Ella’s condition has not gotten worse, but she has not improved either. Currently her care has not changed course and will stay the same over the weekend.

We talked to Dr. Kays today and surgery is scheduled for either Monday or Tuesday of next week. At this point, unless Ella has a tremendous weekend and makes large improvements, she will be having surgery on ECMO.

As we mentioned before, the risks of surgery on ECMO are high. The primary risks would be the possibility of severe bleeding as well as an increased risk of bleeding in the brain which could cause brain damage.

Of course, we would love to see Ella’s stats miraculously improve over the weekend. But if that does not happen, we just want to pray that she can gain as much strength as possible and that the surgery will be successful.

Also, we want to let everyone know to pray for Dr. Kays. He actually had to leave town for today and the remainder of the weekend due to a family emergency. All we know is that his mom was undergoing surgery today in Oregon and that he went there to be with her and his family. Please lift up the Kays family in your thoughts and prayers as well.

The past few days have been tough. It has been hard to watch Ella not progressing as much as we’d like to see. Even before we walked into the hospital, I had a good cry.
 
The Lord knew that we needed a bit of relief.
 
So when we went tonight, Ella woke up. We had not seen her awake for the past several days. To have a few moments connecting with her was such a gift. Her little eyes were open. She was alert. She was responding to our voices. She was holding onto our hands and gripping hard.
 
Ella was only awake for a few minutes and then she fell back asleep, resting peacefully. But, this was exactly what we needed. And when it happened, we both knew that it was a gift from Him – a detail so small, yet it transformed our sadness into renewed hope.
 
As we posted earlier today, please continue to pray throughout this week for Ella’s specific needs.
 
VIDEO CLIP
Below is a little taste of what we saw tonight. The video is about 2 minutes long and you’ll need a high speed internet connection to view it. Enjoy =)
 

Ella’s stats were stable this morning and within a decent range but she continues to be very sick. We have compiled a list of specific prayer requests for Ella:

• p02 level as high as possible (her recent one was 114)
• pre and post ductal blood saturation levels at 100%
• cO2 level should be around 40 (her recent one was low 30’s; this is indicative of her gas exchange levels)
• her fluid retention has been high the past few days throughout her chest, abdomen and back
• improved liver function and reduced jaundice
• the content of blood in her urine is higher than normal, pray that this would reduce
• balanced pH levels in her stomach

 
Please pray for her stats to improve and stabilize over the next few days before surgery. If she can improve enough, they can remove her from ECMO. As mentioned previously, the risk of severe side effects while having surgery on ECMO is incredibly high.

Taking in the reality of the situation made for a pretty rough evening last night, but God comforted us through a book by Max Lucado: A Gentle Thunder. After our post yesterday evening Tina and I read chapter 4 together and it totally spoke to us. I felt so touched that I thought I would share the chapter with you all as well. Check out the video on yesterdays post if you get a chance.

Thank you for lifting us up in prayer. We continue to praise our Lord for the work He is doing, and thank Him for blessing us so much with Ella Renae.

Ella’s stats are kind of teetering on the edge tonight. Her blood gas percentages aren’t as solid as we would like, and her pO2 levels are also not as high as we’d like. We were also told that she’ll be having surgery sometime next week…even if her stats on ECMO don’t improve.

We’re still holding out for her to grow stronger over the next few days so that she can have surgery off ECMO, but if she doesn’t improve, she will have to have surgery on ECMO which is incredibly risky.

This is very hard news to hear. The heaviness and deep sadness is difficult to even describe. I feel like we are walking on hot coals but there’s no relief in sight.

The only think I could do on the drive home tonight was to repeat part of Psalm 23 over and over and over:

Even though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me;

Please pray for Gods grace and peace to be upon Tina and I tonight and for our baby girl’s stats to improve.

God bless all of you.

UPDATE 12:30 AM EST: The video below was created within an hour of the above post. It’s about 20 minutes long and requires a high speed internet connection.

Patience and Trust…this is not how I wanted God to teach me either of them! BUT…He knows exactly what it takes to move us in the direction we need to go. Our Lord does know best. It’s funny that we think we know better sometimes, but He ALWAYS knows better.

I’ve often thought of life as a large labyrinth. We are deep in the middle of it, walking through, free to choose the direction we desire to go. Our Heavenly Father has a birds eye view of our life’s labyrinth. He sees the beginning and the end. He wants us to take the best way through the labyrinth (notice I didn’t say the easiest). His path is going to draw us closer to Him and will have the greatest impact for His Kingdom.

We have a free will to choose the path that He lays before us, or go down a path that we think is better. For myself, if I’m honest, I’m keen to take the path that is most comfortable. This is the desire of my flesh. God’s path is not the most comfortable, if anything it can be most uncomfortable!

But what He teaches us in our physical and emotional discomfort is how to rest in His spiritual comfort. To be able to praise God through all circumstances is a wonderful lesson to be learned. His scripture says it best:

Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:4-7

My flesh is so weak, but the Holy Spirit who lives in me gives me a strength and peace that surpasses all human understanding.

Praise God for my baby girl and the blessings that are pouring out from her circumstances. My prayer is for Ella Renae’s healing and comfort, but even more so, for God to be glorified and for all the people who have been touched by her story to draw closer to Christ.

Thank you Lord for taking us down this path and for teaching us patience and trust.

We will continue to praise you through this storm.

Ella had a better day. With the ECMO machine turned back up to 160, her stats improved. This makes sense since the machine is doing more of the work.
 
We learned that they wanted to turn up the machine, so that she could have a break, but also so that they can change the circuit in the ECMO machine. We are nearing two weeks of Ella being on ECMO which leads to a great risk of blood clots in the machine. So, when they reach this point, they like to change out the machine and start fresh to minimize that risk as much as possible.
 
The latest news is that they will likely keep Ella on ECMO until next week. We don’t expect to see any drastic changes, like getting her off of ECMO, until next week.
 
Please continue to pray that Ella will gain strength throughout this week. Also, that her parents will hold tight to His promises during this challenging time!
 
Thanks again for all the posts – – all of you have no idea how much these help us!!!

 
Happy 2 weeks Ella! Look at the expression on that face…
 
Although Ella’s stats are okay, they are not great. The fluctuations have been a bit much over the past 2 days. Therefore, Dr. Kays decided to turn the ECMO machine back up to 160 this morning. He wants to give her body a bit of a break: her kidneys, lungs, liver, etc. As you might imagine, all the chemicals running through her little body can have some lovely side effects!
 
Normally, they try and keep these babies flat on their back before they have surgery to minimize the shifting of contents in their chest. Post-surgery is when they typically can place them in other positions. But in this case, Ella has a build up of fluid in her body, mostly evident in her back. So, they have propped her up more so she is resting on her left side and plan to prop her to the right hand side later today. To decrease the puffiness and fluids, they have increased her dosage of Lasix.
 
This morning has been an emotional one for Mom & Dad. Just part of the roller coaster ride experience. We just want our baby girl to be okay and it is such a tough thing to experience these raw emotions.
 
All of this is not in our control. The only thing we can do is cling tight to His promises. A supporter and prayer warrior that heard about our story emailed us recently with this verse: “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” (Romans 15:13).
 
With this downturn on stats, this may not be Ella’s week for surgery. It seems that her body needs more time to strengthen. Please continue to pray for her body to heal and become strong…and pray that her parents can hold tight to the truth: “Be joyful in hope, patient in affliction, faithful in prayer” (Romans 12:12).

Dr. Kays decided to leave the ECMO machine flow at 120, based on Ella’s fluctuating stats. Her blood gas levels are in the same range – – not great, but stable. Her pO2 level when they checked at 8pm was still the 60’s. We are hoping that her stats will improve overnight, since she had a rough day.
 
While we visited with her tonight, she seemed a bit more alert and not quite as sedated. She was definitely taking the time to look around especially when she heard our voices.
 
Thank you for staying in touch on Ella’s progress. She has a long battle to fight and we appreciate everyone’s thoughts and prayers.

Ella had a tougher night – they drew her blood gas level at 4am and her pO2 level had decreased from 116 to 64. This is still considered “stable”, but the fluctuations are not real good. We would prefer to see her stats climbing steadily. Her blood gas level at noon was low too – – in the 60’s.
 
They are waiting to see how Dr. Kays wants to proceed. The ECMO flow is still at 120. We will watch, wait and pray that her strength continues and that God provides wisdom to Dr. Kays on the best way to move forward.
 
Ella’s monkey, Reneke, is making sure that the CD is playing now and then…providing comforting songs and voices.
 
Thanks again for all your support and prayers during this time. The comments from everyone on the blog are so appreciated!

We visited Ella this evening and she looked good. We waited while they took another blood gas test: her levels had increased from the afternoon test. This is a positive sign.
  
Dr. Kays was called into the hospital to treat another baby for an emergency and he stopped by to see Ella. He was pleased with her stats. Again, we hope that this will be her week for surgery. We are anxious to have her removed from the ECMO machine and to see her reach this very important milestone.
 
…and just in case you were interested, Josh wanted me to let everyone know that the name of Ella’s monkey is Reneke (rah-knee-key) 🙂