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.

We went to see our baby girl late tonight because we were putting a little gift together for her. We burned a CD with Tina and I reading her some stories and layered some Baby Einstein music in between. We found a clock radio with a CD player built-in that can sit right next to her bed.
 
We got it all set up and I think she enjoys it. We could see her eyes look in the direction of the audio when it was playing. We’re hoping that the music and our voices will be some continuous comfort for her.
 
She is showing signs of indirect jaundice which is indicative of all she’s been through, but they’re watching it closely just to make sure her liver is functioning properly.
 
Her stats are doing ok. We pray that she remains to be strong so that the flow on the ECMO can continue to be reduced. Hopefully she’ll be removed from ECMO this week in preparation for surgery.

Good news: Ella’s stats improved over night and continue to do so.
Tough news: The EEG results came back and Ella is in fact having seizures.

We’re going to meet with Dr. Kays and the staff this afternoon to discuss the details. We don’t really know what this means, short or long term, but ask for your continued prayers.

At this moment Ella is stable, but her overall stats have dropped a bit. We were hoping to see her pO2 levels (oxygen in the blood) increase from last night, but they decreased over the last 16 hours instead. She went from a pO2 level of 197, to 142, to 108. Dr. Kays is in there now working on her. This is part of the roller-coaster ride that is CDH.
 
Until she can show improvement while being on ECMO we won’t be able to take her off to have the surgery. There is the option to do the surgery on ECMO, but this greatly increases the risk of unwanted events due to the anti-coagulation drugs in her system. The possibility of a stroke or uncontrolled bleeding would be high if surgery is done on ECMO. At this time there are no plans to do the surgery on ECMO, but that can change.
 
Please continue to pray for our baby girl’s strength. We know that God is holding Ella in His hands and that He is totally in control. These are the times when our faith is tested. Lord, help us to continue to trust in you, while your Spirit comforts us with words of encouragement. Thank you Lord for your words this morning that were so comforting.

Hoping to speak with Dr. Kays this afternoon to get some more details on the next steps. Ella continues to do well at this time. They did see a little blip on her CBC labs but it’s nothing to be alarmed about. They will take a urine and blood culture this afternoon just to be sure there’s no kind of infection going on.

One week ago today our beautiful baby girl was born. She has been incredibly strong in her journey so far, but she still has a long way to go. For the second time, they reduced her ECMO flow this morning to 180 from 200 (her starting point was 220). In addition, the amplitude on the oscillating ventilator was reduced and Ella took it very well. The continued regiment of Lasix is minimizing her swelling. Ella’s stats are remaining steady which is the best news we could hope for.

Please continue to pray that Ella remains strong as they reduce her dependency on the machines. This is a crucial milestone for her to achieve before they can perform her much needed surgery.

Continuing to do well, and very content to do so.

The picture says it all.

Praise God that Ella continues to be stable. Her stats kept strong throughout the night. Now is the time for patience and continued stability.

Thanks to all of you for your faithful support, comments, and prayers. They are all so incredibly uplifting and encouraging. You are all our strength as well.

Miss Ella West is continuing her stable track. All her vitals have maintained a steady course. Dr. Kays decided to reduce her ECMO flow a bit, putting more work back on Ella and she’s taking it ok. They’ve also given her some Lasix to reduce her puffiness and water retention, a typical side affect when a baby is initially placed on ECMO.

I spoke to baby Ella’s aunt and cousins this morning. How encouraging and precious to have Miss. Megan, Miss. Claire, and all her cousins coming together to pray for her. I’m looking forward to the day when Ella gets to meet them. I know she is too =).