Monday, August 16, 2010

August 16: Day +45

Let's start with the good news today, shall we?

Bella had her liver ultrasound today... and the result?


NO MORE V.O.D!!!!!

Which means no more difibrotide!!!!!

We are beyond grateful for that drug, but were are equally happy to be off it!

YAAAAAAY!!!!!!!!!! Thank you for all your prayers, intentions, thoughts, and energy!

One down, two to go!

When I say "two," I refer to her ventilator for her lungs and her Prisma dialysis machine for her kidneys. That's where the 'not so good' news comes in. Bella is having issues with her blood pH... it's too acidic. She is not infusing enough oxygen into her blood on her own. That's the easiest way I can think to say what is happening. In addition, she is still having trouble with her blood pressure. It is too low. They want to keep her 'dry' s we try to move back toward extubation (taking out her breathing tube), but keeping her too dry makes her blood pressure plummet. It's quite the balancing act.

In other related news it looks like Bella got some sort of mystery infection late last week that was treated over the weekend. Her immune system numbers SHOT through the roof, then today, cut in half. When I asked Dr. Tolar to help me understand what was happening, he explained that Ali's cells mobilized upon the presence of an alien (bacteria most likely), and between Ali's cells and the antibiotic, the bacteria was killed, so her counts went back down, as any typical person's counts would. So, in summary, Bella's immune system is now Ali's immune system, and it is effectively and appropriately functioning inside Bella!

Crazy, huh?

I know.

In still other related news, Bella opened her eyes quite a bit today! she looks pretty groggy when she does, and she only opens them for a few seconds, but it was nice to see her eyes again! I was worried that as we weened her off her sedation, her eyes would BULGE OPEN as if to say, "AHA! I'M AWAKE NOW! TRY TO HOLD ME DOWN!"

Luckily, it wasn't like that at all.

It was more like two, half-opened slits groggily moaned, "Uhhhhg. Is there anyone there? Daddy? Is that you?" the promptly shut again. Baby steps. Baby steps.

I started the day with sadness in my heart after rounds because I felt like we were stuck in the same old cat and mouse game with bella's hydration and blood pressure battling each other. However, by the end of the day, I had a little more optimism in my heart. Remember, today was the day we were shooting to extubate, and that is on indefinite hold till she can properly oxygenate her blood even at the mildest vent settings. So, two steps back, one step forward.

Nevertheless, it is with a humble and weary smile that I say THANK YOU to God, the Universe, and all of you for achieving one heck of a major milestone today. THAT was a pleasant surprise. It's important to be grateful for the blessings amid the problems. It's a challenge for me often. Lately, I have been a little bitter that we are still in the ICU this far into transplant, and regardless of how her skin is coming along, it was all a moot point if we were going to lose her to V.O.D. or kidney failure.

Now, I'll take the victories in the midst of the losses. Otherwise, that "all or nothing" thinking will rob me of any happiness or relief along the way. Life is best enjoyed in small increments. If I keep waiting for "All or nothing," I'll end up living life "on hold," and miss the blessings along the way... the never ending stream of cards coming in from our church community (thank you Sara for organizing that!)

...or the fact we headed off a potentially fatal side effect today and got off an experimental drug

...or the fact that for the past 3 weekends, Ali has been at a lake playing and discovering nature

...or the fact that every night I get to sleep through the night next to my wife while Bella is in the ICU

...or the fact that not a single day goes by that someone reaches out to Ang or I through the web to let us know they are there, thinking, generating, and/or praying for our family.

...or the fact that we have a 900 sq ft apartment that costs $25 a day for us to rent

...or the fact that we don't have to use a car at all 5 out of 7 days a week here get the picture I think.

What's on your gratitude list?


  1. Today Tim, I am grateful for Bella. I kind of went through this day with my head down, without much motivation. Normally, I read your posts as soon as I wake, as I'm three hours later here on the east coast. I didn't do that today. But tonight, as I'm getting to sleep, I wondered, how is little Miss Bella today. And the first thing I saw was her beautiful! Instantly, it was like my heart opened up...thank you, thank you for posting those pictures! I am reminded of all that I have and all that I can accomplish...blessings to you for helping me realize all that I am grateful for...every day! Blessings for Bella, beautiful baby girl, taking baby steps to getting well...

  2. Oh those eyes! This made my day...your sentence about Ali's immune system is now Bellas blows my mind. These beautiful sisters will have quite the story! Today I am grateful for:
    A safe trip home from Ohio, including a peaceful 5 hour plane ride.
    A new school year, with a new group of kids to enjoy!
    A few last minute playmates to squeeze in before school starts.
    Celebrating 9 years of marriage last week.

    I'm glad the cards are coming your way. When I asked the church for help with it, I explained how helpless I felt. We couldn't cook you dinner or come play with this was the only way I felt like we could really support you. Comments on the blog are wonderful...there's something about a hand written note.

    Bella continues to amaze us. This year, in kindergarten, we had some caterpillars. One was about 7 days "behind" the others in size and crysalis making. I fully expected it to change, with mail order caterpillars, there's no guarantee....anyway, sure enough, as I was mentally ready to explain to my 24 kids we had 4 butterflies and not 5, I decided to wait a bit.....and came back tom work to find one more butterfly, just as beautiful as it's buddies. Bella will get there....on HER time.

  3. Inspiring...with every breath keep telling her heart is so humbled and in awe at our amazing God and what He is and has done...I have so much to be thankful for...pale in comparison...Bella and you (her heart and voice) are so inspiring.

    I am greatful for 2 children and loving husband.

    Hang in there. God is carrying you all in the palm of His hands...

  4. As always, a lovely and thought-provoking post. A favorite essayist of mine (Saralee Perel)once used the expression "unadorned blessings" to describe those gifts that we so often take for granted, and I love that description.

    As a high school teacher who returns to work tomorrow, I'm grateful that I have a job. I'm also thankful to have had the summer respite from my work to spend with my family as we had to say farewell to my 84-year-old dad who passed away at the end of July.

    Praying for continued improvement in your sweet Bella...for more steps forward than back.

    A friend in NC

  5. Thank you for posting those beautiful pictures of Bella. Such beautiful eyes. I'm so happy to hear no VOD. That is great news. I love your optimism. I find myself getting lost sometimes in the negative and forgetting the many blessings God gives me along with my trials. It's so important to appreciate our blessings. You uplift me every time I read your posts.

    I'm so grateful for my two beautiful babies, my husband who works hard everyday to give us this home and allow me to stay home to raise my children, and I'm grateful for my relationship with God.

    Take Care,
    Amber McLaughlin,CA

  6. Look at those peepers opening up! I am so happy to read your post today and see those pictures. And no more VOD? What a fabulous day!

  7. On my gratitude list tonight is reading this post. I had one of the those days where there were many steps back after only a few steps forward and I was feeling like a lonely failure. Almost heading to bed, I felt a "butterfly" in my heart and knew that I wanted to see if you had posted yet. So I decided to check and was OH SO HAPPY that I did! First, to see her beautiful eyes. Second, to hear how well Ali is doing. And third, to let God show me Him through his children, like you. Thank you for your honesty and for your faith, and I thank God that He works this way...through other people. Good night!

  8. Today and everyday that has passed, I give thanks to the Lord for sheilding my family with his protection, love and mercy. I give thanks to our Loving Lord daily for Bella...I thank him for watching over her and continue to pray that he pour out his blessings over her. No more VOD, is amazing...and the fact that no side effects took place...even more amazing!!! Her eyes opened is so precious! As I'm typing this note (while sitting on the couch, with laptop in hand), as soon as my husband saw Bella's picture pop up, he placed his hand over her (on the screen), and prayed for her! Thank you for keeping us 'in line' day to day...I look forward to Bella's update each evening! Good night sweet Bella...I am grateful for you!

  9. So glad her liver has healed. I will continue to pray for her kidneys and lungs. I believe that she will shortly start to get stronger. Hang in there.

    Today I am grateful for healthy kids, loving family and the presence of God in my life.

    God bless you. Thank you for sharing your journey and your testimony of God's love.

  10. So grateful tonight for the turnaround in VOD. Thank you for a fantastic post, I love these photos. Jen

  11. That glass is more than half full!!! Look at her precious face with eyes open! And before your birthday Tim!!!! You got your present before your birthday. You bet, life is good.
    Hugs. Terri R.

  12. Love the pictures of beautiful Bella's eyes open. She knows you have been with her this entire journey and boy will she be grateful when she wakes up.
    Will continue to pray for Bella and the entire family.
    I am grateful for my EB family. It makes me so sad to read these blogs sometimes, but I feel like I have a duty to Leah to continue the prayers and give support if it is needed. God Bless. Love Leah's Nana

  13. How precious it is to see Bella's eyes. They are beautiful. Great news "NO VOD", YAY! Grandma Carolyn loves you Bella.

  14. Jack and Molly's NanaAugust 17, 2010 at 9:43 AM

    Two miracles in a single day - the no VOD diagnosis and those EYES! As far as the breathing tube issue: you KNOW it's going to happen, and I'm pretty sure you don't want to rush anything. She seems to know exactly what her schedule is, doesn't she? It's almost as if she has a direct connection to God, and is listening to His schedule and plan for her. Smart AND beautiful!

  15. Oh I love seeing her eyes! How fantastic is that!!! It made my day seeing her lil peepers! And my day was not starting so great, but none of that matters..
    Anyway, Bella's little face made my day. I am thankful for that.
    Much love to you all. We shall talk soon... to you or your booty :)
    The Vanderbooms

  16. Wow-Hi there beautiful girl! To see your pretty face and eyes open... I am speachless...GOD IS GOOD!!!!! and I can't forget to mention NO VOD...let me repeat myself, GOD IS GOOD!!!! So happy to see Bella's progress. We think of you all daily and are praying whole heartedly. Sending you all our love, prayers and intentions. Glad to see Ali is having fun, making friends and enjoying the beauty of MN.
    Can't wait to bring the pics of Bella to Joan tonight. I have to give her the daily Bella and Ali update. I usually check your blog every night, but for some reason my internet was down last night. I didn't get to read the blog until this morning. And let me tell you, this was a grumpy morning for me. WOW but after opening your blog ten minutes ago, my mood can crashing to a hault! Let's just say God works all the time, just not on my time, and now it makes sense to me why my internet wasn't working. I needed this joy today, not yesterday. I thank You this day for watching over my family, for providing me with Faith. I thank You and praise You for bringing the Ringgold's to our lives, for sharing their story and providing me a remarkable example of love, it's been life changing. Today Lord Jesus, I thank You for allowing us to witness this miracle, to share, to be present. I ask that today Bella continues to heal and progress. We trust in You Lord and know that Your love never waivers, Thank you for this day, Thank You for blessing us. AMEN
    Lara Seto-Davidson

  17. I'm so grateful that Bella finally opened her eyes! I love you guys. I feel like crying tears of joy right now. I pray that things keep moving in the right direction and you are able to get on top of that blood acidity problem. Happy thoughts. Laura V. Bergisch Gladbach, Germany

  18. What's on my gratitude list for Bella?

    1. No VOD and her eyes opened, not the same intense blue stare I miss, but a good start.
    2. That Tim is able to stay with Bella and protect her from “well meaning” doctors and nurses.
    3. That Ali’s cells are kicking butt in Bella’s body.
    4. That Ali has adjusted well to living at RMH.
    5. That Angie has a job that allows her to work every day, where ever she is and that it is providing the fantastic insurance needed to get Bella through this.

    Go Bella, love Grandpa Rodger.

  19. I'm grateful for your gratitude and for the beautiful, hopeful pictures of Bella you posted. I'm grateful to be able to send prayers, thought and intentions to you Anji, Bella and Ali. I hope they arrive in waves like a kaleidoscope of butterflies and that you sense them when they arrive.

    Claire B