(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.

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.”

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)

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.

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.

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 =)

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!

Not much change for Ella throughout today. Still a bit touchy, but overall remaining stable. We don’t anticipate much change in her care over the weekend. She needs to rest up for surgery that’s scheduled for 8am (EST) Monday morning.

Please continue to pray for her strength in preparation for surgery, for her fluids to decrease, and for her to remain calm. Also pray for wisdom and guidance for Dr. Kays and his staff.

Thank you for all the support.

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!

Ella continues to do well, but it takes very little to upset her. When she starts to wake up, she fights the oscillating ventilator which causes her stats to drop. The staff is watching her closely and trying to minimize these swings, only using paralytics and morphine when necessary. For this reason, we don’t want to disturb her for now so our time with her tonight was mostly made up of watching her sleep and trying to be quiet.

She did decide to show us a little drama by fussing a bit which brought her stats down, but nurse Kate and the respiratory therapist were on top of it.

We wanted to leave by 10:30pm tonight, but we hoped to see her stats push up to 100 again. We waited….and Ella didn’t disappoint. By 10:25pm she was pegging her saturations again =).

Please pray for her to be calm and for a good nights rest.

Sleep well tonight my baby girl…sleep well.