We sit here in disbelief that our baby girl is already 8 weeks old!!! Holy cramole…time both flies and crawls at the same time. =)
 
Ella had a good day. Her stats were stable and her latest blood gas at 8pm was looking good (cO2=59, pO2=90). Her chest tube fluid output was 37 for the day when we checked at 11:30pm.
 
We saw Dr. Kays this evening. He confirmed that we’re on a slow boat to China, but the boat is moving, and in the right direction.
 
He pulled up Ella’s most recent chest x-ray so we could take a look. It looked pretty good, better than a few days ago for sure. Both lungs were more defined which indicated less fluid in her chest.
 
His plan is to take a chest x-ray each morning. If the chest x-ray looks good, the plan will be to simply maintain stats and good blood gases throughout the day (we should not be too concerned with her chest fluid output being lower for the day).
 
If her blood gases are not as good, her chest x-ray is hazy and she is not getting chest fluid output, he will look to replace the chest tube(s) again. He confirmed that besides aggressive surgery, this is the best plan for Ella right now until her body resolves the issue on its own.
 
She’s tolerating her food well. Dr. Kays has been pleased with her progress in this area and has increased her continuous dose of Portagen to 2cc’s per hour.
 
We still have a ways to go, but Ella’s progress is hopeful. Dr. Kays is hesitant to ween her ventilator while she’s dealing with this fluid issue because it can turn around and cause her problems. This is why Ella’s fluid issues needs to be resolved, so she can take her next steps.
 
Thanks to all of you for your support. Please continue to pray for Ella and the fluid hurdle.
 
God Bless.

Ella is having a stable day. She is currently asleep, but we could not resist showing you this picture of her bright, awake eyes from last night.

Her latest blood gas was cO2=55, pO2=86, which is acceptable for her condition right now. Her saturations are not as high as we would like but are hovering around the mid 90’s.

We have not talked to Dr. Kays today, so we are not sure what to think about her chest fluid output. Her total for the day was 2 from the left and 7 from the right, for a total of 9cc’s at 2pm. So once again, they are not draining. Is it due to the decrease in octreotide medicine from 10ml to 7ml? Is one of the tubes clogged again and needing replacement? We are not sure.

All is perfect in His timing. Thanks again for your continued prayers.

Ella had a good day and was awake tonight for our visit. It was so nice to see her looking around and interacting with us.

Her blood gas at 8pm was pretty good, cO2=46, pO2=85. At midnight, her total chest fluid output was 36 for the left and 79 for the right, for a total of 115.

Nurse Michelle is taking care of her tonight, so we have left her in good hands! Thank God for nurses that truly care about our baby girl. It is so appreciated.

We are on track to keep a steady course. Please pray for Ella’s specific needs: her chest fluid to continue draining to the point where it resolves completely and for her strength to increase each day.

Also, for us to remain strong in our faith and persevere. God is speaking to us so much each day. We want to keep listening and obeying Him. We know if we do that, He will take care of the rest.

Hebrews 10:36
36 You need to persevere so that when you have done the will of God, you will receive what he has promised.

Our little bun had a pretty good night. Her stats were stable and she behaved herself.

Dr. Kays called this morning to bring us up to date. He confirmed that she is making forward progress, albeit slowly. He wanted to replace the right chest tube again in the hopes of draining more fluid.

I asked if this will be our course for now, and he confirmed that it’s one of two options. We either continue what we have been doing, using the chest tubes to drain her fluid and wait on the body to get better, or pursue more aggressive steps with surgery.

As much as we would like to see her get better quickly (Dr. Kays would like this too!), we’re content to be patient and let Ella’s body do what it needs to do. She is taking baby steps forward again, and it’s evident in her latest chest x-ray as well.

Dr. Kays also indicated that he might discontinue her subcutaneous (anti-coagulation) shots in the next few days. We’re all for her not getting shots, so this would be good news.

We followed up again with a call to the nurse this afternoon and the chest tube replacement went well. Ella has drained another 32cc from her right side. Her blood gas this afternoon looked good too (cO2=57, pO2=118).

Ella is now getting a continuous feed of Portagen into her stomach (1cc / hour), up from 1cc every three hours. This is good news too because he feels this is not contributing to her fluid issue, and she’s tolerated the digestion process well.

Tina and I will be heading in this evening after work to see our baby girl. Nurse Michelle is on tonight which makes for a good time as well.

A passage of Scripture that spoke to Tina and I this morning while listening to a message from Charles Stanley:

Isaiah 41:9-13

9 I took you from the ends of the earth,
from its farthest corners I called you.
I said, ‘You are my servant’;
I have chosen you and have not rejected you.

10 So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

11 “All who rage against you
will surely be ashamed and disgraced;
those who oppose you
will be as nothing and perish.

12 Though you search for your enemies,
you will not find them.
Those who wage war against you
will be as nothing at all.

13 For I am the LORD, your God,
who takes hold of your right hand
and says to you, Do not fear;
I will help you.

…but her mom and dad snuck off to a Bed & Breakfast yesterday. It was a last minute deal, but Tina and I decided to escape the Gator fever.
 
We found a place right off the Atlantic coast out in Flagler. It’s a two hour drive from Gainesville and we headed out right after we saw Ella in the afternoon. Timed it just right too, because we missed all the football traffic. =)
 
It was a nice drive. Felt so good just to see some different scenery. I was beginning to feel like we had been living on an island for the last eight weeks, so it was nice to confirm that we weren’t.
 
We arrived at the B&B around 7:30pm, just when the sun was setting. We checked in, and headed down to the boardwalk and walked to a restaurant. Dinner was a bit disappointing, but the walk back to the B&B wasn’t.
 
There was a monster thunderstorm* right out over the ocean. Something you rarely see out in Southern California, but I’m sure it’s a regular event here. It was awesome. A gorgeous clear night, with the waves crashing, stars out above us, and lightening flashing in the distance. What an incredible display of God’s creation. We took our time walking back, barefoot on the beach, and just soaked in the moment.
 
The next morning, after breakfast, we headed north on highway 1 to St. Augustine. What a quaint town. A lot of history too considering it’s the oldest city in the country. We walked around looking at all the different shops and historic buildings.
 
We were then lured into Pizza Time, a NY style pizza place, where we enjoyed the best pizza we had ever had! Seriously, pizza is my favorite food, and I tend to be picky about it (not that I’ve ever turned down a slice ;-)), but this pie was absolutely tasty. If you’re ever is St. Augustine, you gotta give it a try.
 
After lunch, we walked around a bit more and took in the scenery. We then decided to head back to good ol’ Gainesville and check up on our baby girl.
 

 
Ella had a good day overall. She has been a lot more comfortable since they replaced her right chest tube yesterday. Her stats are looking better. Her blood gases at noon were: cO2=57, pO2=107. Her pO2 was down a bit this evening at 8pm (68), but Michelle thinks this was attributed to an excess of secretions in her chest at the time.
 
She’s only had 23cc of chest fluid output for the day. We like this to be more because her chest x-ray is still showing up hazy, indicating a fair amount of fluid. On the positive side, Ella’s urine output has increased significantly. We hope this is related to the additional diuretics she’s received and that it keeps up. This is the right way for her body to process excess fluids instead of relying on chest tubes.
 
Ella is in good hands tonight with nurse Michelle. We’re able to rest easier knowing that the nurse on duty truly cares for our baby girl.
 
Please continue to pray for Ella’s fluid issue. We are trusting our Lord that in His time and in His way, He will take care of it. This has been an incredible process, of learning to give over to God the things we cannot control. It can be very emotional, and there’s no reason that it shouldn’t be! But there is an incredible rainfall of peace when we put our trust in Jesus.
 
Heavenly Father, we praise your for your promises that you deliver through your Holy Word. Continue to write on our hearts, these words you have instilled in our minds. Praise you Lord for your peace, grace, mercy, and sovereignty in all things. You are Almighty God, and we surrender to you, praying that you may be glorified through all these circumstances. It is in Jesus name that we ask these things. Amen.
 
 
*Below is a slideshow and a short video of a lightening strike we saw on the beach last night. There are a total of 23 separate frames that make up the slideshow. It really shows how incredible the strike was, and how much occurs in less than a second!. Wow..wow…WOW!

Ella is doing better this morning.

Her blood gas at 4am was co2=58, pO2=108. This is much, much better and in the right direction. Praise God!

Also, her chest tubes have been draining. Her total for yesterday was 134; the right was 98 and the left was 36. Keep in mind that this was not even for a 24 hour period – – it was for a total of 14 hours.

When we called, the nurse stated that she is not as fussy – – she is convinced that Ella is feeling much better since those chest tubes have drained.

Throughout the morning, Ella has been awake, looking around and watching the monkey hanging from her bed.

Thank you Lord for progress in the right direction. We praise you for this baby girl and trust that she will be healed in your timing.

Deuteronomy 32:3-5
3 I will proclaim the name of the LORD.
Oh, praise the greatness of our God!

4 He is the Rock, his works are perfect,
and all his ways are just.
A faithful God who does no wrong,
upright and just is he.

About 4:00pm today, the resident on-call, Dr. Caban, came to replace Ella’s right chest tube. We have not spoken to Dr. Kays, so we are not sure about his thinking on just replacing the right chest tube.

We called in tonight to check on her and she went through the chest tube replacement procedure fine. Dr. Caban removed the existing right chest tube and inserted a new chest tube on the right side of her chest.

Approximately 6 hours later, Ella’s chest fluid output had increased dramatically. Already her right chest tube has output 59 and her left chest tube has output 18, for a total of 87. This is good news!

The nurse tonight mentioned that Ella was awake for her and seemed comfortable (not fussy). This is the same nurse that took care of her last night, so that is good that she can tell a difference.

Ella’s last blood gas at 8pm was cO2=64, pO2=74. She will have another one performed at 4am.

We will wait and see how she does overnight and into tomorrow morning. Please pray for her chest fluid to continue to flow out of her chest cavity, for the fluid issue to resolve completely and for Ella’s strength to be increased as each day passes.

Psalm 27:14
14 Wait for the LORD;
be strong and take heart
and wait for the LORD.

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!

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.

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.