Ella’s day has been stable. Her blood gas at noon was cO2=51, pO2=57. Her blood gas this evening at 8pm was cO2=61, pO2=72.

Dr. Kays went ahead and made a few changes today. He increased her feedings to 4ccs of Portagen per hour on continuous feed. It is a really good sign that she is handling the formula.

Along with the increased food, they changed the tube that they use to feed Ella. When they started her feedings, they used a tube going through her mouth into her stomach. However with the most recent increases in food, sometimes the stomach can swell/expand and this is a concern with creating too much pressure on the patch in the diaphragm area.

So, they switched the tube today. They inserted one through her nose and connected it to her pyloric valve. This is where the food passes from the stomach into the small intestine. By feeding Ella in this way, we will still get the benefit of priming her intestines for food without swelling her stomach and creating risk for her diaphragm.

Also, they started Ella on a medicine called Reglan. Reglan increases the rate at which the stomach and intestines move during digestion. It also increases the rate at which the stomach empties into the intestines and increases the strength of the lower esophageal sphincter (the muscle between the stomach and esophagus).

Ella’s overall chest output at 10pm tonight was 5ccs for the left tube and 37 for the right, for a total of 42ccs for the day so far. This is a bit slower than the prior 2 days. We are hoping this is good news!

Dr. Kays mentioned that her morning chest x-ray looked about the same as yesterday morning (not a great chest x-ray). To switch a variable, he decided to lower her octreotide medicine to 5ml/day. This past week, he has weened her from 10ml to 7ml to 5ml per day. He wants to see how that impacts her chest x-rays, blood gases and overall chest fluid output.

Another goal is for him to remove the lines in her neck (where they put the cannulas for ECMO and did the SVC procedure). This is at high risk for infection since her neck can get moist easily from sweat, along with the duration of time it has been there (8 weeks).

Currently, they use this line in the neck to give Ella the octreotide medicine. She has so many lines going into her with various meds, but apparently the octreotide is not compatible with her other medicines, so they have to give it to her via the line in her neck. This is another reason why Dr. Kays wants to see if he can ween her off octreotide – – he wants to remove that line!

When we visited her tonight, we looked her chart and noted that they had also reduced the pressure on the ventilator from 16 to 12. That is a good step in the right direction.

She was maintaining saturations of 97 when we were at the hospital late tonight; higher than they had been throughout the day. The nurse and respiratory therapist stated that they had a challenge getting her settled between 8am -9pm. So the nurse placed a blanket across her face to make sure that Ella was less disturbed from light and noise. When it was picture time, we didn’t want to wake her either since she seemed sound asleep. So, we just lifted the blanket ever so slightly to snap a photo.

We are praying for chest fluid reduction. We have heard from countless nurses that many babies simply will have an immediate turn around at some point, without real explanation. Their bodies will simply resolve the issue. Of course, we would love for that to happen with Ella.

If we can’t get the overnight fix, we just need Ella to make slight minor improvements each day: a slightly better x-ray or a tiny bit better blood gas or more urine output or being able to tolerate small adjustments to the ventilator. Just small baby steps forward, ever so slightly. As long as she is making some sort of progress in the right direction, Dr. Kays will not recommend surgery.

Thanks for your thoughts and prayers as we continue this journey.