Today we experienced what we felt was a step backwards. During rounds, the doctors decided that instead of Veronica trialing off of CPAP once a day for as long as she can tolerate, she will only trial off for her feedings and then be put immediately back on CPAP. The reason for this ts that after trialing off for a record 16 hours yesterday, she apparently was just too tired to take her bottles and ended up taking her feedings by tube. This change in her care was incredibly disappointing to hear. It may have been that we all were expecting too much of her too soon. It's a lot to ask her to take all of feedings by mouth while still trying to breath without any support. So we need to just take it day by day and let Veronica determine the pace.....slow and steady, I guess.
I have heard the phrase NICU roller coaster on more than one occasion. The past two days are a perfect example of that roller coaster. Yesterday I was feeling so hopeful, and thinking that she might even come home sooner than later. Today was a complete turnaround. I felt much like I did three months ago, that we may never get out of the NICU. I tell myself that she is doing well and has come so far but it is still difficult not to feel discouraged on days like today.
Tomorrow is sure to be a better day. We're expecting to hit 6 lbs soon so that will be something to celebrate.
Thanks for all of the support and prayers, and for continuing to walk with us on this journey.
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