Ella was stable through the night, and overall is looking comfortable.

She had one moment of discomfort yesterday evening which required a dose of fentanyl, otherwise she’s doing well.

Her stats look good too (ph=7.43, cO2=52, pO2=110). Knowing that her lungs function properly when given the right environment is so encouraging.

Ella continues her good behavior this morning. She’s been alert, looking around, and resting comfortably. No changes have been made on her ventilator at this time, but her feedings should be starting again soon.

She had a significant amount of fluid from her chest yesterday (165ccs). Her output has slowed today but we’re hopeful that this is a good thing. We’re waiting on the results from her chest x-ray to know for sure.

Ella’s weight this morning came in at 7lbs 3oz, up from 6lbs 7oz on the 5th. Some of this can be attributed to all the added stuff that’s been attached to her, but you can tell she’s put on some weight. Her little chicken legs are starting to fill in a bit more =).

We’re not sure when Dr. Kays will be performing any additional procedures. Tina and I continue to hope that he wont have to do the scarring in her chest cavity, but we are fully expecting that it will need be done. I think it’s just the concept of this procedure that keeps us in this place, but the truth is, we would rather her have it done then to slide back down this slippery fluid path without a resolution.

Thanks to all for your continued support. Your love and prayers are incredible.

God Bless

Ella had a good day. Her blood gas at 2pm was great, cO2=54, pO2=114. Plus, her chest x-ray looked improved since the surgery. Keep in mind that her total chest fluid output for yesterday was 165ccs. So it was not a total surprise that her chest x-ray looked better – – she was able to get rid of a lot of that fluid build up.

Based on her good results, Dr. Kays weened the ventilator from 60% oxygen to 50% oxygen this afternoon. Also, he started the Portagen feedings again at 4ccs per hour. These are good steps in the right direction.

Tonight, Ella was sleeping a lot and her saturations were at 100 mostly. When she did wake up a few times, she was quite fussy. Based on her high saturations though, it seemed like she was just extra tired (or upset that we woke her up from a great dream)!

Her blood gas at 10pm was cO2=60, pO2=90. At that time, her chest fluid output was only about 25ccs total for the day. This is significantly less.

At this point, we are not sure if that is good or bad. If her chest x-ray looks good in the morning, it is great news. It would mean that we are making progress with the fluid issue (her body is processing the fluid via her kidneys instead of settling in her chest cavity). If her chest x-ray looks worse in the morning, it means that the fluid is not draining as well and is still residing in her chest.

It is our heart’s desire to have the fluid issue resolved, but we do not know what God has planned.

Thank you for continuing to pray for our baby girl.

As I was finishing this post, God just put this verse on my heart:

Psalm 46:10
“Be still, and know that I am God”

We called to check on Ella this morning, and she’s not doing well. Her cO2 level is way high (89!), with a PH of 7.21. Her pO2 is low too (61). She’s also been fussing quite a bit and showing signs of discomfort.

Dr. Kays has been paged and were waiting to hear back from the nurse.

Even though we wish we could do something, ANYTHING, there is comfort knowing that He’s in control.

Please continue to pray for our baby girl.

UPDATED (10:05am EST): Just received a call from Dr. Kays. He’s going to be performing the sclerosis (scarring) procedure on her lungs immediately. He’s also going to be putting her back on the oscillating ventilator in the hopes of expanding her lungs more.

Dear Lord Jesus, we trust in you, and we surrender to you. She is in your hands. Amen.

UPDATED (12:00pm EST): The Lord just gave me this verse while getting ready to go to the hospital:

Proverbs 3:5
Trust in the LORD with all your heart and lean not on your own understanding;

UPDATED (1:50pm EST): Dr. Kays replaced Ella’s two left chest tubes but did not perform any scarring at this time. He did put her back on the oscillating ventilator for now; I’m assuming to expand the lungs some more in preparation for scarring.

They’re also adding another pic line in her left arm to provide an additional entry point for medications. She is stable at this time, but also on a high flow of O2 for now. Once they’re done inserting the pic line, about 20 mins, we should be able to go see her.

UPDATED (3:45pm EST): We finally have been able to see Ella. Ella is not doing well. Her stats are stable, but are being supported with a high volume of O2 (90%).

Ella started fussing shortly after we came in. She turned very purple and her eyes darted around in distress. This was very hard to take in. The nurses gave her some meds to calm her down, so at the moment she’s ok.

We’ve not talked to Dr. Kays yet directly, but the feeling we’re getting from the staff is they’re not really sure what exactly is causing her condition. With that in mind, it’s difficult to figure out how to proceed.

Lord, how far will you be bringing us to the edge? How far? It is not for us to know, but to trust. You are the King of Kings and Lord of Lords, and are worthy to be praised. Thank you Lord for being with us now. It is our hope that you will not take Ella from us, but let her be a testimony to the world representing your Grace and Mercy. We love you Lord. Amen

The story of Abraham and Isaac keeps running through my head (Genesis 22).

Below is the message that Tina and I listened to this morning from Dr. Charles Stanley. It’s about 25 minutes long and is titled:

Responding to Life’s Trials

It just confirms where our trust and focus needs to be, and gives us insight in how to pray to our Lord during these times. Please listen if you can. Press the play button on the left to start:

[mp3]/music/itm20070808.mp3[/mp3]

Around 6:30pm, Ella hit her low point. Her blood gas turned up with cO2 of 120! If that problem was not corrected quickly, it could have been bad.

Fortunately, right before this low point hit, God had ministered to our hearts by reading all the posts on the blog at her bedside. One of them spoke to us so deeply, it seemed as if God himself put the words down. It was the exact right message that we needed to hear.

That provided a peace that was beyond amazing as we entered this scary, unknown situation with Ella.

Right after, Dr. Kays turned the corner. He shared that he was not sure what was going on with her, but something wasn’t right. After thinking about it, he made some changes to her vent, med changes, added antibiotics and told us that he wanted to replace her right chest tube.

Another component that changed today: her urine output slowed down. So, he decided to put the catheter back to start monitoring her fluid output again.

Although fluid in her chest was a partial reason for her condition, he still feels that there is something else going on. He ordered several tests and cultures so that he can rule out infection. One of his theories is that she may have vomited and aspirated some of her feedings.

Something is different based on how she is responding. Josh and I were praying fervently that God will reveal it to Dr. Kays.

He did mention that he might have to give her steroids. It is something that they try not to give babies because some studies in preemie babies have shown that steroids cause slight difference in neurological function when compared to preemie babies that did not have steroids. So if they can avoid it, they do.

About 3 hours later, and especially with all of you praying, Ella has taken steps back to the right path. Her most recent blood gas at 8:35pm and at 10:15pm were much better and her saturations have been near 100.

We had the privilege of watching Dr. Kays in action as he replaced her right chest tube. That was so incredible. Of course to him, that procedure is minor and no big deal. But it still amazes us to see him in action, using his passion and God-gifted talent.

Ella is still on quite a bit of sedation and they are watching her closely. She will be having blood gases every couple of hours to monitor her progress. As long as she can remain stable, he will not have to give her steroids.

Nurse Michelle is working tonight. It is comforting knowing that Ella is in familiar hands!

Dr. Kays admitted that he was surprised and not sure why she had such a turn-around this evening, but he is pleased. We know why she had one.

Thank you so much for praying for Ella. It makes all the difference.

It’s 7am EST. Shift change time at the NICU. I was hoping to catch Michelle before her shift was over. She was gracious to give me the 5 minute rundown right before she handed things over to the next nurse.

Ella did well last night. Her cO2 fluctuated, but kept within an acceptable range. Her PH level was down (more acidic) without being related to her cO2 level, so they’re giving her some sodium bicarbonate to bring it back up. Her potassium is a little high, possibly from the couple doses of vecuronium she received for her procedure, so they’re managing that by reducing her feeds that contain potassium.

Her chest tubes have not drained that much, but so far she has had no episodes like we saw yesterday, and overall looks a lot more stable (Praise God).

Tina was able to give Ella another manicure last night. Dr. Kays was getting ready to do her chest tube procedure, when another critical baby needed his attention. While he stepped away, we figured it would be a good time to take care of her long nails. It’s a lot easier to file a baby’s nails when she’s heavily sedated and been given a dose of vecuronium (a paralytic). =)

If you didn’t get a chance to read the heavy post yesterday morning or the evening update, you should do so. Be sure to catch the comments as well.

Yesterday was an incredible roller coaster ride of emotions. Seeing our baby girl not do well throughout the day, and having the visual of her suffocating was the toughest thing I’ve ever experienced. We were so raw throughout the day, and the tears flowed constantly.

The Lord’s peace was known after reading your comments on our blog. It fell upon us like an afternoon rain, washing our anxieties away.

The value of your prayer support is beyond measure and I can’t imagine going through this without the support of friends and family.

Thanks to all of you who write the comments, who send us encouraging emails, and to those prayer warriors who may not post comments, but are doing incredible battle on their knees for us!

God Bless you all!

Ephesians 6:12
For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.

Ella had a bit of a rough day again.

When she was sleeping, she appeared to be fine. Her blood gases and saturations were in the acceptable range. But in between, she had a few episodes.

All the normal things to calm her: suctioning, changing her diaper, switching positions, placing your hands on her head and feet, talking/singing to her…none of these were good enough. She would get so upset that her skin turned a deep red/purple color.

In those moments, I think she is scared. She is having a tough time breathing and she gets upset. When she gets upset, she creates more secretions in her airway which make it even tougher to breathe. From there, it spirals and the situation gets worse. At that point, the ventilator can’t do its job either.

Emotionally, it is tough to watch her struggle and feel so lousy. You want to take it all away and make it better for her…and you can’t.

Dr. Kays came into the hospital to take care of another baby and stopped by to see her. Her chest tubes only let out 3ccs for the day, so he feels like the fluid issue is resolved (otherwise we would see more coming out). But now, we have a different problem and he is not sure what it is.

His best theory is that this is a delayed response to something that was stirred up from the surgery on Wednesday. Although not much was done, that is the only variable that has changed dramatically for Ella.

He feels confident that she can get through this challenge, but we need to keep her stable. At this point, if she turns the wrong direction, she is at a high risk to go south fast and it may be tough to get her to turn around.

With this new challenge, Ella has taken several steps back in her progress. There were times today where they had to sedate her and turn up the oscillating ventilator to 100% oxygen, just to calm her down. If you remember a couple of weeks ago, Ella was maintaining well with 35% oxygen on a standard ventilator.

You can just tell that she is having a tough time breathing. Dr. Kays and I were at Ella’s bedside and he was looking at her, thinking and pondering about what could be happening.

I have been praying that God would give Dr. Kays the wisdom to know the next best steps.

I felt prompted to ask him about Ella’s scar. A few days ago, her scar was clear – – you almost couldn’t see it. It was healing so well. Now, her scar looks pronounced and bright pink. All of a sudden, he said, “systemic inflammatory reaction”. He walked away slowly to the nurse’s station, exchanged a few words with Dr. Saxonhouse, and sat in the chair pondering a bit more.

Then, he stood up with a confidence and walked over, “It’s time”. We knew that he was referring to steroids. They can take 24 hours to begin showing a positive effect. Then, he went through and explained about how he has been debating about giving her steroids the past day or so. When I asked him about the scar, something in him triggered and it makes him feel like now is the right time.

Although there are risks, the steroids will help her body fight off the inflammation. Immediately, Josh and I felt such a peace about this next step. We know that something is not right with Ella. And this time, it feels different than the other challenges we have faced. It is an infection or something outside of the standard set of issues that CDH babies are known to encounter. We sense that if we wait too long it might make things worse for Ella.

And through all of this, she is such a strong baby girl. You can sense her sweet spirit and her willingness to keep fighting.

During our visit, she woke up and looked around for 5-10 minutes and remained calm. This was not something we had seen from her the past couple of days. It was her way of letting us know that she is still holding on, despite the numbers.

Thank you for your prayers. He hears all of them and collects each tear. Ella is drawing all of us closer to our Creator.

Ella’s night and early morning has been rough.

About 10:30pm, the nurse increased the fentanyl. That seemed to do the trick and Ella slept most of the night. But when she would awaken, things were touchy.

The blood gas at 3am was not good. Her pH balance was off and the cO2 was very low (alcalotic). Dr. Kays was paged immediately. He made changes to the vent setting and asked that they place the brain oximeter back on her forehead (you don’t want the alcalotic condition to be absorbed into the brain). He asked for a repeat blood gas in an hour.

At 4am, her blood gas was better (pH of 7.45, cO2=49, pO2=62). But the next blood gas this morning was back in the wrong direction with the carbon dioxide too low (pH level=7.29, cO2=36, pO2=76).

The other day, Dr. Kays had switched Ella to the oscillating ventilator because her cO2 level was too high and to help the lungs expand more. But with the cO2 numbers getting so low, he may decide at some point to place her back in the standard ventilator.

Her chest x-ray this morning shows that her right lung has collapsed a bit. This, of course, is making it tougher for Ella to breath since that is her better lung. They have positioned her towards the right in the hopes of getting that lung to expand again.

When Ella is awake, they are giving her sedation to keep her calm (remember she also does not like laying on her right side). Without sedation, she is getting very upset and is having a tough time breathing. Her saturations are in the high 80’s to mid 90’s and she is on 100% oxygen. She is struggling.

Please continue to pray for sweet Ella this morning. We are walking on thin ice in this moment: we just need for her to remain level and not nose dive. Dr. Kays plans to be at the hospital later and we look forward to getting an update from him.

Psalm 143:8
Let the morning bring me word of your unfailing love,
for I have put my trust in you.
Show me the way I should go,
for to you I lift up my soul.

UPDATE (3:15pm EST): Ella does not look good. We have not seen her look this way in weeks. She is so puffy and having such a hard time. She looks like a completely different baby.

As we sit near her bedside and try to not make any noise, her saturations are in the high 80’s. After this morning where her cO2 was too low, now her cO2 has gotten too high again, 96 (should be around 40).

Dr.Kays looked at the x-ray and said that he does still see fluid on her right side.

The brain oximeter shouldn’t be below 51. We are seeing high 40’s.

Again, the numbers are glaring and she does not look good. But God prepared our hearts for today. Thanks for all your posts and prayers – – all of you are ministering to us in this time.

This hymn keeps coming into our mind and we keep singing it:

O Lord my God! When I in awesome wonder
Consider all the works Thy hands have made.
I see the stars, I hear the mighty thunder,
Thy power through-out the universe displayed.

Then sings my soul, my Saviour God, to Thee;
How great Thou art, how great Thou art!
Then sings my soul, My Saviour God, to Thee:
How great Thou art, how great Thou art!

UPDATE (5:30pm EST): Your prayers are making a difference in Ella’s comfort and her strength to keep fighting. Her last blood gas was traveling in the right direction, cO2 went down to 85 and her saturations have been between 98 and 100.

When through the woods and forest glades I wander
And hear the birds sing sweetly in the trees;
When I look down from lofty mountain grandeur
And hear the brook and feel the gentle breeze:

Then sings my soul, my Saviour God, to Thee;
How great Thou art, how great Thou art!
Then sings my soul, My Saviour God, to Thee:
How great Thou art, how great Thou art!

UPDATE (9:30pm EST): The Lord is so good. All of your prayers mean so much.

He has placed a hedge of protection around us and filled us with joy. The nurses can’t figure out why we are doing so well in a moment that seems dark. The Holy Spirit has been continually feeding us truths and promises. As we seek Him more earnestly, we are experiencing His works first-hand, and being filled us with an amazing oneness and peace.

And the words of encouragement and hope from all of you are amazing. God is using so many of you out there to minister to us. Some are posting, others are emailing, some are leaving voicemails and others are simply on their knees. It is so amazing to see God work and know that He is in control and orchestrating every detail!

Ella’s last blood gas was ideal – – pH level was 7.5, cO2=44, pO2=117. Dr. Kays was amazed.

We take it in as fresh air, knowing that it means Ella is experiencing the same. There may be dips, but we trust that He is sovereign and Ella is resting in His hands.

We continue in prayer this evening at her bedside and will keep you updated on her progress. Thanks again to all of you. It is such a privilege to be Ella’s parents and to experience this journey with all of you.

And when I think that God, His Son not sparing,
Sent Him to die, I scarce can take it in;
That on the cross, my burden gladly bearing,
He bled and died to take away my sin:

Then sings my soul, my Saviour God, to Thee;
How great Thou art, how great Thou art!
Then sings my soul, My Saviour God, to Thee:
How great Thou art, how great Thou art!

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.

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.

Ella had a restful night. She did a lot of sleeping.

When we were there for her last blood gas around 10pm, it was great.

When they drew the next blood gas at 4am, it was not good.

Her pH level was 7.0, cO2=83, pO2=123. They paged Dr. Kays with the information. He made some slight ventilator changes and re-took the gas at 6am and it was a little better. Her pH level was 7.14, cO2=73, pO2=99. They repeated another gas at 8am and it was still creeping in the right direction. Her blood had a pH level of 7.39, cO2=49, pO2=96. They plan to take another one at 2pm.

Dr. Kays came by this morning and removed the right chest tube that we just experienced him replacing Saturday evening, since it was no longer draining. Her fluid output on the right hand side, from the tube he put in last night after the CT scan, released a total of 107ccs, as of this morning at 7am (that is a lot for a 12-14 hour period). 23ccs were released from the new left chest tube and 19ccs from the previously existing chest tube, for a total of 42ccs.

So, 149ccs off of Ella! That is why she is responding so much better. I can’t even imagine what that must feel like for her.

Dr. Kays recognizes that this fluid issue is holding her back from her lungs developing. So, he has ordered another CT scan for today. He doesn’t like to do that because they have to transport her down to radiology with the ventilator, drips, nitric oxide, etc., attached to the bed (see picture), but at this point, he cannot tell exactly where the fluid resides unless he gets the CT scan. Also, he knows that the fluid builds up and accumulates and it is confirmed directly in Ella’s numbers.

We are still waiting on the report from radiology to see what the results are from the contrast x-ray concerning her superior vena cava.

Please pray that Dr. Kays will be given insight and wisdom for this issue. Also, that Ella will maintain her strength today and remain stable through the transport to get the CT scan.

This verse came to my mind this morning. Although this fluid issue is a mystery to us, God knows exactly what Ella needs. It also reminds us that He is ever-present with Ella, ALWAYS. And that He made Ella with His own hands, just perfectly.

Psalm 139

1 O LORD, you have searched me
and you know me.

2 You know when I sit and when I rise;
you perceive my thoughts from afar.

3 You discern my going out and my lying down;
you are familiar with all my ways.

4 Before a word is on my tongue
you know it completely, O LORD.

5 You hem me in—behind and before;
you have laid your hand upon me.

6 Such knowledge is too wonderful for me,
too lofty for me to attain.

7 Where can I go from your Spirit?
Where can I flee from your presence?

8 If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.

9 If I rise on the wings of the dawn,
if I settle on the far side of the sea,

10 even there your hand will guide me,
your right hand will hold me fast.

11 If I say, “Surely the darkness will hide me
and the light become night around me,”

12 even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.

13 For you created my inmost being;
you knit me together in my mother’s womb.

14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.

15 My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,

16 your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.

17 How precious to me are your thoughts, O God!
How vast is the sum of them!

18 Were I to count them,
they would outnumber the grains of sand.
When I awake,
I am still with you.

19 If only you would slay the wicked, O God!
Away from me, you bloodthirsty men!

20 They speak of you with evil intent;
your adversaries misuse your name.

21 Do I not hate those who hate you, O LORD,
and abhor those who rise up against you?

22 I have nothing but hatred for them;
I count them my enemies.

23 Search me, O God, and know my heart;
test me and know my anxious thoughts.

24 See if there is any offensive way in me,
and lead me in the way everlasting.

UDPATE (4:00pm EST): We just called in to check on our girl. Ella had another CT scan done, and at this moment was being put back in the NICU. Dr. Kays has yet to see the results of her CT scan. We did find out that Ella’s blood gas at 2pm looked good, similar to the better one she had this morning. We continue to rest in the peace of our Saviour.