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

The phone just rang at 8:10pm EST. “Hi, you have a new baby”, was the voice that came through on the other end of the line. “What??!!??”, Josh exclaimed. He was confused. Who is this person and what are they talking about?

It was Dr. Kays. He repeated it again, “You have a new baby”.

Dr. Kays explained that he went in and added another chest tube to the right hand side and replaced a tube on the left hand side. Not much fluid has drained from the left hand side, since he thinks it might be more gelatinous. But he removed 50ccs of fluid from her right hand side (which is where her better lung resides).

They took another blood gas and it was amazing, cO2 in the high 30’s and pO2 at 238. Praise God! He says that she is much more comfortable and responded well to the treatment, hence we have a new baby.

Josh then felt the prompting to make sure that Dr. Kays knows how much we appreciate him and his patience with our baby girl.

The phone was hung up, and we started to cry with joy and praise our Heavenly Father for just this small sign that He is with us and listening to our prayers.

Thank you Lord for giving us this refreshment for our spirits tonight. Thank you for the many followers that have earnestly been praying for us, Ella and Dr. Kays. You are a faithful and mighty God. We praise you for answering our specific prayers.

We thank you for giving Dr. Kays a victory tonight as her care provider, as we sensed that he was frustrated that nothing seemed to be working for Ella. Lord, we pray without ceasing that you will give Dr. Kays the knowledge of the next steps to take to resolve this mystery. We know that her condition with the fluid is getting tougher and tougher to treat. Yet, we know that nothing is too hard for you, the Great Physician.

Lord, we pray for Ella. We thank you for keeping her strong throughout the day. We thank you for providing her comfort in this hour. Lord, please continue to give her strength so she can continue to fight. We thank you for the privilege of being her parents. She is such a blessing to all of us. Already she is doing your work, by drawing all of us closer to you.

We praise you and thank you for using sweet little Ella Renae. We praise you in this storm and hold tightly to your promises. In Jesus Name, Amen.

UPDATE (10:15PM EST): Ella just had another blood gas. Again, it was amazing! Praise God. This is reassuring – – it means she is really feeling better and that her blood gas earlier was not a one-time fluke. This time it was a pH level of 7.40, cO2=55, pO2=277.

They paged Dr. Kays with the blood gas and he reduced the standard ventilator down to 60% oxygen and her saturations are still pegged at 100. She has another blood gas at 4am.

We are so thankful that we received encouragement tonight from the Lord. Through the past few days, we have had peace knowing that He is in control. But we were praying for a reprieve, a break from the storm. We received it tonight and feel refreshed.

Realistically, we know that what happened tonight has not necessarily resolved the problem. Dr. Kays was able to remove a bunch of fluid from her right side, and therefore, her body is responding positively. But, there is still a fluid mystery to solve.

Please continue to join us in prayer that the Lord will reveal the next best steps in Ella’s care to Dr. Kays.

Thanks again to each of you for joining us in this journey – – your support has been amazing. May the Lord continue to speak to all of us through this experience, so we may draw close to Him and hear His voice.

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.