I sat on the edge of Ella's bed; the room illuminated only by the light of her bipap machine. I just finished hooking up her feeding tube and started the overnight continuous feed. As per usual Ella took my hand and "charged". We sat in silence. I pressed a button on the feeding pump to see how much has entered her body and double check the rate...10ml had gone in at a rate of 50ml per hour...perfect. Then I noticed it. The battery-life indicator was on yet the pump was plugged in. I looked at the adapter on the outlet end and the little green light was not on...I adjusted some things...no luck. I called Lindsay. We adjusted some more but had no luck. Ella watched us gleefully. We ended up calling the Home Health Care...they didn't have an extra adapter available until the next day and advised we use the "gravity-bag". We tried. It didn't work. We ended up doing manual feeds with a syringe throughout the night. And so it goes.
Ella's cough has returned. With it came another vomiting episode after her afternoon feed...sparked on by a cough that caused her to gag and let loose. We'll try one pump feed in the morning and see what happens; if she doesn't hold it then we have to go back to manual syringe feeds every hour.
While the feeding can be cumbersome it's the cough that concerns us most. Often times when a cough is over and then followed a few days later by another one the second round can be worse. The longer Ella fights a cough the weaker she gets. The weaker she gets the more vulnerable she becomes.
We continue to do her therapies which include chest compressions with the vest, cough assist with the machine, and suction afterwards. We encourage her to cough on her own. We do the best we can.
In light of recent events of the world we cling even more tightly to our children. We know that life is fragile, unpredictable, and sometimes fleeting. We take heart in looking deeply into the essence of our children and seeing them for who they are. We've learned to take every moment as it comes and to be grateful for those moments. We encourage, we teach, we raise our babies as our parents did; with love and respect.
