We called to check-in on Ella bun this morning (this is a picture from late last night).

Nurse Kelly is watching her and told us that Ella has been stable. Her last blood gas was a pH level of 7.39, cO2=48, pO2=91, which is good. Her total urine output for yesterday was 285, which is another good sign. The total chest fluid output for yesterday was only 26ccs. Again, we are hoping that this is a sign of overall fluid production beginning to cease. I think we will have a better idea by early next week.

Ella was turned on her belly this morning, but she did not seem to tolerate it well. Unfortunately, she has not been turned on her belly as much in the past 2 days. We are hoping we can get back to that routine, since Dr. Kays thinks it is good for her at this stage.

We plan to visit our Gator Girl a bit later today. (In case you didn’t know, there is a Gator game tonight! Go Gators!)

Ella had another good day – – a sigh of relief coming from Mom and Dad. Thinking back to one week ago today, Ella has come a long way!

We spoke with the nurse practitioner late this afternoon. She mentioned that Ella’s chest x-ray looked better today. That is such good news!

Her blood gas at 2pm and at 10pm were both good, pH levels around 7.4, cO2 in the 40’s and pO2 in the 80’s. Also, since she is doing well, they increased her feedings to 5ccs per hour.

Her urine output at 8pm was on track for another good 24-hour period at 184 so far. The chest fluid output has slowed down a lot today, only 20ccs.

Since her chest x-ray looked good this morning, we are hoping that this is a sign that her overall fluid production is slowing down. Also, maybe the scarring of the chest cavity is beginning to take effect. The next few days will be very telling.

When we visited tonight, she was sleeping. I placed my hand on her head and feet. After a few minutes, she sensed my presence and opened those eyes wide! Then, she had to stay awake to hang out with her parents! It was nice to see her enjoying her time with us and just looking around.

Those are the times we drink in and enjoy. She engages us with her eyes and it is just amazing to stare back.

She has such a sweet spirit and is such a strong baby girl. We love her so much. She is truly a miracle.

We are praying for a stable weekend. Dr. Kays is out of town for a few days. Although he will be calling in to check on her, we hope that she can remain stable and continue to take small steps in a positive direction.

Philippians 4:6-7
6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.
7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Actually, I really think Mom knows best, but as you may be able to tell by the picture above, I think Ella has her daddy’s nose. Yup, that looks like a Josh schnoz to me. =)

The parents are feeling content this morning because Ella had another good night (that’s 4 in a row). She was stable and slept well.

Her gases looked good at 9:30am (pH=7.42, cO2=46, pO2=64), and her fluid output for the 24 hour period was positive too (urine=278ccs, chest fluid=55ccs).

Dr. Kays has not been in to see Ella yet, but we’re looking forward to hearing about her latest x-ray. Hopefully the reduction in chest fluid output (15ccs less than yesterday) is related to a true fluid reduction, as opposed to clogged catheters or fluid accumulating in other areas.

The nurse that has her today just finished giving her a sponge bath, and cleaned her neck and other crevasses that can harbor yeasty beasties. Ella tolerated the handling well which is such a good sign.

Our hearts pour out with gratitude to all of you, who continue on through this journey with us. The words that you share, and the prayers you lift up, render to us great strength and encouragement.

We are incredibly blessed by all the support.

Father, we thank you for another day with this beautiful girl. We praise you in all these things, and through this entire journey declare the love of our Lord Jesus. We know your are with us every step of the way. Bless those who have been touched by Ella’s story, and draw them closer to you. We affirm these words in your Holy name. Amen.

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.

Ella had a touchy afternoon with Nurse Angie. Even though they gave her a large dose of fentanyl at 3:30pm when they turned her on her back, she still fussed quite a bit for the remainder of the afternoon.

She started to calm down around 6pm and fell asleep. When we arrived around 9:30pm, she was still on her back and wide awake. She seemed comfortable and calm, just looking around.

Although her airway required suctioning a few times during our visit, she seemed to tolerate it fine and recovered quickly. Her vent is at 50% oxygen and 70 breaths per minute. Her saturations were 97-98% tonight. She had a blood gas at 10pm which was good, pH level=7.44, cO2=47, pO2=83.

Her chest fluid output was only 41 total for the day during our visit, so it has definitely slowed down. Although most of the fluid is still coming from the right chest tube (which is on the same side as her good lung), so I am sure that is helping Ella.

Her belly looked more distended tonight. Nurse Michelle measured her and she is up 1 centimeter today around her abdomen area. It is easy to tell because her repair scar is bright red and looks more stretched.

Also, her adema has gotten worse in her head and her trunk area too over the past couple of days. In the prior weeks, this was related to her SVC being collapsed. Although they took the contrast x-ray on Monday, we have not received any results.

Dr. Kays opted to remove the brain oximeter today. They were having some mechanical problems with it not reading properly. So, Nurse Michelle removed it again tonight. I am glad because Ella’s skin is so sensitive from the first time around where it was on for weeks, that Ella’s skin has already degenerated again (red and sore).

Finally, you may have noticed that her left eye has some blood capillaries that have burst. The theory is that the adema has caused the skin around her left eye to become red/purple. We are being told that it is not too much of a concern, but that they will watch it closely.

We have this gut feeling that Ella might be retaining fluid again in other pockets of her chest cavity. We will be interested to see how she does throughout the night on her belly, what her chest x-ray shows tomorrow and what next steps that Dr. Kays wants to take with her.

If she begins to not have as good of stats and begins to get fussy for Nurse Michelle, then she likely has more fluid accumulating somewhere. We know that scarring her chest is still a possibility that Dr. Kays is considering. Again, we would like to avoid that procedure but trust that God is in control and orchestrating every detail.

Matthew 11:28-30
28 “Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.”

Ella had a stable night and morning so far. At midnight, they flipped her on her back for 8 hours. This morning, she went back to her belly at 8am. They are on a schedule of flipping her back and forth every 8 hours. Although they are giving her an extra initial dose of fetanyl (which is pain medicine that lasts 1-2 hours), she is tolerating both sides for 8 hours at a time.

Nurse Angie is watching over her today and noted that Ella did have one fussy spell this morning around 9:45am. But, she suctioned her airway and gave her calming touch and this seemed to do the trick. Ella peacefully went back to sleep after 5 minutes or so.

Keep in mind that just this past weekend, there were times that nothing seemed to calm her down, not even an extra dose of fetanyl. So the fact that her saturations are returning to good levels on her own without extra meds is a sign that Ella is feeling better.

Her blood oxygen saturations have been between 98-100%. Her blood gas this morning was good, pH level=7.41, cO2=47, pO2=99.

Her urine output yesterday was real good at 265. Last week when we were going into the weekend and she was not doing well, it was low at 143.

The chest tube fluid output for yesterday was 51 between all 3 tubes. Today so far, it has been 16.

Dr. Kays was in briefly and made changes to her vent settings. He lowered her assisted breaths per minute to 70 instead of 80. Also, he lowered the nitric oxide from 4 to 3. She seems to be maintaining well. We will be able to tell when her next blood gas is taken later.

We know that Ella had a chest x-ray this morning. We have not heard those results and whether or not there is a CT scan scheduled.

All we know is that we are trusting the Lord Jesus. He has given us such amazing peace at this time.

Psalm 29:11
11 The LORD gives strength to his people;
the LORD blesses his people with peace.

Job 22:21-22
21 Submit to God and be at peace with him;
in this way prosperity will come to you.

22 Accept instruction from his mouth
and lay up his words in your heart.

UPDATE (4:45pm EST): The nurse practitioner just called a few minutes ago to let us know that Ella had an “episode”. She was on her belly sleeping and suddenly woke up very agitated.

Similar to this morning, Nurse Angie tried to soothe her by suctioning her, giving her a temporary boost in oxygen from the ventilator, comforting her, and even placing her on her back (she had been on her belly for 7 hours).

Her stats were not coming up as they should on her own. They paged Dr. Kays and he asked for a blood gas to be taken. Surprisingly, it was still in the acceptable range with a pH level of 7.33, cO2=58 and pO2=89. This was a good sign.

Since she was not calming down, Dr. Kays ordered for a large dose of fentanyl (equivalent to a surgical dose). That knocked her out and she is sound asleep again.

We know that Dr. Kays does not like to sedate her unless necessary. He wants to be able to ultimately solve the problem of why she is having discomfort. Although we have not talked with him, we think he might just be buying some more time until he figures out the next best steps for Ella.

Please continue to pray that Dr. Kays will be filled with knowledge, wisdom and discernment from our Heavenly Father. Also, that Ella would be comforted and given strength to continue climbing to the mountain top.

James 5:11
As you know, we consider blessed those who have persevered. You have heard of Job’s perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy.

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.

Ella had a restful night. She did a lot of sleeping.

When we were there for her last blood gas around 10pm, it was great.

When they drew the next blood gas at 4am, it was not good.

Her pH level was 7.0, cO2=83, pO2=123. They paged Dr. Kays with the information. He made some slight ventilator changes and re-took the gas at 6am and it was a little better. Her pH level was 7.14, cO2=73, pO2=99. They repeated another gas at 8am and it was still creeping in the right direction. Her blood had a pH level of 7.39, cO2=49, pO2=96. They plan to take another one at 2pm.

Dr. Kays came by this morning and removed the right chest tube that we just experienced him replacing Saturday evening, since it was no longer draining. Her fluid output on the right hand side, from the tube he put in last night after the CT scan, released a total of 107ccs, as of this morning at 7am (that is a lot for a 12-14 hour period). 23ccs were released from the new left chest tube and 19ccs from the previously existing chest tube, for a total of 42ccs.

So, 149ccs off of Ella! That is why she is responding so much better. I can’t even imagine what that must feel like for her.

Dr. Kays recognizes that this fluid issue is holding her back from her lungs developing. So, he has ordered another CT scan for today. He doesn’t like to do that because they have to transport her down to radiology with the ventilator, drips, nitric oxide, etc., attached to the bed (see picture), but at this point, he cannot tell exactly where the fluid resides unless he gets the CT scan. Also, he knows that the fluid builds up and accumulates and it is confirmed directly in Ella’s numbers.

We are still waiting on the report from radiology to see what the results are from the contrast x-ray concerning her superior vena cava.

Please pray that Dr. Kays will be given insight and wisdom for this issue. Also, that Ella will maintain her strength today and remain stable through the transport to get the CT scan.

This verse came to my mind this morning. Although this fluid issue is a mystery to us, God knows exactly what Ella needs. It also reminds us that He is ever-present with Ella, ALWAYS. And that He made Ella with His own hands, just perfectly.

Psalm 139

1 O LORD, you have searched me
and you know me.

2 You know when I sit and when I rise;
you perceive my thoughts from afar.

3 You discern my going out and my lying down;
you are familiar with all my ways.

4 Before a word is on my tongue
you know it completely, O LORD.

5 You hem me in—behind and before;
you have laid your hand upon me.

6 Such knowledge is too wonderful for me,
too lofty for me to attain.

7 Where can I go from your Spirit?
Where can I flee from your presence?

8 If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.

9 If I rise on the wings of the dawn,
if I settle on the far side of the sea,

10 even there your hand will guide me,
your right hand will hold me fast.

11 If I say, “Surely the darkness will hide me
and the light become night around me,”

12 even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.

13 For you created my inmost being;
you knit me together in my mother’s womb.

14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.

15 My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,

16 your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.

17 How precious to me are your thoughts, O God!
How vast is the sum of them!

18 Were I to count them,
they would outnumber the grains of sand.
When I awake,
I am still with you.

19 If only you would slay the wicked, O God!
Away from me, you bloodthirsty men!

20 They speak of you with evil intent;
your adversaries misuse your name.

21 Do I not hate those who hate you, O LORD,
and abhor those who rise up against you?

22 I have nothing but hatred for them;
I count them my enemies.

23 Search me, O God, and know my heart;
test me and know my anxious thoughts.

24 See if there is any offensive way in me,
and lead me in the way everlasting.

UDPATE (4:00pm EST): We just called in to check on our girl. Ella had another CT scan done, and at this moment was being put back in the NICU. Dr. Kays has yet to see the results of her CT scan. We did find out that Ella’s blood gas at 2pm looked good, similar to the better one she had this morning. We continue to rest in the peace of our Saviour.

The phone just rang at 8:10pm EST. “Hi, you have a new baby”, was the voice that came through on the other end of the line. “What??!!??”, Josh exclaimed. He was confused. Who is this person and what are they talking about?

It was Dr. Kays. He repeated it again, “You have a new baby”.

Dr. Kays explained that he went in and added another chest tube to the right hand side and replaced a tube on the left hand side. Not much fluid has drained from the left hand side, since he thinks it might be more gelatinous. But he removed 50ccs of fluid from her right hand side (which is where her better lung resides).

They took another blood gas and it was amazing, cO2 in the high 30’s and pO2 at 238. Praise God! He says that she is much more comfortable and responded well to the treatment, hence we have a new baby.

Josh then felt the prompting to make sure that Dr. Kays knows how much we appreciate him and his patience with our baby girl.

The phone was hung up, and we started to cry with joy and praise our Heavenly Father for just this small sign that He is with us and listening to our prayers.

Thank you Lord for giving us this refreshment for our spirits tonight. Thank you for the many followers that have earnestly been praying for us, Ella and Dr. Kays. You are a faithful and mighty God. We praise you for answering our specific prayers.

We thank you for giving Dr. Kays a victory tonight as her care provider, as we sensed that he was frustrated that nothing seemed to be working for Ella. Lord, we pray without ceasing that you will give Dr. Kays the knowledge of the next steps to take to resolve this mystery. We know that her condition with the fluid is getting tougher and tougher to treat. Yet, we know that nothing is too hard for you, the Great Physician.

Lord, we pray for Ella. We thank you for keeping her strong throughout the day. We thank you for providing her comfort in this hour. Lord, please continue to give her strength so she can continue to fight. We thank you for the privilege of being her parents. She is such a blessing to all of us. Already she is doing your work, by drawing all of us closer to you.

We praise you and thank you for using sweet little Ella Renae. We praise you in this storm and hold tightly to your promises. In Jesus Name, Amen.

UPDATE (10:15PM EST): Ella just had another blood gas. Again, it was amazing! Praise God. This is reassuring – – it means she is really feeling better and that her blood gas earlier was not a one-time fluke. This time it was a pH level of 7.40, cO2=55, pO2=277.

They paged Dr. Kays with the blood gas and he reduced the standard ventilator down to 60% oxygen and her saturations are still pegged at 100. She has another blood gas at 4am.

We are so thankful that we received encouragement tonight from the Lord. Through the past few days, we have had peace knowing that He is in control. But we were praying for a reprieve, a break from the storm. We received it tonight and feel refreshed.

Realistically, we know that what happened tonight has not necessarily resolved the problem. Dr. Kays was able to remove a bunch of fluid from her right side, and therefore, her body is responding positively. But, there is still a fluid mystery to solve.

Please continue to join us in prayer that the Lord will reveal the next best steps in Ella’s care to Dr. Kays.

Thanks again to each of you for joining us in this journey – – your support has been amazing. May the Lord continue to speak to all of us through this experience, so we may draw close to Him and hear His voice.