It was a long day in Grand Junction. Early this morning Delaney had her heart exam (related to her higher blood pressure) but we have not heard the final word on the results. Hopefully tomorrow we'll learn more. We had a lot of chores to do, and then at 1:00 we had our first "IFSP" meeting. This is the Individual Family Service Plan that is created between us, the NICU doctors, Occupational Therapists, and early intervention specialists. It's basically putting together a game plan for what needs to happen before and after we go home. Based on how things are going we still have a long road ahead of us but it was nice to talk about the idea of going home some day. Delaney still has to master nipple feeding and has an array of tests ahead of her including more eye exams, a head ultrasound, and hearing tests.One of the nurse practitioners warned Jennifer early on that the nipple feeding phase would be one of the most challenging of our NICU stay--she was spot on. Already there has been way too much drama, confusion, misunderstanding, and tears (yes, tears). In some ways it's like a silly little soap opera that we really want no part of. Hopefully it smooths over, which we hope it will after all of our discussions today.
Everything is going to be fine and pretty soon you'll look back on your soap opera as a saga that you dealt with exceptionally well. We all admire you and are proud to be your friends. Hang in there!
ReplyDeleteI remember clearly the tears I shed during this phase. And then one day, something clicks. And it comes together.
ReplyDeleteYou know Delaney better than anyone else in this world, Brandon and Jennifer. Trust your instincts. Delaney will let you know what she can do and when she can do it.
You have all been so loving and so patient for these past months. The final reward is SO TOTALLY WORTH IT!
Hoping you received good news from the heart tests today. We are pulling for you from CB!
MK