Sticky Pixy and ZB Update Thread

[y4m]

Those of you who are getting direct updates from Pixy that you want to share, please put them here so that others can quickly see them.

This thread is not for discussion.  Just updates.  Thanks.

Note, if you're an app user, you can see this by clicking "stickies" within the board.

[secretlyevil]

cheer cards they have received to date:

[secretlyevil]

One more update for what's going to happen in the future and then I'm going offline for a while. The next part is a bit graphic, so if you're squeamish, please don't read further.

Since ZB's perforation was in her intestines they had to cut her belly open. When they do this type of work, all the intestines swell. It's normal and expected. So her belly has been open with her intestines out until the swelling goes down. Her swelling is going down enough that they're starting to look at time frames for closing her up. They're projecting sometime this weekend, or maybe Monday.

She will be intubated until then as they don't want to remove it, and then just reintubate her for the surgery.

The staff here has been amazing. Seriously amazing. They take the time to explain what they're doing, they explain it in ways we can understand, and they always follow up with us.

[secretlyevil]

Morning update: stable through the night. Later today they will do an MRI to try to figure out the state of her brain. I'm praying to God to give me the strength to get through this day and accept what will come.

[pescalita]

From FB: MRI scheduled for 8pm MST.

[Deleted]

From her FB page
I'm going to be honest right now, because I don't know if I'll have the will or the heart or the wherewithal to post when it happens. If we get bad results back from the MRI, and this is a very real possibility moreso than the recovery, we are going to let her go. We won't have the MRI results until tomorrow. I'm going offline now to spend time with my child while I can, because I don't know if I'll be able to get more.

If you have babies, please please love them all that you can. Give them hugs and kisses until they squirm and then give them more.

[PrimRoseMama]

Prayers for a peaceful passing. I'm so very very sorry!

[cinnamoncox]

No no no no
NO!!
Oh this is just too horrible.
I can't even express my heartbreak for pixy and mr pixy.
God bless their lovely angel

[ijack]

I can't tell if this has been posted or not, but she passed at 1:57pm.

[NewOrleans]

From Pixy 13 minutes ago:

At 1:57 pm today, I snuggled my daughter as she transitioned into peace. I'm broken.

[HiC]

**So many tears** Those are words a mother should never have to say. I'm so sorry.

[escrow]

This makes me so so sad. I wish there was something I could do to ease their pain

[TheSeaward]

Jan 18, 2014 18:42:48 GMT -5 NewOrleans said:

From Pixy 13 minutes ago:

At 1:57 pm today, I snuggled my daughter as she transitioned into peace. I'm broken.

How sad, but at least the baby left this world the same way she came into it, in her mothers warm and loving embrace.

[malibu]

God. Poor Pixy.

[phoeny]

Oh my gosh. T&P for Pixy.

[heyjude]

Just wanted to see how the pixy family did last night and today? Do they have family with them. Somehow I feel better if I know they are not alone.

Been thinking about them all weekend almost nonstop. I think about them every time I catch my DDs face or take a moment to watch her play. I'm rooting for Denver today in their honor.

[Deleted]

Updates from today (Sunday, 1/19/14) meeting of the CO locals - please read all the way through, as any questions you have about when/where/how-to are likely below. 

***If you need information or answers not posted below, please PM me. I may not have the answer immediately, but I can get it from one of the primary organizers.***

The meeting was organized by a few who are in touch with Pixy and aware of her immediate wishes, but who also wanted to gather friends together to think of any/all bases which should be covered for her. It was a great meeting, lots of good ideas of how to support without overstepping, and below is the initial/primary result of those efforts - thanks to andrealynn and others for aggregating it all:



A Care Calendar has been set up:  www.carecalendar.org   CALENDAR ID: 171520     SECURITY CODE : 3306.  
Use this tool for Meals, Memorial Ideas, and Other Ways to Help (below).


=====================================

Weekly Cheerleaders

*We are asking for people to sign up and send something that would bring Pixy comfort during this time. If you
decide to sign up for this, please know yourself well enough to know that you will definitely follow through. If it turns
out that you cannot follow through, please contact Lisa so that we can get someone else to take over your week. This
ball CANNOT be dropped.


=====================================
Meals
-Freezer meals:

    *Please limit yourself to small or even individual portions. There are only two of them.

    *Breakfast and lunch are always good, in addition to dinner

    *Allergies: Pixy is allergic to cinnamon.

    *Please no styrofoam containers. Recyclable containers are best.

-Fresh food: Fort Collins locals can deliver fresh food on a regular basis (weekly)



    *milk, eggs, greens, fruits, veggies




Local Meals (for those in the immediate Fort Collins/Denver area):
   *People to deliver from Denver to Ft. Collins:

    ~Andrea

    ~Angelika: Next 5 weeks

    ~Erica: 1/25 and 1/2




Distance Meals (for those not in the Fort Collins/Denver area):


    *people that want to contribute from a distance can sign up for a date and send gift cards to Pixy c/o Church of
Cupcakes (see the tab in the Care Calendar referenced at the top). Please make sure to allow time for it to be routed to Pixy.

Here are the local restaurants to Pixy you can get gift cards for to send to Pixy c/o Church of Cupcakes:
    *Silvermine Subs

    *Pizza: Pizza Hut, Papa Johns, Dominos

    *Applebees

    *Olive Garden

    *Link: www.grubhub.com/search/80526/?filters=openNow

=====================================

Memorial Details

A date for a memorial/service has not yet been set; please stay tuned for when it is as the details will be posted.

However, you can begin to send items listed below to the Pixy c/o Church of Cupcakes address in the Care Calendar (referenced at the top).

    *pictures for slideshow

    *purple flower bulbs
    
    *prayer shawls

    *paper cranes/other origami (may be too short of notice for out of towners; these are significant as a light-hearted holdover from how people were decorating Elise's room)

    *wear purple to the service or that day if you can’t attend

    *No cut flowers

If you are planning to attend the memorial:

    *If you have a room to offer to someone coming in from out of town, please post in the document on the Love and Light Facebook group so that those coming in to town can coordinate.
(PM me if you don't have access to this group; I can have you added.)

    *If you are planning to stay in a hotel, comment in the document in the Love and Light group. We may be able to coordinate a block of rooms at a discount if there is significant need.

    *If you are planning to come in from out of town for the memorial, please enter this information on this google document: docs.google.com/forms/d/1oeEDB9Lgr_MgQ0Dzk0W4PhN46E9Aaiw4YfLl2m4G1-4/viewform.



=====================================

Other Ways to Help

    *Find pictures/stories to save for a book
    *Poudre Pet Feed gift card (for feeding Pixy's furbabies)
    *Participate in dips


=====================================

Local Rep for Each Board for Information & Questions

(please let us know if any board is not listed below; we'll line someone up) This is not specifically for the monthly "love on Pixy" board assignments set up in another thread (I'll go get that link in a second so it's referenced here).  It is to get you the information or answers you may have that aren't addressed in these updates. 

These people have volunteered to be local contacts for information and questions.  

*CO Nest: Lisa/ asilsjf

*EFF: Andrea/ andrealynn

*CEP: Rachel/ @ladydisdain

*TBCDFB: Rachel Black

*Pets: Brittany/ velocitygirl

*Married Life: Kelly/ litebrite

[gpw]

thank you, @ladydisdain...so much. Everything you CO ladies are doing make it possible for us to let Pixy know how much we care. I appreciate that!

[twotrue]

@ladydisdain. Can you please explain the significance of Christmas ornaments?

sent by phone

[Deleted]

Jan 19, 2014 21:23:00 GMT -5 asdfjkl said:

Thank you for this information. This massive coordination is so wonderful. I am in awe.

It's a recurring sentiment - how much she is loved by so many. Power of the internet, and the good people in it.  

[Deleted]

Jan 19, 2014 20:52:53 GMT -5 twotrue said:

@ladydisdain. Can you please explain the significance of Christmas ornaments?

sent by phone

Pixy loves Christmas, so this was considered an easy, beautiful, and tangible way to show that at the memorial. Something she can keep and hang on to as well. (based on answer provided)

[AJL]

I'm sorry, but I couldn't find this information in any of the posts. @ladydisdain, can you tell me what a dip is?

[Deleted]

Jan 19, 2014 22:13:50 GMT -5 AJL said:

I'm sorry, but I couldn't find this information in any of the posts. @ladydisdain, can you tell me what a dip is?

I believe it has to do with another group she's involved with; frankly I have no other info from that. But that group would know what a "dip" is, so it's all good.

[AJL]

Jan 19, 2014 22:16:43 GMT -5 @ladydisdain said:

Jan 19, 2014 22:13:50 GMT -5 AJL said:

I'm sorry, but I couldn't find this information in any of the posts. @ladydisdain, can you tell me what a dip is?

I believe it has to do with another group she's involved with; frankly I have no other info from that. But that group would know what a "dip" is, so it's all good.

OK. Thanks.

[Deleted]

Jan 19, 2014 21:29:49 GMT -5 @ladydisdain said:

Jan 19, 2014 20:52:53 GMT -5 twotrue said:

@ladydisdain. Can you please explain the significance of Christmas ornaments?

sent by phone

Pixy loves Christmas, so this was considered an easy, beautiful, and tangible way to show that at the memorial. Something she can keep and hang on to as well. (based on answer provided)

Slight change - we've removed the ornaments from the list of things to provide. But please go ahead with the other items listed.

[winecat]

Update from Pixy at 8pm 1/19/14:

I'm posting this not to tell you all how to interact with us at the moment, but to help you understand that we might not be ourselves. It was in the hospital bereavement packet that was given to us. So far, DH and I have found a lot of it to be true.

A Bereaved Parent's Wish List

1. I wish my child had not died. I wish I had him/her back.

2. I wish you would not be afraid to speak my child's name. My child lived and was very important to me. I need to hear that he/she was important to you also.

3. If I cry and get emotional when you talk about my child, I wish you knew that it is not because you have hurt me. My child's death is the cause of my tears. You have talked about my child, and you have allowed me to share my grief. I thank you for both.

4. I wish you would not "kill" my child again by removing his pictures, artwork, or other remembrances from your home.

5. Being a bereaved parent is not contagious, so I wish you would not shy away from me. I need you now more than ever.

6. I need diversions, so I do want to hear about you; but I also want you to hear about me. I might be sad and I might cry, but I wish you would let me talk about my child, my favorite topic of the day.

7. I know that you think of and pray for me often. I also know that my child's death pains you, too. I wish you would let me know those things through a phone call, a card or note, or a real big hug.

8. I wish you would not expect my grief to be over in six months. These first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of my child until the day I die.

9. I am working very hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child, and I will always grieve that he/she is dead.

10. I wish you would not expect me "not to think about it" or to "be happy." Neither will happen for a very long time, so do not frustrate yourself.

11. I do not want to have a "pity party," but I do wish you would let me grieve. The pain is overwhelming; it will take time to learn how to survive with this nightmare.

12. I wish you understood how my life has shattered. I know it is miserable for you to be around me when I am feeling miserable. Please be as patient with me as I am with you.

13. When I say, "I'm doing okay," I wish you could understand that I do not "feel" okay and that I struggle daily.

14. I wish you knew that all of the grief reactions I am having are very normal. Depression, anger, hopelessness and overwhelming sadness are all to be expected. So, please excuse me when I'm quiet and withdrawn or irritable and cranky.

15. Your advice to "take one day at a time" is excellent advice. However, a day is too much and too fast for me right now. I wish you could understand that I am doing good to handle an hour at a time.

16. Please excuse me if I seem rude, certainly not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away, I wish you would let me find a quiet place to spend time alone.

17. I wish you understood that grief changes people. When my child died, a big part of me died with him/her. I am not the same person I was before my child died, and I will never be that person again.

18. I wish very much that you could understand; understand my loss and my grief, my silence and my tears, my void and my pain. BUT I pray daily that you will never understand.

[ijack]

god, I just want to wrap her up and shield her from all the pain she's experiencing

[Deleted]

Pixy just posted the memorial info:

ZB Memorial
Saturday, January 25, 11:00am
First United Methodist Church
533 Grant Ave
Loveland, CO 80537

RSVP to the Memorial here (not a formal one, just to get a head count for food, etc.)

Donations just for the Memorial: Paypal to asilsjf [at] gmail [dot] com
(this a separate Paypal from other donations strictly for memorial expenses; any excess will be given directly to Mr. & Mrs. Pixy)


If you are planning to attend and haven't yet visited the FB page, Love and Light for ZB, please head there for helpful info as well as coordination of ground transport/pooling to the service.


What to wear:  We are asking everyone to not wear black. That's not our little girl. She loved pink and purple, but wear any color you like. The invitation is open to anyone who would like to attend.

[Deleted]

C&P from Pixy's post in the monster "February" thread:

So here's what I need:



I need people to do what feels right to them. If running a race in her memory is what you need to do, please by all means do it. If you want to give someone a cup of coffee as a RAK, please do so. I don't need any tokens, or pictures, or mementos from those. (Ok, maybe the race pictures because I always like how people are so damn happy to reach the finish line.) RAKs are RAKs, do it for the other person. Please don't record them.



Spread awareness. Spread awareness of donating blood, or organs, or tissue. Be a voice to what *you* believe in. Do it in memory of my daughter if you wish, but make it personal to you.



I will always remember my daughter. I don't need stuff to help me do that. What I have, her two favorite stuffed animals, her princess crown, her ballet shoes... those are hers. No one sent those to me. That's how I will remember her.



My husband and I were laughing this morning that people have donated so much stuff to us, from their hearts and we're grateful, but we don't have any tp in the house. We're down to our last roll. So the tp conversation is appropriate here.



Read more: pandce.proboards.com/thread/280065/february-ceps-month-cheer-package?page=9#ixzz2r4EHRit4

[Deleted]

Also, just a little clarification (and I totally now realize it would have been better to post complete, detailed minutes from the local meeting we had on Saturday):

- As mentioned in the FB group, Pixy's BFF of 15+ years is one of the "local leaders" I've referred to in other posts. She (asilsjf) and andrealynn are working together to be the direct conduits to Pixy for the veritable masses the rest of us represent.

That said,

- Pixy has her own wishes, and I'm so glad she's able to voice them (I don't know that I'd have the wherewithal to do so). She of course is the "source of truth" for what should/shouldn't be happening. The rest of us humans may err on the side of trying not to bother her with details, and frankly it's better (IMO) for her to be able to intervene online - imagine if this were 20 years ago with no internet!

- At the local meeting, a board rep was chosen from those present - I got asked if I'd do CEP, I said yep. secretlyevil was one who PM'd me about the other idea for the local board assignments for each month going forward, and apparently I got tagged/tied to that endeavor, so she said she'd help with it. Help she did, and now we're at 11+ pages. 

- I'm frankly glad CEP was the first board up for the monthly board thing. If anyone was going to drill down in emphatic, passionate, and fastidious fashion on the who/what/when/why-the-fuck-are-we-planning-all-of-this-stuff minutiae, it was CEP. Best to do that now than have it happen in four months when the cupcake shop is overrun with glitter and ribbon.

- A local "bus" is being coordinated for any local Nesties who know Pixy to carpool to the memorial - the idea was inspired by a local Nestie who figured it'd be the 'green' way to go for those who want to get up there and use less gas and less cars. So for those envisioning some kind of groupie tour and GTG - that's not happening. 

- The Care Calendar and memorial information was posted after the local BFFs talked to Pixy and got with the other locals. I'm happy to pull any of it down as soon as Pixy or her BFFs advise I should.