Wow, Ella is having a great day!

They have increased her feedings to 18ccs of Portagen per hour. She seems to be handling it fine. Each day they are weening her versed just a little bit, which is progress forward (this is her sedative medicine).

Urine output was high the last 24 hours at 343. Yet, her chest fluid output was so low yesterday – – only a total of 5.5ccs!!! We are hoping that this is a good sign. They have not taken another chest x-ray but expect that she will have one tomorrow. So far today, she has output 3ccs out of her chest tubes. We’re so hopeful that the fluid issue might be reducing slowly but surely.

Nurse Kelly is taking care of her. She went ahead and flipped Ella on her right side, which normally causes issues for her. Yet, Ella has not had any extra sedative or pain meds besides her drips since Friday afternoon. So, she is tolerating her right side today with saturations at 100/100. Plus, her last blood gas was excellent, pH=7.45, cO2=49, pO2=118.

As you can see below, we had quite the adventure yesterday with Uncle Rick and Cousin Megan. First, we went to the Florida Museum of Natural History and they were having a festival called Butterfly Fest, to celebrate butterflies. Megan made a butterfly flag and learned how to make an oragami crane. Then, we walked inside the museum to look at all the exhibits. The highlight was the Butterfly Rainforest. It was amazing to walk around a temperature controlled environment with hundreds of different butterflies. They were gorgeous!

After a nice dinner, we went hunting for alligators. We heard that they hang out at Lake Alice in the middle of the University of Florida. First, we walked up to one area and sure enough, a small gator was approaching us. We spent quite a bit of time there and then heard of another area to maybe find some others. On the way further down the road, we noticed a huge crowd gathered on the opposite side of the street. It was an agriculture area on the campus. At dusk time, within a few minutes, tons of bats flew out of this house! It was surreal…

From there, we went back across the street to Lake Alice. We saw some large, oversized turtles in the water. And after about 15 minutes, a much larger gator came to the edge of the land. I couldn’t believe that we had the opportunity to witness alligators so up close! Thus the title: “Butterflies, Gators, and Bats, oh my!”

Uncle Rick and Cousin Megan are leaving today, but we had a great time!

When we called to check on her night and morning, we were greeted with good news. Ella’s saturations are 99/100%. Her last blood gas was pH level of 7.39, cO2=55, pO2=66. This isn’t great but the nurse stated that she was a bit agitated right beforehand.

Her feeding tube did get plugged so they had to clear it out. Ella’s food was stopped for a couple hours, but she picked right back up where she left off. For the past 24 hours, they have not had to give her any extra sedation to calm her down.

Since they don’t have the catheter, they simply weigh the diapers. With Ella’s increased feedings at 14ccs per hour, the increased amount of “urine” output also includes any poop! So, yesterday she had a total of 498ccs! That is definitely the highest we have heard yet!

Her total chest fluid output for the past 24 hours was 17.5. Go Ella! No fluid! Go Ella! No fluid!

It’s Saturday and game day. Yes, the Gators are playing today as well as Uncle Rick’s alma mater, the USC Trojans. Ella decided that she wants to vote for the Trojans. I can’t imagine why!

We are still holding on to this roller coaster ride. The ride for the past several days has been much smoother.

Ella had a stable night and morning. She continues to take very small but significant baby steps in the right direction.

Her chest tube output for yesterday was in the 20’s. We are still holding tight that God will either decide to make the fluid issue simply go away on its own or give Dr. Kays the wisdom to take other steps to correct the problem.

Ella’s lungs are responding and behaving in a way that gives us great hope. We just need to have the chylothorax condition resolved.

Each morning and throughout the day, the Lord is just calling us to obey Him and to draw near to Him. Also, to be patient and endure during this time.

Thank you for your continued prayers. We plan to visit Ella this evening and will post another update below.

Romans 15:4
For everything that was written in the past was written to teach us, so that through endurance and the encouragement of the Scriptures we might have hope.

p.s. Uncle Rick and Cousin Megan went exploring the good ol’ Florida outdoors on a canoe adventure today while Josh & I work – – we hope for them to return unscathed from any gators! 🙂
 
 
UPDATE 2:30AM (EST) by Josh: Ella’s doing the best we’ve ever seen! Her stats look good, and she looks great.

We were all there really late tonight because the little Bun just wouldn’t go to sleep. She was so alert and awake, totally engaging both of us. We tried and tried, and finally after 45 mins, she zonked out.

Those eyes are like tractor beams when they’re open. There’s no way to leave her when she’s awake :-).

We’ve been enjoying our time with Uncle Rick and Cousin Megan. While Tina and I worked, they had some fun and went on a little canoing adventure (see the great pics of Megan and the turtles below).

Have a good night all.

Josh and I are relishing another great evening for Ella bun.

Nurse Michelle is taking care of Ella tonight, so we are praying that she behaves and can maintain throughout the night.

Dr. Kays stopped by and we had a chance to hear from him directly. Nothing different than what I reported in the last post, but it was nice to catch up face-to-face.

We are just so thankful for the good days. We are looking forward to the day when we can hold Ella, help feed her and then someday take her home with us. One thing is for sure: Ella is certainly fighting the good fight.

The truth of the scripture below hit home this morning.

Deuteronomy 32:3-4
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.

When we begin to see things from God’s perspective, we never complain. The more we know Him and His ways, the more we have peace with all the circumstances in our lives.

God’s goal is to have intimacy with each of us and He knows exactly how to orchestrate the details of our lives to draw us closer to Him.

Even more than that, He is a faithful God who only wants the best for us. Many times we mess it up by trying to orchestrate things on our own. Yet if we trust and obey even through the valleys, we will always receive His best.

The miracle of Ella Renae is already such a clear demonstration of His best – – for us and for all of you that have been touched and blessed by her story.

Lord, we couldn’t have thought up such an experience. We praise you and thank you for bringing Ella Renae into our lives.

Yes, Ella turned 11 weeks old today! Wow…time has flown and yet it has gone slow at the same time.

Two of my co-workers, Katy and Pam, came to Gainesville tonight. We had a great time hanging out at dinner and then visiting with Ella. It was so nice to see familiar faces. She gave a couple of grins to each of them, and then peacefully fell asleep after all the interaction.

I am pleased to report that Ella had another uneventful day which is great news. Her two blood gases today have been good. The vent was weened slightly at 39% oxygen and 58 breaths per minute. As of 10pm, her chest tube fluid output was 8ccs. Also, her urine output was already 220. We hope that she has a restful night and can remain stable.

We are still waiting for Dr. Kays to come back in town. We are anxious to hear what he has to say about her progress and what steps he wants to try next. We think he might want to remove one of the chest tubes, to see if Ella can tolerate it (she has 3 total; 2 on the left and 1 on the right).

Through all the curiosity of what will happen next, we know that He is ultimately in control and that His timing is perfect.

Lord, we praise you and thank you for our beautiful little girl. We feel so blessed to be her parents and to be directly involved in your work. Help us to draw near to you in this time and become more familiar with your ways.

We lift up Dr. Kays and staff to you and ask that you provide wisdom and discernment for the next steps regarding Ella’s care.

Lord, give us the strength to continue on this journey each day and be a testimony to you and your love for us. Help us to be joyful in hope, patient in affliction and faithful in prayer (Romans 12:12).

We thank you for all the wonderful support via our family and friends. Please bless everyone touched by Ella’s story and use this experience to bring glory to your name. Amen.

Yep…Ella is still smilin’ tonight. She had a good, uneventful day.

Her food was increased to 8ccs of Portagen per hour. Her latest blood gas was a pH level of 7.39, cO2=46, pO2=89. Because of this, they weened the vent a little bit more to 62 breaths per minute and 42% oxygen.

As of 10pm, the chest tube output so far today has been 18ccs. We have not heard anything more on her chest x-ray, but are hoping to hear an update from Dr. Kays. We think he is supposed to be back in town tomorrow.

Sweet dreams Ella bun…

Psalm 9:1-2
1 I will praise you, Lord, with all my heart;
I will tell of all the marvelous things you have done.
2 I will be filled with joy because of you.
I will sing praises to your name, O Most High.

Ella Bun is feeling so much better than she did a week ago.

As of 9pm tonight, her chest tubes had only drained 5ccs total! And she looks good! All signs are pointing to the idea that maybe her fluid issue is resolving. We won’t know for sure until Dr. Kays returns and we hear the official word from him.

Nurse Janet is watching her tonight, so the parents will sleep well! We pray that her stats remain stable, her blood gases are good and that she can have a great chest x-ray in the morning.

Thank you Lord for this little baby girl. She is such a blessing. We praise your name in the midst of the storm.

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.

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.”