Wednesday, September 29, 2010

September 29: Day +89


It began with a little hug while off the circuit...


Which turned into this moment...



and ended up here... Upright. First time since July 4th.

Heaveno!

I won't string it along... I know this is the first thing you want to know...

IT WORKED!

GOD BE PRAISED!


A reader sent us this pic from their garden this summer...

Bella's blood pressure is ROCKING, and as of 9pm tonight, she is OFF PHENYLEPHRINE and her vasopressin is at .0003, the tiniest dose you can be on. We are a little fluid up for the day, but they have been pulling fluid all evening, and Bella's BP is GOING STRONG.

We don't expect pee since she is on continuous dialysis. Because it is always running, it doesn't give the kidneys the chance to kick into gear; basically, they are not needed. So, no pee yet, but that is okay. First things first. We really really REALLY wanted that blood pressure locked tight!

Folks, we may have just discovered "Fix-a-flat" for leaky vessels!

Having said all the above, part of me has not yet jumped for joy, because at one point today, Bella's blood pressure dropped way down during a nap, but came back and is rocking strong. We had good blood pressure over the weekend, then it went away yesterday, so I confess that I am afraid to get my hopes up too high. I am also just so phenomenally exhausted by this roller coaster of faith, strength, and endurance, that I just can't get too high or low in the face of anything along the way, otherwise, I would have worn myself out by now.

Angelique and I were talking on the way to pick up Ali tonight about the fact that we haven't cried tears of joy like many of you have. I know that I have cried only maybe once or twice since I came here. We confessed this to each other and talked about the fact that we just have to dampen our emotions a little in order to not get to up or down, so that we can keep moving, day in and day out. It is our responsibility to our family to "keep it together" through it all, so we take good care of ourselves and practice some serious emotional regulation and discipline, so that we remain strong for each other, and for our kids. So, our happy moments out exploring MN and measured, and our sadness, fear, frustration is also measured.

I want to make a point about the difference between regulation and repression. One is healthy and one is not. It is one thing to acknowledge feelings, it is another not to. On the other side of the coin, it is also one thing to acknowledge feelings, and another letting them dictate your actions. Feelings aren't reasons. They are just transient, ephemeral energy moving in and out of existence. So, we do not act on our feelings, and we don't let our feelings run the show. We pay attention to them, listen to them, process them, experience them, then release them. Stale air and water do not possess the same freshness as moving air and water. Feelings are the same way. So, we let them flow in, and we let them flow out.

Remember the phrase "This too shall pass?" The biggest mistake is only applying it when faced with a bad feeling. The second biggest mistake is thinking, "I hope things stay like this forever" when things are good. This is not pessimism, it is very much within the very basic laws of nature. Emotions are Energy in Motion ( E - Motion... I know you're smiling, mom, I got that from you!:) ) All energy exists in motion, and it can never be created or destroyed. This leaves the universe and everything in it in a state of "permanent impermanence." Practicing this impermanence, well THAT is what makes life worth getting up and playing, day in and day out.

Okay, okay, back to matters at hand. Sorry, but even we wonder how we are not only still standing at this point, but generating so powerfully in the face of everything our family has endured. Figured I would try to articulate a little of the "how," and if it makes sense to you, feel free to try it out in your own games of life! If not, just read on... I'll get back to Bella now! :)

When I walked through the door this morning, it was like the moment of truth. All the prayers were going to be either answered or not when I looked at that monitor and read Bella's blood pressure.

Well, no sooner than I open the door, and our nurse looks at me with DAGGERS in her eyes, and says, "Prisma is crashing. Like right now."

"Okay," I think to myself. I still haven't seen the monitor yet.

I turn into the room and look up at the monitor...

100's over 80's.

"Have you rinsed back yet?" I ask? When we switch the circuit, there is a large volume of blood in the tubes and filter... essentially "in the circuit." So, when we know we are changing out a circuit, we give back the blood in the circuit to help with Bella's blood pressure, hence "rinse back." When this happens, it causes Bella's blood pressure to surge for a little while because we have just crammed an extra volume of blood back into her internal circuit, thus increasing the pressure within it.

"No."

"That's all I needed to know." I respond, smiling at the monitor.

It worked.

I should really say THEY worked. The drug, combined with your avalanche of round the clock prayers, intentions, thoughts, wishes... ENERGY. Isn't it inspiring to see the two working in harmony? They DON'T have to be mutually exclusive!

We used to debate when we would have generous blood pressure, should we wean pressers or pull fluid? Well, we're pretty much out of pressers, so there isn't any debate anymore! Now the debate will be how much to test the waters to see how effective this drug was. Bella had generous pressures for 5 straight days... before we gave the drug... but we could only pull fluid at a tiny amount, and the day after we ended up negative 100+ for the day, her pressure tanked. What is the test to determine if this new drug worked at all, or any better than the sedation wean (and your prayers) over the past week? We sincerely want to know if it is the drug, because if it is, man, that DOUBLES the number of successful times this drug has been used in the pediatric BMT population, and may well open the door to more widespread use at the U of M... essentially the birthplace of BMT!

What service we would be if that was the case. What more can you ever ask for than to be of service to your fellow man and womenkind? Is there a better cause? Is there a more fundamental point to it all?

Not to me.

I have written about the following equation before:

E (Events in life) + R (your Response) = O (the Outcome)

E: Bella is born with EB
+
R: Live life to the fullest, and, in the process of trying to save our daughter's future from one of pain, suffering and an early death, she inspires thousands across the globe, is part of a study to find a cure for an incurable disease, and potentially unlocks a new treatment for a potentially fatal side effect in bone marrow transplantation that previously has not had an effective treatment for it.
=
O: Leave inspiration and healing in our wake. Go to sleep at night with no regrets, and a spirit of genuine gratitude.

Once you realize you have influence over any outcome you are facing, you are no longer a victim. No are not in control, either. That is the lesson I learned from Bella's birth. However, you are always the author of your response to anything life throws at you.

What story will you write?

Here's the one we're writing: "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.


Ali playing in the bounce house at RMH after dinner. If you are over the age of 10, don't play in a bounce house after dinner. Not a good idea. Just sayin'...


We received this in the mail today. Have you ever seen anything funnier?


We were treated to an absolute FEAST at RMH tonight! It was AMAZING! Thanks to all who helped make it happen!

54 comments:

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

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  2. GOD BE PRAISED!!

    Sweet Bella, am SO glad that the "fix-a-flat" worked and that the fluid is coming off. Will continue to pray for complete healing and for peeing to start!!

    Prayers and love from TX!
    Laura (for Team A)

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  3. I have been praying and thinking about Bella ALL day today! I have been anticipating this post even more than usual if that is possible! I am soooo happy for the good news today! I loved the pictures of her sitting up and getting Daddy cuddles! Bella and your family are my inspitation! I love how deep your posts are and I thank you for not only sharing your Bella with me, but for giving me things to think about and apply to my own life! Your just awesome! Go Bella, GO!!!! I hope you all have sweet dreams tonight and awake to another good day tomorrow!

    With love,
    Kristi in Castle Rock, CO

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  4. I may have broken the refresh button tonight.
    go team, Bella!

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  5. PRAISE GOD! He hears our prayers and is faithful!
    Bella, you are loved and being prayed for!
    Awesome God!
    I will keep praying for you precious girl!
    love, Mary Chinn

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  6. Bella, today my heart skipped a beat to see you sit up with your daddy and look at him with your tender eyes! You are such a miracle! God is using you so much, and He continues to hold you in the palm of your hand. Keep increasing that faith!

    Praying without ceasing, your prayer warriors in Southern California--Tiff, Joe, Jeremy (4 1/2), and Rachel (19 months).

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  7. She looks like a little Buddha. I hope there is a way to get rid of all the fluids asap. Please do keep on fighting for your life and for your family, Bella!

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  8. I am right there with Sara, I was in denial with the refresh button tonight. I must have clicked 'refresh' one hundred times! Let.me.tell.you, when 'refresh' decided to work, WOW wee, my body had waves of chills & tears of joy when tonight's first picture posted (thanks to refresh..haha). GLORY BE TO GOD.
    My heart melted when I saw Bella in your arms. What a feeling!
    Bella, you are remarkable...may the Lord continue to strengthen you!
    I will keep on praying!!
    xoxo,
    nicole

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  9. Sweet, sweet Bella! I have been thinking about you and praying for you ALL day! You truly are a precious gift from God! What a sweet angel you are!!! Mom and Dad... Bella couldnt have ask for better parents! Your strength and bravery are truly an inspiration! May God continue to watch over you and your family and to heal little Bella!!!

    With love,
    Sarah and Isabella (3 months) in Colorado

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  10. Lets try a second time. Been waiting to see what time would post an update. So nice to see Bella in your arms. Then her eyes open. Not sure how awake she was but pray we can see more of this. Keep up the good work Bella and family.

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  11. So great to see Bella sitting up! Still praying for more great things for her! Can't wait for each day's update and the miracle of more good news! God Be Praised!! Love, Mary in Montana

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  12. Jack and Molly's NanaSeptember 29, 2010 at 10:55 PM

    Wow! I'm nearly speechless tonight, and so thankful that you all had such a wonderful day. Those photos of Bella sitting up with you are most exciting to see; can't wait to see her doing it on her own!
    I'm also thankful that the drugs are working for Miss Bella and that they may be a giant step in the treatment for ALL babies with this overwhelming disease. I cannot begin to praise you both for your patience, understanding and faith; you are a testimony to teamwork, and I'm proud to be one of Bella's cheerleaders.

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  13. I, too, am more of the "regulation" type... I'm SO glad after today's post, BUT let's see what happens in the next days...it is sort of a protecion device against big disappointments.

    By the way, I love the TEDDY BEAR!!!!

    Ha ha ha, poor Dr. Gloom, we will all end up liking him, wouldn't he just LOVE that??? ;-)

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  14. WAHOO!! Way to go Bella. I knew you could make that medicine work. Oh honey I'm so happy right now I'm crying tears of joy. I'm still praying that your blood pressure stays strong and we get you out of the PICU. You are so awesome Bella!
    TIM, I love those pictures of you and Bella cuddling. I'm so excited to see her sitting up. Praise God. God is GREAT! Stay strong.

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

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  15. Bella, I'm so glad the medicine is working for you, now just keep your BP numbers in the good range, and get rid of all that extra fluid. The pictures of you in your Dad's arms are so very nice to see, keep improving and soon we will see pictures of you sitting with Dad / Mom in a chair. I'm thanking God for your improvement so far and asking Him to continue to bless you with His healing touch. Remember sweet Bella, you are loved & being prayed for by so many people around the world, and you are teaching all of us, including the doctors, valuable lessons. Praying for you sweet Bella, Judy T. (Leah's Grandma)

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  16. HOORAY BELLA!!!!
    I have been "saving" my study break (reading tonight's post) and dangling it in front of myself like a carrot (I just had this feeling it would be good news) as I read my assignments for tomorrow about none other than hemodialysis!
    I am so happy that this is one more high point on the BMT roller coaster for you Bella; lets hope this is the beginning of a new stable level :-) The pictures of you sitting up are great and I can't wait to see more as you work your way back to the alert, healthy and happy girl that is in there just bursting to get out.
    I am so happy to know at your Daddy's voice reading these words of encouragement are helping you feel better.
    Sending love and prayers for PEE!
    love ashley, zach and edie in yakima, WA

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  17. Yesss! One More victory! I am truly happy! God bless you!

    Please continue to fight, and we will continue praying for you!

    Go Team Bella. Go!

    Sandra Coelho - Portugal!!

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  18. If only she could hear the chanting in the hearts and minds of all these thousands of people all over the world...."Bella! Bella! BELLA!" !!!!!

    I think, today, she did hear them somewhere in her soul!

    Love you, little girl. Your tenacity is bigger than your precious little body, even as full of fluid as it is!

    Forever faithfully yours
    Kirstin Stenberg - San Jose, CA

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  19. This morning we had breakfast with Bella. We put the laptop on the table and Bella's picture sitting up was there, just like if she was really with us. And we pray that erything will fine soon. I love Tim's dialogue with his mom.
    I will read this blog many times to think about all what you wrote about life. Thanks Tim for that.
    Today we prayed at St George's College for Bella's recovery.
    Mariana,UK

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  20. Just loved the pics of you with Bella. Truly adorable!

    I completely understand your caution on interpreting the results. I am also very cautious when life presents me unexpected gifts. It is like a buffer that allows me to prevent bigger disappointments.

    This been said, I don't think that you will be "disappointed". One of the Avastin major side effects is hypertension, which is a good effect in Bella's condition. Let's just hope it also treats her capillary leak syndrome.

    I truly believe God is working on Bella through this drug. So let's just put everything in His hands, and patiently wait. God's time is not our time. What seems an eternity to us is just a brief moment to God.

    All this shall pass and "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."

    Keeping you in our constant prayers,
    Carla, from Portugal

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  21. Words can't describe the joy i feel knowing our Bella has improved...I'm covered in goose bumps!!! The strength your family has shown is amazing and oh so inspiring. Thanks you for sharing this journey with us all, it certainly puts life in perspective.
    Love to you all, and gentle cuddles to our magical baby girl :0)

    Shana
    (Australia)

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  22. Glory to God!!!!! I was thinking about Bella all day yesterday and even dreamed about her last night.
    Bella- in my dream you were a healthy,happy little girl, running around and playing with me. "How good her skin looks after the transplant." was said multiple times. I doubt I'll ever meet you in person, but I wish I could.

    My prayers continue to be with you!

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  23. To God be the glory, great things He has done!!! So excited to see you holding your sweet Bella. She needs your touch, your voice, your hugs and kisses.

    So excited for the fluid to get pulled off and you get your little sweet pea back! Praying for continued strong blood pressures, fluid reduction, pee production and busting outta the PICU!!!!

    How wonderful to get a little peak at her eyes - get ready for more of it!!!!

    Love and prayers from MI,
    Kim M

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  24. The energy moved through me and I bursted into tears of joy for all of you! Praise God is right!!!! You are so amazing bella!!!

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  25. i fell asleep with the computer again last night, and then...what a wonderful way to start the morning....the picture of sweet bella and her daddy in a full on embrace!! god is so good!

    tim, cautiously optimistic is not such a bad thing. it will help you and ang keep moving for sweet bella!

    i will be lifting y'all up in prayer again today! keep the good news coming!

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

    p.s. i am so happy to now have a nicer image of dr. gloom!

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  26. Oh Bella and family,

    I was so anxious to know how you were this morning that I jumped out of bed and to the computer - I am so happy to hear you turned another corner and will continue to pray it works and works and works!

    Keep fighting little one!
    Tamar in Boston

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  27. What a "BEAUTIFUL" sight....Bella in her Daddy's arms!

    Still praying for Bella and your sweet family...

    Hugs

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  28. Oh Miss Bella no matter what the picture of you being cuddled by daddy is just WONDERFUL! I also love you looking at daddy!

    I know you already know this, but your daddy is a pretty smart guy! WIth some awesome ideas and teachers! Your whole famiy is teaching me to try hard to accept life and make the best of everyday - not always easy to do, but so worth it!

    I keep praying and sending positive thoughts that 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."

    Miss Ali you looked liked you were having so much fun in that awesome bounce house!

    Nonstop prayers from NJ
    Tina

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  29. Super Awesome! What a wonderful way to begin the day. I am continuing to pray for Bella and for y'all as you walk with her through this healing.

    HIGH FIVE BELLA! ROCK ON BEAUTY!

    Lauren in Spring TX ( a momma in Spring)

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  30. Good Morning Beautiful Bella: I just love the picture of you with your Daddy. Do you have any idea how much your Mommy and Daddy love you baby girl? You are loved so much, by family, friends and the whole wide world. You are a blessed little girl.
    Keep that spirit alive and kicking. I will continue to pray for you to heal and get a chance to go outside and play in the snow. It will be there before you know it. Ask your Daddy about snow, he can tell you all about it. Love you little girl. Love and lots of hugs. Leah's Nana

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  31. Dearest Bella and family -

    God is great and so faithful! A WORLD of prayer has been answered in just seeing you in your dad's arms and in an upright position. I feel such gratitude that it makes me weep with joy.

    My prayer today is that you continue to move foreward and gain strength. Get rid of all that third spaced fluid girl!

    Elizabeth
    Amarillo, Texas

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  32. WONDERFUL news to wake up to this morning Bella!

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  33. Yay!! I was so happy to read about your day Bella! Here is a picture for you to imagine- I shared your story with my high school age son last week. He shared your story with his wrestling team. They have a prayer time before wrestling practice everyday (which I think is such a positive thing for teenagers!) Can you just imagine a room full of bulky, sweaty high school wrestlers praying for you yesterday? Again you have touched lives and I bet none of them complained about how hard their workout was after they thought about how hard you are working! We will continue to pray for you and your family as well as your medical team!!
    Lynn
    Alabama

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  34. I just had to get up and check first thing. Wonderful news!

    Bella- Are you still feeling the love...wrapping yourself in the warmth of it? God is sending you his love too. Feel that. Isnt it amazing? xoxoxo

    Denise WI

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  35. awesome moment today...the army is still praying for you sweet bella and family..

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  36. Tim, it was so wonderful to see Sweet bella in your arms. When we saw this we had to cry, what a precious moment. She is such an angel from God. God has answered another prayer. God is Good. Bella is so blessed to have such wonderful parents that have great patience, faith, caring and love. It is such a testimony. We are so happy to hear that the medicine worked. Bella you are so strong and awesome and We Love You. Go Bella Go! Our thoughts and prayers continue to be with you.

    All Our Love;

    Myrna & Dwight CA

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  37. Oh my goodness how I love your girl!!!! Praise God for good news.

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  38. I couldnt wait to get to work so I can read these precious words " It work" I love the pics of you hugging Bella and her ssitting up !! OMGoodness Tim. I'm so happy right now !! thank you for keeping us updated! GOD BLESS BAY BELLA ! WE LOVE YOU GIRL. Now go pee for us !.
    Daylon's auntie Kristyn from CA. xoxoxox

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  39. I love that picture of you and your daddy Bella! Hang in there girlfriend you are going to get better I just know it. Thankyou God for covering Bella with your wings this week. Vicki

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  40. Words cannot express how happy I was to see the photos of you and Bella together today, especially the one of her looking into your eyes. (What a precious moment!) So glad "IT WORKED!!!"

    Bonnie in OH

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  41. YAY!!!!!!!!!!!! I screamed this so loud, you might have heard me! I was holding my breath this morning as I logged in here in California. I pray each of your prayers are answered.

    As parents, the way you two are still standing and holding it together for Bella and everyone on her team is courageous and wonderful. Your strength could build monuments. Blessings to all of you.

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  42. Oh My Godness!
    God be praised indeed!!!
    Waves of chills and then tears of joy hit me when I saw the pictures and read the update this morning! Let us emote for you, we are good at it! :) Keep rockin Bella!
    We love you!
    The Gleason's

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  43. All together now - Join me in singing the chorus of a great old hymn by Fanny Crosby, "To God Be the Glory".

    "Praise the Lord, praise the Lord,
    let the earth hear His voice!
    Praise the Lord, praise the Lord,
    let the people rejoice!
    O come to the Father thru Jesus the Son,
    and give Him the glory,
    great things He hath done!"

    Ahhh...that sounded great. Well done!

    Thankful for the good news today. And the picture of Bella in the arms of her daddy - yep -priceless!

    Praying for healing and giving God the glory in all things,

    Susan
    A friend in NC

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  44. I am so happy for you guys. I have lots of people here praying for all of you. It's so good to get good news.
    Bella, it was so nice to see you in your daddy's arm's and sitting up, with your eyes open. I know you don't feel much like doing anything but sleeping right now. You just remember your mommy and daddy love you so much and take such good care of you. As you sleep and your body heals, Jesus is holding you in his arms and keeping you safe. Jesus is watching over your mommy, daddy, and Ali, too. You don't have to worry about them. We are all praying for you and your family. Lots of people that you probably will never meet are thinking about you and love you. You just rest and get better.

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  45. Your site was just linked to me from a friend. What a sweet, sweet baby Bella is! It is so hard to see your child suffering and you feel so helpless. May God give you strength and peace to get through each hour of each day.
    Praying and praying for you!
    Kim Matson
    (Son of Jonas, with DDEB)

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  46. Unbelievable!!! well almost :)
    Keep fighting Bella and Ringgold family

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  47. Lynne, Bob, Jack and BenSeptember 30, 2010 at 1:23 PM

    Yahooooooooooooo!!!!! And to see Bella sitting up . . . amazing.

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  48. Oh sweet Bella - to see you sitting upright, what a gorgeous sight!!

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  49. Last night I was laying in bed and it was fairly late for me, probably 3 am. (I'm a college student, so sometimes I'm up late doing important things like studying or reading obscure novels.) I couldn't figure out why I couldn't get to sleep.

    And then it hit me - I hadn't prayed for Bella!

    Immediately I started asking for her kidneys to work, for her blood pressure to stabilize, for her to heal, and thanking God for the opportunity to be a part of Bella's healing.

    And the next thing I knew, it was morning.

    Praying without ceasing here in Michigan!

    - Sarah

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  50. You are in my thoughts and prayers.

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  51. Bella and family: Outstanding Bella - you ROCK! I do pray your road smooths out a bit (okay, a lot) but I know you and your family have the strength to deal with the rough spots too. Here's to hoping that the roughest spots in the road ahead are when your Dad gets to meet your first boyfriend :-).

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  52. Wonderful, beautiful news!!!
    Emily
    Ft Lauderdale, FL

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  53. Hey little Bella, You just have to get better so you can play with that big sister of yours> She is toooo much fun. We want to hang out with you too.
    Love from Jake and Harrison

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