Sweet Baby Elle's Service

Elle was honored beautifully by many on November 20. The morning was a quiet, close family gathering at our house, then we had a graveside service at Odd Fellows Lawn, followed by a lovely memorial service and Celebration of Life at our church with a reception that followed.

                                      

Pastors Frank (reading) and Scot (praying over the urn vault)





Stefan singing his song to Elle, You Are My Sunshine

My brother-in-law, Adrian created this gorgeous tribute to his niece

 


Elle and Chloe's cousins form their dad's side

Beautiful pictorial created by Elle's Godparents

The services were beautiful and we felt that Elle was honored well.  Many were present and there was clearly a lot of love for this little girl, sadness at the loss of her presence, and gratitude that she is no longer in pain and with God. My mother made up this song and used to sing it to Elle and I love it:

God sent us an angel
Her name is Baby Elle
Only look upon her
And you can tell

Baby Elle is special
She comes from up above
Gaze into her baby eyes and
You'll fall in LOVE  



Megan from WV, drew this in the sand while on vacation, for Elle to see from Heaven

We are still settling in.  Our car arrived from MN FULL of stuff that I don't know what to do with.  Every day, I organize a little but it seems like a drop of water in the ocean!  Of course it doesn't help that Chloe unpacks my charity boxes as fast as I can fill them...
Chloe remembers everyone and is having a good time with family again, as are we.  Stefan is feeling a little better and starting back to work slowly.  We are trying to feel normal, but we know it is going to take a long process and time. 




Elizabeth's California memorial service

Dear Friends and Family,

We will be honoring Elle in a memorial service on Saturday, November 20, 2010. The service will be held at St.Johns Lutheran Church at 11:00. The church is located at the corner of 17th and L streets with parking in the garage behind. All who wish to honor Elle are invited to attend.

1701 L Street
Sacramento, CA
95816
                                               


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We were blessed to have a beautiful service in Minnesota; thank you to those who were able to attend and also to those who helped coordinate. It was simple and perfect.

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It is good to be back with family again although I must admit that I miss Minnesota. I like many things about the Mid West. Stefan and I were so looking forward to the snow, and wouldn't you know it, it snowed the night we left!! We will just have to go to Tahoe to use our snow gear I guess.

Unfortunately, Stefan will not be sledding or snow boarding soon.  He had a little bad luck a couple of nights ago and was hit pretty badly by another vehicle while turning into his parent's dirt road.  He is doing a little better now, poor guy.

Peace!

Reunited with cousin formerly known as NAY! Growing up, she now greets him, "Hi Nathan"

Pheebs always at my side now.  I reached into this bag of paperwork to find a fuzzy face.

Just more cute pics of Elle

november 8

Elle's Minnesota service will be held at 10 AM on Wednesday, 11/10/10 at Normandale Lutheran church. 6100 nomandale road Edina,MN 55436 (952)9231697.

Day +43 November 4

After a valiant fight for nearly eleven months, darling Elle is no longer on pain medicines,  no lines, no tubes, no machines.  Elle is out of her cocoon of bandages and has flown to heaven with butterfly wings.

Last night at 5:18 PM Elle died in my arms, with her dad whispering loving comfort in her ear.  She held our fingers and squeezed till the end.  She did not look scared, only peaceful.  And she knew we were with her. 

Happy Elle on her first day of the clinical trial, September 13, 2010

Her lines were successfully replaced and working well and her yeast it seemed was finally at bay. But her blood pressures were so low for so long. Her body finally gave out once she was placed back on Prisma and we knew it was time to say goodbye and allow her a calm, comfortable passing. Really, we could not have asked for a better death for her. We were both there, we fought as long as was appropriate, and were able to get her very comfortable and hold her before she died as we haven't done in so long.

Many staff were present.  She had a WONDERFUL care team.  RNs Gretchen & Jody, Dr. Steiner, Dr. Nahara, Dr. Rajpal, Dr. Gupta, Sheena RT, and later Dr's Miller and Tolar, Nurse Alexis were there in the room, caring and  most of them crying. So many other nurses on both the PICU and BMT units took care of her with astounding care. 

Pastor Dale was immediately at our side and Stefan's sister Ginger and Karin soon after.  We prayed and cried and attempted to let go. Pastor performed Commendation of the Dying.  Later Family Child Life and her nurse made prints and plaster casts of her unbandaged feet and hands. Chloe made hand prints as well.  We bathed and dressed her one last time, finally able to dress her with the seams in and without worry of hurting her.

Chloe is doing very well considering. She is so intuitive. A week or so ago, at bedtime prayers, when we reached the part about asking to heal Elle or ease her suffering, Chloe said, " Mama, Baby Elle might go to heaven" and nodded. I was taken aback. I told her, "we are praying and the doctors and nurses are working very hard to help her. She may get much better and some day come home and play with you.  Or, she may go to heaven and have no more pain. Chloe said,"yes, she might go to heaven with Bella". She said this as she was stroking my hair then pulled me down to kiss me. She totally blew me away; a complete role reversal. And she was right. I guess she is much closer to the spirit world than I am, only having been on this Earth for three years. When Family Child Life at the hospital prepared her for Elle's death, she seemed to get it right away. She and her cousin drew pictures to give to Elle.  Chloe's was of swans.  When she finally came into the room, I was holding Elle wrapped in a soft blanket and she walked up and said, "Oh, Baby Elle is born". What a perfect way to put it. She asked to hold her hand, was delighted that we dressed her in the polka dot dress that Chloe bought for her, and held her and kissed her head. It was beautiful.

We will miss her forever and are so comforted in the thought that her short life impacted others so much more than we could have in a long lifetime.

I believe that Stefan's and my grandparents were waiting for her in heaven with open arms. I believe she walks with Jesus and rejoice that she is in paradise without suffering. I believe she knew how much we loved her and always will and will be waiting for us when it is our time. I also believe that worldly time is different from spiritual time and a day unto the Lord is like a thousand years.  Maybe to Elle, no time really will pass until she sees us although it will be an eternity to us.  I believe God is good, and that He is crying with us even has He delights to have Elle with Him again, and will carry us through the pain.  There are so many things that I feel certain of.  It is like light in the darkness.

Her last look at the world

                                     

Elle's hand in Chloe's

Nurse Erin wrote this on the board in Elle's room the first day she took care of her and she was the final nurse to care for her

This was the view from the PICU hours before she passed



We will miss her for the rest of our lives.

                                          
Service arrangements will be announced.  Thank you so much for all of you who have loved and supported Baby Elle.

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!!

Day +41 November 2

Day +40 post transplant and +38 in the ICU. 

Elle still needs all of her blood pressure meds and fluids intermittently to keep her pressures up.  She is still on Prisma for dialysis.  She still can't take feeds in her gut so she is on TPN and lipids (IV nutrition).  She still has yeast although it is taking longer to grow out this time.  She has kind of plateaued. 

She had an abdominal ultrasound because it turns out that she needed a CT with contrast and her kidneys could not handle the contrast even with protective medications.  The kidney docs said NO.  The last time she had an ultrasound, she bled and bled so we were very hesitant to do another, but the Edlings had a great suggestion to use Magic Gel Sheets, a wound dressing that barriers the skin from the probe but still allows the U.S. to get good images.  It worked and she did not bleed, but it was uncomfortable for her.

The chest Xrays revealed no issues with yeast collections in her upper body, but they wanted an abdominal ultrasound to confirm the liver, spleen, kidneys and bladder had no visible yeast colonies (balls).  There were none.  Also, the blood flow in her liver is moving correctly, indicating that she no longer has VOD!  These are both bits of good news. 

However, she has been fighting this yeast for nearly 3 weeks now and she still has these low blood pressures.  I'm getting the feeling that some of the doctors think she is circling the drain.  I don't think so, Stefan doesn't think so, Dr. Tolar doesn't think so, and I don't think Elle thinks that either!  She still moves and looks and squeezes my finger like a little fighter.  She breathes over the vent sometimes, she holds her legs up sometimes, and she even coughed yesterday after being suctioned.   We are not willing to stand by and let her slip away when we know there are still lines that can be changed and solutions to be found.  We are not giving up and I hope none of you are either.  If the time comes when she is tired of fighting and needs to rest and be comfortable, we will help ease her path, but she isn't there now.  Another junctional baby we know was at a scary point several times during his hospital stay and he is doing very well now -yes Daylon, I'm talking about you...We will keep strong as long as it is appropriate to and see what Elle can do.

In other news, Ginger and Destiny are here - yay!  Already, I am getting to bed earlier.  She just so fluidly gets things done as we talk and I was in the bedroom with the girls and came out again and the main room was all clean, dishes done, and laundry done.  I love Stefan's sisters (Don't worry Lis, you are still number one sister)!

Chloe and Destiny are having a great time together too.  Destiny has grown a whole head taller since I last saw her; way taller than Chloe. There was a small mishap in the tub earlier with a little splashing and crying involved, but they both apologized and forgave each other and all was right again.  They are so cute.  I thought Destiny would want to sleep in Chloe's bed with her, but she wanted to sleep with her Mommy.  They are both asleep now, little angels. 

Chloe and Destiny hugging in matching PJs -The girls look like frogs themselves, I am having camera and computer trouble today.



Day +40 november 1

Elle's baby is still at her side -her stuffed toys are well employed, holding up tubes, blankets, and tenting blankets off of her legs.

Today will be short because, well, it is 5 AM and I am just getting to bed.  We haven't wanted to leave her much.  Stefan was by her all day and I all night.  Stefan and I usually balance each other and if one is down the other is strong.  I am still optimistic but we are both worried and it is wearing.

Elle is about the same.  Currently there is no new plan except CT this week.  Her blood pressures are still crummy and we're waiting for next culture and biopsy results.  Dad has gone but Stefan's sister Ginger and our niece Destiny are coming!  Chloe is very excited about seeing her cousin.



Dad took this of Chloe before he left

                                                      

Chloe playing with her new stuff from a care package from home.  Thank you Cindy, Vickie, Heather, and Margit!