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 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.

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 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]

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.

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.

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.

Ella has maintained through the day – stats are stable.  We will not know if she has an infection for another 48 hours or so.  We hope that she has been able to fight off infection, but only time will tell. 
 
In addition, she is maintaining her stats…but when we talked to Dr. Kays this evening, he wants to see more than stable stats.  He wants to see her blood gas levels continuing to increase.  Improved blood gas levels mean that her body is getting stronger and doing even more work, which means a better chance of stability once she is off of ECMO.  Her blood gas levels have increased since she initially was put on ECMO, but have remained somewhat stable over the past couple of days.  Please pray that her blood gas levels will increase substantially.   
 
The other challenge: ECMO has been good for Ella.  It has given her body a chance to recover in a way that would not have been possible without it.  But, it is not good to leave babies on ECMO for too long.  Dr. Kays stated that reducing the flow on the ECMO machine is a positive sign, but along with that, there also comes an increase in the risk of blood clots forming in the machine.  This is one of the greatest risks with ECMO – – blood clots – – they can cause brain damage.  So far, Ella has not had any brain damage, but we want to continue to be vigilant with prayer that the ECMO machine will not have any failures.
 
At this point, Dr. Kays wants to perform her upcoming surgery off of ECMO, which means that we need to be patient for Ella’s condition to improve even further.  Please pray for her strength – – that her lungs would get stronger and that her stats overall would not just remain stable, but drastically improve.  If they can improve over the next few days, it would be a reasonable assumption that she would have her surgery performed within the next week.
 
And thanks for the prayers for Evan – – he was moved to the 2 level NICU today, which is a good sign. Although he is still having liver problems, they decided to step him down a level. Please pray for the strength of his Mom and Dad, as they have some tough decisions to make regarding the next best steps for his health.
 
Today was a rough day emotionally.  Thanks for the continued support and prayers.  It is hard to see Ella hooked to all these machines and not know what the outcome will be for her.  We know and trust in our hearts that God is in control and that He knows best.  But that does not take away the emotion of seeing this sweet baby hooked up to all these machines.  And it does not take away this immense desire to hold and comfort her!  As each day passes, we are growing more and more connected with Ella.  She is burrowing deeper and deeper into our hearts – – we just love her so much!  Please continue to pray for all three of us – – all of us need strength right now. 
 
As we were driving home this evening and the weight of everything from the day was on our hearts, the car was silent. Yet, God spoke words of comfort to our spirits while we were waiting at a signal.  Seconds later, we broke the silence and started sharing what God had placed on each of our hearts.  At that moment, we realized that God had given the same words of comfort to both of us!  We do not see that as a coincidence…that was great confirmation that He is in control at all times, even when our emotions get the best of us.
 
Finally, thanks and praise to God for Dr. Kays – – for his passion and talent with these babies.  It is so amazing to watch him at work.  We know that we came to the right place to have this baby and that no matter what happens, God is in control and it’s going to be okay.

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.