A long day. We met with a number of doctors during the day to discuss Erin's condition. In addition, another echo cardiogram and chest x-ray was ordered to check how she was doing. The doctors were trying to rule out congestive heart failure. I can't even begin to describe how it feels to hear the doctor tell you that they want these tests to see if your newborn daughter is experiencing congestive heart failure. Luckily, the test results proved that she is not experiencing heart failure.
Her oxygen was kept at 35% (normal atmosphere is 21%), so she is getting very little supplemental oxygen at this point. She is still on high flow, which means they are forcing the air which helps to keep the airways open. It is unclear as to the impact this has on her.
In addition, the drug that helps the left side of her heart pump was eliminated, as it was felt that this drug might actually be causing her problems. Her blood is shunting from the right ventricle to the left, causing it to bypass the lungs and not be oxygenated. It was felt that the drug she was on (sorry, I am not at the hospital and can't remember the name) was exacerbating that reaction.
The main concern is that in spite of the increased med's, Erin is no longer improving, and has actually regressed. As neonatologist Robin Steinhorn described it, we are living on a sea of eggshells. The plan now is to see how Erin does through the balance of this week, and if she has not improved by Friday, she will be presented to the cardiac surgery council on Monday for open discussion.
Erin was really good today. She was awake a fair amount, and seemed to be having fun. She continues to eat like a champ, and when she sleeps, it is a very sound and deep sleep. Just before I put her down, Erin ended the night with another sneak attack and spit up all over my chest. At least she is thinking strategically.
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