Friday, September 17, 2010

September 17: Day +77

Bella is storing acorns for the cold winter in her cheeks!


Sleepy in Minnesota...

Bella had an okay day. They are having trouble managing her blood pressure (shock). When she is awake and alert, her heart rate goes up to the 180's and her blood pressure is okay... not even high. When she sleeps, her heart rate drops down as low as 100's-120's but her blood pressure drops as well. The problem with having an A-line is that if her blood pressure dips, you see it in real time, and if it alarms for 5 minutes constantly, people think it's a big deal, when if they would just leave her alone, often her blood pressure holds steady... low, but steady... while she sleeps.

Anyhow, We tried to take it easy on her today to let her rest. She still gets futzed with all day and evening by the multiple doctors and nurses she has throughout the day, but it'll be quiet overnight at least.

Those white dots are called milia. It is basically scar tissue that may fall off at some point...

The plan is simple for the weekend: let her rest and heal. Tomorrow, daddy gets to watch his favorite English football team, Arsenal, play on TV while he does bandages, and mommy and Ali will go clothes shopping for more fall gear. We won't be getting out of Minnesota anytime soon, so we need to be ready! We have thin blood being from southern California (maybe THAT'S why Bella's pressure is so low... thin blood? LOL), and it has already been colder here than the coldest day of the winter in Cali. I am looking forward to Ali getting to experience the change of color in the trees, and the chance to play in the snow and go sledding! That will be cool. Sledding and snow forts were a part of my growing up, so I am grateful she will get a chance to experience such things while we are here.

I still can't believe we fit a giant tube in there...

On a separate note, I have to share about a blog one of our readers shared with us tonight. It REALLY put things in perspective for me in terms of despite the circumstances, how blessed we truly are through this entire process. We have access to the very best BMT docs in the country, and the very best dressings and products for Bella's care, all of which is covered by Angelique's insurance policy. We stay in a beautiful, gigantic family facility with a media room where we watch movies in giant oversized couches and chairs while eating fresh popcorn... we have it GOOOOOOOOD.

Please take a minute to visit this blog and read the story and see why I - we - all of us have so much to be grateful for. CLICK HERE. Please take the one minute it will take you to read it. It is very powerful. Thank you to The Italian Dyes for sharing this with us!

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.


  1. Rest Bella rest.
    Thank you sharing that blog.
    Amazing you you can feel connected to someone so far away...sweet little boy...

  2. praying for bella tonight and all those suffering from eb.....

    god bless y'all
    w-s, nc

  3. My heart breaks over and over for baby Robert...please Lord, put your hand upon him and ease the heart hurts
    Please Lord continue to be with Bella, and thank you Lord for the care that Bella is receiving...Please be with her this weekend, and help her to get the much need rest she needs in order to heal. Protect Ang, Tim and Ali as well and continue to strengthen and shower them with your wisdom on this journey.


  4. "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."
    Things are tough right now, but I believe you are right. Someday this will be a stretch of the road that you traveled. There will be difficult memories couched in the love that you have felt from God above. But, someday it will be a place that you once were.
    When I have traveled the most difficult stretches of the road in my own life I have stopped to consider the day when I will go back and flip the pages of my journal to see again how things resolved. Life is a journey not a destination.
    The destination comes at the end of the journey when we will see God the father of us all again and enjoy being enfolded once again in his loving embrace.

  5. Ahhhh...the arrival of fall with its clear blue skies, crisp air, and wonderful display of color! After an unusually hot summer, I too am looking forward to a change. And I hope for your family the change of seasons will reflect a new direction for Bella as she turns that corner and heads toward being healed.

    Thank you for sharing the story of Robert with us. Sometimes I am so overwhelmed by the suffering that exists in the world, but I cling to my faith and the knowledge that God is our hope and refuge. God bless that sweet child and the people who will come forward to help him.

    Hope you all enjoy a calm and restful weekend.

    Praying for healing,

    A friend in NC

  6. Still thinking of and praying for Bella! I love fall and the change of colors and even snow for about a month. I hope you all enjoy just a little of it too. ;)

    Denise WI

  7. Check out those cheekers! :) I hope that she gets some decent rest this weekend so you can start waking her up a bit more. She looks beautiful with her face untaped!

    I am off to read the link you posted ...

  8. Praying for Bella and baby Robert. Tim you are so right - we all have so much here in this country and should be so very greatful!

    I am praying and hoping that this will be a Winter of Miracles for Bella & all of you!

    Tina & family in NJ

  9. I'm glad to hear the trach went in good. Now we can see her cute face and enjoy those chubby cheeks. So adorable. Lots of prayers. We need to figure out that darn blood pressure. Stay strong.

    Take Care,
    Amber McLaughlin,CA