Without question of any post I have previously written, this one carries more emotion than ever before. I will usually sit on my laptop and try to convey some experience, some diagnoses, some surrounding and mix it all together. I want you as friends, family, and followers to understand what we are experiencing. What Remy’s status is. I try to paint a picture of what it is like in here and what it is like when I am not here.  I want you to connect. I want this to be a chronicle that I can go back and show to Remy when she is older, something to reflect in a time in her life when it seems fit. I want this to be a resource for those who may be going through similar situations and need to relate. I often go in ready to write about one thing and end up writing something different and if you read the blog you know my posts can become very long.  I don’t think I possess the ability to convey exactly what Mary and I went through this past Thursday. It was the most frightening moment in my 38 years. On Thursday, both Mary and stood by as we watched our little Remy almost leave us!

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The space above represents emptiness.  That was the strongest feeling that was felt.  It began with an attempt to transfer Remy from her oscillator to a gentler machine known as the ‘Jet’. It started with just three personnel and ended with a huddle of about 15 to 20.  The tone was one of the utmost concern, panic and fear! There was screaming, crying, falling to the floor, panic!  Our Remy was seconds away from never breathing another breath again. Everything around us became blurry. We honed in on the possibility  of our child struggling to survive and it was as if we had entered into another dimension.  Our hearts stopped. We could feel our bodily functions like we never have before. We were helpless. I mean HELPLESS! It is was our absolute WORST nightmare coming to fruition in front of our very eyes, except we were awake, the kind of awake you never want to be!

During this moment we  truly realized as much as we thought  we knew what love is, as much we thought we could describe love, we never even had a clue how strong our love was until that love was being TAKEN AWAY FROM US!  Remy…………..our girl, our little lady, our bugaboo, our sunshine, our LIFE within us, WAS NOT READY FOR THIS.

Following this event we were told by many doctors and personnel at the NICU that we should enjoy every moment we have with her, that we should be prepared for the worst, that there are so many horrific possibilities in our’s and Remy’s future, both long and short-term.  We have heard similar things from the staff before.  This was different.   The tone was blunt and so serious.   The expectations are so questionable. It is now Sunday morning and Remy still has major leaps she must make and the situation is still very critical and more real than ever.

Remy’s response in the 12 hours following this heart-wrenching, and aging event was nothing less than miraculous! She made overnight progress that was simply astounding! This is not just from a parent’s perspective, but from those on the staff caring for her day and night. For the next 60 or so hours up to now she has been very non responsive, except for random movement and hand holding, which melts our hearts.   She is currently in a holding pattern, but also gradually heading in the wrong direction. There is immense concern for her in so many areas of her health.  In this post I don’t  have the energy to explain all of the medications, attempts to help her gain strength, and symptoms she is dealing with.

Our baby girl has shown unthinkable strength.  She is not ready to give up on us and herself. She has a great amount of healing to do to recover from her recent surgery while also having to recover from preexisting conditions and battle the unpredictable day to-day hurdles she faces. It do not have the option,  but I would endure a lifetime of torture and solidarity to see my baby get healthy and live a long happy life!  Our spirits have been tested more than ever before over the past four days.  While our baby’s health is the biggest concern of all our psychological status is unpredictable.   We know that we are parents.  We know that we must continue as any other parent and maintain our strength and dig as deep as humanly possible.  We advocate when we see fit and try to influence as we see fit and let the experts do what they must and continue to talk and touch our little angel everyday.

Day by day, hour by hour, minute by minute!

The picture below represents strength that starts from the roots.  Our Remy has strong roots that date back to her ancestors.   We want to see her flourish and grow into her own wonderful ‘self’!

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