We thought you might appreciate seeing Ella during one of her moments. Yes, believe it or not, that is the loudest silent cry that you will ever hear. But it is reassuring to see her cry and fuss too…she is getting stronger and stronger as the days pass.

As of this morning, she is stable and doing well. Her latest blood gas was cO2=55, pO2=121. Dr. Kays has decided to hold off on any ventilator changes for today.

Praise God – – the additional amount of octreotide medicine seems to be kicking in. If you remember, her total chest fluid output for Wednesday was 105 and Thursday was 120. On Friday morning, the octreotide meds were increased and this brought her total for yesterday to 80.

Thank you for all the continued prayers. You are witnessing how He is answering them.

The Holy Spirit blessed us this morning:

Seek God, moment by moment, and live in His truth. May all of us be obedient and take a few moments to get away from the distractions in our lives, be still and listen. Drink in the truth of Him and the peace that He can provide. The world will not understand. It may not make sense by just looking at your circumstances. But God is sovereign and He is always in control of your life and all the details. Seek Him.

Ms. Ella has found her gator spirit in the form of a bear. Nurse Michelle presented our baby girl with this stuffed animal, as well as a Gator blanket, to confirm once and for all that Ella is a true Gator Girl.

I know our friends just north of us would like to think otherwise, but when you’re born in Gainesville, Florida, you don’t have any other choice. And yes, the Gators did triumph over the Troy Trojans last night while Ella was holding her bear. =)

Ella remained stable throughout the night. Her blood gases looked good this morning (cO2=49, pO2=121). The fluid output in her chest appears to have gone back up a bit though from 80 on Friday to 127 yesterday.

This is not the direction we want her fluids going. I’m holding out for a clerical error myself, but we’ll see what tomorrows output is. We’ve not had a chance to talk to Dr. Kays about it either, so we are curious about his thoughts on the matter.

Yes, it is Sunday, and Tina and I have enjoyed listening to sermons by Dr. Charles Stanley. We’ve downloaded a series of podcasts and noticed that there we some archives that we hadn’t listened to.

The message for July 8th was titled “How to Listen to the Word of God”. This is the message we chose to watch today. The sermon itself had an incredible impact, but the story that we viewed at the end really touched home.

The 7 minute video below is titled:

LIFE PRINCIPLE 18
As children of a Sovereign God,
we are never victims of our circumstances.

It spoke to our hearts so deeply, and we know it was no coincidence that God had us view this particular message today.

Listen closely to the words of Dr. Stanley at the end. These words resonated so strongly in our spirits that it brought us both to tears. Praise God for speaking through Dr. Stanley.

Click here to view the entire sermon titled “How to Listen to the Word of God”

It’s been more than seven weeks since we arrived in Gainesville. It feels like a lot longer though. We’re missing Colorado, both for the weather, and the familiar places. We’re trying to rest where we are, but are growing weary, and we still have a ways to go.
 
Ella continues her good streak. Her gases looked good this morning (cO2=50, pO2=143) and her stats are stable. Her fluids are still high for where we want them to be (115), but some of that could be attributed to her being moved around so much. With her being turned side-to-side more fluid is expected to come out. We’re hoping that her fluid progress has plateaued for that reason, and not another.
 
Ella still has a lot of hurdles to overcome. We thank God for how far He has brought us, but the journey may only be half done. We still need her chest fluid output to drop to zero before her chest tubes can be removed. Then, a slow and steady weaning process of the ventilator and meds need to occur. This is the point where Ella needs to breathe on her own.
 
After success in this, she will then move to the NICU II where we will work through any feeding issues, and prep her for the journey home. With all this remaining to do, we’re still going to be here awhile. Another 6 to 8 weeks? Nothing is for sure, but I’d like us to be home for Thanksgiving.
 
BUT…
 
We know that God’s timing is perfect, and we continue to rest in His sovereign plan for our lives. Not our will Father, but yours be done.
 
Please continue to pray for our baby girl, the nurses that take care of her, and for Dr. Kays. God has blessed us with incredible hope through these individuals and I pray that the Lord will be glorified through them and our baby girl.
 
God’s peace and love to all.
 
P.S. Tina is starting back to work today. Having the “Fab Four” take care of our baby girl as much as they have, has enabled us to focus on other things that need to be done. Tina and I are both blessed to have the ability to work remotely, and we thank our employers for providing us the opportunity.

Ella had a stable day yesterday, so mid-day Dr. Kays made some changes.
 
He noted that the increased octreotide medicine did not make a difference in Ella’s chest fluid output over this past weekend. So, he decided to remove her left chest tube.
 
Also, Dr. Kays made a few changes on the ventilator. Ella’s oxygen was weened to 36% oxygen (remember that we started at 50%) and 32 breaths per minute (we started at 50).
 
These are good steps forward for Ella. She did fine initially and into the late night, but this morning the evidence of the changes were not as positive as hoped.
 
Ella only drained 35 out of her right chest tube and she looks a bit more swollen. Again, this is from fluid accumulation (removal of the left chest tube). Her chest x-ray this morning confirmed that fact: her left side appeared hazy.
 
Also, her blood gas this morning was not great, as a result of the chest tube removal, fluid accumulation and the difficulty she is having with breathing. The pO2 was fine at 121, but her cO2 was 70 (should be around 40). She will have another blood gas earlier this afternoon.
 
Based on the results this morning and the fact that she was not settling down for Nurse Andrea, Dr. Kays decided to let her sleep on her left side (she favors that side because she is not laying on her stronger lung and it is easier to breathe). Also, he increased her lasix medicine to 3x per day (helps reduce swelling) and turned the ventilator settings back to where we started. All of these changes in an effort to see if it will help Ella just get over the hump with this fluid issue.
 
If Ella’s stats do not remain stable over the next few hours and show an improvement in her cO2 level, Dr. Kays will probably be looking to place a new chest tube back in her left side.
 
One piece of good news from yesterday: Ella’s head gear was removed! Nurse Michelle noted that Ella’s forehead was getting skin degeneration from the blood oxygen monitor (getting too raw). So, she asked Dr. Kays if there was a point in keeping the band on her forehead. Most babies are not kept on the machine that long and since it is a relatively new technology for them and there is not a set protocol, Dr. Kays agreed that it could be removed! Thanks to Nurse Michelle for speaking up!
 
Last night when we visited Ella, Nurse Michelle was so sweet. She had this pink gown that she had been waiting to put on her! So, sure enough…she said it was time.
 
As an addition to Ella’s outfit, I received something special the other day in the mail. Tracy Mitchell, the mother of Baby Jonathan, had sent us a card along with a hand-knitted hat she made especially for Ella. That touched our hearts so much.
 
Please pray for Ella’s fluid issue to resolve. She really needs to reach this milestone before she can take on others.
 
Also, please pray for our strength to remain strong and for us to be filled with heavenly peace that only God can provide.

I held off on posting this morning in the hopes that I would have more news to share. But decided that I have kept you in suspense long enough!

At this time, Ella progress has taken a bit of a step back. Her latest blood gas was okay this morning (cO2=60, pO2=105). Also, she did have a chest x-ray to see how the fluid accumulation is affecting her lungs, but we have not received an update from Dr. Kays yet.

Her fluid output from her right chest tube was only 5 yesterday, however they are attributing the reduction to the fact that they kept her on her left side all yesterday. If you remember, they did this because she was having a hard time breathing and getting her stats to remain stable.

Even as of last night, you could see the puffiness coming back into her face, neck and head on her left side due to the increased fluid accumulation from the left chest tube being removed.

We know that the fluid reduction is still the looming issue. We are hoping that it does not require for the chest tube to be replaced on her left side, but that is still a possibility.

Right now, we are not too sure of the next steps. As we have more updated information (hopefully sometime today from Dr. Kays), we will update this post.

Please pray for this fluid issue to resolve and for Ella’s strength to continue. Also, for the Lord to give discernment and wisdom to Dr. Kays on the next best steps. Finally, perseverance for Ella’s parents.

We love all of you and thank you for the support.

UPDATE (3:45pm): We still have not had a chance to speak with Dr. Kays. We are told that we should hear from him within the hour. When he called and heard about her declining stability and stats, he mentioned to the nurse that that he is most likely planning to put the chest tube back on the left hand side.

About 6:30pm, we met Dr. Kays at the hospital and talked about Ella’s next steps.

Dr. Kays told us why he wanted to proceed with replacing the left chest tube. He pulled up Ella’s latest chest x-ray from today to show us how much fluid was in her pleural cavity.

It was not a surprise. When we saw her tonight, you could tell that she was more puffy, was having a tough time breathing and did not feel well. Then, he showed us a chest x-ray from a few days ago – wow, what a difference!

Also, when we arrived her latest blood gases had gotten worse and there was no chest fluid coming from the right chest tube at all, yet you could tell that there was fluid in her chest from the x-ray.

So, one of the questions we asked him was why he decided to remove the left chest tube on Monday versus the right chest tube. Since Ella’s diaphragm was missing on the left side and there is a patch there from her repair surgery, the longer that the chest tube remains in her, the greater chance of infection.

We asked if he would use the same incision to re-insert the chest tube or if he would be performing a separate incision. He said that he was not sure until he was in surgery mode and looking at the existing incision. His gut instinct was that there is higher risk by using the same incision, but then again, he better feel strongly if he is going to insert a chest tube in a brand new location. He doesn’t just want to give her another scar on her side without good reason.

After a long discussion of her fluid issues and all of our options, the best option at this point was to re-insert the chest tube on her left side.

He mentioned that he wanted to replace the left chest tube, let her stabilize and then consider replacing the right chest tube late this week, if necessary.

Well, we got a call around 8:45pm and the chest tube procedure had been completed. Ella did fine during the procedure.

Dr. Kays is always thinking on his feet and surprising us: he decided to replace both chest tubes! After he thought about it more, he knew that there was fluid in her chest on the right side from her x-ray earlier and yet it was not draining (most likely due to a protein build up in the line). So, he opted to replace both chest tubes and luckily was able to use the same chest incisions.

When we called this evening at 11pm, already her fluids were beginning to drain. Praise God!

Just since the procedure was finished around 8pm, she has drained 62 total from both chest tubes. That is a big difference from zero over the prior 24 hour period. Also, her blood gas performed at 9pm shows that her body is getting happier, cO2=61, pO2=109. So, already we are seeing improvement. Thank goodness that Ella is getting some relief.

After we let her stabilize and wait patiently, we really need the fluid issue to resolve on its own. If it doesn’t, the only other options to explore are not real appealing.

We can have the SVC procedure completed again, where they open up her collapsed superior vena cava going into her heart. This operates under the assumption that the blockage or lack of flow into her superior vena cava is backing up, causing a leak of the lymph fluid out of her thoracic duct into her pleural cavity. Dr. Kays is not in favor of this route because the risks are high and we did not see any benefit from doing the procedure the last time.

After that, the only other option is to consider invasive surgery. This is a last resort and is only considered when you have tried all other therapies and the fluid issue is not resolving. It makes the assumption that the thoracic duct is damaged. Your thoracic duct is complex and is part of the lymphatic system which runs throughout various parts of your body. The surgery involves trying to locate a leak in her thoracic duct and repairing it. There could be a single leak or various leaks anywhere in the thoracic duct and there is not a way for them to locate the leaks with any precision. Therefore when surgery is performed, the success rate is not real high.

As you can probably tell, our hearts are heavy. We really want to see Ella overcome this fluid issue so she can move on to other milestones.

Please continue to pray for our baby girl. Our heart’s desire is to see the Lord heal this fluid issue miraculously. Ultimately, we know that He is in control and that we can trust His plan.

Hebrews 4:16
16 Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need.

If you did not have a chance to read last night’s post, you may want to read it, so all of this makes more sense.

Ella has taken small steps in the right direction last night and today.

We know that her body has to be feeling some relief from the fluid reduction in her chest. Her chest fluid output for 8pm – 7am (11 hour period) was 159. If you remember, she had plateaued over the weekend to about 100 -125 total for a 24 hour period. So, the replacement of both chest tubes is certainly making a difference.

Interestingly enough, there was a total of 119 from the right chest tube over that 11 hour period (and 40 from the left chest tube). That confirms that Dr. Kays was correct: there was likely a protein build up in the right chest tube which is why it stopped draining. Thankfully, Dr. Kays made the decision to replace both chest tubes last night rather than put Ella through 2 separate procedures.

Right now, they are replacing her fluid output with saline at 1/3 of the rate to avoid dehydration.

Last night, her blood gas was cO2=66, pO2=146. Her most recent blood gas at noon showed cO2=64, pO2=119. These are in the acceptable range considering her condition.

The chest x-ray this morning showed only a slight improvement on her right side, but not her left side.

The ventilator was returned to the levels where she started when she was first placed on the ventilator, fiO2 at 50% (oxygen) and 40 assisted breaths per minute.

Our anxiety level is a bit higher because the nurse on today is not one that normally takes care of Ella. Because of that, she placed Ella on her right side today. Ella has a tough time breathing when she is laying on her right side due to it placing pressure on her stronger lung, plus the fluid accumulation on her left side is still present.

When Ella did not calm down after several minutes and poor stats, the nurse gave her meds. The “Fab Four” of nurses can tell that when Ella is “touchy”, turning her on the right side is not a wise decision. And if Ella does not tolerate moving to her right side, it is a better decision to leave her on her back or left side until she becomes a bit stronger again.

So, we are a bit more anxious about her care today since we don’t have one of our favorite nurses taking care of her and she is in a delicate state.

We thank you for your continued prayers for our baby girl.

Psalm 33:22
22 May your unfailing love rest upon us, O LORD,
even as we put our hope in you.

Praise God – Ella is doing better!
 
When we visited her last night, the first sight of relief was a “Fab Four” nurse – Nurse Michelle. Big breath! Then as we approached the bedside, Ella was awake. It was so nice to see those big eyes again! Also, even though it was very late, Dr. Kays was also in the NICU. He was on call for surgery, so he stopped by to touch base.
 
The vent was weened earlier that night to 45% oxygen and 45 breaths per minute. He did mention that he was a bit concerned that the left chest tube was not draining as much as he wanted to see. The chest fluid output numbers were low and the chest x-ray was the proof that there was still too much fluid on the left side.
 
When the chest x-ray is completed this morning, he will be looking for significant improvement on the left side. If it is not present, we may want to send her down for a CAT scan so he can get a better idea of how the fluid is sitting in the chest.
 
From there, Ella had a stable night and has been doing well this morning for nurse Sally. Her latest blood gas was cO2=64, pO2=141, which is good. Her total chest fluid output for yesterday was 183 (R=133, L=50).
 
Although we have not talked to Dr. Kays, we are making an assumption that he was happy with her chest x-ray this morning. How do we know? He went ahead and made several other changes!
 
First, he weened her vent setting to 40% oxygen and 40 breaths per minute. Keep strong baby girl…
 
Starting this afternoon, he is going to try feeding her again! Last time, we used a bit of my breast milk, but her fluid output increased way too much. This time, he wants to try and use a low enzyme formula called Portagen. It will be the same amount as before, just 1cc every 3 hours. It is pre-digestive and easy on her stomach, but should help prime her intestines for the work they will need to do moving forward.
 
Also, Ella has had good urine output now for a consistent period of time, even through her downturn the past few days. So, Dr. Kays ordered for her catheter to be removed! Ella has never had the privilege to just pee in a diaper directly!
 
Please pray for her formula to be digested well and to have no impact on her chest fluid output. Also, that her chest fluid output would begin to slow down and dry out in her chest. Go Ella! No fluid! Finally, for her to gain strength and be re-charged. She has been fighting hard the past few days.

Tina and I just arrived home from the hospital (2am EST). Ella is doing ok tonight. She looked a bit more puffy in the face then yesterday. Her stats are in the acceptable range (cO2=66, pO2=63), but not great. These were taken right after she was fussing though, so maybe they’ll be better at her 4am gas this morning.

Dr. Kays did reduce the settings on the ventilator which could have also contributed to the so-so numbers. Her FiO2 is at 40% and her assisted breaths per min is 35.

Her chest tubes have stopped draining all together. I would take this as good news if her head wasn’t so swollen. We’ll see what tomorrow brings though.

This has been a tough week emotionally. Thank God Tina and I have each other to lean on. There are times when one of us is able to be strong for the other. God bless my wife for being the stronger one this week.

Your prayers connect the truth we know about Him in our minds, to our hearts.

Psalm 119:28
28 My soul is weary with sorrow; strengthen me according to your word.

Unfortunately, Ella’s stats have progressed in the wrong direction.

Her blood gas at 4am was cO2=70, pO2=84. The blood gas at noon was cO2=84, pO2=77 (ideally cO2 around 40-50 and pO2 above 100 is what we would like right now). They made adjustments to the vent to see if that would improve the situation. They changed the vent to 40% oxygen and 44 assisted breaths per minute.

Then, they took another blood gas at 2:15pm. The situation was not better, cO2=86, pO2=90.

In addition to all this, the fluid situation did not improve. The chest tube fluid output yesterday was 9 total. The last time the right side drained was at 3pm and the last time the left drained was yesterday at 8am; both by 1cc. No chest fluid draining would be great news if she had clear chest x-rays, but she doesn’t. She is also getting puffy.

They paged Dr. Kays with the latest information. He called back at 2:30pm and ordered a chest x-ray and for her right chest tube to be replaced.

Since we did not have a chance to talk to him, we are a bit confused with the overall plan. We are not sure why he is choosing to replace only the right chest tube, considering that neither of them are draining fluids. Also, he will not be performing the procedure, a resident on duty will be doing it.

On top of everything else, our least favorite nurse out of all nurses, is taking care of Ella today.

All of this and yet, He is in control. He knows exactly what the fluid situation is about and knows just what needs to happen…in His perfect timing.

Please pray for our strength and patience. Also, for sweet little Ella. She is not feeling well with all this fluid and is working very hard.

Psalm 25:4-5
4 Show me your ways, O LORD,
teach me your paths;

5 guide me in your truth and teach me,
for you are God my Savior,
and my hope is in you all day long.

p.s. The Gators will be working hard at trying to defeat Tennessee in about an hour from now. Go Gators!