Three Steps Forward, Two Steps Back

image This is my life right now. The cart keeps going in the right direction, but the path to our eventual destination has a lot of loops in it that add to the overall length of the NICU ride. Our baby seems to have this pattern of doing great for a few days, and then she kind of collapses and needs extra care. From the beginning the great NICU staff has told us that the path of development for preemies is that of a roller coaster. This has been so true for our baby: on feeds, off feeds, on feeds; decrease respiratory support, increase respiratory support. Today we experienced yet another setback. She had been doing so well on her nasal cannula all week. Today she tanked and had a difficult time coming back up from desaturation dips all the way in the 50% spo2 range. So, we’re back on the high-flow cannula at 2L. I can’t really describe the feeling that accompanies these set backs. It’s not frustration. It’s not disillusionment. I feel sad for Abigail. The amount of discomfort she has to go through when these ‘belly bloat’ scares and respiratory set backs happen is unreal. The stickers on her face are like super band-aids, and they are unpleasant to remove and switch out. This must be done every time they switch between the high-flow and the plain ol’ nasal cannula. It stresses her out – her heart rate climbs past 220 when they do that procedure, and she grimaces and cries. It breaks my heart. I can only imagine how uncomfortable ripping bandages off your face constantly would be. I know she’s growing and getting stronger. I can look back and see her overall changes. It’s just tough. I’m sure the baby roller coaster will go on the incline again, resulting in overall progress. But dang – these dips and loops are so scary.

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One Comment Add yours

  1. Aunt Bea says:

    I’m sure its frustrating and can’t imagine the road you’ve been traveling these last several weeks. Look forward to hearing about her rebound soon. Keep encouraged hon. We’re praying for you three.

    Like

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