Ella had a successful trip down to radiology. The CT scan went well; they were able to transport her and do the scan without requiring any sedation.

Tonight when we came to see Ella, they had made one other change during the day. At noon, she had a blood gas of cO2=79, pO2=88, with her pH level down. Her carbon dioxide was definitely too high, so Dr. Kays bumped up the ventilator to 50 assisted breaths per minute.

Then, her next blood gas was at 4pm. It improved quite a bit, cO2=65, pO2=92, with a better pH level. While we are sitting here at her bedside, she had another blood gas at 11:30pm, cO2=64, pO2=116, with a good pH level. Much, much better.

Dr. Kays decided to hold off on replacing the left chest tube yesterday and today, until he got the results of the CT scan. Fortunately, the CT scan gave him the information that he needed.

Her right lung looked good and there was just a slight amount of fluid retention in the chest cavity. However, the left side of her chest has a tremendous amount of fluid, confirming Ella’s difficulty in progressing forward.

Dr. Kays is still trying to decide the best way to treat Ella’s condition. We know that it involves Ella having surgery this Wednesday, but we do not know how extensive. Some of it may have to be decided once he gets the camera in her chest to see.

Fortunately, Ella has been doing better. If you remember 2 weeks ago when Dr. Kays removed the left chest tube, she took several steps back in her progression. Now, it is almost as if her left tube is out since it hasn’t drained anything for days, and yet her blood gases and saturations look better. And as we have experienced, she seems comfortable and in a pleasant mood when we visit her. So her toleration of the fluid in her chest cavity has improved significantly.

We are looking forward to speaking to Dr. Kays tomorrow to hear about his plan for Wednesday.

Please keep praying for Ella and her surgery this week- – that it will go well, be on the less invasive side, and ultimately resolve the fluid issue.

We trust that the Lord will provide wisdom to Dr. Kays. We are taking comfort that Ella is in the hands of the Almighty God.

If you did not have a chance to read yesterday’s post, you might want to catch up!

We just called to check in on Ella and discovered that nurse Angie is taking care of her today. What a nice surprise!

Ella’s blood gas last night at midnight was cO2=66, pO2=66. Thankfully it is slightly better this morning, cO2=61, pO2=90. She mentioned that Ella seemed comfortable and was sleeping sound.

As of yesterday, the plan was for Dr. Kays to replace Ella’s left chest tube. When we called to check in around 10:30pm last night, he had decided to wait until today, once the CT scan was performed. Although we have not talked with him, it would make sense that he might want to review the results of the CT scan before replacing the left chest tube and giving her one last chance for her body to resolve the issue.

We have not heard the exact timing of when the CT scan is scheduled, but we understand that it will be sometime this afternoon.

Again, Ella is scheduled for surgery on Wednesday, since Dr. Kays is not expecting her to improve. We know that the Lord could choose to resolve the fluid situation instantly. But we also recognize that whatever happens, His timing and ways are perfect.

Lord, we pray for your peace and comfort at this time. We pray for Ella’s safety during transport to radiology today. We ask that you bring wisdom to Dr. Kays and staff; we want to achieve great learnings from this scan.

We praise you and thank you for who you are – that we can have an intimate relationship with the God of the universe, that we can come to you for comfort and peace, knowing that we will never lose when we are centered in your will.

You always have our best interests at heart, even though we may not understand.

Thank you for the blessing of this little girl. Amen.

Hebrews 10:35-36
So do not throw away your confidence; it will be richly rewarded. You need to persevere so that when you have done the will of God, you will receive what he has promised.

Ella had a restful night, but unfortunately, her blood gases were worse. The one at 4am was cO2=70, pO2=90. They did a repeat blood gas shortly after and her cO2 went the wrong direction, cO2=80, pO2=124. She had 69ccs of total chest fluid output for yesterday’s total (6 left, 63 right).
 
Dr. Kays reviewed her chest x-ray this morning. It looks worse on the right and left hand side.
 
Oddly when we visited Ella, she still seems comfortable. She is not extra fussy, so we have really enjoyed our time with her.
 
Her blood gases during the day have been slightly better, but not good enough. The next gas at 8am was cO2=62, pO2=79. The one at 4pm was cO2=66, pO2=77. Her chest fluid output has been 10ccs total so far today (0 left, 10 right).
 
Here is the game plan: Dr. Kays is going to replace her left chest tube this afternoon/early evening. We are not sure what time, but he is planning to do it before he leaves the hospital for the day.
 
He has been hesitant to mess with the chest tube since it increases the risk for infection (on the same side as the patch for her diaphragm). But this is his last try at giving her body a chance to resolve the issue on its own.
 
Tomorrow, they are planning to transport Ella in her bed with all the drips and ventilator down to radiology. He has ordered a CT scan of her entire chest area, to gain a better understanding of the fluid problem and to check and see if her superior vena cava is still collapsed.
 
He is not doing any interventions tomorrow related to the her chest fluid issue or the SVC syndrome; he simply wants to diagnose the chest fluid problem with more precision and take the opportunity to look at the SVC during the same CT scan.
 
He is not real confident that Ella is going to have a major turnaround within the next ~48 hours. Therefore, he has also scheduled Ella for her surgery on Wednesday.
 
When we asked, he did mention that he would look to do this thoracoscopically or with minor incisions on one or both side of her chest (near where the chest tube incisions exist). Admittedly, this made us feel better that they would not be making a large incision across her chest.
 
Please continue to pray for Ella – – for the Lord’s will to be done. We would love for her to have a miraculous turnaround in the next 48 hours, which God could certainly decide to do.
 
But if that is not His will, that we will continue to trust and cling tight to His promises. We keep hearing the Lord asking us to trust Him and to continue to focus on Him.
 
As we have experienced so far, each time we keep our focus on Him, we gain a peace that is beyond all understanding.
 
Psalm 25:4-8
Show me your ways, O LORD,
teach me your paths;
guide me in your truth and teach me,
for you are God my Savior,
and my hope is in you all day long.

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’s day has been stable. Her blood gas at noon was cO2=51, pO2=57. Her blood gas this evening at 8pm was cO2=61, pO2=72.

Dr. Kays went ahead and made a few changes today. He increased her feedings to 4ccs of Portagen per hour on continuous feed. It is a really good sign that she is handling the formula.

Along with the increased food, they changed the tube that they use to feed Ella. When they started her feedings, they used a tube going through her mouth into her stomach. However with the most recent increases in food, sometimes the stomach can swell/expand and this is a concern with creating too much pressure on the patch in the diaphragm area.

So, they switched the tube today. They inserted one through her nose and connected it to her pyloric valve. This is where the food passes from the stomach into the small intestine. By feeding Ella in this way, we will still get the benefit of priming her intestines for food without swelling her stomach and creating risk for her diaphragm.

Also, they started Ella on a medicine called Reglan. Reglan increases the rate at which the stomach and intestines move during digestion. It also increases the rate at which the stomach empties into the intestines and increases the strength of the lower esophageal sphincter (the muscle between the stomach and esophagus).

Ella’s overall chest output at 10pm tonight was 5ccs for the left tube and 37 for the right, for a total of 42ccs for the day so far. This is a bit slower than the prior 2 days. We are hoping this is good news!

Dr. Kays mentioned that her morning chest x-ray looked about the same as yesterday morning (not a great chest x-ray). To switch a variable, he decided to lower her octreotide medicine to 5ml/day. This past week, he has weened her from 10ml to 7ml to 5ml per day. He wants to see how that impacts her chest x-rays, blood gases and overall chest fluid output.

Another goal is for him to remove the lines in her neck (where they put the cannulas for ECMO and did the SVC procedure). This is at high risk for infection since her neck can get moist easily from sweat, along with the duration of time it has been there (8 weeks).

Currently, they use this line in the neck to give Ella the octreotide medicine. She has so many lines going into her with various meds, but apparently the octreotide is not compatible with her other medicines, so they have to give it to her via the line in her neck. This is another reason why Dr. Kays wants to see if he can ween her off octreotide – – he wants to remove that line!

When we visited her tonight, we looked her chart and noted that they had also reduced the pressure on the ventilator from 16 to 12. That is a good step in the right direction.

She was maintaining saturations of 97 when we were at the hospital late tonight; higher than they had been throughout the day. The nurse and respiratory therapist stated that they had a challenge getting her settled between 8am -9pm. So the nurse placed a blanket across her face to make sure that Ella was less disturbed from light and noise. When it was picture time, we didn’t want to wake her either since she seemed sound asleep. So, we just lifted the blanket ever so slightly to snap a photo.

We are praying for chest fluid reduction. We have heard from countless nurses that many babies simply will have an immediate turn around at some point, without real explanation. Their bodies will simply resolve the issue. Of course, we would love for that to happen with Ella.

If we can’t get the overnight fix, we just need Ella to make slight minor improvements each day: a slightly better x-ray or a tiny bit better blood gas or more urine output or being able to tolerate small adjustments to the ventilator. Just small baby steps forward, ever so slightly. As long as she is making some sort of progress in the right direction, Dr. Kays will not recommend surgery.

Thanks for your thoughts and prayers as we continue this journey.

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.

On the way into see Ella tonight, we ran into Dr. Kays as he was going toward the parking structure. He was brief, but stated that she had a good day and that he was pleased. He noted that the chest x-ray did look worse this morning, but he thinks that the additional fluid he saw on the x-ray drained throughout the day via her chest tubes, since she did not get worse.

When we walked into the NICU, Ella was awake and looked good. Her stats were stable and she seemed comfortable. The nurse was doing the 8pm hands on (vital signs, diaper change, suctioning, etc.) and she was not fussy at all.

It is so fun to see Ella when she is awake and feeling better. It is the Lord’s way of blessing us and Ella’s way of letting us know that she is still fighting. It is like breathing fresh air.

Lord, thank you for our little girl. We praise you in this storm. Help us to focus our attention on you and cling tight to your promises. We trust that all of this is in your control and that your timing is perfect.

Sorry for the late posting!

Ella’s day has been stable. Her blood gases are not great, but have slowly moved in the right direction. The 4am blood gas was cO2=61, pO2=75. Her blood gas at noon was cO2=55, pO2=71.

Her chest fluid output was 67ccs total for yesterday; 24ccs for the left and 43ccs for the right. The chest fluid output today as of 5pm has been 38ccs on the right and 5 ccs on the left for a total of 43ccs.

We know that she had a chest x-ray this morning, but have not heard from Dr. Kays so we are not sure if it looked the same, better or worse. We think it was probably the same or better since no other changes have been made today.

She is still handling her food well, so Dr. Kays did increase her Portagen intake to 3ccs per hour on a continuous flow.

The nurse made mention that Ella has been sleeping a lot, even on her right side! The only time she has been fussy is when she needed suctioning and then she has calmed right back down. In our world, we know that this means that Ella must be feeling better but there is always the possibility that she might take a wrong turn again.

If we continue to replace chest tubes and/or her stats remain the same or get worse (like they did yesterday), Dr. Kays will need to discuss surgical interventions. By the way, I did want to clarify: Dr. Kays is absolutely the best, most-qualified surgeon to care for Ella, even with this fluid issue.

Yesterday, I mentioned that he is not confident about fixing the fluid issue via surgery on the first try. This is because the technology does not exist to show or pinpoint to surgeons the exact damage or lesion area within the thoracic duct. Plus, the thoracic duct is complex and long, weaving in your chest area, spine, down through your abdomen.

Dr. Kays simply described that it is not a very satisfying surgery. You could go in, repair and find out later that there was a lesion or damage somewhere else within the thoracic duct. So, the success rate for surgeons in general is not high, but that is no reflection on Dr. Kays.

The next few days are critical for Ella. Pray for good chest x-rays (Go Ella! No Fluid!), stable blood gases and her overall comfort. Even if we can remain stable and have very small, minor steps in the right direction, Dr. Kays will continue to be patient and let Ella’s body resolve this fluid issue.

Please continue praying for our sweet little bun!

This verse spoke to us this morning:

1 Peter 5:6-8

Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.

Ella turned down the wrong path today.

If you read the last post (yes, that was me writing in pirate talk and not Josh, although he is wacky too), then you already know that her chest x-ray was not good this morning. Her chest tubes had drained only 38 ccs total (11 left and 27 right) plus she had a poor blood gas at 11:30am (cO2=70, pO2=66).

So around 2pm, Dr. Kays replaced her right chest tube, in the hopes of getting more fluid reduction. Her drop in stats and overall stability is all related to the accumulation of fluid in her chest cavity.

Since the chest tube replacement, there has only been a total of 13ccs (8 left and 5 right). This is not much and does not indicate forward progress.

We ran into Dr. Kays around 8pm. He noted that the right chest tube replacement earlier did not gain us much, so he is getting closer to ordering a CT scan to assess what is happening with the fluid in her chest. He thinks that her body might be building protective pockets around the chest tubes and preventing the fluid from draining.

The CT scan will show this type of detail. But, it is a big deal to get a CT scan completed because they have to transport her to another area of the hospital. This is the main reason that Dr. Kays has held off on ordering the CT scan – – it is a production.

He did mention that he is pleased with how she is handling the food and he does not see that it is increasing her fluids or contributing to the fluid issue. Also, he increased Lasix to 4x per day (this helps with her overall urine output).

Once Dr. Kays left, they ran a blood gas at 9pm. This proved that she is still accumulating fluid and not feeling well (cO2=79, pO2=79). He was paged with the information and gave verbal orders to increase the ventilation and take another blood gas in an hour.

When we first went to Ella’s bedside tonight, one thing we noticed: the socks had been removed from her hands. She does tend to pull on the lines, plus her nails are very long and she has been known to scratch her face. So we asked the nurse to make sure and place the socks back on her hands at some point.

We just called and her 10:15pm blood gas was about the same (cO2=71, pO2=69), not too much improvement. No other changes for tonight.

Although the nurse did mention that somehow Ella got ahold of the line in her neck and pulled the dressing away. That is a bit scary.

Dr. Kays has been talking about how he wants to remove that neck line because it has been there a long time and carries a high risk of infection (this is the same place on her neck where the cannulas were inserted for ECMO, so it has been there for 8 weeks).

As a precautionary measure, the nurse ordered a chest x-ray to make sure that the line is still intact and nothing else occurred. Those socks have been put back on her hands. Maybe a note will go down on her chart to ensure that those socks remain intact!

Our hearts are heavy tonight. We are feeling a bit weary. We know that God is with us, He is present with us, He is sovereign and in control, all in His timing. Yet, we are feeling a bit discouraged since we cannot seem to overcome this fluid issue.

Now that the chest tubes are not appearing to make much impact, Dr. Kays already hinted that we might need to consider surgical intervention.

Please continue to pray for Ella as well as wisdom for Dr. Kays. We want to see the chest fluid issue resolve. We really are not excited about the idea of having to surgically go into her chest to try and resolve this issue, when Dr. Kays is not confident that he can fix it on his first try.

Also, please pray for us as Ella’s parents. We certainly want to be open to what the Lord wants us to learn through this experience. We want to be obedient to Him. In other words, we don’t want to be road blocks. Please pray that we would hear His voice during this trying time.

Psalm 61:2
From the ends of the earth I call to you,
I call as my heart grows faint;
lead me to the rock that is higher than I.

In case ye did nay know, today be International Talk Like a Pirate Day.

Ella be doin` well today. Th’ monkeys an’ bears be keepin` th’ lass’ company. An`eyeball that smile o’ hers!

Her last blood gas at 4am be cO2=67, pO2=73, nay quite as good. Nurse Michelle did mention that she be fussy near th’ time th’ blood gases be performed, so maybe that be part o’ th’ lower numbers.

Nurse Angie be takin’ care o’ th’ lass’ today. Th’ lass’ next blood gas be at 12 high tide (12 noon). Hopefully them numbers be better although Ella seems t’ be fussy well into this mornin’ too.

Aye, we guarantee ye, that Ella tends t’ be more fussy when she be less comfortable. So, we be nay sure if she be retainin’ more fluid or why she might be more uncomfortable.

Nurse Angie reported that th’ lass’ stomach looks a bit more distended today. This be most likely due t’ th’ increased amount o’ Portagen they started last high tide’ (up t’ a continuous flow o’ 2ccs per hour). They be watchin’ that closely t’ make sure she be processin’ th’ formula an’ nay havin’ any other issues related t’ th’ digestion.

Her total chest fluid output fer last high tide’ be 35 fer th’ starboard side (right side) an’ 38 fer th’ port side (left side), fer a total o’ 73. Since 7am, she has output 6 fer th’ starboard (right side) an’ 5 fer th’ port (left side), fer a total o’ 11ccs.

We be goin’ t’ assume that th’ lass’ chest x-ray looked good since Dr. Kays has nay gi’en any other orders. Stay tuned sea dogs an’ land lubbers!

UPDATE (1:20pm EST): The nurse practitioner just called and Ella`s blood gases at 12 noon were worse. She has continued to be fussy. Also, she confirmed that the chest x-ray doesn’t look as good as the one yesterday and that the chest tube fluid output has been minimal so far. Therefore, Dr. Kays is going to be replacing the right chest tube this afternoon.

This news is not surprising. When the nurses mentioned that Ella was more fussy and not recovering well throughout last night and all day today, we had the sense that this was because she was uncomfortable. This typically indicates a build-up from fluid in her chest. Now our inclination has been confirmed!

We ask that ye continue t’ pray fer our wee lass’!