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!

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.

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.

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.

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]

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”

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

To our surprise, Dr. Kays called this morning to let us know that Ella had been bumped up on the surgery schedule. They are taking her down around 10am EST, doing some prep and starting the surgery. The surgery itself should take about an hour and a half, but we will not likely have an update until around 1pm EST.

Once we have the outcome of the surgery with all the details, we will update the post.

Thank you for your continued prayers for Ella.

UPDATE (1:00pm EST): The nurse practitioner just came out to let us know that Ella is stable and looks comfortable. We’re waiting to go back and see her as well as hear the details about the surgery from Dr. Kays. Stay tuned…

UPDATE (3:00pm EST): We spoke to Dr. Kays. He indicated that surgery went ok, but he had to limit the procedure due to Ella’s tolerance. In her left cavity, he placed two larger chest tubes and worked to break up some gelatinous protein build up that he found. Due to Ella’s stability though, he chose not to make any changes to her right side at this time.

For now, he’s going to let her stabilize and then will perform some additional procedures to help her progress forward. One of these may include an intentional chemical scarring of her chest cavity, forcing the lungs to adhere to the chest wall. It sounds worse then it is, but it’s not something you want to have to do either.

We know Dr. Kays carefully weighs all his options, and we trust that if this procedure needs to be done, it’s in Ella’s best interest.

One additional item: Ella’s feeding tube didn’t make it into the right place the other day. So Dr. Kays was able to resolve this during the surgical procedure by passing Ella’s feeding tube by her pyloric valve. This will minimize her stomach expansion while still providing food to our baby girl’s intestines. Ella’s food was stopped temporarily for the procedure today, but we hope they can start it up again real soon.

UPDATE (10:30pm EST): We called to check on Ella tonight. Nurse Janet, one of the Fabulous Four, is taking care of her. This always makes for a peaceful night’s rest!

Since the surgery, she has had a total of 142ccs of chest fluid output (35 right, 107 left). That is a lot of fluid output for less than a 12 hour span!

They took a blood gas this evening and you can tell that Ella has less pressure on her lungs. Her pH level is 7.3, cO2=64, pO2=132. Part of the high pO2 is reflected in the ventilator giving her 60% oxygen versus 50% before her procedure. But even so, we have not seen these types of numbers in a while.

We are still holding out that maybe Ella’s body can resolve this fluid issue before Dr. Kays has to chemically scar her chest wall. Her blood gases and chest x-rays are the most determining factors. For now, we are going to get some rest and pray that Ella has a restful night too.

Thanks again for all the continued prayers throughout the day. We know it makes a difference.

Ella did not do as well today. She is still in the stable range and the cuteness factor is amazingly high. But, her saturations were low 90’s tonight and her last blood gas was pH level of 7.2, cO2=79, pO2=74. This is not real good – – carbon dioxide is too high.

When we visited, we had a nurse that had never taken care of Ella. She seemed really nice, but I think it just made it that much harder to leave our baby’s bedside tonight.

If Mom’s intuition is right, Ella has less and less fluid output over the past several days. I think her fluid build up is to a point where it is now beginning to affect her more. She seemed less comfortable and more fussy tonight. When she did have an episode, it took her a very long time to recover. This is usually her pattern when she is not feeling great.

As of last night when we looked at the CT scan with Dr. Kays, radiology had not published the report on Ella’s superior vena cava. We did not hear an update today either. Hopefully, we can get a status on this soon.

Tomorrow is surgery. We did not hear from Dr. Kays today, so we are not sure about the plan for surgery. We are hoping that we can get more information from him directly tomorrow before the surgery occurs. We are told that it is planned for the early afternoon.

Please continue to pray for sweet little Ella. Petition for the Lord to give wisdom to Dr. Kays, so Ella’s fluid issue can be solved. Ask for the Lord to uphold us, so we can remain strong in His love for us.

Psalm 63:7-8

Because you are my help,
I sing in the shadow of your wings.
My soul clings to you;
your right hand upholds me.

Our 9 week old bun is hanging in there. Her gases at 4am were fair. Her cO2 is a bit on the high side (67), but her pO2 is looking ok (85). Ella was bit fussy for the nurse this morning, but some suctioning, head stroking, and talking to calmed her down.

Her total fluid output for yesterday was 27ccs which may indicate some increased fluid retention in her left chest cavity. This has to be uncomfortable for Ella, so we’re not surprised when she lets us know about it.

How are Ella’s parents doing? We’re hanging in there too. God is using every moment of every day to stretch us, comfort us, and draw us closer to Him.

I woke up the other day with 6 words from a “classic” Christian song in my head: Walk by faith, not by sight

Click here for an audio flash back snippet (Petra – Not by sight).

How awesome to find comfort in God’s Word, from an 80’s Petra song that was drilled into my head so long ago! =)

Tina and I have also drawn closer to the Lord while listening to Dr. Charles Stanley. What an incredible man of God. Every day it feels like his message is tailored specifically for us. The Lord has used these studies to shower us with peace, convict us of our transgressions, and draw us into a deeper fellowship with our Creator.

I’m also finding that as we’ve drawn closer to Jesus, He is giving me words of encouragement throughout the day.

One example occurred when Tina and I were heading out to lunch last Friday. I was sitting an intersection, waiting to turn left onto the main road outside of our community. Traffic can get pretty crazy at this location sometimes, which forces you to wait for a break in traffic.

There are times when I’ve gunned it pretty good, trying to be conservative when Tina’s in the car ;-), knowing that if I didn’t make that break I’d be waiting another minute for the next opportunity. Those of you who know me know what a patient person I am when it comes to driving. (Insert massive amounts of sarcasm here)

On this day, I was waiting for a good bit to make the turn, and I started thinking about ALL the time I’ve wasted in my life “waiting” in traffic. I was stewing over this for a bit, and started to ask, “What could I do during this time so it’s not wasted”. Before I could even get the “What” out, God replied:

Time is never wasted praising God.

Wow…I had to laugh…and I did. God can be funny sometimes in his convictions. His timing was perfect from a comedic standpoint. His point was well taken. Time is NEVER wasted praising God, and we can do it ANYWHERE!

Praising God in the car also makes for a much more enjoyable driving experience overall. Just ask my wife. =)