The Saga Continues

Tony and I had the rare chance to go to the NICU together today, something afforded us by my parents watching Jack so we could both get away. When Tony and I walked in, a nurse Harper had seen many times before greeted us and we were given the run down of the night’s events: that Harper had tried a bottle overnight, but didn’t finish the whole thing. The nurse also told us the occupational therapist had come by this morning and Harper finished a whole bottle for her- go Harper! As Tony and I were deciding who would feed Miss Harper and who would change her, the developmental therapist came in. She evaluated Harper and said she looked great, and then the occupational therapist came in and she wanted to discuss Harper’s eating and what she observed. So, here we all stood: the nurse, the developmental therapist, the occupational therapist, and myself watching Tony feed Harper a bottle.

It was a surreal moment for me; I had to pinch myself; was this the same mom who was begging for help for her child just two days ago? We spent twenty minutes watching Harper eat and discussing the course of action to best help our little girl. I loved that the occupational therapist would say things like, “well, you know her best, so what do you think?” I felt like my observations were being heard and taken into account as we moved forward and I reiterated my thought that Harper was anxious about eating and trying to avoid it. Harper’s nurse seemed skeptical until she watched Harper’s respirations rate as she ate. When she lies still, her respirations are somewhere in the 40s, however, when she was eating her respirations got up into the 100s- this, the nurse understood and was concerned about.

So, we made a plan to only offer Harper a bottle when she is “cueing” and seems highly motivated to try and eat and to stop the feeding if she shows signs of distress (hiccups, fake yawning, turning her head to avoid the bottle, pushing away, etc.). The occupational therapist is determined to make sure she does not have long term food avoidance based on short term problems- something I stand behind.

So, with the plan made, Tony passed Harper to me to be held while she had the rest of her bottle fed to her through her Gavage tube. I paid close attention to Harper as I held her and talked to her and I noticed that even with the Gavage tube, she would turn her head to look away and fake yawn- avoidance techniques that I’d seen her do before, but didn’t know why. I also noticed that while lying with me in a totally calm environment, with food being slowly fed into her tummy, requiring no work from her at all, her respirations got into the 100s! This was startling to me. I started to pay attention to what might trigger that and I noticed that right before her respirations would jump up, she would arch her back, or have a wet burp, or make this “chewing” motion- all signs of reflux.

So, my new theory is that Harper is anxious about eating because she’s realized that eating is what causes her to have reflux, a feeling that she does not like. So, to avoid the reflux, she just avoids eating. I know Jack has reflux as well- we can hear his stomach gurgle and the milk come back up when he burps. So, my current project is looking for ways to help alleviate the reflux for both of my kiddos.

The new estimate on Harper’s homecoming is not immediately promising. The occupational therapist is going to reevaluate her eating in a week- we were hoping she would be home by this time next week. The therapist also said they don’t worry about babies who do not eat until they’re 42 or 43 weeks- this statement didn’t give me much hope that Harper would be home in time for her March 6^th due date. So, now we wait and trust in God’s timing and work with Harper, but try not to push her too much. I guess this NICU experience is parenting trial by fire-I hope we pass the test.