Tina and I had a short visit tonight. When we arrived, Ella was sleeping soundly. She peeked her eyes open for a moment, and then went back to sleep. There was one small moment of fussiness, but other than that, she seemed real comfortable.

Her blood gas at 10pm was good (pH=7.51, cO2=37, pO2=86). The ventilator was weened to 70 breaths per minute and her oxygen down to 46%.

The total chest fluid output so far is 44ccs and she’s on track to have another good output of urine as well.

Going to keep the post short tonight so we can get to bed before 2am =).

Thanks for your continued prayers and support. Love you all!

Called to check on our baby girl this morning, and found out that Andrea (one of our fav nurses) was taking care of her today.

Miss Ella bun had another good night. She was on her back until she was flipped over at 8:30am this morning. She tolerated the turn very well and didn’t fuss much at all. She settled right back down and fell back asleep for nurse Andrea.

Her gases at 4am looked good: pH=7.51, cO2=37, pO2=93

How excited can you get over urine? When your daughter ouputs 320ccs, it’s a good thing. That’s the most she’s put out in a 24hour period. Hopefully she’ll keep up this trend because it should help with her edema.

She also put out 70ccs of chest fluid. This is good because it give Ella relief from it building up in her chest, but we need this to stop all together. This is the fluid issue that has plagued us for weeks now, and we just need it to resolve.

We haven’t heard from Dr. Kays yet. We’re curious to hear what his thoughts are on her next steps.

Lord Jesus, we praise You for this little girl. You have blessed her with such strength. We continue to pray for healing in our precious child’s body. You know everything about her, because You created her. Ella is in your hands Lord. Amen.

Revelation 4:11
“You are worthy, our Lord and God,
to receive glory and honor and power,
for you created all things,
and by your will they were created
and have their being.”

UPDATE (3:30pm EST) by Tina: Nurse Andrea called to give us an update on Miss Ella. Her blood gas at noon was pH level of 7.38, cO2=49, cO2=152, which is good. She mentioned that Dr. Kays was at Ella’s bedside and handed the phone over to him.

Dr. Kays stated that her chest x-ray this morning looks better – – her lungs looked better! Also, he mentioned that the chest tubes output 70ccs yesterday and that they appear to be continuing to drain which is good.

This part we were not mentally prepared to hear: since her chest x-ray shows that her lungs were more expanded, he went ahead and scarred both of her chest cavities by inserting betadine through each chest tube. He felt it was the right timing; it was our best opportunity to use this technique. It will take 2-3 days for us to really assess whether the chest wall scarring really makes a difference in solving the fluid issue.

He mentioned that he is going to follow-up with radiology on the contrast x-ray of her SVC, but has not received any information so far. He thinks that her overall adema and puffiness is simply related to the fluid issue as a whole; not that anything has changed with the status of her SVC.

Also, he mentioned that Ella was having some funny movements around her mouth today. So, they increased her versed and phenobarbital doses. He is not sure if it was seizure activity, but it likely may have been. Until today, they had not increased her dosage of either of the anti-seizure meds, so it is likely that she has outgrown the dosages.

We were excited to think that maybe since she had gone this long, that she might not need the increased dosage of the anti-seizure meds or maybe not need them at all. I guess only time will truly tell.

Lord, we are trusting you with all the details.

Psalm 9:9-10
9 The LORD is a refuge for the oppressed,
a stronghold in times of trouble.

10 Those who know your name will trust in you,
for you, LORD, have never forsaken those who seek you.

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

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

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

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

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

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

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

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

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

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.

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.

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 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

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. =)

The picture of her stats above represents the best birthday present Ella could give her dad…next to the Porsche she buys me someday ;-).

Ella is doing good on this Saturday. 100% on her saturations most of the time, and a very comfortable baby girl. The rate of her fluid output (14ccs) has slowed down for the same time frame as yesterday (27ccs), but she doesn’t look swollen, which is good. Her chest x-ray doesn’t look better than yesterday’s, but it doesn’t look a lot worse either.

The fact that she is not fussing quite as much is an indicator to us that she’s doing better. Oh, she will do the normal baby fuss, but not the scream-so-hard-that-my-head-turns-bright-red-and-my- stats-drop fuss.

Overall she looks better today then she has the last few days. We’ve been able to enjoy a good amount of awake time with her as well. We don’t know what tomorrow will bring, but we will drink in all the goodness of today.

Lord Jesus, thank you for this baby girl. Thank you for the good day. We will praise you today and praise you for tomorrow. We continue to lay it down before you, and look to you through this time. Your grace and mercy abounds. Your blessings overflow. Praise you Father. Amen.

Ella maintained through the night. Her blood gases at 4am were a little worse (cO2=62, pO2=78). She has another blood gas scheduled at noon. Her chest fluid output for yesterday was 67ccs (6 left, 61 right).

We’ve not heard from Dr. Kays regarding her latest chest x-ray. We would hope that it looks better, but we’re not sure what to expect.

When we last saw Ella, she was more comfortable than in previous days. Since talking to the nurse this morning, it seems that she is still comfortable for now.

Thank you for your prayers and support. They sustain us each day.

Galatians 6:2
Carry each other’s burdens, and in this way you will fulfill the law of Christ.