Aiden and Evan - 8/25

The boys turned one month old today!

Aiden continues to recover nicely from his PDA operation. They took him back off of the oscillating ventilator this morning and he has continued to make progress on his ventilation support needs. Dr. Michaels said they might try to wean him back to a nasal CPAP in the next couple of days if he continues to do well. In addition, Aiden should start back on his feedings tomorrow. Aiden has been fairly sedated the last several days so he does not move around as much as he previously was. Hopefully he is not feeling any pain from his surgery.

Evan has also been stable the last couple of days. They have been able to wean his ventilator settings some more and he seems to do well with oxygen levels in the mid 30’s. The biggest need for Evan is to grow. His weight growth has been down or flat the last several days, mostly due to the steroids which act as a diuretic. To help replace the lost fluid they have increased his feed amount up to 24ml every three hours and are going to increase the caloric density to get as much growth in as possible. Today his skin has started to look a bit pale and we (and the doctor) are not quite sure what to make of it. It may be nothing but to be sure they have drawn a little blood and are going to make sure there is not any sickness setting in. Hopefully it is nothing.

Janel got to hold Evan yesterday for the first time in several weeks. He lasted about 40 minutes and then had a hard apnea spell. Both boys will occasionally have spells where their oxygen saturation level and heart rate drops down. Usually it does not last more than a few seconds and the boys recover on their own. However occasionally they fall hard. The monitors start dinging and flashing and the nurses rush over and huddle over them, poking and rubbing – trying to find a position that improves breathing. When it’s really bad they have to remove the ventilation machine and manually vent using an air bag. It’s all quite a rush and the first time you watch incredibly scary. After a few times of seeing this you learn to filter the excitement of it and prevent yourself from getting too alarmed. But there is always a fear in the back of your mind and you can’t help feeling a little bit of desperation hoping everything will be okay.