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]

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.

We went to visit Ella this evening – – It was so cute…when we arrived, one of her nurses Michelle, had made her a bow and placed it on her head wrap. She told us that we can now bring goodies to surround Ella in her bed too. So, she contributed a cute little teddy bear and the frog blanket that Ella was resting on. That was so nice!
  
Michelle told us that all her stats continued to remain stable since earlier when they reduced the ECMO level to 180.  This is such good news…although there is never a way to predict what Dr. Kays will want to do next, she took a guess by stating that she imagines that they will try taking Ella off of ECMO in the coming days to see how she responds (I guess that the ECMO level is about as low as you would want it before they try removing her from it). If it is favorable and she can remain stable for 24 hours or so, then Dr. Kays will likely be ready to operate. This is our hearts desire — that she can remain stable enough so that he can operate. It is strange to look at her and think that all of her abdominal contents are still in her chest…you look at her and you would never know.
 
Yes, her parents are in love already…she is so cute! She was gripping our hands this evening, letting us know that she is fighting hard. At one point, she woke up and decided that she would respond to our voices. So, she opened each eye just slightly and started looking around and responding to us. That is really the first time that she has tried to look around and check things out while we visited. I can’t wait for the coming days when she is feeling better and is more curious to look around. It is fun to see that little person in there behind those eyelids!
  
Thanks to everyone for your continued prayers. Also, we want to lift up another boy with CDH named Evan. He is 2 beds down from Ella. He was born about a month ago and did not require ECMO. Actually, he has made really good progress – – he is already breathing on his own and trying to feed from Mom. However, he is having problems with his liver functioning, which is keeping him in the level 3 NICU. Please also lift up Evan, that God will heal his liver and continue to heal his lungs.

Ella continues to be stable – – praise God!  They reduced the ECMO earlier today, as Josh mentioned.  They took it down from 220 to 200.  I know that may not mean much, but it simply means that they slowly decreasing the amount of work that the machine is doing to see how Ella responds.  So far, Ella is doing amazing.  Her vital stats and blood gas levels are remaining the same – – this just means that her body is doing that extra bit of work.  This is what we want to conitinue to see as they decrease the levels…we want her to become stable enough so they can perform the surgery of moving her abdominal contents out of her chest.

No drastic changes are ever made overnight.  So, they will wait to hear from Dr. Kays in the morning.  However, if she has remained stable throughout the night, they will most likely look to reduce the ECMO machine levels even further tomorrow.

Enjoy the pics…I know that I enjoyed staring at my baby girl.  The swelling has definitely decreased since they gave her the meds earlier today.  A few times, her right eye started to peek open when I was holding her hand or touching her head.  Also, I felt a few tugs back from her gripping.  Although these details are small, they mean a lot coming from Ella.  I can’t wait until she begins to feel better and really begins to respond and look around. That will be fun…

Ella has been having a good day – – she is still very sick.  But, her stats have been stable on ECMO throughout the day.  So, ECMO is doing its job and she has been holding steady!  Thank you for all your prayers…let’s continue to pray that her stats can remain this way!

Ella went on ECMO this afternoon.
 
When a child has a severe condition that has not responded to the normal therapy of a respirator, medicines, and extra oxygen, they could die but ECMO can be used to help save their life. ECMO stands for Extracorporeal Membrane Oxygenation. The ECMO machine is very similar to a heart-lung bypass machine that they use for open heart surgery. When a child is placed on ECMO, the blood receives oxygen from an artificial lung in the ECMO circuit. The artificial lung in the ECMO circuit provides the child’s blood with oxygen needed to live until her lungs are able to function on their own.
 
In Ella’s case, the surgical procedure to connect her to the ECMO machine requires tying off her carotid artery. If you think about it, this is surgery in and of itself! Dr. Kays reported that Ella did well during the procedure.Although ECMO has its own risks, we are hoping that this machine helps to stabilize her over the next few days. As you will see in the photos, this is a MASSIVE machine that requires a specially certified technician to monitor the machine at all times.
 
For the first few days, Ella had a nurse 24/7 at her bedside monitoring her stats. In addition, she will now have a respiratory specialist that is certified to operate ECMO equipment at her bedside to monitor the machine and make sure that the levels in the machine are proper (all the blood gases in the machine, platelet count, etc.) and try to minimize any failure of the machine, since that can have devastating consequences.
 
Her first hour on ECMO was very promising. All of her stats looked the best that they had been since she was born (good heart rate, blood pressure, blood gases in line, etc.). This is the result of the ECMO machine. Since the ECMO machine is doing the work of the lungs, it will give Ella a chance to rest. Her body has been taxed the past few days; it has tried very hard to work…and yet unsuccessfully. The ECMO machine should bring all her vital signs of stability more in line where they should be while giving her body a little break.
 
Please continue to pray for her…we want to see her get stable enough so that she can have surgery to move the extra contents in her chest back down to her abdomen…which will give her lungs the room they need to grow! The next few days are very important!

Today, we connected with Tracy, the mom of Baby Jonathan. As we mentioned earlier, it has been 12 weeks since Jonathan was born and he was admitted to the NICU. He spent the first 30 days of his life on ECMO and went back on ECMO for a second round at the end of June till now.

Each day, he has continued to become more and more ill. His stats have not been improving. Tracy has been at his bedside each day. Jonathan is very alert and responsive to his mother. They hold hands and spend lots of time together. When he is sleeping and hears his mom’s voice, he wakes up from sleep and responds. They have a special bond with each other.

Since Jonathan has been on 2 rounds of ECMO and his stats are not improving, Dr. Kays is recommending that they remove Jonathan from ECMO tomorrow morning, July 27, 2007 and just wait and see how he does. Dr. Kays is not relaying positive vibes that his condition will improve – – if anything, he has prepared Tracy for the worst.

Tonight, Jonathan’s father Keith is arriving. Tomorrow is a big day for the Mitchell family since they are unsure how Jonathan will respond when he is removed from ECMO. Josh and I will be getting together this evening with Tracy to pray for Jonathan…to pray for the Lord’s will in his life. God can choose to take Jonathan tomorrow to be with Him, which is not what we want. But in the end, we all really want the Lord’s will, since we know that is best.

Please say a prayer for Jonathan…

So, birth is traumatic enough! And as you know, Ella has a condition called Congenital Diaphragmatic Hernia. So as soon as she was born, she was unable to breathe due to her underdeveloped lungs. This is the entire reason that we came to Florida – – so that Dr. Kays and his team could work on Ella and give her the best chance of survival.
 
Upon birth and within the first few hours of life, Ella’s biggest challenge is the amount of carbon dioxide in her system. The ventilators were doing a great job at making sure that her body and brain were receiving enough oxygen. Yet, since her lungs are so immature, she is having a tough time getting the carbon dioxide out of her system. Her levels were too high. For a baby, they should be around 60-70 – – she is at 130.
 
So each hour, they have been monitoring her vitals: heart rate, blood pressure (don’t want too much hypertension from the additional stress this condition places on her heart trying to pump the blood to the lungs), oxygen levels in her brain and body, pH levels, etc. They are working diligently with 24/7 monitoring and care to try their best to stabilize her. They want to stabilize her before they perform surgery.
 
She is very sick and has done well adjusting to the various therapies and medications during this first day. Continue to pray that her vitals will improve and that she can be stablized without requiring ECMO. Keep in mind that it is very likely that Ella will need ECMO at some point during her recovery. However, her recovery will be significantly delayed and make her fight for life even tougher, if she has to go on ECMO prior to surgery, where they move the contents from her chest to her abdomen.
 
We just checked on Ella before we decided to go to bed. Her carbon dioxide levels improved, but then it swayed the amount of oxygen she was receiving in her body. So, better progress on one vital sign, but it threw off another. We have asked God to watch over her throughout the night as she fights.

…we drive up to the Emergency Room and walked-in. Fortunately, the waiting room was empty. Josh explained to the front desk that he thought I was in labor. She sent me through the doors and asked me to sit and wait for a nurse to come get me. As I waited, the pain was continuing to get stronger and stronger. The lady rolls up with a wheel chair. I ask her to wait for a minute…as a contraction passes. Wow, whatever is going on…it is painful!

They wheel me to a bed and the nurse begins to gather all our information verbally and states that she will have a doctor come in to check my cervix. The doctor on staff arrives to examine me. She informs us that I am 9 centimeters dilated and fully effaced. Josh’s jaw drops and with his mouth wide open, he is sitting there in complete shock! Say WHAT@#$%$#@!???

This confirmed three things: first, I was not imagining this pain that I was feeling; second, the emergency staff was now going to take me seriously and third, I was about to give birth to a baby girl! This was such a big surprise for me…wow, was this really happening?

I begin to worry.

Where was my OBGYN? And more importantly, where was Dr. Kays? Did they try and reach him? Was he around? Moments later, Dr. Richards walks in. Phew…there was the doctor that was going to deliver. That part was good.

The pain every couple of minutes was so intense. I was begging for an epidural. I was so far along that I wanted to make sure that I could still have one. Finally, it was 6:00am and the anesthesiologist was getting ready to place the needle in my back when a very strong contraction arrived. I asked her to wait. Simultaneously, I lose my dinner from the night before in a projectile manner out my mouth and my water breaks between my legs. What a strange feeling…

Once the drugs begin to take effect a few moments later, I am a happy woman. It was the first break I had received in hours! This gave me the strength to push on…literally.

Dr. Richards came back to check on me. I was now 10 centimeters and fully dilated and effaced. At this point, he let me know that they were able to reach Dr. Kays and that he was on his way. This made me feel so much better – – that was the entire reason we came to Florida.

Later I found out that it was the first shift back for Dr. Kays after concluding a 2 week vacation. And didn’t I just arrive in Florida less than 48 hours ago? Wow, God was watching over me!

My labor was moving along so rapidly that they wanted to try and slow it down. Dr. Richards wanted the opportunity to get some antibiotics in my system (I had tested positive for Group B Strep virus).

Ideally, you take antibiotics up to 4 hours before you deliver. Between waiting for the antibiotics to get into my system and waiting for Dr. Kays and team, we only had a small window left…this baby wanted out!

At 6:30am, they moved me to a surgical room where I would deliver. This room would provide the space and equipment necessary for Dr. Kays and his team to work on our baby girl once she was born.

The clock was ticking and we were just waiting for everyone to line up and be ready. Once the signal was given, I was asked to push. All it took was a few times…

It was about 9pm. At this point, I was starting to feel some pain in my lower abdomen, like menstrual cramps. Since I had not felt any contractions up to this point, I started to think that they were Braxton-Hicks contractions. Before we left for a late dinner to Olive Garden, I researched the so-called “false-labor” pains on the Internet. I wasn’t sure, but at this point, I was experiencing the pain about once every 20 minutes or so. It noted that dehydration could bring on these type of contractions. So, I drank lots and lots of water. The episodes were short and brief, so I just figured that my body was prepping for the big day that was around the corner, about 2 weeks from now.

When we turned the lights off around midnight and tried to relax, the pain was getting greater. The frequency was around every 15 minutes or so, and I was having a tough time sleeping. As the pain would sneak up, I would try and relax and breathe my way through it. Josh was so tired and I was trying my best to not make noise and let him sleep.

In between, I would find myself fading off into sleep but would wake up abruptly with the pain. Since I drank so much water, I would get up and go to the bathroom each time. The rest of the night was a blur…all I know is that I spent most of the night in the bathroom at the Extended Stay America, trying to not wake up Josh and trying to make sense of all of the pain.

For the next 4 hours, the pain intensified. Although I was not real alert, I did begin to note that the pain was getting longer in duration and more frequent. Finally at 4am, I woke up Josh and went outside the bathroom to watch the clock and time how far apart I was experiencing the pain. Keep in mind that I was still unsure about what I was feeling – – were these false labor pains?

What I know for sure: I have a high tolerance for pain – – and I was feeling a lot of pain. By watching the clock, these waves of pain were timing out to once every 3 minutes. Josh watched me experience the pain for one round and although I was not complaining too much, he knew. He shot up out of bed, “Tina, those are not Braxton-Hicks contractions. Those are not supposed to be that painful. We need to go to the hospital – – right now!” Fortunately, it was just 5 minutes down the street…