Beyond Words

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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15 thoughts on “Beyond Words

  1. Thanks for sharing the details with us. We have been thinking about you day and night and hoping for the best. We love you all so incredibly much. xoxo

  2. We continue to pray for your family. Little Remy knows she has parents that love her. She is so strong. Thank you for keeping us updated. I can’t wait to read that Remy is going home (we know it will be some time from now). Lots of love and prayers your way.

  3. Having read you updates I feel as if I know Remy a fraction, I felt a moment of panic when I started to read. Remy is a brave little girl with an immense spirit and she has the bravest parents who have a strength that is indescribable. Never doubt that both of you have reserves to deal with this because you do! I teach nurses how to care for premmies here in england and I will encourage them to read Remys story so that they can appreciate a families journey during this stressful time
    Keeping everything crossed for you
    Lesley
    X

  4. Pete and Mary your little girl is a fighter – it’s amazing how strong she is for someone so tiny. I continue to pray for you all. Sending big hugs and love.

  5. During the past weeks you have been through a million emotions from sorrow to euphoria to despair and always a parent’s love. Moments of concern quickly change to happiness and then the elevator drops to sorrow. Remy is such a fighter! God chose two special people to bring her into this world. We can’t imagine or understand why such an innocent baby must struggle just to survive but she has touched so many hearts. I pray for her and both you and Mary. Never stop believing,hoping and praying. We are all hoping for the day when she is out of danger and on her way to enjoying the best life has to offer. Know you are not alone. If it takes a village you have a legion of people wishing you all well.

  6. My heart just breaks each time I read one of your posts.Your little angle is a true fighter.I have been praying for all of you.I will continue you to ask God to give you strength as parents and to give Remy the strengh to keep fighting and get her strong.You are amazing parents!There is no love like a parents love for their child.One day you will have an amazing story to tell your precious little Remy.God Bless all of you.Love and Prayers, Mindy

  7. I am beyond words and my heart is hurting for the constant trauma that all of you are going thru. Never have I heard of a child fighting so hard to stay though I am sure there have been many) with her parents and the people who love her so.
    I have prayed so hard and “made bargains” with God so that little Remy may
    have the chance to have a rich and fulfilling life that she so richly deserves.
    After all these bloggings you must know that there are many who love your little girl even though they have never met her or held her, Still shes in our hearts and all of us so desperately want her to get well.
    I hope you can” feel us ” around you and praying and urging you on with all our hopes for Remy to stay with us.

    Jo Shewbridge

  8. Mary, I Have never met you, but George has told me alot about you and your husband. I have been keeping up with the progress of Remy through this wonderful thing her daddy is doing for her and for the people praying for her. Always, remember there is a God and we all are praying everyday for you, and Remy for God to lift all of you up and keep you strong to get through all of this. Please keep your strength up and remember there are alot of people here thinking of you!
    George & Rebecca Turnbull

  9. The three of you are in my heart and prayers. I know I am one of many who are sharing your journey. I want you to know how much you three have taught me what love and courage and strength looks like right now in the world. Blessings and all good fortune just rain down on your heads. Amen

  10. Mary and Peter,

    Mike and I read this last post with our hearts in our throats. Even though we are parents and grandparents is it hard to famish what you are going through each day. Our prayers, good thoughts and love are with you everyday.

    Paula

  11. Words just dont seem like enough, my heart aches for your sorrow and leaps with your joy, you have such a huge support group and Remy is fighting for all of you as well. Keep up what ur doing and know that in time she will be at home in your arms, and before you know it you will be chasing her around wondering where the time went. So much love light and prayers, xoxo

  12. Keep up your spirits, this little bundle of joy and strength is so determined to live out a long full healthy life with two amazing parents and a world of family!

  13. Pete, Mary,
    We continue to pray for little Remy and your family, you guys are constantly in our thoughts. It breaks our hearts knowing what you guys are going through, we have never seen such strength from such a tiny person, Remy is a strong little girl and she will overcome these obstacles. We are looking forward to hearing that Remy is improving.

  14. for some reason I got into this post……………Want very much to know how Remy is doing now………………
    9 months down the road…………love and prayers to the family

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