9/10 NICU Day 18

To be honest today felt kinda blah to me. I’ve had a hard time processing my feelings. It has not been the hardest day since three weeks ago but it also wasn’t the easiest. 

Olivia is doing great as the PA and NP explained. (We missed rounds this morning). However, she has had several “Brady-desat” events..more than usual. This is when her heart rate drops-typically below 100 or if her oxygen saturation drops below 85. The team plans to remove her PICC line but want to “wait to see if anything is changing”. UGH. Absolutely unsettling. The healthcare provider in me immediately went to…’okay what could be causing these changes what are we doing about them’. As a mom…all I heard was the ‘wait and see’ which rattled me. What also didn’t help was as I was holding her I witnessed a few episodes of her oxygen dipping, and the nurse…somewhat frantically…trying all the things she could to “fix” it. Of note Olivia does not tolerate the oxygen prongs (the respiratory therapist alternates a little face mask vs nasal prongs to help her skin from getting too irritated by the mask) and dips in her oxygenation after eating a meal-both of which took place before I held her. 

It took a lot for me to leave the hospital calm and worry free. My brother did come to visit from Charlotte so that was a nice distraction and fun to see him interact with Olivia. 

When Kevin and I returned to the hospital in the evening, Olivia’s nurse reported that “she did great but did have a lot of episodes”. She said she called the NP to evaluate but that they felt Olivia was doing really well and unchanged. Everything was attributed to after meals and some acid reflux. Although this did make me feel more at ease I still can’t really shake the feeling I have. 

So…bare with my while I name things I am thankful for today-because as I’ve been saying and been encouraged by others- remembering what to be thankful for helps to place things in perspective. 

Olivia is up in weight again today…she’s 1 lb 10.4 ounces. Her heart murmur is very faint and for now they feel they do not need to follow up on it with an ECHO or other treatment/tests. The doctors are stopping her TPN and switching her to just milk with fortifier. I did get to hold my sweet girl for two hours. & Olivia held my finger today-not just dad’s :) !

My sweet friend reminded me of a passage from Isaiah today. I’ve claimed this verse for today and probably will continue to do so over the next several weeks. 

Isaiah 54:10 Though the mountains be shaken and the hills be removed, yet my unfailing love for you will never be shaken, nor my covenant of peace be removed, says the Lord who has compassion on you. 

Praying for healing & continued growth in my sweet girl. Praying for strength. Praying for peace.  

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