Fighting for Dear Life!

I know that many of you have been anxious to hear of Remy’s results since Sundays post.  This has been a difficult week for me to be able to update.  Between more long work days and spending days and nights at the hospital in between and the stress of Remy’s worsening condition it has been very difficult to even think about blogging, let alone do it.   Remy has faced so much throughout her three months already.  The  past 10 days have been challenging and treacherous for her.   She has and has had multiple organ failure.   Her dysfunctional kidneys have not allowed her to pee.   Her blood vessels still are unable to retain fluids.   She has grown immensely and is filled with so much fluid that it has caused bruising and discoloration of her skin throughout her body.  Her lungs were severely compromised.  Her heart has been affected.   She looks plagued and physically beaten.   Blood clots all over her skin, (which has little room to expand any more) legions all over her.  Her face is so swollen it appears as if she has three eyes. Metabolically and  physically sicker than she has ever been before.  Some doctors here have never seen a baby as puzzling and sick as Remy is. They have also never seen a baby as sick show such fight!

We have lived each day not knowing if she would be with us the following day.  To go through that is beyond explanation.   We have been tested, broken, destroyed, dehumanized, filled with rage and anguish.  We have been counseled and cared for by so many here at the NICU.   We spend as much time as humanly possible talking, touching, kissing and singing to our little miracle child!  Our brilliant, mind-blowing staff here has shared our ups and downs and continues to challenge themselves.  We have held several meetings each day.  We work with them by the hour trying to hear Remy speak to us, and figure out what she needs.  While we are no scientist or medical authorities of any sort, we have learned so much about our baby’s needs and responses.

Emergency surgery this afternoon, which very likely could have ended her life, has given us a small glimmer of hope.   She is too sick to move, so it had to be at her bedside.  It has helped her breath better, and alleviated a stressed lung and her heart.   Our Remy is by medical standards still extremely critical and the odds are very much against her ever coming home with us.  We understand what we and Remy are facing each and every day we are here.  For now though we continue to focus on trying to save her.   She is miraculous.  She is miraculous!  She is miraculous!

We are grateful to all of our family; blood relatives,  NICU staff,  friends and followers, donating blood,  bringing us food,  sending us love and praying for us, whatever it is you have done!   I cannot promise that I will have another update anytime soon as it is growing more difficult to post.  What I can promise is that Mary and I, along with her great medical staff will be here every day by Remy’s side, working hard and fighting, doing everything within our power to make Remys life story last longer than ours!

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16 thoughts on “Fighting for Dear Life!

  1. I don’t even know what to say other then I love you guys, I love Remy – I pray constantly and wish for a miracle. Stay strong – take care of yourselves and if there is anything, anything I can do – please don’t hesitate to ask.

  2. Dear Pete and Mary and Remy, We are praying for you and sending all of our love. What a beautiful spirit! Hang in and know we are behind you sending strength! LOVE! PEACE! and hugs!

  3. Pete, Mary & Baby Remy,

    We think about you often and pray for Remy’s health every day. The love you express for baby Remy in these blogs are beyond words. You are amazing parents!!! May you continue to have the necessary strength during this challenging time.
    Thank you for sharing your story with us.

    All our love,
    Millie & Glenn

  4. My heart is breaking for your little family. Tears are streaming down my face as I read your update. Suddenly I realize that my heart has broken…open. My heart has grown several sizes as I have taken in yours and Remy’s suffering. How mysterious how we all grow and teach each in such miraculous ways! My gratitude is overflowing for your little angel and for yours and Mary’s strenghth. I am praying for the best possible outcome for the three of you. Much love from me to you. Mary Cullen

  5. There are no words – only overwhelming love and concern for you all.Continued prayers for Remy and both of you.

  6. I am a stranger to you, but I want you to know that my prayers and most heartfelt positive energy are offered up for Remy and her family. Her strength (and yours) is inspiring.

  7. God Bless all of you as little Remy fights for her life. Remy is blessed to have wonderful parents that she has. My thoughts and prayers will continue. My heart aches for all of you. We don’t know how blessed we are until we see what your little precious one is going through. Keep fighting Remy!

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