Answers

As I drove to the NICU, I readied myself for a fight, if need be, over my daughter’s care. I told my mom that I wanted some answers- I couldn’t understand how her eating would get worse simply because Harper had moved rooms. So I arrived at the NICU with clenched fists, just knowing that I was going to talk to people who didn’t see the big picture with Harper- I was so busy worrying about my hypothetical fight that I missed the big picture myself.

I scrubbed in with a woman I had met before, a lactation consultant that I talked to while I was still in the hospital who was supposed to be “the best”. She chatted me up about the twins and about Jack’s eating since he’s been home. Then she asked the inevitable follow up about Harper and her schedule for going home. I explained that Harper was still trying to learn to eat and the consultant asked if she could come and take a look at Harper while I was there. I shrugged and said, “sure”, craning my neck to see whom Harper’s nurse and, in my mind, my inevitable opponent, would be. Turns out I should’ve worried less about my fight, and more about the consultant.

The lactation consultant came in after the nurse had already mixed up a bottle for me to try with Harper and just as I was trying to wake her up- determined that I would at least offer her said bottle (a step up from yesterday). I explained Harper wouldn’t be breastfeeding, but the consultant asked to evaluate her anyway. This evaluation is the answer I’d been waiting on; I just didn’t know it. 

She spent thirty minutes with me. In those thirty minutes, I learned the following:

-Harper has a very high pallet that needs direct stimulation from the bottle before her sucking reflex will take over

-She thrusts her tongue while she sucks, something that will force the bottle out of her mouth whether she wants to spit it out, or not

-Harper has good, strong jaw muscles and a strong suck when she feels the bottle high enough in her mouth

-I learned a new position to hold her to maximize her comfort and minimize the thrust

-Harper also has some anxiety about eating (something I noticed and had told everyone- her nurses who would listen, the nurse practitioners, the occupational therapists, etc.) Harper gets hiccups each time we try to feed her; that’s an anxiety response in preemies

- I learned how to set a calming environment for Harper before eating and to stop when it becomes too much for her instead of trying to force her to finish and scare her

-I also learned the root of Harper’s anxiety- something I’d bee trying to get to the bottom of- she has still not mastered the idea of “suck, swallow, breathe” so eating a bottle is difficult for her brain that’s not quite organized yet.  Meaning, when Harper eats from her bottle, she holds her breath like she’s going under water, and then sucks a few times. When she stops sucking, she has to pant to try and catch her breath- it is very taxing on her body.

The thought of having to chose between eating and breathing was enough for me to realize that is why Harper is not home yet. It’s not that she can’t eat, or won’t eat, it’s that her brain just isn’t mature enough yet to make the connection and I can see the panic on her little face and hear her struggle to catch her breath- proof of what the consultant is saying.

I left Harper’s room today armed with more information to help my daughter than I have ever had. Eating is important, but breathing is more important. This is why Harper is having anxiety hiccups when she eats; someone asking me to hold my breath over and over would make me nervous too. I also felt that someone had finally listened to my concerns and had taken the time to investigate with me instead of dismissing her as a “silly girl who just needs to eat” or saying, “she just wants to stay in the NICU and hang out with us”.

I had prayed the whole way to the hospital for the Lord to give me the words, to use me to help Harper voice her struggle, to fight for her. In the midst of gearing up to fight, I didn’t realize God was slowly providing me answers if I would just be still and listen.

Imagine my delight when Tony sent me this picture tonight. This is Harper’s bottle and Tony’s caption read “I’m trying, Mom. I want to come home.”