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!

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.

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.

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.

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.

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.

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.

Ella had a great night with Nurse Janet. Now, she is under Nurse Andrea’s care again today. We like it when the “Fab Four” are taking care of Ella!

Her blood gas this morning at 6am was fabulous (cO2=51, pO2=140). This is great news considering that the oxygen on the vent is turned down to 40%. Slow and steady steps each day. We will see what her blood gas is at 2pm.

Unfortunately, her fluid output increased from yesterday. It was 105 the day before and yesterday it increased slightly to 120. Although Dr. Kays has not given the order this morning, it is fully expected that he will increase the octreotide medicine soon.

Again, this is a bit of a mystery since Ella is the first CDH baby under Dr. Kays to have this much of a fluid issue since her repair surgery. Most babies have some fluid for a few days after the repair surgery and most resolves itself. If not, then typically the chest tubes resolve the issue. We are the first to try the octreotide under Dr. Kays, which has given us tremendous progress. Please pray that the fluid will go away with the increased amount of octreotide.

I think we need to revert back to Ella’s cousin’s chant. Using Claire’s words during ECMO days, maybe we need to just update the lyrics, “Go Ella! Go Ella! No fluid! No fluid!”

Thanks for all the thoughts and prayers. They are invaluable to us during this time.

Ella is still holding on strong! I keep feeling like I need to pinch myself. It is so great to see how God is working.

Her afternoon blood gases were incredible. So when Dr. Kays checked on her before he left the hospital for the evening, he went to the ventilator and weened it further. Her oxygen is now at 40% – – this is the lowest amount ever for her! She will have another blood gas at 10pm and we will see what those turn out to be.

Ella’s fluid output looked like it might turn out to be close to the same amount as yesterday, 105. Dr. Kays wants to see that go to zero. If her fluid output is not less by 7am tomorrow morning, he plans to increase the octreotide medicine. She is at the maximum dosage that was used in the research studies, but since there are no known side effects and it might help, he wants to try increasing the dosage even further.

Nurse Janet is taking care of Ella tonight (one of the “Fab Four”), so we are resting well knowing that she is in good hands.

Thanks for the earnest prayers of many.

Hebrews 10:23
23 Let us hold unswervingly to the hope we profess, for he who promised is faithful.

All good news to share this morning.

Ella is sustaining on the new ventilator incredibly well. They took a blood gas this morning – – it was too good (cO2 = 47, pO2= 223). The amount of oxygen in her blood was surprisingly high, so Dr. Kays reduced the assisted oxygen on the ventilator from 60% to 50%. This is amazing progress for Ella.

Also, her fluids are still decreasing. A total of 145 for yesterday, down from 215 (the highest was 892 last week).

Thanks so much for the prayers that continue for sweet Ella.

Deuteronomy 10:20-22
20 Fear the LORD your God and serve him. Hold fast to him and take your oaths in his name. 21 He is your praise; he is your God, who performed for you those great and awesome wonders you saw with your own eyes.