Posted (jooosh) in All Posts on October-1-2007

This is the day that the Lord has made. We will rejoice and be glad in it.

Words cannot even begin to express how awesome our Heavenly Father is!

Our Lord has blessed us more than we could have ever imagined. We praise Him for the gift of Ella Renae! The Almighty God, Prince of Peace, King of Kings, and Lord of Lords. Our counselor, our God!

The Holy Spirit bore testimony in so many ways yesterday. Through hymns and song we could not stop praising our LORD! And we continue to do so.

Thank you, fellow believers, for being obedient to the Spirit. Your words are not your own, but from God! Thank you for being bold, to share what the Holy Spirit put on your heart!

We thank you Jesus for this day, and continue to fix our eyes on you through this storm, trusting in you. Thank you for your peace that surpasses all understanding, and a joy that flows like a fresh spring within us.

To God be the Glory, for ever and ever. AMEN!

Ella last blood gas at midnight showed a pH level=7.59, cO2=36, pO2=58, which means her carbon-dioxide is too low. They paged Dr. Kays with these numbers, but he chose not to make any changes at this time. Her blood oxygen saturations are between 94-96%.

Please pray that God will continue to comfort Ella and give her strength.

UPDATE (4:10 AM EST): Ella’s saturations have dropped a couple times so far tonight. She was scheduled for a blood gas at 4am, but we’re hoping to delay it a bit until she’s recovered her stats. Nurse Michelle and Tina are comforting her at the moment. Trusting and resting in Him.

Holy, holy, holy! Lord God Almighty!
Early in the morning our song shall rise to Thee;
Holy, holy, holy, merciful and mighty!
God in three Persons, blessed Trinity!

Holy, holy, holy! All the saints adore Thee,
Casting down their golden crowns around the glassy sea;
Cherubim and seraphim falling down before Thee,
Who was, and is, and evermore shall be.

Holy, holy, holy! Though the darkness hide Thee,
Though the eye of sinful man Thy glory may not see;
Only Thou art holy; there is none beside Thee,
Perfect in pow’r, in love, and purity.

Holy, holy, holy! Lord God Almighty!
All Thy works shall praise Thy Name, in earth, and sky, and sea;
Holy, holy, holy; merciful and mighty!
God in three Persons, blessed Trinity!

UPDATE (6:00am EST) by Tina: Ella just had a chest x-ray and another blood gas. Her pH level is 7.44, cO2=54, pO2=285. Praise God – – that is the best blood gas that we have seen yet! Keep in mind that she is on 100% oxygen and every blood gas in the past 24 hours has been different (too low cO2, too high cO2, too low pH level, too high pH level, too low pO2, amazingly high pO2).

This baby girl cannot make up her mind with her blood gases. The nurse and respiratory therapist are shaking their heads – – they are perplexed. She is simply not following any set patterns!

Her blood oxygen saturations have been hovering around 99-100 for the past hour.

Her urine output looked better for the past 24 hours which is a good sign (272 compared to 200 yesterday and 143 the day before). This is another positive sign.

The plan for this morning was for a CT scan to be ordered for Ella at 6am. However, Dr. Kays also gave specific orders that if her pO2 on her morning blood gas was greater than 200, to not order the contrast CT (that was not a likely occurrence). Ella’s next blood gas is at 10am.

She is still heavily sedated and having some episodes in between. As you can probably appreciate by now, this is a roller coaster and her stats can change at any moment.

For now, we will bask in this moment of victory. And throughout the day, we will continue to praise God for this beautiful little girl, despite what the numbers show. She is ultimately His child and He is holding her in the palm of His hand.

UPDATE (1:00pm EST) by Tina: Ella did good for the early morning, but desaturated and has needed sedation two separate times. Dr. Kays was present for one of her episodes and tried some different techniques to see if Ella would respond. Probably the hardest one to watch was turning her over on her belly. Some CDH babies respond very well to being on their belly. Unfortunately, Ella didn’t go for that move. He kept trying different things to see if she would like it better. She didn’t respond well.

She was basically in a place where her saturations and blood oximeter were in the very low, danger zones for 45 minutes or so. She was not just upset – – she was mad. And it seemed to last for an eternity. This was really tough to watch.

Another change that he made was switching her back to the standard ventilator to see if she would respond better. She has been on it for 30 minutes or so. They just did a blood gas – -her cO2 was mid 80’s, her pOs was mid 50’s. Her blood saturations are hovering around 87.

You look at her and can tell she is having a rough day. Please continue to pray for Ella’s strength and comfort. Also, specifically for Dr. Kays to be given wisdom and discernment on what next steps to take.

Thank you for joining us through this storm and being an encouragement and support, as all of us cry out to the Father. All we can do is pray and sing our praise songs, remembering that He is in control.

UPDATE (3:45pm EST) by Josh: Just received a call from the hospital. Dr. Kays decided to have the CT scan performed on her chest cavity as well as another contrast x-ray to look at her superior vena cava. They’re packing her up now and taking her down to radiology.

Please pray for answers to be found, and for wisdom for Dr. Kays and the staff.

Keep Ella calm, Lord. We pray for encouraging words this afternoon. Amen.

UPDATE (5:45pm EST) by Josh: Just received another call from the nurse practicioner. Ella tolerated the entire procedure well. We don’t have any test results back yet, but we continue to pray for new wisdom to be found in this information.

We were also told that Dr. Kays has started using nitric oxide at this time. This helps with Ella’s oxygenation and is a “card” in Dr. Kays hand that he had available to play. With this application she is now seeing 100% saturations at this time.

All our hope and trust is in you Lord Jesus.

UPDATE (6:30pm EST) by Josh: Dr. Kays just called. Based on the CT scan it looks like there is more fluid on the lower left of her chest cavity. He’s going to insert some smaller catheters in this area to try and drain the fluid. Hey may also remove the larger chest tubes during this time, but he’s not sure.

Lord Jesus, be with Dr. Kays as he performs this procedure. Guide the tubes into the optimum position for helping baby Ella. We love you Lord. Amen.

Laura Blackwell on September 30th, 2007 at 10:53 pm #

Been waiting up for this update. Will pray now. God be with you in the night.

lisa correia on September 30th, 2007 at 10:54 pm #

Hi Guys,
We are all praying for Ella here in CO and are looking forward to the day when we get to meet her in person. I am praising God for you guys right now! What an incredible example you are to me and so many others. I’m sure all the staff and nurses that aren’t Christians are scatching their heads and wondering what is different about you guys! God is using you right where you are. I can only imagine going through this with a child and yet you are really ministering to so many others in this stressful time for you guys. We will continue to pray for the two of you and sweet baby Ella. If there is anything you need, please don’t hesitate to ask. We love you guys and I know God is going to use all you are going through for good…he already is!

Heidi Anderson on September 30th, 2007 at 10:56 pm #

My hearts aches for you… yet in reading your words of faithfulness I am rejoicing with you.
I am praying for Ella right now…

Kristen on September 30th, 2007 at 11:14 pm #

Lord there are no words. . . but thank you will have to do. Thank you for this child, for this father, for this mother, for the entire family and staff, friends, all of them. Thank you for pouring out your blessing on them. Most of all Jesus. . . thank you for Ella! Sweet dreams little love.

William Abboud on September 30th, 2007 at 11:31 pm #

Ella, the angel of the lord… We love you… We respect the hard situation you are passing through even while you are still a child…
God had chosen you to show his glory… God had chosen your Mom and Dad, because he trusts their love to him…
Thanks for you guys… you are, the three, a real precious blessed family…
You are making what is supposed to be a disastrous tragedy in the eyes of the world, a real victory in Christ… a chance to union our hearts from all over the world to praise and worship his almighty name… to declare that we depend on him and only on him… because he is our lord and savior… he is our king…
Lord we surrender to your will… and we throw our pains and heavy loads on your shoulders…
You love Ella and her parents more than us, and we know that you are in control O’ Lord… and you will give the best…
We love you…

The Brittain Family on October 1st, 2007 at 12:11 am #

OK, after a good cry and more prayers for little Ella, we came up with 3 questions to ask the medical team…if they’ve already been considered, please ignore : ) What are the advantages of low dose vs. high dose steroid treatments? Any advantage of insulin therapy at this time? Any dietary changes that might be beneficial? If Ella is suffering from systemic inflammatory reaction as was posted earlier it seems like perhaps some of those things can be critical to her recovery. You have been such an incredible voice for your little daughter…we keep fighting by your side and putting our trust in Him.

Joel Snyder on October 1st, 2007 at 12:48 am #

Ella, Please rest and know that I am praying for you while you sleep tonight. God please watch over this precious gift that you have given us. I will check on you tommorrow. Love, Grandpa!!!!!

Kristen on October 1st, 2007 at 1:41 am #

Checking your post from work in the wee hours of the morning. I am praying for Ella and that when you do cat nap, the rest would be powerful and restoring so that you can continue to draw along side your baby girl. Ella, miracle child, we love you so.

Josh on October 1st, 2007 at 4:19 am #

As I read your post this morning, I was reminded of this Psalm:

When my heart was grieved
and my spirit embittered,
I was senseless and ignorant;
I was a brute beast before you.
Yet I am always with you;
You hold me by my right hand.
You guide me with your counsel,
And afterward you will take me into glory.
Whom have I in heaven but you?
And earth has nothing I desire besides you.
My flesh and my heart may fail,
But God is the strength of my heart
and my portion forever.
Those who are far from you will perish;
You destroy all who are unfaithful to you.
But as for me, it is good to be near God.
I have made the Sovereign LORD my refuge;
I will tell of all your deeds.

-Psalm 73:21-28

May God be the strength of your hearts and your portion today. I love you all.

Lesli Richards on October 1st, 2007 at 4:31 am #

Checking in our sweet baby….praying that Ella would keep the good numbers going for her next blood gas, and for strength and endurance for Mom and Dad. I am so amazed at the impact you are having on so many lives, as people watch how God is leading you through this. I am so blessed as I read the prayers of so many…knowing that we are all crying out to God in a big chorus, praising Him, petitioning Him, resting in Him….it’s just a little picture of what eternity with Him will be like…being a part of that great chorus just singing “Holy, Holy, Holy.” Ella is so little, but is making such a big impact in God’s economy.

Love, Lesli

Eusey Family on October 1st, 2007 at 4:31 am #

You show them Ella! We continue to pray and await more good news.

Adrienne (Melissa's sister!) on October 1st, 2007 at 4:54 am #

I cannot help but sit and cry at my computer just overwhelmed at the Love that the Lord has for us. Look at the body of Christ…. wow… WE ARE IN THIS TOGETHER – right there with you as much as we can be!

He indeed does love Ella more than any of us could ever even touch and He alone knows the number of her days. He will not take her before it is her time and her plan for her on this earth is complete! The numbers really don’t mean a thing because all of this is in the hands of OUR GOD.

Whenever I step back and look at our children and ponder HOW MUCH WE LOVE THEM… it seems so trite to say, but it is a perfect picture of what the Lord feels for us – He loves us and wants every good thing for us. Sometimes He sees the things around the corner that we can’t and in protecting us He leads us another way…

We don’t know what awaits around this next corner – WE PRAY AND PLEAD FOR HEALING! When we can’t see His hand we will trust His heart for Ella. He knows just what she needs – just when she needs it.

I still love that picture of “The Great Physician” that you posted weeks ago. Such a great picture to keep in mind. HE IS IN CONTROL.

You are at the forefront of our thoughts and prayers. Much love across the oceans…

Roxie Moore on October 1st, 2007 at 5:10 am #

We are praying for you little Ella, you are a gift from our Father in Heaven. We praise His name for your life and all the lives you have already touched in your in your 70 days with us. You keep it up little one. God is Great and His name is being praised for your life and health in places far away. Josh and Tina God has honored you with His precious Ella. We will continue to lift you all up and check for updates several times as day. May your feet not touch the ground.

Lynette Ladd on October 1st, 2007 at 5:17 am #

Psalm 67: God be merciful unto us, and bless us, and cause his face to shine upon us: Selah. That thy way may be known upon earth, Thy saving health among all nations.
i awoke praying for Ella, my night your day ,Sun night for me,Sat.morn for you.Oct. 1.
Then The Lord turned me when I awoke to this psalm.
Take it. It’s yours.
Friend of Adrienne Bellaire, KSA

Joel Snyder on October 1st, 2007 at 5:30 am #

O.K. Ella Renae so you want to keep everyone guessing. I hope you have a good day today and show us some progress. Grandpa will keep praying for you Dr.Kays and staff. Tina and Josh keep the faith. Love, Grandpa!!!

Loren on October 1st, 2007 at 6:22 am #

I will pray even harder today.

Shelly on October 1st, 2007 at 7:46 am #

I am praying for Ella to have a better day! GOD IS GOOD GOD IS GREAT!!

Mike and Carol on October 1st, 2007 at 7:48 am #

Precious Ella we pray that God will send his holy spirit to heal your little body. Josh and Tina your trust and faith will be rewarded for our Lord is gracious and our rock. We will continually pray for you all.
Friends of Adrienne Bellaire

Williamsburg on October 1st, 2007 at 8:02 am #

When I told Maren that baby Ella was having a rough time yesterday, she just looked at me blankly, like, That is unacceptable! “Jesus will fix her, Mommy” she told me this morning with the unshakeable faith of a child. Jesus, thank you for the faith that baby Ella is inspiring in more people than we can begin to know. Help us, in the midst of understanding that You are good in the midst of _all_ circumstances, to hold onto our childlike faith in you, unshaken by anything. We love you, Lord, and thank you for the way you are working in this family. Amen. XOXOXO

Char Snyder Jordan on October 1st, 2007 at 8:04 am #

Dear baby girl, please rest and talk with Jesus. We have been blessed with your presence. We pray for God’s will and hope for your baby body to heal. Strength to your parents and those who love you. In Jesus name, Amen
Lol Aunt Char and Jim

Gloria & Red Jacobsen on October 1st, 2007 at 9:06 am #

Little Ella has her way of keeping us all in prayer,Somehow the Lord is working His miracle through Ella for us all to have a prayer partership in God’s miracle of Ella’s recovery process. Tina & Josh your steadfast faith in our Lord Jesus is beacon of faith for us all. Love and steady prayer going on!here! Gloria & Red

Euseys on October 1st, 2007 at 9:22 am #

St. Theresa’s Prayer

May today there be peace within.
May you trust God that you are exactly where you are meant to be.
May you not forget the infinite possibilities that are born of faith
May you use those gifts that you have received and pas on the love that has been given to you. May you be content knowing you are a child of God. Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us.

Dawn Torrence on October 1st, 2007 at 10:09 am #

I ran across your site doing a search for CDH families. What a precious little girl you have. I will definitely keep you all in my prayers. I hope you get a chance to join us over at CHERUBS (www.cdhsupport.org) – we have over 1900 CDH families and I know they would all love to get to know and pray for Ella.

Lesli Richards on October 1st, 2007 at 10:30 am #

Oh, Lord, we lift up Ella to you. Please bring an incredible sense of peace and well-being over Ella. Please calm her. I pray that you would use these episodes of Ella’s to kick-start her body into getting rid of her fluid and strengthening her lungs…please use them for her good. Father, please give Dr. Kays widsom in handling her. We thank you for him and his dedication to healing Ella. Please give Tina and Josh precious moments of peace and rest today to refresh them for the night watch. Lord, I pray that you would stablize Ella’s numbers. Lord, I thank you for Ella’s life this day..she is such a gift. Amen

Laura Blackwell on October 1st, 2007 at 10:49 am #

Watching for your updates. I think of Ella all day. Praying for your peace and moment by moment strength and knowledge far beyond even his own for Dr. Kays.

tamara on October 1st, 2007 at 11:42 am #

Tina and Josh,
Really at a loss for words right now. So I seek His peace. The body of Christ is with you, I agree. He has trusted the two of you with this because He knows you are faithful. What an honor to be chosen by the Lord to make an impact for His kingdom. That is what is happening!! Ella is touching so many people in such a deep way. Her story is making an ETERNAL difference in the lives of many people. The enemy knows that and is trying to come against that. He will loose. While I have been reading over the past few days and seeing all the posts with people sharing what God has laid on their hearts, a song came to mind that we sing alot at my church. Just remember no matter how hard Satan tries to attach the three of you that
“the enemys been defeated,
and death couldn’t hold Him down.
we’re gonna lift our voice in VICTORY,
we’re gonna make our praises loud”
“Shout out to God with the voice of triumph” I know things are tough right now. The pit in my stomach is all too familiar, but He is a mighty God who never leaves us. In that, no matter what, we have a reason to rejoice. I had an idea that maybe everyone who reads the blog, if we could set a time this evening or early morning that we will all pray for Ella, all over the world, but at exactly the same time. When two or more are gathered together…. How about hundreds!!!!! Just a thought.
In His name

Jessica Morgan on October 1st, 2007 at 12:14 pm #

The “belly flip” was definitely not something that was easy to see, Arissa still had her cannulas in, Dr. Kays was almost positive she’d need another run at ECMO. She was so mad that she did a few ‘push-ups’ to show Dr. Kays exactly how mad she was. She turned purple at least once daily and was lovingly deemed the “wild child” The Lord worked through Dr. Kays and the amazing team of nurses to give us our miracle and we are praying constantly for the same for you. Sometimes watching Dr. Kays work it would almost seem that someone had whispered something to him. I feel blessed just to know of you and your family, your faith is something amazing. I see a lot of familiar names for your nurses, Michelle was one of Arissa’s ‘angels’ and it is no exagerration to say that we love her! I knew from the minute we found out about Arissa’s condition that she was perfect in every way and she was meant for us, God doesn’t make mistakes. We knew that if we did all that we could that the Lord would take care of the rest, I know in my heart that He gave her the best team in the world to get her through, I really can’t say enough about the doctors and nurses at Shands. Please know that your baby girl has cheerleaders here in Maryland and more in California as my family and friends continue to keep her in our prayers.

Dirrim family on October 1st, 2007 at 1:03 pm #

As I was praying for you all this afternoon a song that I sing to my children popped into my head. It is so simple but full of truth. Rest in His truth.
“God is so good.
God is so good.
God is so good.
God is so good, He’s so good to me.”
Lord- I lift up baby Ella to you and ask for your peace to surround her during this procedure. May answers be given from this test. Give Dr. Kays wisdom. May this be the step on a road to healing. You are so good! Continue to strengthen Tina and Josh. I ask this in Jesus name.
Our family continues to pray for yours.
The Dirrims

Susan Stroble on October 1st, 2007 at 1:04 pm #

I praise God for your testimony of His goodness in the land of the living. I praise God for sweet Ella and the will God has given her to fight for life. I will continue to ask God to give Ella the energy that works so powerfully in Jesus to help her be victorious. “When the enemy forces come in like storm, the battle belongs to Lord. He’s raised up a standard the power of His blood. The Battle belongs to the Lord. And we sing glory, honor, power and strength to the Lord.” We praise God that He is fighting for Ella and greater are the forces for us than against us. May God continue to bless your family as you give Him the praise and glory. God bless you and strengthen you in the days ahead and we wait with you in joyful anticipation to the answers of our prayers. Love in Christ, Susan a friend of the Costas family, Adrienne and Melissa

Joel Snyder on October 1st, 2007 at 1:06 pm #

Ella, I am praying that you can get some answers this afternoon from your tests and some relief. Lord please help Dr. Kays and staff find the path to helping Ella. All my Love, Grandpa!!!!!

Josh on October 1st, 2007 at 1:15 pm #

I happen to have a morning alone and after spend some wonderful time basking in the silence, I read your latest post. I am praying that God will sustain her and continue to give both of you peace. Your faithfulness has been evident to all and your words and trust in the Heavenly Father have been a testimony of faith to my own children–Thank you.
Ps 115:1-2,9-13
“Not to us, O Lord, not to us but to your name be the glory, because of your love and faithfulness. Why do the nations say, “Where is their God?” Our God is in heaven; he does whatever pleases him.
O house of Isreal, trust in the Lord–he is their help and shield.
O house of Aaron, trust in the Lord–
he is their help and shield.
You who fear him, trust in the Lord–
he is their help and shield.
The Lord remembers us and will bless us: He will bless the house of Isreal, He will bless the house of Aaron, He will bless those who fear the Lord–small and great alike.”

Lord bless baby Ella today.

Becca Richards on October 1st, 2007 at 1:29 pm #

Dear sweet Ella is so cute. The bible says “Soverein Lord, you have made the heavens and the earth with your great power and outstrected arm. Nothing is to hard for you”, INCUDING healing Ella. We are all praying for you guys.

Williamsburg on October 1st, 2007 at 1:32 pm #

“For this reason [His manifold wisdom being made known to the universe] I kneel before the Father, from whom his whole family in heaven and on earth derives its name. I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge – that you may be filled to the measure of all the fullness of God.
Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.” Eph 3:14-21, for all of you with every fiber of our being. Fierce hugs. XOXOXO

Daphne Hollowbush on October 1st, 2007 at 2:30 pm #

We pray for you and Ella and for wisdom and direction for Dr. Kays. You are in good hands. The “great physician” is in charge. Prayerfully, Daphne & Ron Hollowbush

Avery Kronz on October 1st, 2007 at 3:20 pm #

Lord Please heal Baby Ella and keep her and her family safe. Lord please draw her family to your self during this time. Amen. We are praying for you guys. Love the Kronz family

Shelly on October 1st, 2007 at 3:29 pm #

We pray for the tests to show DR. Kayes the way to go and treat Ella. Praying in TEXAS

Joan and Steve Odell on October 1st, 2007 at 6:36 pm #

Dearest Father – we praise you in joy and thanksgiving for each and every person, wherever they are and the prayers, fear, tears, rejoicing and coming together with deepening faith in Your precious name for this very special little family = how great Thou art!! Amen Steve and Joan

Angie on October 1st, 2007 at 7:49 pm #

Praying for you guys. Be strong Ella! 🙂 ~Nurse Angie

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