Ella had another good night. Most of her episodes, where she gets upset and her stats drop, have been controlled without any paralytics or morphine. This is positive because you want to keep the use of those medications to a minimum. Her overall levels are maintaining nicely, considering all her organs are in her chest, and she really can’t get much cuter =).

Her big day is tomorrow so Tina and I will be here at 6:30am (EST) before she has surgery at 8am (EST). We’ll try to keep posting updates throughout the day.

Please pray for a successful surgery with no complications. This is Ella’s big day!

I put together a quick video with a soundtrack dedicated to Chris Vodnik. Not all the lyrics apply (we’re not leaving our girl tomorrow!) but easy like Sunday morning sums it up. Once again, you’ll need a high speed Internet connection to view the video. Enjoy =)

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.

Today was a big day for Ella. Thank God for the successful surgery. Dr. Kays and his staff are truly amazing – – thanks be to God for their talent and passion for this high-risk birth defect.

For those of you that are not familiar with this condition, Ella still has weeks in the NICU to fight for her life.

When we spoke to Dr. Kays this evening, he reiterated how sick little sweet Ella is…she is most definitely in the severe category for this defect and although today was a success, we are not even close to being out of the woods.

Right now, we need prayer for her stats over the next couple of days. Dr. Kays wants to see her stabilize and for her fluids to remain low (if her fluids get to be too high, it puts increased pressure in her abdominal cavity).

Also, her liver was very swollen from its prior location in the chest. If her abdomen gets too tight from too much fluid or too much swelling, it can lead to organ failure.

In Colorado, we have several 14ers (mountains that are 14,000+ feet in elevation). Sport enthusiasts like to make it a goal to climb all the 14ers.

We feel like we have climbed only a some of the 14ers – – birth, going on ECMO, adding a PICC line, getting off ECMO and a successful repair surgery. But if you look at the list of 14ers, we have a lot more mountains to climb.

Thanks again for your support and prayers. Please continue to pray for Ella – – that she may grow strong and recover well from her surgery over the next couple of days. God bless.

Our baby girl sustained through the night. Her blood pressure continued to be low early this morning so they gave her more blood. The pressure has been fine ever since. Her c02 gases are back down to where they should be and her O2 is still solid.

Ella looks good this morning, a lot better then yesterday. She was awake when we arrived at her bedside. She been on a double dose of fentanyl since the surgery for any pain. Her incision looks a bit more red today, but that’s normal.

Dr. Kays indicated that a chest tube would be inserted on Wednesday to relive the fluid in her chest. This is typical with severe CDH cases. He’s also planning on removing her ECMO cannulas then as well. I can’t wait for her to get these out! These cannulas have minimized her ability to turn her head and restricted the way her body can be turned. Once these are removed, they’ll be able to let her rest on her side and belly. This should also help with her fluid build up.

Late yesterday afternoon, Dr. Kays shared with us the details of the surgery. He confirmed that as severe cases go, it was textbook: the surgery went very smooth and there were no complications. (Praise Jesus!)

He confirmed the severity of Ella’s CDH. Only about 5% of the left side of her diaphragm existed. He had to stitch in a pretty large GOR-TEX patch to fill the space.

He also had to use some of the patch when closing the incision, as to not put too much pressure on her organs. You can’t see this patch though because it’s below the skin, but stitched to her abdominal muscles.

We asked about how her body would respond over time to these patches. The hope is that the body will grow around them without issue. This isn’t always the case though.

At the moment, there are risks of a possible infection. As Ella gets older, she’s going to grow, but her patch is going to stay the same size. For this reason, there is a chance of a reoccurring diaphragmatic hernia which would require another surgery.

In the middle of my head spinning with all this information, Dr. Kays stopped and asked, “And what do we call surgery for a reoccurring diaphragmatic hernia?”. When I couldn’t remember the answer that he had previously shared with us during our initial visit in June, he replied with a smile, “We call that a privilege“.

To be blunt, it is called a privilege because you can’t perform this surgery on a baby who doesn’t survive.

Something we did learn is that not all of Ella’s organs were put back in the “right” place. For example, due to restrictions of her intestines developing in her chest, her colon and large intestine had to be routed a bit differently. Her appendix is actually on her left side! These are some of the reasons for future problems like reflux, but we pray that these would stay to a minimum.

We praise our Lord for the successful surgery yesterday and are so blessed to have Ella with us. It blows our minds to see how God is using this time to stretch us and touch so many other lives.

Please continue to join us in prayer for our baby girl.

We love you all.

BTW: In the middle of writing this post, Dr. Kays walked in and said that he is “pleased” with her progress and felt good about her current stability. Go Ella!

P.S. Tina and I had slept better last night then we had in awhile. We got a solid 10 hours. (yay)

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.”

(picture of Tina and nurse Angie watching over our baby girl)

Ella had another good night. Her blood gases have been stable and she’s still as cute as ever. At the moment, she has a good amount of fluid build up so she looks pretty swollen. We’re hoping the chest tube will give some relief in this area.

We had expected her surgery to be done this morning, but there’s been no sign of Dr. Kays. We really hope that he is still planning to work on her today. The sooner those cannulas come out, the sooner she can start being turned on her side and stomach.

UPDATE (1:30pm EST): About 10 minutes after the above post, Dr. Kays walked in a kicked us out of Ella’s area so he could do the surgery. We’re expecting him to finish up around 3:00pm EST.

UPDATE (3:30pm EST): Nurse Angie poked her head out about 45 mins ago and said that the surgery is progressing well. We’re expecting things to wrap up soon.

UPDATE (4:10pm EST): Dr. Kays just came out with his team. Ella’s surgery went fine. She did have a little blood loss so they’ll be monitoring that. They’re also in the process of replacing the arterial line in her belly button which they use to draw blood, give meds, and monitor her blood pressure. They’re are also going to take a chest x-ray to confirm the placement of the chest tube and arterial line.

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 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!

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.

Well, we were hoping for a perfect streak, but Ella had a rough time last night. Dr. Kays and the team are being challenged to manage her fluids. They’re having to constantly calculate how much and decide what to put back into our baby girl’s body.

Due to the rate of her fluid loss, she risks being dehydrated, even with all the water retention! It’s her circulatory system that can lose too much fluid while her other tissues retain it. Her poor little head is really swollen too.

This type of swelling is to be expected, but it’s not a good thing. It is also building up in her chest cavity on the right side which is reducing her lung capacity. Dr. Kays is going to be placing a chest tube on her right side early this afternoon. We hope that this will give some relief.

Her cO2 gas wasn’t looking good last night either. It was pretty elevated (in the high 50’s, should be around 40). They were able to bring this back down this morning after a good suctioning though.

Her other stats look pretty good. Her O2 saturations are doing alright, and her acid levels are in check.

Ella is still very sick though and we need to pray for her to get over this fluid management hump.

Father God, we lift our baby girl up to you and know that you are in control. Please ease her fluid retention and let her stats improve. We also pray for no negative events around the other chest tube being inserted. She is weak but You are strong. Thank you for our baby girl, and the support and prayers of others. She is in your hands Jesus. Amen

SIDE NOTE: Tina’s mom made it last night, but her flight was delayed and it took awhile for her to get the rental car. She didn’t arrive here until 3:30am! It’s nice to have some family around and we look forward to our future visitors too.