Tuesday, August 17, 2010

August 17: Day +46

The good and the bad...

Well, yesterday was definitely an up day, and well, today... not so much.

We had an echocardiogram done to look at Bella's heart after the new Renal docs yesterday thought they heard a heart murmur.

The echo was done, but it was not a great image since Bella was really fidgety during the procedure.

The results showed that Bella has what is called a "Left Ventricle Outflow Tract Obstruction," or LVOT obstruction, for short. Basically, it is some sort of blockage that is preventing her from pushing the required amount of fluid out of her heart out to her body. The good news? This accounts for the soft blood pressures and her inability to get off norepinephrine. I can't speculate on the bad news yet as we don't really know what we are dealing with yet. We need a better picture.

Thursday morning we have a heart MRI and a chest CT scheduled. The heart MRI is extremely specialized, and there is literally only one guy here who can do it and he's at another hospital tomorrow. Hey, at least he's not at the lake for the next week and a half, right? (Given that it's August, that could have been a real possibility!) After the test, it takes several days to process the pictures, and given the impending weekend, we probably won't know anything more till next week.

Needless to say, this one hurts.

Another major organ "nicked" by transplant it seems.

Again, it is a good thing this kid was so healthy at the beginning of this journey. Her regular evening nurse was shocked when she came in tonight after not having Bella for a few days. Bella was doing so much better just a week ago. Tonight, they are having trouble even getting a blood pressure on her and had to actually do a doppler reading on her arm to get a blood pressure. They are giving her more fluid and a second antibiotic as a precaution, and just trying to get her stable through the night.

And so it is with BMT. Never a straightaway to anywhere.

On a positive note, Ali got to see Bella open her eyes tonight. That was a sweet moment.

We are sad, concerned, and once again reminded of the powerlessness of it all. Each new setback is a humbling kick in the teeth to remind me that only God has all the answers. The longer I am on the case, the more I learn. What do I learn? I learn a little about a lot. Now I am boning up on cardiopulmonary physiology and pathology to not feel completely lost in following Bella's care. The problem with that is who can ever know it all? The docs don't even know it all. Only God does. As a "recovering know-it-all and control freak," I frequently have to remind myself of my own limitations, and when I forget, God is quick to gently remind me.

I have to remember the serenity prayer in moments like this.

God, grant me the serenity
to accept the things I cannot change
the courage to change the things I can
and the wisdom to know the difference.

I may have shared this before, but there is a wonderful peace I feel in the moments after I take off in a passenger jet to fly somewhere. During takeoff, I say a prayer of thanks to God for my life and my family and if this be the moment I die, I go happily and complete. By doing this, I turn over my life and will completely to God for the flight. Why? Because my life is completely out of my hands while that plane is off the ground! I smile when I land, because I realize I get another day after all, and the rest of that day feels dream-like. It really is great, and I need to translate that into this setting. As I go to bed, there really is nothing I can do to keep Bella alive or make her get better. It really is totally out of my hands. Tonight, I turn over Bella's life unto the care of God so that we may get the rest we need to stay healthy and strong for her day in and day out. It has been 44 days in the PICU after all, and we need to maintain this vigil over her for quite a while longer I suspect. I am grateful I can surrender this control, and collapse into bed without anxiety. The sadness remains, but that's okay. It's a normal, natural response to a situation like this. No need to try to medicate it or distract it. I can fall asleep sad. I can't fall asleep anxious.

Forgive me for rambling a little here, but it is a catharsis and this is the medium I use to work my way around the daily struggles to end somewhere centered, somewhere grounded. Thank you for your patience in following me around the circle to see the other side. Sometimes it takes many steps to get there, sometimes only a few. Thanks for being there each step of the way. God bless you, and good night.


  1. Your writing is unbelievable; your ability to translate your thoughts into words is too.

    Many prayers for beautiful Bella as she overcomes this setback. It's wonderful to see her gorgeous eyes and a beautiful moment between two sisters.

    Prayers from NY and beyond. I hope you slept well tonight. Keep writing.

    Waiting for the UP day tomorrow!

  2. Your such an amazing Daddy! Always remember that Bella is in God's hands.

    Honestly, again I want to say that you are such an amazing Daddy... One like no other! Most father's will hardly ever change a diaper! YOU change dressing and more! Keep up the hard work! I love reading your post!

    Praying always from Corona, CA!

  3. Well said my friend from unit 5. If you need to talk call me or come over I want you to know we are here for you and your family. Anything, anytime just please ask. Praying for your little girl, and praying that god give you guys strength beyond your imagination and comprehension. You are not alone and God is good. Elle's dad Steve

  4. Big sigh. Deep breath.
    I know I don't have the right words....praying for all of you.
    And those eyes, again made my day.

  5. I'm so sorry to hear about Bella's heart. I know how difficult it is to hear about the domino effect of BMT on your child's body, and my heart aches for you guys. This is a difficult journey but don't ever forget that you came here to try to help her live a better life. You both are wonderful parents to your girls. We love you! Love, Jennifer

  6. May you find rest in knowing that God is in control, and HIS will is greater than we can sometimes comprehend. My heart too aches for Bella...I'm so sad tonight and pray that the Lord touch upon her little heart. You are amazing parents, and an inspiration to myself. I have faith and believe that the straight away is near. Please know that Bella & your family have remained at the top of my prayer requests...Please Lord protect Bella tonight and put a double guard of angels around her! Love you Bella!

  7. I am sorry about this new setback. I believe God will lead you through this. Praying...

  8. It breaks my heart to read your post tonight. You are such wonderful and strong parents. Bella is lucky to have you guys by her side. I'm sorry she has to go thru this. I pray that God will heal her. That he will guide the drs to know how to fix her. Stay strong!!

    Take care,
    Amber McLaughlin,CA

  9. Sending hugs to your corageous family! I know how heavy you feel when dealing with EB... I keep praying for Bella and all of you. Hugs!

  10. We continue to pray for your sweet Bella... God is good.

  11. So sad to read this update. I am so sorry to hear about beautiful Bella's latest problem. I know it has been quite a journey for your family, but please remember that God Is In Control.
    Extra prayers from the EB prayer warriors for your precious Bella. Keep the Faith. God Is Good. Love you guys. Love Leah's Nana

    p.s. Love the pictures of Ali and Bella. What a couple of cuties you have there. You are blessed!!!!

  12. Those pictures are adorable!!! I'm so grateful that Ali got to see Bella awake. Thanks for the updates. You're writing is so heartfelt and true. It's sometimes hard to separate the "sadness" feeling in your heart from the KNOWING in your heart and brain that "this is out of my hands and it's God's will." But you are right . . it's okay to go to bed sad. Thanks for that reminder. I'm glad you have a medium like this to what you call "rambling" and what I refer to as eloquently portraying your innermost feelings. Keep your head up still praying for you in MI. Much Love!!!

  13. Sending prayers for Bella and prayers for you, Angelique and Ali! God has made you a strong family and your reliance on that strength is so wonderful to witness.

  14. Great to see Bella peaking at you. Can't wait until she is fully awake, and giving you her intense "deep" look.,
    Sorry to hear the latest problem with her heart. It is sad! Hoping and praying that it can be handled quickly and effectively. You and the medical teams are doing all that is humanly possible. Now, you are right in resting in God's love and care. Love you all,

  15. It's an honor to follow you "around the circle" as well as to lift your precious family in prayer.

    A friend in NC

  16. Continuing to pray for your sweet Bella! Isn't is great to know that the situation with her heart is not a surprise to our all-knowing God?!?

    I cannot imagine what this roller coaster ride must feel like on the inside - thanks for your posting to let us know how to pray specifically for your sweet baby girl, you - her parents, and Allie.

    Also, praying for the medical community who works with you on Bella's behalf. I pray she continues to surprise them - she fought off the VOD and is working through the BMT issues, I believe God will heal her of the heart issue also.

    I am lifting you up with Phillipians 4:13 today:
    "I can do all things through Christ who strengthens me"

    Kim M
    Waterford, MI

  17. Blessings and prayers are being sent your way. Keep strong. Keep encouraged. Keep looking up!

  18. We're in constant prayer for all of you - checking in every morning to know what to pray for each day. You're not alone in that 10X10. It's good to see her eyes!! (Steve's eyes, by the way.)


  19. Praying for strength and healing for Bella and her family.

  20. I feel for Bella and for You. I take off my hat and show my admiration. I wish all the best there ever is and wish you all the best luck there can be. I read your journal in Finland.

  21. Oh my dear friend, you are so strong and Bella loves you for that! You help her everyday and she can feel that... just remember :)
    I loved seeing the photos of her and Ali... made my eyes water a bit with happiness.
    Praying and loving you four.
    Lots of love,
    The Vanderbooms

  22. Lynne, Bob, Jack and BenAugust 18, 2010 at 8:58 AM

    Beautiful Bella. Seeing those eyes makes our hearts soar, reading of her recent setback makes our hearts ache. We are sending healing heart prayers for our girl and plenty of love for you. Thank you for including us in your circle. Instead of following you around it, we feel we are inside it with you, and every day, we are inspired. Know that the grace your are giving to every one of us in the circle is being returned to you a thousand fold.

  23. Oh my goodness, look at her! She is so gorgeous! I am so in love with your little girl, she is so amazing. And so is Ali! You and Ang are my personal heros to have two so very exceptional children, you both are doing an amazing job with them and yourselves. I have so much love and respect for your family. You are all now faced with another challenge, which I have absolute faith you all will overcome with your faith and your binding love for one another. We continue to pray for beautiful stunning Bella, and the rest of your family. Sending strength and prayers... hold on!!! Much love, The Ostermanns

  24. You and your family are amazing! I think of Bella and pray for her all the time. There is so much strength in her little eyes! You can actually see it! Lots of love to you all!

  25. “Promise me you will always remember – You are braver than you believe, stronger than you seem and smarter than you think”-Christopher Robin to Pooh

  26. Tim you are doing an awesome job for an awesome job! Hang in there. Sweet Bella, we are praying and thinking of you daily. You also hang in there!
    smiles, Rada

  27. Love the pictures of Bella and Ali. So sweet. I cant imagine how hard this all is for you and Ang and how hard it must be for Ali...so seeing those two together makes me cry. I have something for Ali and Bella but need an address if you dont mind. Hang in there...we all are praying for you and Bella. Denise WI