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.

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.

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.

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 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.

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 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.

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. =)

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.

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.