Ella Bun had a stable day as she hung out with Nurse Marla.
 
When Grandma and I arrived, she was a bit fussy. I think she was over-tired. She wanted to be held and rocked to sleep, although it took several tries before figuring that out! Once we were in the rocking chair with just the right rhythm and position (and of course you must have the binky), she finally settled in and took a nice cat nap in my arms.
 
Her fentanyl was dropped a bit as of 10pm tonight. There are probably 2 more scheduled weans before she is completely off the pain medication. She is still at a CPAP pressure of 5 at 45% oxygen. The plan is to drop the CPAP every 2-3 days that she remains stable, all the way down to a pressure of 3. This will probably take another week or so. From there, we will see if she can handle the nose cannula.
 
Grandma is leaving tomorrow, so tonight was her last time visiting with Ella until she is out of the hospital. She will certainly miss having Grandma talk and sing to her!
 
Nurse Marla stated that she thinks that Ella is making great progress since her nissen surgery — that she looks the best that she has ever seen her.
 
A new nurse has Ella tonight – – so it made it that much tougher to leave. I am hoping that Ella sleeps through the night just like she has done the past 3 nights.
 
Par is struggling a bit with his eating (lack of a desire to eat). Please pray that he would begin to be interested in eating and that he would not encounter any further struggles. Jonathan has been making small steps forward since his repair surgery, although being on ECMO is holding up the process. Please pray that he can make the continued progress in the next couple of days, so that Dr. Kays can take him off ECMO.
 
Ella’s lungs still need to continue to strengthen, so we pray that the Lord would continue His healing. It would be a great holiday gift for Ella to be strong enough to no longer require CPAP. As we have already experienced, we need to trust in His timing.
 
I started to research the doctors in Denver that can help us take care of Ella on an ongoing basis. As you know, Ella’s care is not straight-forward and we need to find a network of doctors for her care. I am not comfortable making the trip back home unless we have a network of doctors in place. I want to know there is someone to call, as we make our way towards our front door. We will be coming back to see Dr. Kays annually, but our intial search is for a pediatrician and a pulmonary specialist.
 
We want His best for Ella Renae. Please pray specifically wisdom, guidance and discernment. Ask for the Lord to help us listen and hear His still small voice.
 
Proverbs 16:3
Commit to the LORD whatever you do,
and your plans will succeed.