Ella sustained through the night and is doing well this morning. She is still losing a good amount of fluid from both chest tubes, so they are replacing her fluids as needed. We don’t expect much to change with her care over the weekend; we’re just hoping for the swelling to reduce.
 
As for the parents, we’re hanging in there. We miss the Colorado weather – – Florida is way too hot!
 
It has been nice to have Grandma visit. She and I escaped a bit yesterday for some shopping at the mall.
 
Then, all three of us went to dinner last night. Josh could not help himself. He took pictures of me last night as I was thinking of my litte girl. We were at Macaroni Grill where they provide crayons and paper for the table cloth. So, I went to town!
 
Thanks for all the support and prayers. We plan to visit Ella later today at the hospital and will take some more pictures to share!

Ella looked good this evening. Actually, her stats looked really good. We were excited to see her progression.
 
When we spoke with Dr. Kays, he mentioned the excess fluid leaving her body too rapidly and how they are backfilling some of that fluid with saline, sodium and electrolytes.
 
He did mention that there is excess fluid on her right side too. Apparently, the chest chambers stay separate. So even though she has a chest tube in on the left hand side, you cannot expect that the fluid on her right side will drain. Therefore, he is planning on another minor surgery tomorrow, to insert a chest tube on her right hand side.
 
Visiting with her tonight, she was engaging – – looking around and grabbing our hands. Her left side is a bit less swollen, as she could finally open both of her eyes. That was good to see!
 
Please pray that her chest tube procedure tomorrow will go well. And that she will wake up at some point to meet her Grandma!
 
P.S. Baby Jordan did well with her feeding today – – she nursed from Mom! A very exciting day for the Brantley’s! Thanks for your prayers for Baby Jordan.

Ella had another good night – – she remained stable.

Her chest tube is working but she is actually losing fluid too quickly. So, they are trying to balance the fluid loss with an increased saline drip. They want to see a nice and steady reduction in fluid over the next several days.

Ella will have her first outside visitor starting tomorrow. Grandma Eusey is coming to visit!

P.S. Baby Evan is doing well – – thanks for asking! We don’t see his parents too often since he is in the NICU II, but we did see his Mom yesterday. Evan’s liver is working better; his biliruben count is lowering steadily. But the best news is that he gets to go home tomorrow! Thanks for the prayers!

Ella’s other friend, Jordan, was born 8/1/07, and moved down to the NICU II the other day. She is progressing really well and is just starting to try feeding. Pray for her too!

Thank you for your thoughts and prayers throughout the day.
 
Ella is doing well this evening – – and we pray for her stability throughout the night. Her pain medications and sedation medications will slowly be reduced over the next few days.
 
You can’t tell from the black and white pictures, but she is beginning to look better! Our little tangerine has now turned into the little Michelin baby.
 
So, the next steps are going to be safely reducing her body fluid. This can’t be done too quickly, so we’ll need to be patient.
 
Praise God that she has made it past the 48 hour window from her big surgery too!
 
But she is sooo swollen – – her face, head, back, arms, etc. She has so much extra fluid in her body. Her left eye is still swollen shut from so much fluid and being leaned to one side.
 
After the procudure today, they were able to position her with her head straight up. Already, she looks better! If nothing else, her parents feel better. We cannot imagine being in one position for the last 4 weeks – – yikes!
 
Dr. Kays again confirmed that Ella continues to do well and is progressing in the right direction, albeit slowly. He is “pleased” with her progress at this point.
 
We know that everyone is praying for Ella, coast to coast, and that is having a direct impact on how well she has been progressing.
 
Thank you Lord for this day, for our baby girl, and the love of friends and family.
 
p.s. “Therefore we do not lose heart….For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.” (2 Corinthians 4:16-17)

Ella had another good day and continues to do well tonight – – she has remained stable and slept a lot, as you can plainly see!

Dr. Kays plans to perform minor surgery tomorrow – – to remove her cannulas and place a chest tube on her left side to help drain fluids.

Please pray for success in the procedure tomorrow. Thanks again for the support and prayers during this time.

P.S. This verse really spoke to me today (Romans 5:3-5):
“…we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.”

We arrived this morning at 6:30am EST to spend some time with Ella before surgery.

Apparently, she had a rough night. She was awake and restless, which made her stats drop significantly. The staff was not as successful in calming her down, so they had to use the paralytic medicine.

By the time we showed up, she had just started to calm down and was sleeping. We did not want to interrupt her and sat to the side just holding our breath and staring over at our little miracle. In between, we were praying, surrendering our little girl over to His care, asking for His peace and proclaiming His promises.

It is 8:15am EST and we just shook hands with Dr. Kays as he kicked us out of her room! He walked in fresh with a smile and said, “Okay, we are ready!” He took the cover from her eyes and shook her on her chest to greet her. Then, he told us to give her a kiss because “it was time”.

They are prepping and sterilizing her room for surgery. It is amazing that they perform the surgery right in her room. We are told that surgery will take anywhere from 2-4 hours, depending on how it goes and what he encounters during the surgery.

Thanks so much for your support and prayers as we continue on this journey with Ella. All of you are very special and dear to our hearts.

Romans 15:13 – “May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.”

UPDATE (9:45am EST): Michelle came out to let us know that Dr. Kays just made the first incision. Lord Jesus, we pray your hands upon Dr. Kays.

UPDATE (12:15pm EST): We were just told that Dr. Kays is finishing up and will be out shortly to give us an update.

UPDATE (12:20pm EST): Dr. Kays just came out for a quick update. Thankfully, Ella remained stable throughout the entire procedure. The surgery itself went well. He had to run to another obligation, but said that he will fill us in on the details later. We should be able to see her shortly.

UPDATE (4:00pm EST): We’re still waiting to speak to Dr. Kays about the details. We hope to speak to him in the next couple hours.

Ella continues to do ok. Her O2 levels are great, but her cO2 gas has been high so they’ve been working to reduce it. Her blood pressure is down a bit too, but they’re giving her some fluids to bring it up.

You wouldn’t know how well she’s doing by looking at her though. When Tina and I first saw her it was pretty tough. With her current state of sedation and that Frankenstein-esque scar on her side you wouldn’t think she would be alive. Only the stats on the machine confirm otherwise.

We’ll update again after speaking to Dr. Kays, or if her condition changes. Thanks to all of you for your faithfulness in prayer.

There is not much of an update, but we figured that you would enjoy a picture! We will let you know if anything changes.

Please continue to pray for strength and calm rest for Ella this weekend, in preparation for her surgery.

P.S. Mollie, you were not the last to notice, but probably the first! Josh added Ella’s photo in the top section of the site last night!

Ella had a good night. She maintained her stats and is progressing in the right direction, albeit slowly with baby steps. She continues to have “episodes” where she gets very fussy which cause her stats drop significantly for a short period.

This is something that they are working very hard to manage, as these episodes are not good for Ella. There is a potential for lack of oxygen to the brain when her stats drop so significantly. They are hesitantly using small doses of paralytic meds to keep her calm.

As of right now, her surgery of shifting all the contents out of her chest is still scheduled for Monday at 8am.

Dr. Kays did mention the possibility of removing her cannulas over the weekend.

If you remember, the cannulation procedure was Ella’s first surgery where they prepared her for ECMO. An incision was made on the right side of her neck and a cannula (tube) was inserted in her jugular vein which leads to the right side of the heart while another cannula (tube) was inserted in her carotid artery. This surgical procedure was performed so that the blood supply could be exchanged with the ECMO circuit.

The underlying message: if Dr. Kays is thinking about removing the cannulas, we take this as a good sign! Many times, he will leave the cannulas in place, just in case the baby needs to go on ECMO again (the cannulation procedure is a 2 hour surgery – -not something you want to repeat if you don’t have to).

Now, it does not rule out the possibility that she would need to go back on ECMO. But the fact that Dr. Kays would even consider removing her cannulas at this stage means that he feels pretty confident that she will not need to go back on ECMO.

Please continue to pray that Ella’s body will get stronger, her fluids would reduce and that she will remain calm. We want to see her “episodes” decrease, so that she can maintain her stats and not sustain any damage to her brain due to lack of oxygen.

P.S. For those of you looking closely, you might notice that Reneke has a new buddy. Ella’s cousins sent a monkey friend to hang out with Reneke and watch over her.

His name is “Mr. CR”, because these represent the initials of Ella’s cousins (Megan, Richard, Claire and Ryan) and he’s Mr. Cousin to Reneke. We welcome him!

If you haven’t caught up from yesterday’s posts (morning and evening), you will want to do that!

We checked on Ella this morning. She had a good night – – when she is sleeping and calm, her stats are great. Every once in while, she gets alert and has a temper tantrum and tries to “fight” the ventilator (she had one at 3:30am and one at 10am this morning). When she gets fussy, all of her stats drop WAY down.

The nursing staff is going to try and monitor these episodes and Dr. Kays has given the orders to use a sedation medicine as needed. They would prefer to not have to give her any additional meds, but her episodes can set her back quite a bit and in the moment, they need a way to have her calm down so she can breathe!

They took a blood gas test this morning, and her carbon dioxide was at 45 (that is good but we would like to see it under 40). Her blood saturation level is staying around 99 (Dr. Kays would like to see it pegged at 100). We will see if the sedation medications help her to remain calm throughout the day and if her blood gases remain constant.

Please continue to pray that she can stabilize and remain strong!!! This is literally a wait-and-see game, to see how Ella will respond to all of these new changes.

Thanks again for the prayers and support.

P.S. Today is Ella’s original due date, but she and God had other plans. =)

UPDATE (2:30pm EST): Dr. Kays just called with some good news. Ella is doing what we hoped and prayed for – – making progress in a positive direction. Although the steps are tiny, they are going the right way! Her pO2 levels are 130 today and yesterday they were less than half that number! Her biliruben count is making progress downward and her carbon dioxide is in range. She is still fussing more than they would like, but they have been able to manage this with some sedation.

Before she was removed from ECMO, Dr. Kays scheduled her surgery for Friday (tomorrow). But with her improvement today, he has rescheduled it for Monday at 8am. Obviously, this is can change at any moment, based on Ella’s stats. And he is prepared to do surgery over the weekend, if need be. But for now, our baby girl is doing well.

Go Ella, Go Ella, No ECMO, No ECMO!

Praise you Jesus! Thank you all for your continued prayers! May she continue to take baby steps forward. Amen.

It is with great joy that I bring good news to everyone this evening.
 
First of all, they switched out the ECMO machine late this afternoon without a hitch. No problems!
 
Second, we talked with Dr. Kays. He performed another chest x-ray and there was improvement in her lung development since Thursday of last week!!! Since he changed out the ECMO machine, he wants to give her a couple of days longer on ECMO, still holding out hope that her stats can improve a bit more. He would like to see her stats stabilize and increase forward over the next day or so, remove her from ECMO on Wednesday or Thursday and then do the surgery.
 
As you can tell, he really does not want to perform surgery on ECMO either! Maybe Ella keeps hearing him talk about it, and decides to fight a little bit harder, just to make his decision tougher!
 
Actually, I think this is a direct testimony to all of you that are praying for Ella each and every day. Dr. Kays did not expect to see this much improvement in Ella over the past few days. This can only be directly tied to God’s hand moving in a miraculous way. And believing that prayer is powerful, we want to thank each of you for your support and prayers.
 
Dr. Kays decided to turn down the flow in the ECMO machine today (since he replaced the circuit) to 100 (we started at 220 and decreased in increments of 20, down to 120 as the lowest point before turning it back up to 160 last week). He will be monitoring her stats to see if she can stabilize and improve with the lower flows. Please continue to be fervent in prayer – – we still are holding out hope that Ella might be able to have surgery off of ECMO.
 
Finally, her pink head band that I wrote about last night. There is a story behind this one. Since I did not see Ella due to my ER visit, I just assumed that it was provided by the NICU. There are more girl babies in the NICU right now (Ella was the first baby girl with CDH since 2 years ago; all the other patients have been baby boys). Anyway, I just figured it was a standard item that all the baby girls would get to enjoy.
 
When we visited tonight, why was my baby girl the only one that looked so fashionable? We found out that the ECMO technician, Roger, that Josh and I have spent many late nights with by Ella’s bedside, went and got it for her. Isn’t that too cute? Then, when we arrived today, a nurse by the name of Joy added the bows to her headband. Way too cute!
 
Ella was awake and looking at us this evening, giving us those eyes of hope and gripping us to tell us that she is still fighting.