Ella had an okay day. I think she was better yesterday.

Overnight, she seemed more comfortable. Although I still was up several times, it was a little easier. When I would get up to attend to her, she was easy to console whereas the prior weeks has been lots of fussy behavior.

Her blood pressures were low intermittently and became really low in the afternoon and into the evening. They think it is due to the increased dose of Captopril that started last night. The nurses will definitely be monitoring her blood pressure closely. They might even need to adjust her Captopril dose overnight, since her latest blood pressure was 65/33.

They increased her formula to 24k/cal of EleCare (pre-digested food). She has been on a continuous feed at a rate of 30cc/hour. So far, she seems to be tolerating it just fine. We will see how she does overnight.

Besides food, there were no med changes today. They are just monitoring her clinically to see the effects of the increased captopril and watching her fluid status.

We think she is still wet, mostly based on her increased secretions and oxygen requirement of 1.5 liters. I just have that “mom sense” that she is slowly creeping in the wrong direction. I’m hoping that I’m not right.

We feel like she would be requiring less oxygen if she became more dry. There is debate among the docs as far as whether or not we should wait and see with the diuretic or give her a dose of Bumex. We will be discussing it during rounds tomorrow morning.

If everything stays on track and she continues to improve each day, they are thinking that discharge could be later next week.

In the meantime, we pray for Ella’s health and comfort. She is such a good baby. It is sometimes hard to reflect back and think about how much she has been through in her short 14 months of life. Our heart’s desire is to get her to a place whereby she can remain stable and we can float through the holiday season. We would really love to enjoy them with Ella in our home.

We praise Him for our nanny. We pray for her and her important role in Ella’s life, that she would continue to be a witness of your love.

This Psalm just stood out to me this morning. Many times we can feel forgotten and wrestle with thoughts about God and His intention for the circumstances in our lives. We can feel like things own us and can triumph over us. But at the end, we know that He has a plan and purpose.

Psalm 13
How long, LORD? Will you forget me forever?
How long will you hide your face from me?

I will sing the LORD’s praise,
for he has been good to me.