Wednesday, September 1, 2010

September 1: Day +61



Helloooo...

First off, it was a good day! The A line is working famously, we changed Bella's Prisma circuit (much to her chagrin), and we even titrated the phenyl and norepi a tiny bit. No one wanted to mess with titrating during the circuit change. Remember, you can only accomplish 1 or 2 things a day around here depending on what they are. So, through the night, if Bella's pressures look good, they'll wean norepi, and if they look bad, they'll go up on phenyl. Fair enough.


The best news of the day was that Bella's blood pressure hung out about 10-20 points higher than yesterday, and even though we weaned a little of the norepi, we didn't have to crank up the phenyl at all. Bella needed albumin overnight (as usual), but was strong throughout the day. It was day 2 of 5 for the treatment dose of steroids, and I am hoping that they are finally getting to reduce the inflammation in her capillaries so they'll return to their normal size without having to get clamped shut by either the norepi or phenyl.


In other news, today marked a neat occasion in that I was featured in a music therapy online magazine for the music therapy I provided Bella during pregnancy and her first 12 days on the planet while she was in the NICU. I had recently completed my NICU music therapist certification, and Bella was my first NICU patient. Ironic? Coincidence? I say Providence. You can go HERE and listen to the podcast as well as clips of the music and stories we recorded for Bella to listen to in her isolette when we couldn't all be there with her.

The magazine is called Imagine. Here is the official press release sent out today:

PRESS RELEASE

September 1, 2010: The American Music Therapy Association (AMTA) is proud to announce
the debut of the inaugural issue of
imagine, the first annual online magazine dedicated to Early Childhood Music Therapy. Edited by Dr. Petra Kern, imagine strives to enhance the lives of young children and their families through music by sharing knowledge, strategies, ideas, and government related issues with colleagues around the world. The magazine may be accessed at the following link: www.imagine.musictherapy.biz

I really thank the editor, Dr. Petra Kern, for seeking me out for publication and working with me as I missed deadline after deadline as I prepared to move the family to Minnesota for the summer. I literally recorded the podcast in my hotel room in Glendive, Montana and sent it off the night before I arrived here in MN! I am grateful that I can share Bella's Beginnings and the role music therapy played in easing her transition into this world with so many more people that don't know Bella's story through this exciting new publication. In addition to being the editor of the magazine, Dr. Kern is also the President of the World Federation of Music Therapy, so you KNOW this publication is going to get read all over the globe! Dr. Kern and I completed our NICU MT training together in Orlando, FL in Jan of 2009, and quickly became friends. I am indebted to her for this opportunity to share Bella's story! Danke schön, Petra!

Lastly, tomorrow I am bringing to the hospital a beautiful, handmade guest book that our friend Sara made for Bella for her birthday party. I am going to invite every healthcare professional that has worked with Bella thus far to write what they have learned along the way. Bella is clearly here to teach us all, and I feel in my gut that she is still in the ICU simply because she is not done teaching yet.

What has Bella taught you? Will you please comment and share it with the community? I will add it to her guest book!

Good night. God bless you.

19 comments:

  1. Bella, You have taught me so much but the biggest thing you have taught me is the power of prayer. I didnt pray before I "met" you. But as I became involved in your story, reading everyday, I realized that prayer is more powerful than I could imagine. Not just lifting you up in prayer but what your mommy and daddy get from it as those they have never met pray for one of their greatest treasures, you sweet Bella. Now because of you I pray daily, sometimes several times a day. You did that and that really is something.
    Hugs and kisses Bella, Denise WI

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  2. Bella-

    You have taught me how BIG God is and how much He really is capable of. I am a born-again believer, so I have never doubted God's power in my life, but your life has such amazing reach and you have been capable of reaching so many with your story! I know that the Lord will use it for HIS glory and that His plan for you is perfect!

    Bella, may you be blessed with amazing health and prosperity in your life!

    Abby, Alton, IL

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  3. What a wonderful way to use that book! Awesome idea....
    I have to get the right words for what she's taught me...I've tried to compose it, but it doesn't seem "right".....have to sleep on it!
    Love the good news...and pictures!

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  4. Bellam you have taught me that something good can come out of something bad. You have also taught me that PRAYER STILL CHANGES THINGS. May you and your family always be blessed. Jesus loves you:)

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  5. Bella Doll-
    You have taught me to be grateful and to appreciate what each day brings me. Because of you, I faithfully pray daily. You continue to validate the love, mercy and wisdom that GOD has AND will continue to embrace us with. I thank you for bringing me closer to the Lord! Thank you for softening my heart and opening my eyes!! Please know that I think about you many times throughout each day and a prayer follows each of those thoughts. Love you Bella,
    nicole

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  6. Congratulations on the publication!

    Bella has taught me to never give up. I think about her a thousand times everyday while I pray for her recovery.

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  7. I knew it was going to be a great update because of the beautiful picture of everyone smiling. What a great picture of an amazing family.
    Bella has taught me that miracles do happen. She has been through so much and with the grace of God, she is still here. God Is So Good.
    Will continue the prayers for your very special, darling daughter, beautiful Bella. Love and peace. Love Leah's Nana

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  8. BELLA,
    YOU HAVE TAUGHT ME HOW LUCKY I AM TO HAVE 2 HEALTHY LITTLE BOYS!I NO LONGER TAKE THAT FOR GRANTED AND THANK GOD FOR THAT EVERY SINGLE DAY!BECAUSE OF YOU I AM A BETTER MOM.I HUG MY KIDS A LITTLE TIGHTER EACH DAY AND PRAY THAT YOUR MOMMY AND DADDY WILL GET TO HUG YOU VERY SOON TOO!YOU ARE SUCH AN INSPIRATION TO SO SO MANY PEOPLE!

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  9. Bella, I have been following your blog for quite some time now and have learned so much from you and your beautiful family. The most important thing I have learned is to not sweat the small stuff with my kids. When one gets sick I immediately think of you and what you go thru on a daily basis and am reminded that this too will pass. You are so strong to face the constant pain you must be in everyday. You teach us all strength and I continue to pray for you and your family to continue to be strong.

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  10. Hey guys,
    I see you are using aquafor on her head. We used alwyn cream on her head, doesn't keep the heat in and it worked wonders on the milia. Jeremy can get you some. I highly recommend it.

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  11. Bella, what you have taught me I can barely put into words. You are such an inspiration to many and your strength is as big as an ox. Sweet Baby girl, you have reconnected me with God and have reminded me of the POWER of Faith and Prayer. You have made me a better mom and a better person. Your family is such a remarkable example to each of us...thank you. I think and pray for you throughout the day and God always makes sure that it puts a huge smile on my face. I know that God is always there with you bringing peace, comfort and healing. You are going to have an awesome testimony; I know our Lord has BIG plans for you. Sweet Bella, I thank you, your sister Ali, your mom Ang and your Father Tim. Thank you from the bottom of my heart for allowing us to be in your journey.

    Peace and Love,
    The Davidson's

    P.S.: Congrats Tim, I passed around your pod cast post. Looks like Dad is doing be things too!!! What an accomplishment-CONGRATULATIONS!

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  12. Lynne, Bob, Jack and BenSeptember 2, 2010 at 9:20 AM

    Beautiful Bella, you have taught me patience, to be with things exactly how they are and to be grateful every day for the little things that make life so rich. But above it all, you and your family have reminded me every day to look for, and expect, miracles -- the big ones and the little ones. They're all around us, and you've taught me to pay attention to them.

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  13. Bella, you have taught me that God's ways are not our ways and that sometimes we have to be more patient than we would like. Also you have taught me to be grateful for the little things that we normally take for granted. May you continue teaching us lessons for many years to come!

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  14. Sweet Bella~

    Life is a gift. Love is powerful. God is good. Our bodies are "fearfully and wonderfully made." Miracles occur. Families are precious. Prayer works. And you, special child, are a constant reminder of all this and more.

    With affection and a fervent belief that you will be healed,

    Susan
    A friend in NC

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  15. Dearest Bella,
    You have taught me that God has special spirits who are stronger than the rest of us who He has chosen to be here in earth and endure the trials that none of us would be able to handle. You have taught me the power of prayer and that miracles do happen everyday. You are one of the STRONGEST people I know. God Bless!

    With Love,
    Amber McLaughlin,CA

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  16. Bella you are teaching me each day! I pray for you and your family as I follow your story! I have learned that Life is a true gift and miracle. Even when times in my life are hard, when events in my life seem impossible, when I feel like there is no hope - I think of you and your wonderful family and know there is hope and stregth and life is to be lived NO MATTER WHAT.

    Tina in NJ

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  17. Bella,
    You've taught me to appreciate all the small things in life. To be grateful for things a barely even thought of before. You've taught me to take better care of myself, if you can do it, so can I!
    You've showed me that life is full of miracles and that God is always with us, watching over us, holding us.

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  18. Bella, beautiful baby girl, you and your wonderful family are teaching me every day. Teaching me not to wait, not to put my life on hold until everything is just right. Because life is only made of today...of this very moment. Teaching me to be grateful for my health, and my childrens' health...life can change in a heartbeat. Teaching me to be unafraid to reach out and get involved in other people, it is why we are here at all. And finally, teaching me to be strong, to never give up, to never lose hope, even when my heart is breaking...because you Miss Bella, beautiful baby girl...will be well! Sending love, peace and hope...every moment.

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  19. Bella,
    We have been alone in our EB journey until we met your family, and we met them because of you! I have learned the importance of having friends who can understand your trials because they have gone through them too. Our burden has been lightened. Bella, you're a blessing in our life. We are so glad to have met you and your family, and pray for many, many years that you and Daylon can play beside each other. We love you! Love, The Edlings

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