Baby Ellie

A look back at Ellie in her first two weeks before her "tubes".  That day will indeed one day come again!  She was such a mellow, sweet, quiet baby.  Some things have not changed!

 

As long as there's no thunder

Nothing could be much better than running around the backyard in the rain then jumping straight into a hot bath!

Ellie says "I like my spot here on the floor."

 

Ellie was on her back and then,

she used her muscles to do this!!!!!!!!!!!!

Note: the machine there with the top number "99" is how much oxygen is circulating through her blood.  100 is as high as it goes!  When we went to the hospital on 9/6 she was high 80's and the doctors want us to call if she's below 95.  She's feeling good and has lots of energy!  Praise God!

You can't have too many...

syringes, envelopes and ways to get your kids to eat fiber.

 

 

Saturday morning

 Jacob watching golf 8-year-old style.

 



Ellie's morning nap.

This will last us about - 5 days.

Julia asks for "one more".

Sweet smile Xavier.

Transformations

The tulip bulbs went in today.  The seeds are buried in the cold, dark dirt.  We'll watch outside our kitchen window for transformation to new life.  Prayerfully, our hearts will be undergoing the same thing.

Holdin' on

Ellie knows at any given moment one of her siblings could turn her swing up to turbo speed.  She's ready.

Abba Father

You are the potter, we are the clay.

Our family, by Xavier

Day

Today the nurse:
Gave meds at 8:00
Did vital signs
Gave Ellie a bath
Cleaned her stomach tube site
Changed her feeding bag and refilled with milk
Got her to sleep
Held her
Practiced feeding her with an empty spoon (pray she can eat food one day soon!)
Changed her
Readministered meds
More vitals
Turned her oxygen down which requires concentration and talking to her doctor
Celebrated with mom she needs less oxygen today
Suctioned out her mouth and nose
Got her to sleep again

Today the mom:
Made breakfast
Called around to try to find Ellie's powder for her milk
Played Apples to Apples
Made milk for Ellie
Rode bikes around the driveway with the kids
Did some school
Did some laundry
Got everyone settled for rest time
Played Apples to Apples some more :)

I'm so glad these are two different people now.

Then and now

When we first had Ellie, work brought so much food to us.  We had nothing to worry about and the kids loved it.

 

TODAY, 5 1/2 months later Jeff came home with this:

 

Practical items to make life easier, handmade cards for Ellie that the kids looooved reading, a borrowed highchair specially made for kids with muscle control issues and tulip bulbs to plant outside our kitchen window to remind us of Holland. 

 

The love and generosity from the school and church in particular has been like a chain...link by link, pulling us along.

 

Different day

It's not even 9:00 on Wednesday and I already feel better today than I did the whole day yesterday.

Tuesday was Jeff's first day back, the nurse brought someone in training that created some extra challenges, the kids missed Daddy, we had several deliveries and people in the house and a fussy Ellie.  She's allowed to have those days :).

This morning was a much slower, better start to the day.  In fact, I'm considering taking the three out in the driveway to ride bikes - a first for me!  And I'll enjoy the chill of the fall air to help open my lungs and my mind.

Bloodwork

It's all good!  Ellie's numbers were climbing back up - she's not dehydrated!  That's the good news.  The bad news for Ellie is that the home blood-draw was a failed attempt.  So we went to the hospital to get it and were treated very kindly and effeciently there.  

Here is our nurse working on the medicine - she gave two of the four "rounds" of meds today!  Great mercy has been given to us!

And after all she went through today, she tells us "ya'll need to leave me alone and just let me sleep!"  Sure thing sweet girl.

 

Week

I'm assuming the week ahead will be full as tomorrow already holds a great deal.  It's our first nursing shift including a blood draw to get the day started.  Then some phone calls and errands that can only be done on weekdays.

So maybe a check back on the weekend for a recap would be my best guess for blog updates.  I'm enjoying it so much!  But as you know, the hospital with only one child is far different from home with four! 

I appreciate everyone checking in - that means alot to us, and to Ellie :).

Loose tooth

The backstory to Jacob losing his first top tooth is that it was loose all of Labor Day weekend.  I kept encouraging him to brush all around it, knowing it would help move it.  Then on Thursday morning, Sept. 6th as I was nervously trying to get Ellie soothed and gage if we in fact were headed to the hosptial, Jacob said "it's coming out Mommy, come quick!"  I left the poor girl in the den and ran to him as he was beginning to work it out.  But then he changed his mind and wanted to wait and let it fall out on its own.  I got on my knees and looked my boy in the eye and told him Mommy and Daddy were going to be gone with Ellie for a while and I could not stand to miss his tooth coming out.  He sweetly agreed to us giving it a tug and it came right out.  We then left right after that.  The tooth fairy brought a whole $5 that night.  

 

Transition

Can I just say I have compassion for soldiers who get deployed for 12-18 months then come home to their families again?  It is not easy to turn off your brain and just "jump in" to something.  And we were only gone two weeks!  Mornings are the biggest adjustment I guess.  I keep waiting for a group of 6 or 7 neighbors to come to the door and ask how Ellie's doing and make a plan for our day.

Trust the process

Today at church a fellow parishioner (a pediatrician) told Jeff to "trust the process" that with time and meds Ellie will overcome her health issues.

 

Little did he know Jeff was married to a woman who hears things like that and tries to make deep, earth-shaking revelations out of it.

 

But really - trust the process...isn't that what we have to do in life anyway?  Trust that we're doing God's will.  Trust all we are doing has great meaning.  Trust good will come out of something that sometimes feels like a disaster. 

 

I also heard "you might stumble but you won't crumble" recently too.  So this is what we are learning in school today.

 

Naturally - I left the marker out and the board instantly got decorated with a family portrait and "Happy Birthday Jullia" for next week.  I guess we've done art for the day too.



New bed

Ellie got upgraded to a bigger pack-n-play that we had never used for the others.  Gives her a little more space.  She seems to like it and has been pretty chill today. 

Notice Jeff's hand next to her - dutifully keeping an eye on his girl and the men on the television all at the same time. 

House

We love our new house...and it loves us!  We've been here just over three months and it has served us so well.

Here is a "bar" connecting the kitchen and the den.  It's just what we need for Ellie.  It's where we serve her four times a day.

Germs

If we get sick, you can't say we didn't try.

Lucky

Ellie says she feels lucky to be home.

Blessings

Blessings in the fridge

Blessings on the phone

Blessings in the mail

Blessings in faces

Home

There are no words.  Who am I kidding - I can always find a few.

We are all six home!  So wonderful to be here and feel "normal".

Got some work to do with some meds and stuff but Ellie is making it easy by happily playing and sleeping in her old bed here at the Chardos Hospital.

Beads

There is a program here called "Beads of Courage".  It's a very nice, presumably very expensive gift they offer to families.  You get a string on your first day here and each procedure gets you a bead.  There are 20 or so different beads including tests, bloodwork, surgeries, dressing changes, overnight stays in the hospital, x-rays, intesive care stays, and alot more.

Black is "pokes" - Ellie has had alot of those.
Yellow is "overnight stays".
Rainbow is visits from that team that helps families with serious issues.
In about an hour (11:00 a.m. EST) Ellie will be getting another bead...the discharge bead.

Stolen moment

Does this look like a mom who has four kids?

Footnote: Since 2004 we've been obsessed with swaddling our children.  Never has it been more useful to us than with Ellie who is now famous for swatting at her face and her oxygen ends up going in her mouth.  Suprisingly, that's not quite as effective for her lungs.

Golf

We miss our other kids!  So so bad!  They are being extremely well cared for which puts our minds at rest, but still!

All I can think about is being on the couch, all six of us this weekend, and seeing who wins the 10 million.

You have no idea how exciting and thrilling this has become in our family. 

Movies

I think we're about to set a record.

Thanks to a more-than-decent library here at the hospital, we're up to a possible five movies in one stay.  Of course they get stopped and started over and over again, but we eventually watch them!

1. One for the Money - cute
2. Bedtime Stories - silly
3. Source Code - very entertaining and a little creepy
4. Gulliver's Travels - corny but funy
5. When in Rome - just started it

Sunrise, Sunset

The sun sets on another day here at Egleston...but isn't it a pretty sunset?

Day 15

This morning we were ready to pack our bags when a little snafoo happened.  Yesterday's food change worked out fine, she tolerated it well.  But since she's on so many diuretics to drain off extra fluid - she actually lost too much fluid last night.  She had very low electrolytes, potassium and sodium this morning.

No biggie, just have to tweak the drugs.  And no one ever goes home on the day changes are made.  That's the rule.  So, here we are - waiting another day to go home.  Labs are tomorrow at 8:00 a.m. - as long as they are trending "in the right direction" we'll go home with a very alert, smiley, comfortable Ellie.

As a special effort to help my girl, I had extra water, a banana and potato chips with lunch today.  I do what I can.

New eats

Ellie started her new feeding regimine just a bit ago.  24 ounces of milk all dumped into a half gallon jug and this sprinkled in...yummy!  Make that girl grow, and stay out of her lungs!

I got on the computer to do a few things and wanted to say how much we've enjoyed communicating with all of you this way.  I hope to continue it as much as possible.  I think it will be a life-long treasure for our family and it's an easy way to guarantee on-going petitions to our Lord on our behalf!

Tomorrow

IF Ellie looks good tomorrow
and
IF her x-ray shows some improvement
and
IF her blood work shows good electrolytes
we can go home.
Please pray she has a good night and a smooth morning tomorrow.
If that happens, I will be smiling like this:

Fluid, Fluid, Everywhere

Most of us are used to reading books like this to our kids:

But our Ellie is writing a book called Fluid, Fluid, Everywhere and it's about her lungs.  Ellie has two things compromising her lungs: 1) pulmonary hypertension that causes pressures in the lungs to be high and  2) consistent fluid in her lungs on her x-rays.  First we thought the fluid was milk by mouth getting down in there so we took care of that with surgery that allows her to eat through a tube in her stomach.  Then we thought it was spit up getting in her lungs so we had another surgery to prevent that.  Add to that the diuretics she's been on to help take off some of the fluid and she's still got too much on board.

So today we took it to the next level - we have to put less "in" her so less milk lurks around where it should not be going.  Ellie is getting lots of good milk, but the volume is overwhelming her.  It's passing through her bloodstream and instead of going out through the kidneys, her heart defect is causing it to circulate back into her lungs.  Luckily, there is this handy-dandy powder that enhances and condenses human milk so you don't have to give the child a large amount of milk and she still gets lots and lots of calories.  It's pretty natural, nothing too artificial so we're moving forward with that.

We want her lungs to one day soon write a book like this:

We are many parts...

...but we are all one body.

Besides our family-family, our faith-family at the church and school has been holding us up during all of this.  Work has been extraordinarily flexible, which we are eternally grateful for.  Prayers are sending us so much grace and we think some healing too.

Some of the students have made a special effort to remember Ellie and keep her close to their hearts by writing her name on their hands.  It started with some athletes doing it during a run as a way to make a corporal sacrifice for Ellie.  Now others have done it and it's so very touching.  Like I said, we feel very lifted up right now.

Go Vikings and Go Ellie!