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Friday, February 18, 2011

Hope floats........away.

In the last year I have been the parent of a preemie. I then had to transition into being a parent with a child who has a chronic health condition. Now unfortunately I must transition once again into a parent of a child with a terminal illness............

The sheer and utter irony that all of you will be blown away by by what I am about to regale you with may knock you cold on the floor. The utter sadness and devastation you will feel will leave you there lifeless as it has me Chad and Viola.


Last year on February 17th, 2010 we had one of the toughest decisions to make regarding the fate of Thurston. It is the very day that they told us that Thurston was not going to make it out of the womb and that we could either induce him and get him out to end his suffering, or go home and wait for him to die inside me, I remember staying up the entire night trying to make such a horrible decision:

"They went over our options. We could induce him, and get him out, or we could go home and wait for him to die. WHAT THE FUCK KIND OF OPTIONS ARE THOSE.....I thought to myself. I wasnt sure if I could handle the pain of carrying him around inside me, everyone asking me the proverbial onslaught of pregnancy questions "hows the pregnancy going", "how many weeks are you now", "is it a boy or a girl". I thought I would tell them to all Fuck off. I thought a lot of things. Chad and I tried to mull it over, how the hell do you mull something like this over."



Yesterday, February 17th 2011, ironically and tragically to the day, we were given those same options at the care meeting. They told us that by now the trach should have given him the support he needed to start growing. He should not be having these continual episodes. They told us that they now know his Pulmonary Hypertension and lung disease is irreversible, that his lungs are not growing and are too far damaged to fix. ...meaning there is no cure, no going back, no stopping its formidable force; permanant. Its like a cancer that Chemo cannot cure, its like having cystic fibrosis only Thurston's lifespan will not even be 1/4 of the predictions for someone with this disease. So yesterday, like clockwork, we were given the EXACT same options that we were given before he was born, either take him off of the life support and end his suffering or prolong his life and therefore his agony, that will always mean being hooked up to a vent and most likely include him being heavily sedated, and wait for him to crash again into his ultimate demise......

I know many of you are asking yourselves, "but wait isnt there ANYTHING else you can do"......and please bear with me for being extemely frank in the very fragile emotional state that I am in right now. ANYTHING and I mean ANYTHING that you are asking yourself please be assured as astute, intelligent, thoughtful, caring parents it is nothing we have not asked ourselves, asked the doctors, looked up online, asked other people etc. There is always a need for someone to try and help, to think that they may have the AHA solution to our issues and problems, and really we know that you only mean well and of course you would like Thurston to beat this horrible disease as much as we do and we love you for it but trust me it will only make this process more painful for us so if you write to us or call us or text us or talk to us PLEASE I beg you do not berate us with the "isnt there anything else they can do" or "well what about this avenue or this road, have you tried that" "hey I read about this situation...." etc. Please please know that we have been dealing with this situaion for almost a year now. Please know that we have consulted many many people, have done gallons of research and have talked to a multitude of parents in very similar situations. I know it is only natural for an outsider to think that there MUST be something that they can do, but Thurston now has a terminal illness who is being kept alive by life support. That this couldnt be more painful or more tragic or more unreal and what we truly need is just some time to let it all soak in. We have no answers as to when where or why it will happen, much like someone who has been diagnosed with terminal cancer but the doctors think it is only a matter of time........

Having said all of that we are getting a second opinion and the doctors are helping us do that. We still may run a few more tests here and there. We obviously as his parents want to make sure that we have exhausted all possibilities in this manner, to make sure if and when he does pass away, that we did everything we could for him. Trust me we dont want to live in a world of regret either. After we have done all of that we will have the ability to take him home and to make sure that he can be with us. He is still very much himself and has moments where he is kicky and happy and coherent even through all of the sedation which they said they will slowly wean him off of. We welcome all visitors both in the hospital and at home who would like to come see him, to meet him for the first time, to say goodbye, whatever it is we would love it and I know Thurston would love it. He is a very social little guy and I would love that his life be full of as many awesome and incredible people and moments as possible. Thank you for all of your support this last year and continued support helping us get through such an unimaginable tragedy, something no parent or child should ever have to go through.


I clearly remember the one thing that always gave me hope on this very long journey was the fact that I always thought that one day, Thurstons lungs would get better. I always thought about all of the parents who had to drive to the hospital day in and day out knowing full well that their childs days were limited, knowing that they did not have a future with them, and I always thought, "at least we have hope". Well now we are those very parents that I always felt so bad for. I now have to redefine yet again what hope means, if I can even find it. Right now I only feel that all hope has truly floated away.


When he shall die
Take him and cut him out in little stars
And he will make the face of heav'n so fine
That all the world will be in love with night
And pay no worship to the garish sun.
~William Shakespeare, Romeo and Juliet



38 comments:

  1. Donna and Chad,
    This is just heartbreaking. I cry for your whole family. I hope you can find the strength and the faith to get you through this most difficult time. I am so sorry. Words just can't say. Love you.
    Monique

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  2. Oh, Donna, I am so, so sorry to hear this update.

    I would never think for a minute that you and your family have ever given Thurston less than your everything. Anyone who reads your blog knows how much Thurston is loved and cared for. You have been his tireless advocate, all the while remaining, to him, his 'Mom."

    There is no judgment. You love him with all your heart. That's clear. Decide with love, and you can't go wrong.

    My prayers are with you during this time.

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  3. My heart is broken and my prayers are with you... :( If there is anything I can do to help you guys please let us know.

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  4. My heart breaks for you. You advocated for your child in a way that is admirable and you are certainly one of the strongest women I know. Whatever happens to your little man we knew him and he changed our outlook :-)

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  5. Oh, Donna, as I am crying, I cannot imagine what you and your family are going through. My prayers are with you and Thurston. You are an amazing mother, and he knows it.

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  6. Donna. You are all I could ever hope to be as a mother and patient advocate (as a nurse).

    You alone know what he needs for peace, and mostly, for his comfort. Nothing to say but love to you and your lil guy

    You are the greatest gift to him. Love, Gale

    Live Gale

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  7. I made a heartbreaking decision at 4.5 mos.pregnant..you are much stronger...much wiser...even though you may doubt it now and for years to come, please never stop believing in your faith, family and friends. My dear friend sent me a note w/a cookie bouquet to the hospital that read ( and I will never forget) "life is a bitch!". And it is! There is nothing that I, or anyone can say to take your pain away or make it alright...you are and have been in my thoughts...much love and healing vibes to you, your family, Thurston and all of his caregivers. Life Is A Bitch!
    -Leah Ann

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  8. Oh Donna, my heart breaks for you and your family. I wish there was something I could do to make it better. Know that we love you and support you and cry with you.

    Allison

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  9. I sit here in shock at this news. My eyes are blinded with tears. I feel like I have partially made this journey with you, and this news is devastating. Thoughts, prayers, tears are with you and your precious Thurston. I am speechless beyond that.

    Nancy

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  10. Donna, you are a great mommy to that little boy. He has truly known love. I am crying with you and praying with you and am just so, so sorry.

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  11. Kiterunner (Inspire)February 18, 2011 at 7:54 PM

    Donna, I am absolutely heartbroken for you :(. Poor little Thurston! I agree that life is a bitch. There is no F*** God because if he/she existed, this would not be happening to a little sweet boy like Thurston. He's such a trooper and is really determined to live!

    What are the doctors basing their diagnosis of a terminal illness on? Have they done a lung biopsy on Thurston? If not, how can they be so sure that his lung condition is incompatible with life? What about his PH -- how do they know? Have they done a cardiac catheterization to directly examine the pressure inside of his heart? What are his vent settings right now (peep, O2, rate, etc.)?

    We are going through a similar situation with our little girl and these are the questions we have asked of our doctors. We have gone for second, third, and forth opinions to the best pulmonologists in the U.S. and Europe.

    Still hoping for the best!

    Hugs!

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  12. KaydeesMum (Inspire)February 18, 2011 at 9:45 PM

    I can't even IMAGINE what you are going through right now! I'm not going to offer you the same cliched encouraging words, because your probably don't want to hear them right now. I can't offer advice, b/c this isn't a situation I've been in myself. What I can sincerely offer you from the bottom of my heart is prayer! I believe in the power of prayer, and will pray for you, your family, and especially baby Thurston!

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  13. Donna and Chad......you guys are amazing and very loving parents!!!! I am so sorry that you are going through such a difficult time. Know that you will continue to be in my thougts and prayers. Love and hugs to all of you...
    XoXo~~~Patty

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  14. My heart is aching for you as a mother. I pray for your family.

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  15. If its ok with you guys I'll come down to help out whatever way I can .
    ddll

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  16. Donna, Everyone has said what can be said. Just want to send my love to you. Sandy G

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  17. This is so painful to read. My heart hurts for you and your family, Donna! I want to come by and see you guys. I'll try to arrange something soon. We are praying for you in the meantime, and are keeping you and Thurston close to our hearts. I am sending you all the love I possibly can this very moment!

    Beverly

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  18. Donna
    I am thinking of you around the clock. I updated Steve last night and his eyes filled with tears. We can never say we know what you feel, but I think we have an idea of it.
    Much love to you all....please give Thurston a kiss for me.

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  19. Let me start by giving you a virtual hug(((()))you are such a strong women!!!I am so sad reading this, I ve never read your post until yesterday, and I haven't really been in your shoes, but my daughter had complication after a "complex open heart surgery", and had to be put on ecmo, I know it's not the same, but I prayed and stayed in faith and god healed my daughter. I am sure it's not what you want to hear, but have hope in the lords faithfulness. God has not forgotten about you, you are not alone. There is nothing too hard for god, he is the same miracle working god as yesterday, today, and forevermore, trust that god is already working on your son, god loves you, wit that I will say godbless you and I will pray really hard, and believe soon you will receive good news!!! Love janet
    M mm

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  20. My heart breaks for you and your family. Sending lots of love.

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  21. My heart goes out to you, Donna. I have absolute confidence in whatever decisions you make. I hope your additional opinions and tests can bring hope back. But if there comes a time to decide, it might be helpful to tune out talk of miracles. That can keep you strung along forever, and if God could really change all things, he wouldn't have let this happen in the first place. --heather p

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  22. My heart is heavy reading this. It brings me back to the moment i arrived at the ER to find my dear Dave was being kept alive by oxygen and CPR and that there was not even a smidge of hope left to even have him respond to a 'good bye'. In that moment, you can't help wonder why God has done this to you and what on earth, in all his good and mightiness, can come of all this. No answers are clear, but my hope and faith in the Lord keeps me buoyant for i know I will be his child for eternity.
    I'm happy for all the small moments of joy you've shared with this little life and I will continue to pray for you. May the Lord bless you - Eva

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  23. In his lifespan Thurston has united so many people in hope and prayers, and you've educated so many about the hardships and heartaches a preemie and his family endure. I just wanted to wish you peace and serenity in any decisions you make and to reassure you that no one should judge you who has not walked a mile in your shoes, and even then. My thoughts and prayers are with you and your family on this difficult journey.

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  24. Donna and Chad I am just heartbroken to hear about Thurston. I have been following you all on inspire for the last 7 months and I truly love and adore Thurston and you all have given me so much hope. I am going to continue to pray for you all and lean not to my own understanding but trust that GOD even when we don't agree or understand is in total control and his will be done. All my love, shonda

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  25. My heart is breaking for you. I would love to come visit you. Let me know when I can and I'll be there. I can't imagine what this journey has been for you. I know that Thurston got the most amazing parents and that his life has touched so many people in incredible ways. I will continue to pray for all of you.

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  26. We have been there... parenting preemies changed my life in ways I could never have imagined.

    I hated --absolutely hated-- the options laid out before me regarding my sons. But when it came to "releasing" my son Jonathan (that is the term we use), I too have no regrets, knowing we had exhausted all possibilities.

    All I can do is send *all our love* to you and to Thurston.

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  27. Like everyone else who has followed your story, this just devastates me. Because I have a grandson with a trach who spent 7 months in the NICU and just went home two weeks ago, I anxiously read every one of your posts. You helped me so much. When my daughter and her husband were trying to make the dreaded trach decision, I shared some of your comments with them. You have been such an awesome advocate for Thurston and fought so hard for him. I know you are an inspiration to everyone who knows you. This is all so unfair. None of you deserve any more pain. You are all in my prayers as I pray for a miracle for Thurston.
    With much love,
    Barbara Bourgeois

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  28. MominPA (inspire)

    My heart goes out to you and your family. I have read your posts on Inspire and silently followed your story. You for sure are a very strong person. Even the strong feel weak and helpless at times. Keep your head up and pray your little heart out. I truly believe in the power of prayer. Just keep in mind baby Thruston has proved the doctors wrong before. Thruston has been through so much and has pulled through so much. He is a tuff little guy! With saying "He is still very much himself and has moments where he is kicky and happy and coherent even through all of the sedation which they said they will slowly wean him off of" I STILL have MUCH hope for Thruston! Hugs to you and your family.

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  29. All my hopes and prayers to Thurston, you and Chad, and a prayer for the miracle journey to continue...

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  30. First off let me start off by giving you a hug for being such a strong women and a loving mom. I have had that question asked to me again after he was a few days old. But I can not imagine seeing hearing my baby every day for a year. My heart goes out to you guys and my prayers are with you. Stay strong.

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  31. Sending you prayers for strength. That is what my mom always prayed for: The strength to keep going through life when life is anything but fair, kind or just. The strength to keep loving and hoping even when things are at their darkest. And the strength to know when to let go and say thank-you for what time and love we were given, even when (and especially when) it isn't enough.

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  32. My heart is absolutely broken for you. We are here sending all of our love to all of you.

    Love,
    Stacey, Rob and Randy

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  33. I am so very sorry. I can not even imagine the grief you and your family are experiencing. You all are in my thoughts.

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  34. Dear Donna, no decent person will ever judge you! Trust your gut and you cannot go wrong. Find the answer inside of you! We know when it's time to fight and when it's time to let it go...

    All my love to you and your family.

    -Simone n Chris

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  35. Thurston, You and your family are in our thoughts.

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  36. Donna, we are keeping you all in our daily thoughts and prayers. Love, Bobby, Connie, Brittney & Brandt

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  37. Donna - Thank you for sharing so compellingly your story and your journey. As a mom with a child who suffered greatly with a chronic diagnosis, I do completely understand your words about all the well-meaning things that people say, especially the "magic cure" kinds of advice. You articulated that so well for any parent who has ever suffered the way only a parent can whose heart is breaking. All of us at the Ronald McDonald House wish you special family moments with each other as you continue this part of the journey.

    Jan Gunter

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  38. When i heard, i cried for a long time. I felt very sad, like i too am loosing Thurston. I have done nothing but cheer him on. Tonight i will pray for you and for little glow worm and pray for the mercy of God.

    Ratartart from Inspire.

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