Videos and Frazer's Post

So Frazer wrote something the other day. and it's beautiful..and for those of you that might not have seen it, I'm sending it out here too. There are 3 videos that were made for us back in 2015 and I'm putting the links at the bottom.  We had moved into this house just 3 months prior and there are still unpacked boxes and empty walls everywhere.  Just a month before moving in, we finally found out why Milla was suffering from seizures and losing muscle control.  We learned the words, Batten Disease.  And the very day we moved (literally furniture was being carried into the house) we received a phone call and learned Elle had Batten Disease too.  I will never forget that day, that moment, but the following days, weeks, holidays, months are a blur.  Milla's 4th birthday was the very next day and 2 days later, Elle had her first (and it was massive) seizure.  There are no words to describe this time in our lives.  We were devastated and in utter shock and yet our beautiful families and our beautiful friends and community quite literally held us up and held us together. I probably could write an entire book just on those months alone.  

Even in the pain and heartbreak, these videos are so beautiful and words cannot describe how thankful we are that we have them.

Frazer's post:

Oh man, 6 months since I last held Elle Belle and three years since holding Milla Willa....I have so much to say and yet I am at a loss for words. The video was shot in February 2015. Through the suffering that continues, we were sooo blessed with so much. Thank you Becky Cope English and Chris Braly for this gem and two other videos. Such a treasure beyond words. Some day, I may pour my heart out for those that care, but for now, I am still learning lament and searching for God’s glory that follows And comes through lament throughout His word. Lamentations 3 is such a picture of my heart. And like the author, I tell my soul verse 22: “The steadfast love of the Lord never ceases; his mercies never come to an end;”. In the middle of a book on lament is verses 21 through 41. Unreal. I miss them so and yet they are healed and at the table with our Savior. How I long to join them!

https://www.youtube.com/watch?v=739edy2QHsI

https://www.youtube.com/watch?v=gfUBnjhVQ6g

https://www.youtube.com/watch?v=cCclwRwJqjY

It's Milla's 9th Birthday Today

9 years old.  That's how old our Milla-willa would be if she were still with us.

But she has also been with Jesus for almost 3 years.  

9 years guts me but 3 years brings me joy and peace. Praise the Lord for His goodness and amazing grace.

Much love and yummy donuts to you on this November 2nd,

Dana

 

 

Milla's House Fundraiser with Holland and Birch Jewelry

Hey guys! Holland and Birch is raising funds for Milla's House through their jewelry!  Suzanne (the owner and designer) has done this in years past as well and we are so thrilled that she is continuing that this year to help out Milla's House.

You can go to her website and check out the items that she is selling for Milla's House - 20% of the profits will be donated.

https://hollandandbirch.com/collections/millas-house

She is adding 3 awesome new items! The Moon earrings, the Elle cuff (you can choose from 5 different words/phrases to have inscribed on the cuff) and the Milla and Elle charm necklace.  I will link the items and include the older ones as well but all are accessible from the fundraiser part of the website - just scroll down the list for Milla's House.

Side note about the 'Moon' earrings: At Elle's funeral, our pastor talked about the concept of 'the moon is round'...that even when you can't see the whole moon, you know that it is still there and is always round.  It is the same with God and His love and His goodness.  Even when you can't trace the hand of God, trust His heart.  God remains good, the same yesterday, today and tomorrow even in the midst of the death of our daughters and the long road we have traveled. The moon is round. 

(And when I saw these earrings from Suzanne, they immediately made me think of little moons that may look like crescents but may look full depending on your angle...but they are still round. I could talk for ages about all the things my heart's eye sees when I look at these earrings...from their shape to the fact that they are bent - but not broken - and still so beautiful.)

Anyway, here are the links for the new items:

https://hollandandbirch.com/collections/millas-house/products/the-moon-earrings

The Moon Earrings

https://hollandandbirch.com/collections/millas-house/products/the-elle-cuff

The Elle Cuff

https://hollandandbirch.com/collections/millas-house/products/milla-and-elle-charm-necklace

The Milla and Elle Necklace

Here are links to the products from the past years:

https://hollandandbirch.com/collections/millas-house/products/second-story-bracelet-new-jade

Milla Second Story Bracelet

https://hollandandbirch.com/collections/millas-house/products/milla-cuff

The Milla Cuff

https://hollandandbirch.com/collections/millas-house/products/milla-minimalist-diamond-necklace

The Milla Minimalist Diamond Necklace

Thank you for helping us support Milla's House! Here is the link for Milla's House to learn more about who they are and what they do.  Also, see the trailer for the documentary on the Centers for Good Grief towards the bottom of the page!

https://baptistgriefcenters.org/center/memphis-tn/

Dana

 PS -These make great Christmas gifts! ;)

Aug 27th

Hey guys - what a sweet community you have been (as usual!).  Thank you for caring and loving and praying and sending sweet words and giving hugs and meals and all the things.

It's been a busy summer - we ended up traveling a good bit.  We went to the beach, went to Chattanooga, Birmingham, Maine and Colorado.  It was helpful and good to get away...thank you that helped us escape Memphis a little here and there.  But it was always good to get home too.

It's weird, it was always good to get home but it's also incredibly painful just driving around the city.  Thoughts will hit me out of nowhere that it's been awhile since I've driven a certain way since not having to take Elle to school or therapy, etc.  Or it'll hit me at a certain time that I should be at a certain place and then I remember.  It all happens in a split second but it is unnerving and can rattle me for awhile after.

Grief looks like so many different things.

Sometimes it's exhaustion. Sometimes it's lying in the bed for 3 hours in the daytime, not sleeping but not doing anything else either.  Sometimes it's sobbing until you can't breathe and you feel like you might vomit.  Sometimes it's stoicism.  Sometimes it's a smile and giggle at a picture, video or memory and/or spending an hour looking through those old pictures/videos.  Sometimes it's the feeling that if you don't move and distract yourself whether it be cleaning up or running in 105 degree heat or just driving, you might lose your mind.  Sometimes it's distracting yourself with a movie, a book or time with friends.  Sometimes it's anger.  Sometimes it's wondering what those silly girls would be like at ages (almost) 9 and 7 ½ if they were disease-free.  It's wondering what they are up to these days in heaven.  It's truly rejoicing that they are there with Jesus and healed but at the exact same time, feeling the very real physical pain of their absence. It is a pain like no other. Sometimes it's embracing and losing myself in the quiet and loneliness and sometimes that quiet can be suffocating.  Etcetera.  Etcetera.

I've been wanting to write here for awhile but just couldn't get myself to even start until today.  I'm sitting at Ann Carlyle's ice skating lessons at 6:00 on a Tuesday evening and thought I'm just going to jump in and see what happens - fully aware that I might write one sentence and slam the laptop shut.  (PS - I know it is Wednesday night...I needed a minute to process it all.)

I wish I had words for all the things that are going on in my heart, my mind, my soul, my body and I just don't.  I think that's one reason I haven't written for so long.

Of course, a lot of people ask us how we are doing and how Ann Carlyle is doing.  And really the most succinct thing I can say is that I feel like most of the time, we are grieving in a healthy way.  I think.  Most of the time.  We still see Angela, our counselor at Milla's House, regularly and Ann Carlyle has seen her counselor a bunch as well.

Ann Carlyle started school a couple of weeks ago and she is loving it.  Thank God for her school and her teachers.  She is keeping busy with ice skating and cheerleading for now...and of course wants to add violin, horseback riding, karate, obstacle course training (like American Ninja Warrior) and dance.  Needless to say, we had to narrow the field a bit!

The other answer I give to how we are doing is a cliche but it's true...we are taking 1 day at a time...one hour at a time some days.  It's something we've been doing for years now, so we know the drill.  It doesn't always make sense, how I feel day to day, but I will say being outside and physical on our trips this summer has been such goodness for my soul.  We enjoyed the ocean, saw whales, did tons of hiking and trail walking, climbed a few mountains, zip-lined, rode on boats on rivers and oceans, rode horses and ATV's through mountains, rafted rivers, did lots of swimming and some kayaking too.  Side note: all of those things except for swimming were done not in Memphis but in places with oceans and mountains and lakes and rivers and in the case of Maine, all of the above.  :)

Even though life feels a bit empty and quiet, I see the Lord's faithfulness and feel Him setting my feet on solid ground.  I have found myself in the mire significantly over the last few months, but He is always showing up...even when I resist His peace and restfulness.  That's what's so crazy...even when I want to stay in the mire, when I actually want to keep drowning, He pulls me out.  Thank God His love for me doesn't depend on my love or mental strength or determination or whatever to pull myself out of the yuk.  And morning by morning...He is there.  His mercies are there.  The pain is also still there and the loss and the absolute grief but again, He's there too.  And that is something really, really, really big.  Life-changing, life-giving, life-saving, life-sustaining big. 

Thank you all for asking after us and caring about how we are doing and for reading this.  :) It means so much to us to know we are still surrounded.

I'm going to wrap up now - I feel a bit ramble-y and to be honest, it's hard to bring all this to the surface and put words to it.  I'm not sure how much I will be writing from now on...might be a lot, might not.  But in any case, I have to say it again. THANK YOU from the bottom of our hearts.

Much love,
Dana
PS - Some of y'all may have heard this already but Frazer broke his collarbone a week and a half ago, had surgery to fix it last week and is doing great.
PPS - I have to include a picture my sister found the other day of me and Milla and Elle.  Elle is fresh.  I think this was our first day home with her.  Milla is 17 months old.  (Ann Carlyle had juuust turned 3 years old, but who's counting.  Our house wasn't utter chaos at all from that point on.  Nope.)  Anyway, I love the picture.  I love Milla's chunky, chunky hand on Elle's back and I love that Elle's eyes are fixed on Milla's even though she is just days old.  I love everything about it.

May 14th

I feel compelled to check in this morning although I don't have much to say.  I'm hoping the words will just come out as I type.

We are still very much in shock.  It doesn't seem real.  Nothing is normal.  And though we are thankful for the rest and deceleration of life's everyday demands, we feel like we are drowning a bit in the vastness of our days.

I catch myself trying to be efficient in errands or tasks and realize with a sinking heart that it isn't necessary anymore.  My calendar is clear and my arms are empty.  I don't need to take a 3 minute shower.  I don't need to think ahead and pull meds and gather supplies and plan for a 20-minute routine just to get out the door.  

Almost 6 years ago, our lives changed forever.  End of August 2013...Milla had her first seizure.  She and I rode in an ambulance down to LeBonheur.  And May 4, 2019, Elle and I rode in an ambulance to our house from LeBonheur so that we could hold her in our arms at home as she met Jesus face to face.

How has it been 6 years of fighting this awful disease?  How did we endure?  How are 2 of my babies gone?  It's a fog right now that I just can't seem to see through.  I can't get my bearings.  And my brain and body are physically fighting the reality of it.  The weight of it is too much to bear so for self-preservation, I remain in the fog.  I have no choice.  It is involuntary.  I feel the need for flight.  Fleeing from all of the sorrow, from this house even.

I need to tell you all how utterly beautiful Elle's service was.  The Holy Spirit was present.  He moved and was.in.that.place.  At some point, when I get a copy, I will figure out a way to post it online.  Jesus be praised.  I want to yell it from the mountain tops...ALL GLORY AND HONOR BE TO GOD.  May all people see Him and be drawn to Him through Milla and Elle's little lives.  Oh how we long for that.

I think I will sign off for now although I think it helps to write.  Thank you for listening.  Thank you for loving us.  I have so, so, so many thank-you's to say and give to people.  I will spend a lifetime doing so.

We have witnessed much.  And much beyond our understanding.

And the Lord, it was He that did go before thee; He did not fail thee, neither forsook thee.

Much love,

Dana

Elle's Service Schedule

We want you all to know Elle's service arrangements are as follows:

Wednesday 5/8: Visitation 5:00-7:00 at Second Presbyterian Church in the Fellowship Hall

Thursday 5/9: Funeral 11:00 at Second Presbyterian Church with graveside service to follow at Memorial Park Cemetery 

Second Presbyterian Church is at 4055 Poplar, Memphis, TN 38111.

In lieu of flowers, please send memorials to Milla's House.

You can visit https://baptistgriefcenters.org/center/memphis-tn/ to give or send to:

Baptist Centers for Good Grief

1520 W. Poplar Ave, Collierville, TN 38017

Elle is with Jesus

...and Milla.

Blessed be the name of the Lord.

Love to you all - 

Dana and Frazer

5/3 Update

Hey all - Elle had to be intubated around 4am this morning after a very long and distress-filled night.  Elle got into respiratory trouble pretty quickly last night after I sent the last update.

She is mildly sedated and has been made very comfortable today for the most part.  She has finally gotten some rest that she needed although she is still very, very sick.  Please pray for a stable night tonight specifically.

We are so grateful for you, your encouragements, your support, your prayers, your love.  

Rock of Ages, cleft for me - let me hide myself in Thee.

Dana

5/2 Update

Hey guys - so we are still in the PICU for tonight.

Viral results came back positive for adenovirus and parainfluenza virus.  Basically a couple of viruses that may not even affect me and you but for her, it can cause pneumonia and breathing problems.  So those yucky bugs are our culprits.

She made a little progress on her oxygen needs but not as much as we had hoped for today...but she is still on the high-flow binasal cannula that she has been on.  Her chest X-ray looked about the same as it did when she got to the hospital yesterday.

She has a super low platelet count and a couple of other things in her blood work that are 'off' but all those things are probably due to infection.  They are keeping a close eye on things though.

She feels pretty crummy and needed some morphine this afternoon to take the edge off of her pain...it worked well so I'm glad she has something that helps her rest.

She's not the most stable respiratory-wise in the last hour or so.  I'm waiting on the doctor to come in and look at her.

Please continue to pray for Elle's comfort.  We cannot stand to see her in so much discomfort and pain.

Thank you!

Dana

Elle is sick again :(

Hey guys.  So we are back at LeBonheur as of about 11:00 this morning.  Elle hasn't been acting 100% the last few days but started getting a lot of chest congestion yesterday afternoon.  Her lungs got really junky and she had some diminished breath sounds primarily on the side where she had all the pneumonia and chest fluid a few weeks ago.  We put her on oxygen at home last night, did extensive breathing treatments and closely monitored her.  This morning she got more and more labored with her breathing and then started to drop her sat even on oxygen.  She was pretty uncomfortable.

She has pneumonia but thankfully it is not a horrible case like last time.  We are still waiting on test results to see if she has a UTI, blood infection, etc. but I'm optimistic that those will be negative.

They have her on high-flow oxygen - she did not have to be intubated (put on a ventilator) and we are keeping her off of CPAP for now, although if she gets unstable on the high flow binasal cannula (that she is currently on), then we will have to step it up.

We are still down in the emergency room but they will be moving us to the PICU at some point  for the night.  So we will stay tonight and just see what is happening tomorrow...might move her to a regular room (non-ICU room) or go home if she is stable enough and her oxygen needs decrease.  But we really don't know what tomorrow will look like at this point.

Thank you for standing with us and continually praying for us.  I was able to talk to Ann Carlyle at school during her lunch break and she is scared.  We are too.  Pray that God's peace would envelope us.  I will say that Elle is much less sick than she was a few weeks ago, and hopefully she will continue to stabilize and improve quickly.

Much love!

Dana 

Elle Update: 5 days and counting at home!

Hey everyone!  I thought I'd pop in and update y'all on Elle since we've been at home.

Overall, her lungs have improved everyday.  She still has a bit of a productive cough, but her lungs sound great and the junk she is coughing up is decreasing.

She woke up Friday with her nose pretty congested but it hasn't developed into anything more than that (and she sounds better today)...except that she has apparently passed it along to me.  I think all the stress and sleepless nights are finally catching up to me and I'm fighting a cold.  It's not horrible but I just feel so, so sleepy and run-down.

Fortunately, everyone else is healthy!  We gotta get healthy and stay healthy because we have another big weekend coming up.  It is Easter weekend and it is also Elle's 7th birthday Saturday!!  Make-a-Wish is throwing her a mega birthday party Saturday and we are so excited about it! (Thank you to Make-a-Wish and all you are doing to pull this off!)

So Elle went to school today - first day back in over 2 weeks.  She was tired but wasn't fussy when I dropped her off so I think she was glad to get back to school.  She has her infusion tomorrow and then a day of rest at home Wednesday.  Friday is a holiday, so she will only go to school a couple of days this week which works out to kind of ease her back in to her schedule.

She is definitely weaker overall than before she got sick.  She is eating well (the action of eating) but she has a significantly decreased appetite.  Her antibiotic finished yesterday which may very well have been affecting her appetite, so we will see if her eating picks up as the week goes on.  She had a couple of days of increased seizure activity but we adjusted one of her meds and that seemed to do the trick to bring the seizures back under control relatively speaking.  She's had a few frustrating and/or upsetting moments this weekend but mostly she has been giggly and happy...for this, we are so very grateful.  

Our weekend night nurse position is still not filled and our substitute nurse didn't show up this weekend - please pray that this gets resolved quickly.  We have been waiting on this position to be filled since January.  (Speaking of, my brain is ultra-fuzzy these days, so please excuse any nonsense in this update!)

As we are moving through each day and all the details and exhaustion that come with each day, it is super hard for me to be able to stop and remember this sacred thing we are celebrating this week.  Please remember with me, that Jesus came as one of us, suffered all that we could ever suffer, died so that we can be with Him forever, and rose from the dead.  He is risen!!  We love because He first loved us...with the truest love...Jesus gave His life so that we may live.  May this truth imbed itself on our hearts today and everyday.  May we, in turn, love and serve each other today and everyday.

Much love to you!

Dana

WE ARE HOME!!!

After waiting allll day, we finally got home today around 4:00.  Then we had to go through an hour of the re-admission process for home nursing (for the night nurses), Ann Carlyle got home from school, dinner, unpacking all the things, trying to get back in the swing of things like pulling meds, making tomorrow's lunch, etc. and Frazer had to leave to drive to Nashville tonight for work.

Elle was super happy to leave the hospital, of course, and the whole way home she was looking out of the window like she had never seen trees before.  :) We did manage to squeeze in a little time in the tree swing after dinner (and Frazer and Ann Carlyle had a good father-daughter jump on the new trampoline).  The sun was shining, the breeze was perfect...so very thankful to be home and able to get outside for a few minutes.

Elle probably would've stayed there all night but she was starting to cough up more junk, so we had to go in to put on pjs and wind down for bed.  But her lungs have handled all the day's activities very well!  I spot-checked her sat (oxygen saturation) a couple of times after we got home and when I felt she was out of breath from exertion, and it was always 97 or better.  A++.  AND she didn't even need oxygen last night!

We will have her our home monitor for the next few nights since last night was the first in almost 2 weeks that she hasn't needed oxygen.  I've got everything ready just in case, but hopefully all that equipment will sit in the hallway unused.  So far, so good!  Her sat has stayed in the low, but acceptable/no-oxygen-needed range.  

Our night nurse coming at 10 to watch Elle until the morning so I won't be alone in caring for Elle.  So thankful for that help.

Well, I'm too tired to think of anything else to fill you in on!  :)

Good night to you all - thank you for continuing to pray for us.  Let the next chapter begin!

Dana

Happy because we are GOING HOME!

Tree swing happiness

Elle Update: 4/9 Day 10

Hey guys!  Stiiiill here at LeBonheur but the wheels are in actual motion and the plan is to go home tomorrow for real barring any craziness.  Please pray for a boring night!  :)

Elle had to go back on oxygen last night again but since it was a low amount and because we have all the equipment and home health team in place, they are fine with her going home if we are okay with it.  (We are okay with it.)

And we really are ready to go home but there is a bit of anxiety that comes with it too of course.  Please pray that all goes smoothly but if something is off, we will be able to recognize the problem.  

So one of the biggies is her CO2 level.  It was ridiculously high - scary, life-threateningly high - the night we were admitted.  And it is still a little elevated.  This means that her lungs are not ventilating quite well enough - not that she can't oxygenate well enough.  (This may be too much information, but hang with me!) Bottomline, she will probably need a bit of oxygen overnight for awhile because that's when her body is the most relaxed...and that's when her CO2 level can rise as her lungs aren't quite 100% healed yet.

She still gets fatigued quickly doing anything, including eating.  While she is doing very well and can return to her original full diet, she isn't quite back to what she was able to do before, so we have to be slow and careful with her eating.  

We stopped one of her seizure drugs because it was causing another drug level to dangerously rise.  Her seizures were not great for a couple of days; she's not had too many today until this last hour and I've seen a lot of long ones.  And we may see some rebound from all the med changes in the following weeks.  Also, I think she's having some withdrawal symptoms from one of the meds which includes restlessness and trouble falling asleep.  Not sure when that will level out.

Her tummy is still very messed up from her antibiotic but she just has to take it through Saturday and then hopefully her poor bowels will return to normal.

So those are the specific things to pray for for her as we head home.  And please pray that it will be an easy transition home, that there won't be any hiccups with the home equipment and that we can quickly find our way to a new norm including frequent and extensive breathing treatments.  I'm not sure yet when Elle will be able to go back to school - please pray that she can get back in her routine quickly though.  

I think there are going to be a number of things that are going to look different moving forward with Elle, not the least of it, her lack of vision.  And it could take 4-6 weeks for her lungs to fully recover to 100%.  It's a thing we have to laugh about in the Batten community so you don't cry...juuuust when you finally get used to a new normal, the child changes again and you are thrown back into chaos and confusion, scrambling to figure it all out.  Only time will tell what significant changes we will be dealing with long-term.  But whatever that new normal is, we rejoice in God's goodness through all of it...the good, the bad, the pretty, the ugly.  He is the constant in our lives...His goodness never changes, never fades.

PS - Did I tell y'all she lost a tooth last week??  (It had been super loose so they pulled it while she was here.) I'm including a super cute picture of her new smile.  :)

Love you guys!

Dana

Elle Update: 4/8 Day 9

(I just had to double check the days again because my brain can't compute...yep, 9 days in.)

Another good day!  Elle did great keeping her sats mostly above 92 today.  She did have to go on oxygen for about 5 hours last night (a super low amount though)...and she has to go at least 24hrs being on room air before she can go home...so the clock reset this morning at about 4am.

She hasn't wanted to eat much today, but what she did eat, she ate well.  She fatigues quickly and was coughing up more junk from her lungs (that's a good thing - we want it outta there) but she's getting stronger each day and that's what we want!

She's still dealing with diarrhea multiple times a day due to her antibiotic.  Right now, it is what it is and she has to have this antibiotic.  We are upping her probiotics though and giving her zofran for nausea when she needs it.  She was pretty nauseous and miserable last night after her dose of antibiotic...she wanted so badly to sleep but just couldn't because of her tummy for almost 30 minutes poor thing.

But again, all in all, she is looking great.  The doctors are encouraged at her progress.  Her temperature stayed stable all day too.  There is some talk of going home tomorrow perhaps, but we might have to stay until Wednesday.  We had a pulmonology consult today to make sure we have a good home plan.  She will have some blood drawn in the morning that will help the doctors decide on a discharge plan.

Elle is getting more and more energy back and with that comes a good bit of antsy-ness.  So please pray that she miraculously stays content to sit in a bed in a hospital that she has been in for 9 days.  Please pray for her tummy and for her lungs to continue to heal.  Please pray for her coughing muscles to be strong and do the job they need to do.  Please pray for the rest of us as we are so weary.  We are tired of being apart and being on this specific roller coaster...although truly thankful for the amazing recovery Elle has made.  The pulmonologist was telling us today, from her point of view, how dire the situation was that night Elle came in.  That her organs could not have worked for much longer under those conditions.  Thank God for LeBonheur and the wonderful, wonderful medical team that has been caring for Elle...it's a big, big team.

And thank God for our big, big team of you all.  We surely could not carry on without you.  Much love!

Dana

(Don't you love these short, positive updates?!)

Oh and PS - I meant to include this yesterday, but I forgot because again, my brain.

When I was driving with Ann Carlyle to the hospital yesterday, we were listening to Ellie Holcomb's newest CD 'Sing: Creation Songs'.  My absolute favorite song on there from the first time I heard it is the last one...'He Loves Us'.  It's a short, sweet lullaby taken from Isaiah 25:8 and Psalm 42:8 about Jesus and His love for us. 

Here are the lyrics:

(The tune is also precious and beautiful...you've got to listen to it. Ann Carlyle and I listened to it 3 times in a row yesterday in the car.  It is often times on repeat. It speaks straight into our souls.)

When we're lost, God is light
He'll be with us through the night
Cause He loves us

When we're sad, and need to cry
He will sing a lullaby
Cause He loves us

From the rising of the sun
After every day is done
Even through the dark of night
God is with us all the time

When we fall and make mistakes
God will cover us with grace
Cause He loves us

Even if we run away
He'll come find us just to say
How He loves us

From the rising of the sun
After every day is done
Even through our darkest night
God is with us all the time

Everything that's on the earth
Land and sky, and flowers, & birds
They're all singing God's love song
And we can sing along

Every moment, Every day
Everywhere in every way
God loves us

(Thank you, Ellie, for this song!) 

Elle Update: 4/7 Day 8

Great day today!

Elle has made great strides in eating solid food and SHE IS OFF ALL OXYGEN!!  She came off of it about 5 hours ago, has eaten and has still done great!  Everyone feels really positive and encouraged at her progress today.  We will be here another night for sure and then it will just be day to day...but I see light at the end of the tunnel.

Her white blood cell count was up a bit this morning but everything else looks just fine and she looks just fine, so they aren't too concerned about it.

Ann Carlyle's birthday party was a big success!  Thank you to all the adults at the party that helped keep an eye on kiddos and helped corral them and helped keep my sanity.  :)  Ann Carlyle had a blast and it was the perfect end to her birthday weekend.  (And I for one, am glad all the activities and events of this weekend are over!  Whew!)

Thank you for praying for my sleep last night!  I slept great.  I wish I could've had another 5 days to sleep but I'll take the 8.5 hours I got.  :)

So pretty much all good things here.  Howbout that for an update!  (And look how short it is! Yay!)

Please pray for an inordinate amount of good sleep here at the hospital for me and Elle and a good sleep for Frazer and Ann Carlyle at home.  Ann Carlyle has been going nonstop with little sleep for a week now, so she needs a lot of rest tonight.

Much love from the Gieselmann's!

Dana

Elle Update: 4/6 Day 7

I just looked back at my emails to make sure 'Day 7' was right.  It was 1 week ago (almost exactly) in the 9:00 hour that we realized we needed to head into LeBonheur with Elle.  Can't believe that.

And on a much happier note, it was 10 years ago exactly in the 9:00 hour that Ann Carlyle made her debut after trying to stay in me forever and ever amen.  We like to joke with each other that she was just too comfy-cozy and decided she wasn't going to come out.  We are so thankful for her life and for her heart and for the incredible little lady she is becoming.  Her heart has grown exponentially with each year - we pray God continues to grow her heart and use her in all kinds of ways.

I got to see her in her school musical today - and she was awesome.  She was 'just' a servant and townsperson but I told her that I thought it took more acting chops to make those roles interesting and fun than if she had actual lines.  :) I don't know if that's true or not but she was animated and all-in and had a blast doing it.  

She woke up to a million balloons and signs and streamers in the house (shout out to Janet and Callie!) and pinwheels and a huge sign in the yard - well, 4 signs actually - a cupcake, the numbers 1 and 0 and a doughnut.  So fun.  After a big pancake breakfast with all 4 grandparents, she went to her marathon performance day from 9-4ish.  There was a cast party and then I brought her home to surprise her with a trampoline in the backyard (which she has wanted for years!) and then we drove to the hospital to see Elle and Frazer and celebrate there.  She started the day out with Frazer and is ending it with me.  I hate that we are all split up on her birthday, but we tried to make the best of it and I think she's had a super fun day.  She's exhausted, so that's a good sign right?!  AND she gets to have a fun party tomorrow afternoon with a slew of friends!

Y'all, she has received over 100(!!) cards and will be opening them for days to come.  Y'all.are.the.best.  It's put a smile on all of our faces...so, so fun!!!  Thank you to everyone for helping us pull off this day and for helping us celebrate our girl.  We couldn't do it without you!

So - Elle update - she did not sleep for 22.5 hours straight.  Literally.  Naturally, neither did I.  I was already utterly exhausted - I'm not sure there is a word for my level of exhaustion at this point.  But I am at home tonight with Ann Carlyle so hopefully I'll get some good sleep.  Please pray that Elle sleeps as well.  She has had a really hard time with sleep since being extubated, which I'm assuming is at least partly due to the steroids she got yesterday and this morning.

Elle was moved out of the PICU this evening and onto the neuro floor!  This is stepping down from intensive care, so it is cause for celebration!  They felt she did really well the last 24 hours and has tolerated having oxygen weaned from high-flow binasal cannula to regular binasal cannula, which basically means she doesn't need as much support breathing.  Very good progress!  AND she actually ate 5 goldfish crackers today!!  It will probably take her a couple more days to get her appetite back but that's completely normal, so we just have to wait and see.

Shortly after we arrived in our new room, Elle's temperature went up a little again and she started looking anxious and like she was struggling a little more to move air in and out.  They did a chest X-ray which looked great thankfully.  But she continued to be labored (in her breathing) and anxious.  I had to leave to take Ann Carlyle home, but Frazer said as of right now, she is breathing better after a breathing treatment.  Her temp is still a little high even after ibuprofen - no one really knows why her temp is increasing each day in varying degrees.  

So we made some really great progress today and Elle is doing really well but we aren't completely out of the woods yet.  Please continue to pray for her lungs to heal and for her appetite and ability to eat to return.  These are our biggest and most immediate prayers.

Also, please pray that we can make it through tomorrow and Ann Carlyle's party all while having Elle in the hospital.  We have lots of hands on deck (we couldn't be more thankful) and without those hands, we literally would not be able to make it happen.  Please pray that Frazer and I will both be able to be at the party and that Elle does okay without us for a couple of hours.  

If you have seen me lately or if you see me soon, you will most likely see me dazed and confused because I am.  I apologize if I couldn't complete a sentence or even a thought.  :) 

Much love and gratefulness - 

Dana

She's off the vent!!!

Y'all.  Elle was extubated today and came off the ventilator!!  

She had a great night last night and was looking good this morning so they said, let's take that breathing tube out at 1:00 and so they did.  It's been about 8 hours and she is flying steady.  She started having a bit of a tough time at one point this afternoon but after some very.very intense breathing treatments (that she will continue to get every 4-6hrs), she started looking way better.  Then tonight she had a small choking and coughing episode but she recovered with some suction and sitting her up and since then has done just great.  

She is on a high-flow binasal cannula that pushes air into her nose to give her a little boost as her lungs are still trying to heal.  She will continue to get the intense breathing treatments as long as she needs them.  They are really awful to watch but they work.  And if it keeps her off the vent, then we are all for it.

She spiked a rather high fever just an hour after her ET (breathing) tube came out, which caught everyone by surprise.  We finally got it down after a few rounds of meds and making the room frigid and she has been acting like Elle-belle.  :) So we are keeping a close eye on her of course but are so hopeful tonight.

She has looooved having that ET tube out.  She is trying to sit up and is laughing and playing and being silly and trying so hard to talk.  Her vocal cords aren't working quite yet but she is mouthing the words and doing such a good job!  Honestly, I didn't know what things would look like on this side of things, and while she is still very weak and can't eat yet, we are seeing all so many of her usual mannerisms and she seems mentally to be back where she was before getting sick.

One hard thing is that her vision is gone.  She has had very bad vision for awhile now and we could tell she was losing even more of her vision pretty rapidly the past month or so, and it seems she has pretty much lost all of it at this point.  There are times she startles easily and sometimes I think she is trying so hard to search for and see something.  She will adapt and be okay, but I hate seeing her struggle.

She also is on 4 rounds of a steroid to help her lungs out and this makes her shake uncontrollably and get restless and aggressive and just amped up.  This is not fun. I will be glad to have that gone tomorrow.

All in all, she is doing really, really well and we are so thrilled!  Maybe we will get to move to a step-down unit this weekend, but we will probably still be here in the hospital for a few more days.

On a different note, Ann Carlyle has performed her school musical, Beauty and the Beast, 3 times now and still has 2 more performances to go tomorrow!  It will be a busy and awesome day for our birthday girl with many surprises from us and many more from so many of you!!  Thank you so much for showing her so much love and care.  

I was supposed to go to the play tonight but had to stay with Elle in light of today's activities...but by all accounts, it is awesome!  She plays a villager/servant and I am hearing from multiple sources that she is a dedicated actress.  :) I am planning on going tomorrow to see her.  I love it so much because she loves it so much.

The busy-ness factor has increased greatly since we have our wild-child back at it so I gotta go.  Much love!!!!

Dana