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.