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.

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.

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

The picture says it all.

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.

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…

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 =).

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.

Oh, I know that little miss Ella is the most important thing we got going, but I figure some of you might want to know how we’re holding up as well =).

Tina was released from the hospital on Thursday the 26th. She’s still a bit sore, but doing well health-wise. Holy cripes what an incredibly strong wife I have! I mean, I knew that I did. Now I REALLY know I do. Also, I know that if men were the ones having babies, we would have died off very quickly after the first generation. God knew what He was doing when He put the responsibility of having babies in the hands of women.

We’re also finally moved into our apartment. It was crazy because we had two trips to make from the hotel, one of those included a cat transfer, and we decided to do this around 10:30pm to be a little stealth with the cats. We had also hoped that it might be a bit cooler, but no coolness in the evening around here. How about 85 degrees @ 10:30 pm with 95% humidity?

Oh yeah, and we were on the third floor in the hotel with a little bit of an elevator assist, but no elevator at the apartment, and we’re on the third floor there as well! I was praying that Ella’s daddy wasn’t going to die with all the steps, heat, and humidity. We were up ’till 1:30am doing the move which explains why we went to visit Ella so late last night. We made it though, and it’s so nice to be moved in here.

How’s daddy holding up? Well, to be honest I would have thought I’d be a total basket case, just an emotional mess seeing all the things I’ve seen. But God has given me a strength that I would have never expected. To be able to stand there and caress my baby’s arm seeing her hooked up to all those machines and not totally ball, isn’t me! For God to give me the strength to sit and pray next to the Mitchell family and not totally lose it as Tracy’s baby boy passes in her arms, not my strength! Let me be clear, it’s not that I’m not being affected emotionally. It’s been an incredibly heavy thing to experience. But the only way I’ve been able to survive, and not be curled up in the fetal position on the floor, is by the strength God has given me, and I know that I know it’s because of the prayer support YOU are providing.

All the emails and comments are so uplifting and give us a taste of home and family when we’re so far away. Thanks to all of you for being there for us.

God bless you all.

Yes…we’re crazy parents.  We went to go see Ella at 3:30am!  Her stats and blood gases continue to be stable (Praise God).  We’re not out of the woods yet though.  This is a 10 mile journey and we’ve only gone a mile.  Thank God for the distance we have traveled safely.   I pray that Ella will continue her current track, giving her the opportunity to heal so she’ll be better prepared for the path ahead.

Be strong my baby girl…be strong.

Baby Jonathan went home to be with Jesus yesterday. What an incredible testimony this boy was and the impact he and his mom had on all who met them. I believe it was no accident that Ella was born early. We wouldn’t have been blessed with getting to know Tracy in person otherwise.

Please pray that God’s grace, mercy, and peace will be upon the entire Mitchell family.