Surrender & Hope
Well I always thought I'd be an avid blogger "when I just had a good reason & time" but I'm proving to be more inconsistent than I'd like...so, thanks for everyone's patience. Ultimately, when we gain perspective in where we are and Cora is, an update makes sense.
She has continued to make slow but steady progress even as we've watched most of her neighbors get discharged and despite the aforementioned challenges we face. Conversely, we've seen other babies in the NICU face surgical procedures, transfusions, infections etc...and we know that even with the struggles we have and still face, we're very blessed. Her weight gain has pretty quickly progressed now, hitting 5# by Easter & now up to 5.5#! This all helps her gain strength and muscle mass that will hopefully improve her deficits. Huge answer to prayer- we have seen evidence of a gag reflex! The doctor's seemed fairly certain that this was absent not depressed, with small chance of development and yet she has shown evidence of this since our last update! It is weak and intermittent but still, real progress. She still doesn't yet show swallowing ability which keeps her on continuous tube feeding. New medicine additions have allowed her to have less blockage of her throat from saliva/reflux and she's been able to go from a high flow oxygen down to low flow- the kind you might see on narrow tubing and prongs in an ER room. It's low enough now to be able to go home on when it cones tie for that. She is still very weak and "behind" her expected progress but has continued to show improved alertness, turning, cry etc.
Colin and I have continued to pray for the strength to face whatever outcome God has in store for our daughter. She was a surprise to us from her conception and yet nothing about this has surprised God. We've been afraid, felt inadequate for the future, been angry at Him, imagined the worst, & been afraid to imagine the best. We've gained so much perspective for others dealing with sorrow & uncertainty especially that of a child, and realize no one can ever tell a parent how they should feel or deal with their child's needs in a situation like this (though it doesn't mean one won't try). Nevertheless, we're surrounded by the love and support of our church family & family near & far, enabling us to take breaks, not worry about cooking, visit the NICU daily, and still get quality time with our other kiddos.
Our late summer move looms and even as we begin preparing for it we know we might have to adjust. One week at a time.
John 10 says : "...he who enters by the door is a shepherd of the sheep. 3 To him the doorkeeper opens, and the sheep hear his voice, and he calls his own sheep by name and leads them out. 4 When he brings all his own out, he goes ahead of them, and the sheep follow him because they know his voice. 5 A stranger they will never follow, but will flee from him, because they do not know the voice of strangers...7 So Jesus said to them again... 'I am the door; if anyone enters through Me, he will be saved, and will go in and out and find pasture. 10 The thief comes only to steal and kill and destroy; I came that they may have life, and [a]have it abundantly.' " ... from it we've asked the questions : Will we hear His voice among all the voices in our head of fear, doubt, grief, selfishness...and follow it even into the deep dark wood where the Shepard may lead? Will we accept that the "pasture" He gives is the only one worth having?
new clothes from Auntie Sia
Easter with the family at our Cross & Crown home. He is Risen!
Laurel checking out the cable integrity
4/28 down to low flow oxygen!
wide awake
much needed hike at Palmer Park
sunny park days
Prayers:
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