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I mentioned in the last post that the boys had moved in to a new NICU.  This means different nurses, and aside from the same neurologist we will be dealing going forward, a new medical team.

I got the sense that the Sunday nurse didn’t have a full picture of the boys.  She seemed confused that N had ever finished an entire bottle, not realizing the impact of the seizure medication.  I sometimes forget that this medication has had him knocked out for over half of his life.  So if you didn’t seem him “before”…this seems like his norm.

The nurses each take 20 minutes or so to relay information when they change shifts.  Key events, routines, special needs, etc.  There’s generally not time for a complete running history, or a background story.  And somewhere after the weeks of telephone, the result was this new set of nurses didn’t know our boys as well as I would like.

After J and K left on Sunday, I ended up spending most of the afternoon and evening talking with our nurse.  About what has happened since they were born, pre medication, during medication, and what we are working toward now.  But we also talked about the pregnancy, the initial findings, the big Dandy Walker scare, hearing about termination, the second medical team, a little hope, Lissencephaly, lot of fear, and finally, a long waiting game.  I happily relayed that while we were holding our breath, the boys arrived breathing on their own.  And how now that we are dealing with seizures, as well as low tone, feeding delays, suspected future vision issues, and according to the text book…a ticking clock…we still feel these boys are perfect little blessings.

It has become such a familiar story, yet I sometimes don’t recognize my own voice when I tell it.  That can’t possibly be me…sounding strong and unwavering.   Not scared, but proud?  It’s not the same voice that called home in tears multiple times.  Not the same voice that broke down in the doctors offices.  Not the same voice that sobbed a prayer in the outpatient parking garage.

The story hasn’t changed.

So why have I?

I keep thinking of praise song version of “It Is Well”.  Make no mistake…this is not exactly “well” with my soul.  I did not choose this for my boys, and I still hope they are able to overcome.  Sometimes I am angry.  Sometimes I am sad.  Sometimes I am both.  But even then…I am ok.

I am held.  Even in this storm.

“Don’t worry about anything; instead, pray about everything. Tell God what you need and thank Him for all that He has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.” Philippians 4:6-7

“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.”  Romans 15:13

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