet Bella,
    I'm praying specifically that God uses this drug for one more of His miracles in your life! Praying that your blood pressure is up and remains there and that your kidneys start working so your body can rid itself of all the excess fluids.

    I'm praying for your parents and sister too, these are exciting and yet scary days - I know God will hold them close, and that they feel the Holy Spirit holding them as they watch your miracle take place.

    Loving you and praying for you in Waterford, MI

    ReplyDelete
  35. leak be gone and pee come back...leak be gone and pee come back....leak be gone and pee come back. I pray for this.
    (thanks Lexie)
    I am thinking of you all every minute.

    Love, Terri

    ReplyDelete
  36. Still praying for your sweet family....

    Big Hugs....

    ReplyDelete
  37. Dearest Bella -

    I know you feel so worn out and your journey has been a terribly long trek but hang in there. Everything known to man has been and is being done for you and my prayer today is spacifically for God to give you the strength to work with this drug.

    Mom and Dad -
    I pray for you to continue to find peace in the Lords love and feel his arms around you and big sister. Carry on!

    Elizabeth
    Amarillo, Texas

    ReplyDelete
  38. I've never posted before, but wanted to take a minute to do so now. I am Amanda, an Air Force wife in Southern Maryland/DC-area. Sending Bella and your entire family strength and good thoughts. I read every update! Come on, Bella... let's go! :)

    ReplyDelete
  39. come on sweet bella you can do this..praying for you and little tripp...

    ReplyDelete
  40. Heaveno Bella! Thinking of you daily even though I haven't commented in a day or two. It has been so rainy here in Germany for the whole month of September. Finally today there are lovely blue skies.

    *Please God hear our prayers and let it "rain" for Bella.*

    Wishing you well and lots of love,
    Laura Valetutto Bergisch Gladbach, Germany

    ReplyDelete
  41. Jack and I did the Peeeeee Dance this morning for Bella! And I just realized that Bella was born only 1 day before Jack! I think Daylon might have some competition if you ever visit Kansas! :-)

    ReplyDelete
  42. Praying and thinking in you all day. Wishing with all my heart that the capillary leak syndrome will be gone by tomorrow, and that your renal function will improve dramatically.

    Carla, from Portugal

    ReplyDelete
  43. Praying from Utah - go Bella go - you can do it!!

    ReplyDelete
  44. PEe Bella pee!! God is the ultimate physician and I believe He will heal you. "Whatever you ask in my name, I will do." In the name of the Lord Jesus Christ, please heal princess Bella.
    God bless you all!

    ReplyDelete
  45. Good Morning Bella- Sweet baby girl, my prayers are focused, my heart and will are strong, my FAITH is here and I call on you Lord. I read your Daddy post last night while sitting in silence, by myself outside. I wanted to be in a place of peace so our Lord and I could have a serious talking to one another. I want you to know that their are so many people dedicated to you and your family. My prayers last night, throughout the night and today are very specific, just as your Daddy asked of us. Praying for your capillary leak to be gone and of course for PEE!!!! Lord, thank you for this beautiful morning, we ask for Bella's body to accept the new medicine Avastin. Lord we ask you with our opens hearts to allow this drug to fill Bella's body and stop her capillary leak. We ask that her kidneys get jump started to get her to pee. Lord we trust in you and thank you for being with us all. We ask that you carry the Ringgold's in your loving arms as you always do. Lord you are awesome! Amen.

    We love you Bella girl and are looking forward to you coming home!!! Stay strong Baby Girl!

    xxoo,
    The Davidson's

    P.S.: I can't believe how much ALi has changed, she looks like she has just grown like a little weed. She always is looking fabulous, not much has changed (-: Miss you too Ali! Brae can't wait till you and Bella come home to share his snacks!

    ReplyDelete
  46. I prayed for Little Sweetie multiple times through out the day (as usual); I was soooo focused on her in my prayers, more so even than normal. I found myself pleading with God to please help heal her and to please let this new medicine work. I wish/intend/pray/hope that this works and she can finally pee and her pressures remain stable. We are dying to see her. We want to be able to give her a hug. We want to be able to kiss her adorable cheeks. We want for her, Ali, and Evie to be able to play together. We miss our time together with you guys too! Everyone I know that I can ask is holding Bella close with prayers or intentions.
    GO BELLA GO!!!
    Love you guys tons~
    The Vanderbooms

    ReplyDelete
  47. Prayers from L.A. Bella WILL be fully healed. Sending fluid reducing thoughts and intentions Bella's way. Lots of love...

    ReplyDelete
  48. Rylee took a butterfly cut out to school today. She wants everyone to sign it for your wall. She wants to tell her whole 3rd grade class about you. That will give you 32 more prayers tonight for healing and to PEE!!! You don't wear those Fuzzi Bunz for nothin' girlfriend!

    Love from Louisville,

    Leslie

    ReplyDelete
  49. Dear Sweet Bella,
    We are focusing our prayers on your blood pressure normalizing and kidney fuction improving...it reminds me of a movie or tv quote on peeing; "RELEASE THE HOUNDS!!!" I can't remember where that is from (Seinfeld maybe?), but may your hounds be relesased! :)
    All our love and many blessings,
    The Gleason's

    ReplyDelete
  50. just coming back to add that we just made butterflies for Bella & my boys had SO MUCH FUN coloring them, "For Anabella! Mommy, she needs so many butterflies in the hostibowl."

    We had her picture up on the laptop screen while we were doing it & prayed for her after we finished. It was so sweet.

    There isn't much a 3 year old, 2 year old, & 2 month old can do for someone in the hospital, but they did what they could! Tomorrow I think we will do it again & I will video it!

    ReplyDelete
  51. Dear Bella,
    Your Daddy is hilarious! I love his pink rally cap! What a lucky girl you are to have such special mommy and daddy and big sister, they all seem to cherish every moment with you. I love that you enjoyed your massage and what a great moment for you mommy and daddy as well. Touch is so important in healing and so is music, and wow I am sure that you just loved your daddy singing to you. I love listening to people play the guitar and sing, how lucky you are to even have special songs just for you from your dad! Big prayers focusing on the capillary leak to be cured with that new medicine!!!!! Stay strong little one! PS. I was looking at some older pictures of you when you were at home and you have the most beautiful blue eyes.
    Jessie Atlanta GA

    ReplyDelete
  52. Lynne, Bob, Jack and BenSeptember 29, 2010 at 11:58 AM

    Holding and intending that Bella's capillary leak is completely healed by tomorrow, as are her kidneys, and she begins to pee tomorrow. Still sending all my good kidney karma directly Bella's way.

    ReplyDelete
  53. I know your daddy posts late at night but I keep checking...just in case. I've been thinking about you lots today Bella...sending lots of positive thoughts your way. I imagine I will stay up tonight till I know how your day went. I pray pray PRAY it was a good day.

    Love from Texas.

    ReplyDelete
  54. Dear Bella,
    I prayed all day (like daddy asked us too) for your leaky caps to be better and for you to pee!

    I loved that mommy & daddy got to pamper you yesterday!

    Just wait till you are older, like a teenager, and you see all the silly things daddy, mommy and Ali did. I hope you will just laugh like crazy and say "What a bunch of nuts my family is"!

    You WILL look back and say this for sure "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

    Tina
    Praying nonstop in NJ

    ReplyDelete
  55. Hi Ringgolds!
    I hope the day ha been a fantastic one for all of you, especially Bella.
    I just wanted to point out that today, 9/29, is the feast of the Archangels Michael, Gabriel, and Raphael. Very fitting since Michael's name is the "Cry of Victory" in Heaven. Gabriel's name means "Strength of God," and Raphael means "Divine Healer."
    I know these angels are watching over Bella today protecting and healing her!
    A family in Tennessee

    ReplyDelete
  56. Dear Bella,

    I'm so glad there's a special medicine to help you recover. I read your daddy's update this morning, but wanted to check back hoping he's reported a miracle. I spend so much time checking in on you and wishing you the best. I think about how great it would be if there was a great big party for you when you're all better and EVERYONE from www.teambella would be able to celebrate with you.

    Anxious to get an update.

    JSP in CT

    ReplyDelete
  57. Dear little Bella,

    Our prayers are constant and sincere for you and for your amazing family. I've never prayed for pee before, but, why not? I will share your story once again with my church choir tonight. Please know that you will be included in lots of prayers in Napa, Ca.

    ReplyDelete
  58. Bella: Another prayer coming your way - may the strength of God, the medicine, the health care professionals, and your family all come together to heal you.

    ReplyDelete
  59. We sang a song in church on Sunday, "strength will rise as we wait on the LORD." It reminded me of your journey.
    Love and prayers.
    Lynn
    North Carolina

    ReplyDelete
  60. I rarely if ever comment on blogs but feel compelled to comment on this one. I get up 15 minutes early every day so I can check in on Bella. I want some peace and quiet so I can reflect and pray for her and for you. Some time ago, I felt I had lost God...now I'm finding my way back thanks to the miracle that is Bella and the faith you show everyday.

    Fight, dear sweet Bella, fight!!

    Believing in complete healing,
    Barb
    NE Ohio

    ReplyDelete
  61. Sweet little Bella,
    You and your family are in my thoughts and prayers. I'll be specifically praying for this drug to do it's work and for you to start peeing!
    Heather in Colorado

    ReplyDelete
  62. I'm hoping for lots and lots of pee pee!! And for the wonder drug to work it's magic =). I'll be checking in tomorrow to see how it goes. Lots of wet thoughts until then-
    Emily
    Ft Lauderdale, FL

    ReplyDelete
  63. Bella, You have been on my mind and in my heart all day. My comments have been short lately because my little Clara has been sick and we have had our share in the ER and at the dr. We even had an ambulance ride. (really not fun) So that all got me thinking about you and your mommy, daddy and sister. About how hard it is when someone you love with everything you are is sick. I hope you look back one day and realize how much they all love you and would do anything for you. Remember these things...especially when you are a teen and dad says no you cant take the car tonight. ;) There is so much love coming at you from all over the world...can you feel it Bella? Wrap that warmth around yourself...soak it in. XOXOXOX

    Denise WI

    ReplyDelete
  64. Bella, hopefully a cuddly gift sent with love (and a little humor!!) arrived for you today. Just one more friend to be there for you no matter what. To remind you that even when "Dr. Gloom" his at his worst, it comes from a good place.

    Hope today went well and that you've been filling those diapers of yours with pee!

    Jessica
    Chicago, IL
    NICU nurse

    ReplyDelete