Aug
07
    
Posted (Tina) in All Posts on August-7-2007


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!!!



 
Aug
08
    
Posted (jooosh) in All Posts on August-8-2007


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.



 
Aug
08
    
Posted (jooosh) in All Posts on August-8-2007


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.



 
Aug
09
    
Posted (The West's) in All Posts on August-9-2007


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.



 
Aug
09
    
Posted (Tina) in All Posts on August-9-2007

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 =)
 



 
Aug
10
    
Posted (The West's) in All Posts on August-10-2007


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.



 
Aug
11
    
Posted (Tina) in All Posts on August-11-2007

Ella’s stats are the same – – but not improving. Her bilirubin levels are continuing to increase, so they are running more tests on her liver. They increased the Lasix to try and reduce more of the swelling. Thankfully, they have not seen any more seizure activity since they medicated her at the initial sign of seizures. So, they were going to try and reduce the seizure medication — we hope the seizures will stay away!
 
This upcoming week with her surgery is a big milestone. Please pray for Ella’s strength and a successful surgery.
 
Also, her parents are exhausted! Please pray that we will be renewed by His strength. It is so tough to see this sweet little girl connected to all these machines, day after day, with no forward progress.
 
We know His timing is perfect and that He is in control. Holding onto these truths, and being encouraged and reminded about them by all of you, has been a saving grace. But it has not stopped the emotions from rising to the surface each day!
 
Lord, help us to trust you even more as we watch the fulfillment of your will unfold for sweet little Ella.



 
Aug
11
    
Posted (jooosh) in All Posts on August-11-2007


Tina thought the beds at the hospital were so comfortable that she wanted to sleep there again. Not quite.

Tina’s been pumping milk for our baby every three hours since she was born. Yesterday afternoon, she wasn’t feeling too well. Last night at 11pm she still wasn’t feeling well and she was burning hot so we headed to the ER. Three hours in the waiting room and two hours waiting for a doctor…it looks like Tina may have a breast infection.

It’s 5am and we’re still waiting for the test results. We’ll keep you posted.



 
Aug
12
    
Posted (Tina) in All Posts on August-12-2007


Ella’s condition is the same – stable but no improvement. You might notice that she has a new head band – pink with hearts. So cute for all the girl babies in the NICU! She did take a few moments to look around and respond to Daddy’s voice.

The update on my condition – – thank goodness that I did not have to be admitted into the hospital. Although we were there from midnight until nearly 9am (we just got home), it is good that we decided to visit the ER.

I was diagnosed with Mastitis, which is a bacterial infection of the breast. I will need to take antibiotics for 10 days and get lots of rest.

Keeping this post short because I am falling asleep while writing it!



 
Aug
13
    
Posted (jooosh) in All Posts on August-13-2007


Ella had a stable night. We’re waiting to hear from Dr. Kays about the timing of surgery. We expect to hear from him sometime today.

While Tina was in the ER yesterday I went up to see how our little girl was doing. She woke up for me again and grabbed my finger. Man she had a tight grip and was yanking my finger all around. With all that strength and new headband she reminded me a bit of this guy. =)

We continue to pray for an incredibly successful outcome and that the Lord would guide Dr. Kays hands during surgery. This little girl is so much a part of us and it is amazing to see how much she’s becoming a part of everyone else.

Thank you all for your continued thoughts and prayers.

God Bless

UPDATE: We talked to the nurse practitioner this morning. Dr. Kays will not be in until later this afternoon, but he did call in with instructions to switch out the ECMO machine. The switch of the ECMO machine will provide a new circuit with fresh blood and newly maintained equipment to minimize potential blood clots. There are some risks involved with this, so please pray that this transition will go smoothly. Ella will be off the circuit for about 30 seconds which is her lifeline at this time.

We might be able to conjecture that surgery will be tomorrow, but until we talk to Dr. Kays we won’t know for sure.

Please stay tuned…