I’m sitting in the NICU conference room writing this entry. I just saw our little girl and she continues to do well on ECMO. All her blood gas levels are where they should be which is allowing her lungs to mature even in their compromised state. The hope at this point is for her to keep going on this track, build strength and stability, come off ECMO, stabilize again, and then have surgery to move her organs that are in her chest back into her belly. That order may change, but at this point that’s the current path.
 
To give you some perspective as to the magnitude of the challenges with her disorder: picture the Dr. going into a room with 1000 knobs. As far as knowing which knobs to turn, he has only his experience, gut instinct, the knowledge he has about the human body, and what that baby’s body is currently telling him. For this reason, he has to make an educated guess on which ones to turn ever so slightly. If he turns the knobs just right, he’ll be able to proceed to the next room with 1000 knobs. A wrong turn could take him back to a previous room, or…worse. On top of this, every baby responds differently when the knobs are turned, increasing the challenge.
 
This process requires a lot of patience and a willingness to let things get worse sometimes so that they may be better in the long run. Fortunately, right now, things have been going very well, but Tina and I both know that things could turn at any moment and we trust that we have the right guy turning the knobs, and the God who spoke the entire universe into existence on our side.
 
Thank you Jesus for blessing us with Ella Renae.

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 =).

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…

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.

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

The picture says it all.

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.

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.

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.

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.

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.