Posted (jooosh) in All Posts on October-2-2007

It’s 1:30am EST. Tina and I just got home from the hospital. Ella looked good this evening. Her saturations were pegging 100% the whole time she was sleeping. This is real good considering her FiO2 had been weened back to 50%.

Around 4pm this afternoon Ella’s nurse called to let us know about the results of the CT scan. Dr. Kays had said that it didn’t look like the fluid had re-accumulated around her lungs, and that overall the fluid in her chest looks better. Thank God.

He did notice some areas of collapsed avioli (atalectesis) which is the reason for Ella being put on her belly. They gave her a dose of fentanyl (pain med) and flipped her over.

When we went to visit Ella tonight, we fully expected her to be on her back, but she tolerated being on her belly for a full 8 hours! This is a good thing. Being able to flip Ella over on a regular basis should help her edema and her fluid output. Her lungs will also benefit from the turning as well.

Ella still has a long ways to go, and we still don’t know if the fluid issue has resolved. If you remember, the last time she had a significant amount of fluid come off her, she did well for a couple days, but then started down the wrong path again.

It is our hope and prayer that we don’t repeat this cycle, but instead, move on to the next steps toward recovery. Even if all goes smoothly moving forward, we’re still going to be in Gainesville awhile. At this point, I’m just hoping we’re home for Christmas.

As much as we would love to come home right now, we don’t want to rush God and get in the way of what He is doing. He has a purpose and a plan for us being out here. It has been evident in the events we’ve experienced, as well as the overwhelming response from people on the blog.

This last weekend was emotionally heavy. We thank God for bringing us through it and continuing His work through Ella.

Through all the valleys and mountain tops, it is our desire to be obedient to our Father who is sovereign. We trust in Him completely, knowing that His timing is perfect.

The Brittain Family on October 3rd, 2007 at 12:31 am #

It is so wonderful to see Ella peaceful and pink again. Thank you, Jesus! It is so good to put our trust in the Lord, to hope in Him, and to wait upon His perfect timing. We praise Him for being good to His word and sustaining you through the valley and we do not doubt that He will keep leading you each step of the journey ahead. We’d all be thrilled to see major breakthroughs for her and know that God’s arm is not too short to accomplish that, but at the same time we are content with little steps if that is God’s perfect plan. Little Ella looks so adorable on her back and we’re thankful for every little step forward that she is able to take. Thank you for sharing and letting us be a part of your family! We wait with bated breath to see what He will accomplish over the next few days but meanwhile, rest in His promises.

tamara tessmer on October 3rd, 2007 at 1:17 am #

Praise God! I am so glad to hear she is doing well again. I pray that this is the begining of forward progress. Just wanted to share something that Avery, our six year old reminded me. We were doing her devotional, and it was about Hannah and how she prayed “big prayers” to God and how He answeared her. In the reflection part, she had to tell me someone who she wanted to pray “big prayers” for. I am always curious to see how her mind is working. With out even a moments hesitation, she says “Baby Ella Mommy. I pray that her lungs would be fixed and that she could go home with her Mommy and Daddy.” I had to fight back the tears. Thank you for sharing your daughter with us. Through her, my children are learning to put others before themselves, without my even having to remind them. I thank the Lord for the both of you and for your faithfulness. God will finish the work he started in all of us!!!! Please call if you need anything. I drive three hours in my sleep! Get some rest knowing that your beautiful girl is blessing the lives of many people.

Kristen on October 3rd, 2007 at 1:36 am #

Ahhh. . . a good rest on your belly does a girl good! What a sweet dreamer she is. Blessings!

Adrienne (Melissa's sister!) on October 3rd, 2007 at 1:40 am #

Tamara’s comment is so sweet. It’s true with our kids as well. Kaiden (5) and Carson (3) have been praying for her each evening and at lunch/dinner time too…. Ella is playing a big part of all of our learning to TRUST FULLY in the GOD OF THE UNIVERSE and his sole sovereignty in our lives…. not an easy concept for a grown-up!

Joel Snyder on October 3rd, 2007 at 2:47 am #

Ella, Grandpa is at work and I just got done checking and telling the Dino’s that you are feeling better. I hope that you continue to progress and get the fluid problem solved. You and your Mommy sure look great in the picture tonight. I talked to your Daddy earlier today. Tell him I said that your calendar is set by a higher power. I Love and miss you. Grandpa!!!!!

Lesli Richards on October 3rd, 2007 at 5:13 am #

Yay! Good ole tummy time! I was so thankful to God when I saw this post. I am eagerly watching to see what He is going to do this week…hopefully with Ella tolerating the new position it will resolve the fluid issue. I hope Mom and Dad get some much needed rest!

Love, Lesli

Moriah Weir on October 3rd, 2007 at 5:22 am #

Hi! I have been praying for you and Ella. Ella is truly beatiful.She will make it! She is going to stay on the right path.

Rachel Pate on October 3rd, 2007 at 6:21 am #

I found Baby Ella through Lesli Richards. We have been praying for her…and we check on her progress every day. What a testimony she already is!!!

Gloria & Red Jacobsen on October 3rd, 2007 at 6:30 am #

So glad to hear
ella’s doing better.Praise God! Heading to church again this morning to continue to pray for Ella and her wonderful faith-fulled parents. Gloria & Red

Roxie Moore - Adrienne's friend on October 3rd, 2007 at 6:46 am #

Mommie and little Ella–what a beautiful scene, such love and tenderness..words cannot decsribe the deep emotion quietly spoken in this picture. The only depth I can relate this to is the depth of love of our Father in Heaven has for us….
It is wonderful to see Ella on her tummy. I have six children and four grands. I know how much better they rest when they are on their tummies. Sleep and heal little Ella. May God be with you while you slumber baby girl.

Julie on October 3rd, 2007 at 7:47 am #

If it’s any consolation, my son *hated* tummy time at that age. Maybe it’s not *all* because it’s a big change or that she’s uncomfortable. Maybe she just doesn’t like it because she just doesn’t. (-:

Glad to know, though, that she can be turned and I hope it makes a positive difference.

Still praying…

Loren L on October 3rd, 2007 at 8:12 am #

I’m hoping that after this she will be a fan of sleeping on your belly. We’re still praying hard for this beauty to get better!

Char Snyder Jordan on October 3rd, 2007 at 8:19 am #

Tina you look great. I hope after this whole voyage you get a chance for a bit of rest. The baby appears to be growing. I don’t know if that is just the photo, but she looks bigger to me. Perhaps her organs are growing too. All our love to you and Josh and as always, love to the munchkin. LOL Aunt Char and Jim

Joan Odell on October 3rd, 2007 at 8:26 am #

she looks so cute on her tummy. Hold tight all of you – rejoice in the moment and enjoy!!!! prayers and hugs are always-steve and joan

Felix on October 3rd, 2007 at 8:29 am #

The Lin family continues to pray for you guys and the entire family. Much love from us to you! Stay strong Ella!

rachel on October 3rd, 2007 at 8:46 am #

I want you and your family to know that you’re in my prayers. I know the struggle you are going through, not with CDH, but with having a sick child. When my daughter was 9 weeks old i took her to the doctor bc she was fussy, we were flown to dallas childrens hospital that night. It hit us with no warning, she was diagnosed with 5 CHD congenital heart defects which had become compounded my critical RSV. She was in the hospital for 3 months and died 3 times before she had her open heart surgery. It was a tough road while there and after we left. This started in Dec ’05, My daughter is about to turn 2 in a few weeks and is healthy and so completely amazing. It was my faith and the faith of those who were taking care of her that she would make it, she would survive, she would thrive that kept me going. She is still overcoming obstacles like eating and talking, but we finally got rid of her NG tube a few months back. I never left the hospital, it was my home and the only place i wanted to be. Take joy in the little victories. You have so many people praying for you and little Ella, I pray her struggle is over soon and you get to enjoy watching your amazing, beautiful child grow up healthy and strong and happy.

Melissa Morris on October 3rd, 2007 at 8:49 am #

Praise God! Thank you Lord for guiding and directing each step.
We thank you for your promises that we can cling to.
Lord, thank you for giving Josh and Tina a breath of fresh air and thank you for making Ella stronger each day.
We rejoice in the healing that is taking place, that you hold the West family in the palm of your hand and that you are sovereign.
What a blessing to watch the faithfulness of Josh and Tina. Such a testimony!!! Lord, I know it must be hard for them at times, especially when you take them down the mountain into the valley. Please continue to shower them with your peace, grace and mercy. Renew their strength each moment so that they may continue to follow you on this path that you have set for them.
May your will be done. Have your way Lord.
song lyrics…Lord You Are The Potter
Lord ,You are the Potter and I am the clay.
Mold me and make me, have Thine own way

Lord, I need Your Spirit, Lord, I need Your grace;
help me to run this Christian race.

Lord, I give my life, I give my all to You,
to be a willing vessel, to use me through and through.

Lord, I need Your Spirit, Lord, I need Your grace;
help me to run this Christian race.

another one…Lord I Give You My Heart
This is my desire, to honour You
Lord with all my heart I worship You
all I have within me
I give You praise
all that I adore is in You

Lord I give You my heart
I give You my soul
I live for You alone
Every breath that I take
Every moment I’m awake
Lord have Your way in me

one more…Lord You Are Welcome
Lord You are welcome in this place,
have Your way.
Move by Your spirit in this place,
have Your way.
Send Your anointing in this place,
have Your way.
Heal and deliver in this place,
have Your way.
—-This is our prayer, Lord.
The song that has really been going through my head is – Have Your Way
In my own strength I’ve tried
To live a holy life
Struggling till the end
Then You find me on my knees
Praying God forgive me, please
And I’ll try again

So when will victory be mine
I’m running out of faith and time
To live on a mountain top
It takes more than a will to climb

(So) Have Your way with me
Let Your strength be what flows from me
And let the blood that ran down Calvary
(that You shed for me)
Run through me
Oh Lord, have Your way with me.

It seems like self never dies
The harder I try
It comes back for more
There are times I lose this fight
Before the battle has begun
And Your blessings must wait once more

Though this flesh is what covers me
Holy Spirit take control of me
When I want to give in
Don’t give up on me
‘Cause where grace abounds
There I want to be
You guys are so faithful and you have given up self and are totally depending on Him. That is where He wants you. Let His strength be what flows through you. When you want to give in, God is there and He will NEVER GIVE UP ON YOU!! Continually turn it over to Him. He is in control and He is fighting this battle for you and for Ella!!
We praise God for the fighting spirit that He has placed in Ella.
I am just beaming as I sit here and think about what you all have come through. GOD IS GOOD!!

Songs just keep going through my head. I believe that is how HE is talking to me right now and I hope that you will take something from the songs I’ve posted. Keep the faith.
You guys are awesome.

Love, Melissa

Melissa Morris on October 3rd, 2007 at 8:56 am #

You Are My Strength
You are my strength, oh Lord
You are my light in darkness
You cover me in the night
You make the wrongs thing right
And rescue me

I wait in hope for You, Lord
You are my refuge
The rock on which I stand
May Your unfailing love
Rest upon me now
And shelter me

For Your word is right and true
You are faithful in all You do
May all the earth stand in awe of You

Sorry for the long posts. May God Bless you all today.
Love, Melissa

John & Estela Williams on October 3rd, 2007 at 9:01 am #

After seeing your photo today and reading your update and messages from people who love you guys and pray for Ella daily… I can’t stop crying. Tina you look so beautiful touching your beautiful baby girl. I can’t even imagine going through this… as I was telling John last night. You and Josh are amazing… I just know Ella will come home soon. God Bless… love and miss you guys!

Avery Kronz on October 3rd, 2007 at 9:46 am #

Go CinderELLA go! God Bless You

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