Posted (Tina) in All Posts on September-14-2008

It was another restless night for Ella. By the morning, she started coughing and retching a lot. You could hear the secretions in her airway. Since they discontinued all of her diuretics yesterday, the thought is that now she might be getting a bit “wet” again.

Her heart rate while she was just laying there watching her video was between 175-185. Her urine output for the last 24 hours was down a bit. And then the scale told the story, she increased from 7.7 kilos to 7.84 kilos overnight.

So this morning, the doc went ahead and added a low dose of the combo diuretic back into her regimen (aldactazide). But instead of dosing it 3 times per day, she added it back for twice a day. Once again, just taking the time to figure out the art of the right medications to put Ella in the best place. Now if everything goes great, maybe we can think about returning home at the end of the week.

Since Ella wasn’t feeling great, there was lots of fussy behavior. Some days are harder than others and it was one of those days where you wish you could switch places with her, just to give her a break. I can’t imagine feeling the way that she does each day. And yet somehow, she finds a way to break a smile here and there.

The Bun is making slow progress with food. The fussiness and discomfort are there but we are slowly adding more food to her daily feeds and stretching out her belly. Today, her bolus feeds were at 80ccs over an hour and a half. Our goal is 100ccs over an hour and a half. Then, we will look to reduce the hour and half on the food pump down to bolus feeds.

We were finally able to give Ella a real bath tonight. I think we enjoyed it more than she did!

After the bath, a manicure was necessary! Josh was taking pictures and it made him reflect on another time that he was taking pictures of this same event in the hospital. Wow, what a difference a year can make.

On a personal note, our rental home in SE Aurora has still not rented. We have advertised it for 4 months now. Since it remains vacant, we recently asked God if He was trying to get our attention and wanted something different from us. A week ago, we put both our rental home and our primary residence (our Lone Tree townhome) up for rent. With everything else going on, we cannot imagine having to move. But clearly we want His will to be done in our lives. Please join us in praying that He would make it abundantly clear for us and that if He wants us to move, He will provide the resources to make it happen.

Thank you so much for the support and prayers. Each day we find moments to tell new acquaintances about Ella Renae. We send them to this site to read her story and see how God has worked in our lives during this challenging time. It seems like one life at a time is touched.

Although the journey is hard and the road is tough, our faith and dependence on God has been enriched far beyond our imagination.

Lamentations 3:19-33 (The Message)

I’ll never forget the trouble, the utter lostness,
the taste of ashes, the poison I’ve swallowed.
I remember it all—oh, how well I remember—
the feeling of hitting the bottom.
But there’s one other thing I remember,
and remembering, I keep a grip on hope:

God’s loyal love couldn’t have run out,
his merciful love couldn’t have dried up.
They’re created new every morning.
How great your faithfulness!
I’m sticking with God (I say it over and over).
He’s all I’ve got left.

God proves to be good to the man who passionately waits,
to the woman who diligently seeks.
It’s a good thing to quietly hope,
quietly hope for help from God.
It’s a good thing when you’re young
to stick it out through the hard times.

When life is heavy and hard to take,
go off by yourself. Enter the silence.
Bow in prayer. Don’t ask questions:
Wait for hope to appear.
Don’t run from trouble. Take it full-face.
The “worst” is never the worst.

Why? Because the Master won’t ever
walk out and fail to return.
If he works severely, he also works tenderly.
His stockpiles of loyal love are immense.
He takes no pleasure in making life hard,
in throwing roadblocks in the way.

Julie Kirk on September 15th, 2008 at 12:03 am #

following close each day and putting little Ella at the foot of the cross.
Once again I was very blessed by your post and the scripture (The Message). I had just talked with someone that really needs hope and will fwd that scripture on to them. I have told you before, God has used you so many times to speak to many hearts through this blog.

Joel Snyder on September 15th, 2008 at 1:54 am #

Ella, Sorry that you weren’t feeling well today. I enjoyed the lunch and visit with Mom and you. I am praying that your caregivers will find the correct balance of medicine and food for you so that you can go home soon. I will check on you later. Love,Grandpa!!!!!!!!!!

Megan on September 15th, 2008 at 7:19 am #

Goodmorning Ella I hope that today is a little better for you. Patience is sometimes hard to find when you dealing with someone you love. We just have to remember that there is a reason for everything and we need to trust in God’s plan. Have a great day and thanks for the pics, there is nothing better than seeing her smile =)..

LoriAnn & The Gang on September 15th, 2008 at 7:49 am #

Ah, the Princess looks wonderful, still. My youngest son, Jonny, has a perforated ear drum that the doctor has been hesitant to operate on it, since it could have adverse affects. Jonny is in pain EVERY DAY! He is only 4 and I just don’t know how he does it; except to say that the Lord must give him the grace to tolerate it. That is what the Lord must be doing with Bella-Ella; giving her grace to persevere (I hope I can spell this morning, Mondays are rough getting 5 kids ready for the bus and three “babies” following me around).
Love to you family. And prayers for all, including Mommy and Daddy feeling rested and super-naturally energized.
LoriAnn and The Gang

John & Estela Williams on September 15th, 2008 at 8:52 am #

Oh no, not feeling good again. Poor Ella, you sure looked great in the bath tub and what I would give to get a manicure myself :-). You sure are loved little Ella. Get better today!
Love ya.

Laura Marold on September 15th, 2008 at 2:52 pm #

Thanks for the new pictures of Ella in the tub. I have a new idea of how big(or little) she is! Hopefully, after her bath she will be so comfy that she will sleep well. Love, Laura M.

Jennifer Harris on September 15th, 2008 at 2:57 pm #

Again, thank you for sharing. We continue to pray for your entire family and Ella’s restored health. You two are an amazing duo with the strength of the Lord on your side.
Jennifer & Chelsea

John & Marylynf. Womble on September 15th, 2008 at 5:24 pm #

Dear little Ella, Thank you so very much for your beautiful smile. Our Loving Father is giving each of us a warm hug straight from your heart! We pray He will always be your Prince of Peace.
We are partners in prayer with Terri and Steve in Dallas, for Jesus to touch you everyday with tenderness and gentle healing to your body.

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