“Sometimes I feel sorry for you preemie parents… It seems like these babies take two steps forward and then one or two back.” I remember that confession from a NICU nurse as if she said it an hour ago. At the time, I was crying in front of Charlie’s isolette. The evening before, I had left the NICU hopeful. Charlie had her picc line removed and her PEEP level was lowered. I returned the next morning to find her lying under the bili lights (again) and a sign posted on her isolette read “Please, handle me with care.” The labs from a couple hours earlier indicated her need for the return of the bili lights (hyperbilirubinemia) and her bones had become soft and brittle ( osteopenia of prematurity). The whole thing was a dance that I had allowed myself to forget. I made the mistake of believing it was limited to the NICU.
Today, Charlie has shown me otherwise.
I have written about Charlie’s oral aversion, problems swallowing, protein allergies, and feeding therapies. She has made impressive progress since starting feeding therapy. I have recently been encouraged by all the feeding exercises she has been able to master. I thought she would be eating more food and less formula in a very short time. That was until this morning. Starting with her morning bottle, she blind sided me. She refused her bottle and every bottle afterwards.
I was confused. Initially, I did not worry because she had a feeding therapy appointment scheduled. I was sure her therapist could get a handle on the situation. However, her therapist was not sure what was happening. It did not make sense. Charlie voraciously ate the baby food she was offered until she no longer could (ten spoonfuls). She was hungry. Why won’t she take her bottle? She drank pedialyte from a sippy cup (with the therapist holding it). She was thirsty as well. I tried her formula in her sippy cup. She refused. She wanted (and still wants) nothing to do with her bottle.
I’m baffled by the answer to this problem. I thought it could have been a teething thing and administered ibuprofen. She would not take a drop of formula nor look at her bottle. Her pediatrician suggested that I see if things continue over night. If so (she refused until bedtime), then we will discuss options tomorrow. I am clueless as to what someone who can not eat solids consumes if formula is refused.
Discouraged (and scared to death of another return to the hospital), I tucked Charlie in tonight. The fear, frustration, helplessness, confusion, and dread was exactly the same as the feelimgs that I experienced that morning I found Charlie back under the bili lights. I sighed as I remembered, “Two steps forward and one or two back…”