Elizabeth Cady

Elizabeth Cady
Our Darling Girl

Thursday, November 4, 2010

Day +42 November 3

Elle's cultures still coming back negative for yeast, but she is still acting like she is sick, they say because of the blood pressures.  The plan is to take out 2-3 lines tomorrow and replace them.  I said before that I was ready to pounce at this window of opportunity.  Well here it is and the plan is in place but I am not sure she can handle the big Hickman replacement.  This is her largest central IV access and replacing it is a surgery rather than a "procedure".  Her skin is so bad and "cheesy" at her neck and sorry to be graphic, but the outer layer of skin is coming off of her upper chest and shoulders.  I am not sure how to accomplish what needs to be done without completely taking off a very large area of skin, causing bleeding to already open tissue, and/or driving more yeast or Pseudomonas or what ever else is lurking in opportunistic colonies into her bloodstream! 

I know many of you will not read this until after her big day Thursday of IV replacements, but we are asking for extra prayers that the skilled physicians will have clear minds, steady hands, exceptional judgement.  We also ask for protection against further infection, prayers for baby to tolerate the procedures / surgery and to not suffer much pain through it all.  We ask that she and we have the strength and endurance to keep fighting.  Also pray that we can entrust our sweet girl into God's hands and that we can try to be clear headed and worry less by letting Him shoulder the burden.

She is resting after head gear (done in record time this time) she is actually a more normal color than this
We got to see her beautiful face uncovered again tonight while changing her head gear.  Although it her head is very raw, she is still so beautiful and we wish we could smother her face in kisses.  This is not to say it isn't hard on us.  S and I went and had a beer afterward! RT, Sheena stayed an hour and a half over to help us with her head gear.  She is one of the awesome staff here.  So many of the nurses, RTs, and doctors seem to take a personal interest in her.  They are not afraid to care and we love that.  I am going to be a better nurse for it.

Chloe, Destiny, and Ginger are getting on well.  They are having a really good time together.  They are learning to read, and share, and make chores fun.

I mentioned in the last post how I was able to go to sleep on time, right?  Well, I lay in bed awake for 20 minutes or so, unable to fall asleep and Ginger whispers, "Are you awake"?  So we end up quietly talking like teenagers for awhile.  Finally, we both fall asleep and at about 3AM, I hear Chloe cough and then say,"Mama"  I started to get up just as she vomits in her bed.  You never saw two women move so fast!  It was actually her second episode.  Stefan and Dad felt the love too.  He said you never saw two men move so fast! It is just a little stomach bug going around RMH. She feels perfectly fine after throwing up though and it earns her a ticket into bed with me or her dad (we try to keep her in her own bed or we'll never get her out again, but I have to admit that on those occasions when she is in bed with me, I LOVE it).

Ginger took the girls in a wagon to get groceries


This one of destiny looks like a Polaroid from the early 60s

Stefan gets some cool effects on his phone



 
Looks peaceful right?  Threw up an hour later!

So, please keep up the positivity and thank you so very much for supporting and praying and rallying with us for this little dolly!!

34 comments:

  1. Thank you for continuing to keep us updated. I am sorry to hear that some are giving up but wanted to let you know that we are not! We will continue to pray for Elle and her recovery. Be strong, we are thinking of you!

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  2. Praying for you all today, that God holds you in the palm of his hand.

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  3. I'll be praying throughout the day today for your sweet little Elle. Praying that the line changes/surgery go smoothly and you are able to keep them from damaging her any more than necessary. Praying for strength for you, her parents, for today also.

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  4. S and
    B and darling girls: Fingers crossed about today's procedures. God will guide the surgeon's hand, all will be well.
    I am glad Ginger and Destiny are such a big help to you! Taking the girls in the wagon to get groceries! What a brilliant idea! Good for you, Ginger!
    Remain hopeful, get some rest! Little Chloe vomiting? That's one thing I never saw after her baby days of spitting up! Hope she has a good little immune system and recovers...
    I confirmed my flight and will be with you at 1:36 pm on November 30th, 26 more days!
    I finished Gil's birthdy trifold, it looks pretty good, he was a total tow head in his baby pictures! He and his siblings were so cute!
    We have been brushing Phoebe and his mats are a bit better. Boy, does he love the brushing!
    We miss you all and pray multiple times a day for our beautiful grand baby, Elle. God bless all of you for your bravery and courage! Love you all from Grandma and G.G.

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  5. We continue to pray for Elle and your family! Hoping all goes well with the line changes.

    Julie Williams
    www.caringbridge.org/visit/mollywilliams

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  6. Prayers have been said. I hope today goes as smoothly as possible and this is a step in the right direction.

    Cathy
    Mommy to 3 in NC

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  7. Praying, praying, praying.

    Elle- Hang in there sweet girl. I will be thinking of you all day. Sending you hugs, kisses and large doses of love. Can you feel it?

    Denise WI

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  8. I am praying that all goes well with the line changes and also that you remain strong and continue to trust in the Lord. Thank you for your updates.

    Alice
    Grandma to 5 in California

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  9. Dear Becky: Thanks for the update. I will be saying extra prayers today for your precious little girl. So sorry that her skin is breaking down so much. How much do you hate EB???
    Don't forget the EB prayer warriors are out here praying for Elle every single day. We love your daughter so much. All EB children are so so special.
    Keep the Faith. God Is Good Love and Peace Leah's Nana

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  10. Becky and Stephan, I hope you can feel our love and prayers. We appreciate your updating the blog during this troubled time. God bless your brave little family. Hugs to all of you; miss you terribly.

    Aunt Lavonne

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  11. We will never give up! We will believe and pray and we will always keep the faith that Elle will overcome all of these battles. She is amazing and strong, we love her so much and all of you. We will pray for the doctors and staff to do well for her today during her line replacements, just remember you are not alone, we will always be there with you in spirit. Miss you and wish we were there to smother her with all our love.
    Goodluck today, I know it is hard but you are all so strong and brave and I know God is watching over sweet baby Elle.

    Love,
    Auntie Timea

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  12. Hello Pop family,

    We keep Baby Elle and you all in our prayers! Thinking of you a lot and we pray that God will strengthen you and give you the desire of your hearts and our hearts, that Elizabeth will heal from this condition.

    Much love,
    Manuela and Alex Szabo

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  13. I am so very sorry to read these lines. Reminds me of Bella. I hope you are responsible parents and know where to set the 'line'. The very best solution would definitely to be recovery of all this. Fingers crossed.

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  14. Dear Becky and Steve,
    You are held tight in prayer, and held tight in the arms of a loving God.
    Pastor Scot

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  15. Praying for God's grace, strength and peace for your family and precious Baby Elle.

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  16. Hi! Visiting from Bella and Daylon's blogs....have been following Miss Elle for a couple of weeks. My prayers are with her and your family.

    I'm so sorry she is going through this and I'm so sorry you are having to deal with EB.

    Elle is beautiful! Obviously, she is well loved by many and well taken care of. I will be keeping her in my prayers.

    I wish I had some magical words to say but wanted to let you know I'm out here thinking of you...

    Kim from CA

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  17. Please know that you're not alone. Many are spiritually with you and praying for you all, as we are every day. We pray for your endurance to be strengthened and that you'll have the peace that you need as you watch your angel go though this ordeal. We pray for the doctors to be inspired that they may know the best treatments to give her. We pray that her body will accept the new cells as her own and that her organs will be able to function properly.
    We pray for a blanket of peace to be over Elle and surround her with the ministering angels and Heavenly Father's love. We add our strength to yours and pray that you'll also be inspired as to what Elle needs.
    May God bless you in abundance.
    Cathy and Theresa in Utah

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  18. Little Butterfly, we didn't know you only through the daily blogs and wonderful pictures. Wishing Peace with your family at this time.

    Love, Judi, Steve, Abigail and Sarah Vigh.

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  19. I have only been following baby elle for about a month now, but she has deeply touched my heart. i pray every day for her along with prayers for Tripp Daylon, Jonah, and Bella's family. I found all through Tripp as he lives in Louisiana where i live. hugs to all.
    shirlyn from louisiana

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  20. I wanted to let you know that your beautiful daughter Elle is in my thoughts and prayers. What a sweet baby!! So gorgeous too. Be strong.

    Take Care,
    Amber McLaughlin, CA

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  21. I continue to pray for your sweet baby Elle and your family. May you each have the strength to overcome this.

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  22. Julie, in MarylandNovember 5, 2010 at 4:14 AM

    I have been following your posts about Elle, and all of the sweet kids with EB who are undergoing the BMT trial. Please know that I am praying for Elle's recovery, for wisdom for her doctors, and for strength for you as you watch over her. I hope you can feel the prayers of all of us out here holding you up to God.

    Julie

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  23. Dear sweet Pop Family,
    I am praying for all of you as we await news of the line changes yesterday. Praying for God to watch over your sweet baby Elle and to wrap his comforting arms around you.

    Kim M
    Waterford, MI

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  24. Sending lots of positive prayers to Elle. Stay strong and don't let EB take over the fight.

    Missy & McKenzie Gray
    Lock Haven, PA 17745
    ahope4mckenzie.com

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  25. Hope yesterday went well. Elle is such a strong little lady and so lucky to have a wonderful family.

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  26. I fell in love with Elle the moment my eyes saw that precious child! I pray for her every day, through out the day. I pray for you, her family, also. May God bless you with peace of mind and heart and Elle with a full healing! Thank You God for all Your gifts in the past, the ones we have now and for the ones we will receive.
    Lots of Love and prayers,
    Mandy

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  27. Becky and Steve,
    I've been praying for Elle and your family ever since you started the blog. You were especially in my thoughts yesterday knowing what Elle was having to go through. Take care-
    Sincerely,
    Rachel (Baton Rouge, La.)

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  28. I will be praying for Elle throughout the day and for you that God will give you the strength that you need and peace in your heart.

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  29. I'm here from Baby Daylon's blog, and glad to offer my prayers along with the others. She is a true beauty!

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  30. Thinking of your family and sending positive healing vibes to Baby Elle.

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  31. Praying and praying and praying still.
    A

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  32. I'm praying that Elle's procedure is/was successful, and that it will help her overcome this latest hurdle. I haven't posted very often but ck on Elle almost daily. Thank you for updating so that we can pray for specifics, as well as her healing in general. God bless your precious daughter, and strength to you and your family as you continue this BMT journey with Elle.

    Donna Tadlock
    Millbrook, AL

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  33. Whishing with all my heart that Elle's procedure goes well

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  34. Thinking of you and your sweet Elle all the time wishing everything is going well and that she is improving.

    Alexandra in Australia

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