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Five Weeks and a Day - A NICU Story - Day 30

Day 30 - September 12, 2014

I am visiting LoLa on Friday afternoon after work. Normally, I would run home first and let the dogs out, but tonight we are heading down the shore. Sean signed up for the Dewey Beach Sprint Triathlon in the spring and when LoLa arrived the race and all its preparation shuffled way down to the bottom of the priority list. In fact, it almost fell off the list completely. We agonized over whether to go. Maybe Sean would go and race by himself and I would stay behind. But I worried about being far away in case of an emergency. But then… what if there was an emergency with LoLa? We are really torn about what is right to do. But we decide it is important to have this small bit of normalcy. To follow through with something we had planned, even if it doesn’t go exactly as we’d planned.

Her words crush any confidence I had in the decision we made...

We plan to leave for the shore after I visit with LoLa tonight (Sean has already visited today), and return immediately after the race, so we can be home to visit tomorrow afternoon with LoLa. We are pretty emotional about this decision. So when our nurse remarks, “You know, I wouldn’t blame you if you didn’t go to the shore,” I think it’s all I can do to keep my mouth shut. Her words crush any confidence I had in the decision we made to go. She has no idea that she’s just undone any acceptance I had almost assembled to leave my child, even though I know she is safe, stable, and her needs will be met, and that I won’t be going a day without seeing her.

I am so inside my head about this as I finish feeding LoLa, burp her and hold her on my chest. But she fusses, so I reposition her, but it doesn’t help. So I return her to a position in which she has spent almost all of her time thus far when she’s not been in someone’s arms: on her belly in the crib. I go about my business, pumping at her bedside, when Nurse Bigmouth comes over and says (air quotes) to LoLa… “What are you doing on your belly? You’re supposed to be on your back!”

I ask what is wrong with her being on her belly?

“To sleep?” She blinks at me with her head cocked, “She is supposed to be on her back to sleep.”

I ask what the problem is, considering she is monitored and she seems to digest better in prone.

The nurse replies, “She’s had no trouble digesting her food all day.” And with that, flips LoLa over and walks away.

LoLa wakes up from a sound sleep and starts fussing again, kicking her legs, undoing her swaddle. Now she’s cold, so she starts crying. I am hooked up to the pump, so now that the nurse has left, I have to release myself from the pump, rewrap LoLa and try to get her settled again, restraining myself from returning her to a prone position.

We leave for the shore later that evening, and I call to check in at 2:30 am. The night nurse informs me LoLa’s feeding tube has been pulled again. She’s very excited about this, and is probably wondering why I am not. I inform her briefly about how things went last time the tube was pulled, and expressed my feelings of concern and worry. The nurse says she completely understands, but explains that sometimes the feeding tube can irritate the baby’s throat once their oral feeding ability is getting stronger, and lead to increased gagging and regurgitation. I understand but still feel very anxious. Between Sean feeling some pre-race jitters and my nervousness about leaving and the feeding tube removal, it is a fretful night’s sleep for both of us.

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