Tina and I are doing better emotionally this evening. It was pretty tough seeing our little girl go through a bit of a downturn over the last day and a half. My roughest time was yesterday when I saw her cry but there was no sound. Uhhhh…it just killed me. I just wanted to pick her up and hold her and tell it her was going to be ok, but I couldn’t.

Today, we went to see her just after lunch and it was really tough on Tina. Ella was more awake but still very sedated with her eyes wandering around. In that moment, her stats were trending down and there was a rhythmic twitch on the left side of her body (her right hand and right leg). This was tough to see. The twitching was a concern for them as well, so they ordered tests to make sure there was no bleeding in her brain.

We left the hospital feeling pretty raw.

We headed back to see her this evening. She looked better, and although they still don’t know the exact cause of the twitching, the tests for bleeding in her brain came back negative. This was reassuring.

The staff has seen this condition before with babies on ECMO. With brain bleeding ruled out, sometimes it can be a sign of seizure activity or simply a muscle twitch with no explanation. Typically with seizures, the stats will drop – – Ella’s stats remained stable. Another possibility: the canula in the arterial vein in her neck might just be hitting the nerve, for example, since the twitching is on that same side. Tonight they are trying some anti-seizure meds just to make sure. The neurologist will be visiting Ella again tomorrow for another look.

Dr. Kays made the decision to reduce the flow on the ECMO machine again to 160. Since that time, her stats have remained stable. Again, we would love to see the pO2 level remain more constant and even increase. As you might begin to appreciate, her pO2 levels over the past 40 hours have gone from 197, 142, 108, 95 and now 146 this evening. Yes, this is a roller coaster ride!!!

Although it was a rough 36 hours, we are feeling much better this evening. Ella’s improved stats with the ECMO machine reduced to 160 is a positive sign. Thanks again for all the amazing support and prayers from all of you.

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.

We went to talk with Dr. Kays this afternoon. The results of the EEG do show that Ella is having seizures. Seizures are not indicative of a healthy brain. This means that brain damage has occurred at some point along this journey.
 
The tests show the damage is in two places: the right frontal lobe and the mid-brain on the left hand side. At this time, they do not have a way to know the degree of damage: it could be anywhere from mild to moderate to severe.
 
The amazing part is that through all of these highs and lows, God still continues to speak to us.
 
There was a thunderstorm outside this morning when the alarm clock went off. As I laid there in bed, the words of this song spoke to my heart:
 

I Will Praise You In This Storm

 
I was sure by now God,
That You would have reached down
And wiped our tears away,
Stepped in and saved the day.
But once again, I say, “amen”
and it’s still raining.
As the thunder rolls
I barely hear You whisper
through the rain,
“I’m with you”
and as Your mercy falls
I raise my hands
And praise the God who gives and takes away.
 
And I’ll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I’ve cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm
 
I remember when I stumbled in the wind
You heard my cry to You
and raised me up again.
My strength is almost gone.
How can I carry on
if I can’t find You?
And as the thunder rolls
I barely hear You whisper
through the rain
“I’m with you”.
And as Your mercy falls
I raise my hands
and praise the God who gives and takes away.
 
I lift my eyes unto the hills
where does my help come from?
My help comes from the Lord,
the maker of heaven and earth
I lift my eyes unto the hills
where does my help come from?
My help comes from the Lord,
the maker of heaven and earth
 
And I’ll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I’ve cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm

This song is by by Casting Crowns. You can listen to it below.

[mp3]music/praiseyou.mp3[/mp3]

Since we met with Dr. Kays yesterday afternoon, the ECMO machine was reduced to 120 (we have been reducing in increments of 20, starting at 220). Ella is continuing to fight and her stats have remained stable despite the turn down in the ECMO machine. She is doing well.
 
Also, the seizure medication that they have placed her on is doing its job. She has not had any since they placed her on the meds.
 
Going to visit her is tough, but at the same time, is so good for the soul. She is sooo cute and has such a sweet spirit. She deals with the wires and discomfort like a champ.
 
We love her so much. Please pray that she continues to remain stable and gain strength. We would like to see her ready to have surgery this upcoming week.

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.

Ella had a good night – – stable and progressing forward. We don’t expect much news or changes to her care today. Most of the time, the weekends are mellow without drastic changes. For now, she is maintaining a steady path and getting stronger each day.
 
Tomorrow, we look forward to seeing if her ECMO level will be dropped further along with an update from Dr. Kays on when he would like to operate. We are thinking it will be sometime this week.
 
Please continue to pray that she gains more and more strength each day. We want her stats to remain stable once she is off ECMO and this requires a lot from her little body!

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) 🙂

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!

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.

 
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).