Sunday 2 September 2012

Madden's choice

On Thursday night we knew that Madden was struggling. We sat with the Dr's and discussed our few options and the very slight chance that Madden would survive long enough to make it home one day. They told us the first surgery to place the artificial heart had to be perfect, we needed luck...we needed a miracle. This surgery would be 12 hours long and very trying on a little body that had no reserve. The list of complications were endless and the risk was incredible high. We were given a 10 - 15% chance that Madden would make it. It was a chance, there was still some hope. Even the Dr's were hopeful. We were also told that Madden had very high chances of going in cardiac arrest at any point. I knew we needed to let Kaelin know because he still believed Madden was coming home. In my heart, I knew.


Rocky and I both left the hospital to pick up Kaelin and explain to him that Madden was very sick and didn't have great chances of making it home. My 11 year old son cried his sweet little eyes out. We broke his heart. Kaelin was devastated. We took him to the hospital so he could spend some time with his brother. He sat and read him stories and talked to him while we were there, telling Madden how much he loved him and how he wanted him to come home so Kaelin could show him the world. I took Kaelin home late that night and picked up Ryker from my sister's so we could all be together.


I told my family to all be at the hospital by 9am the next morning so everyone had a chance to spend time with Madden.

Rocky spent the night at the hospital and text me through the night letting me know how our baby was. He asked if he talked me into this next step. He asked if we were grasping at straws. He asked if I truly felt Madden was done, I had felt it for days.

Early in the morning, a little after 6am, I prayed to God to take Madden into his arms if he wasn't going to get through this. I didn't want to put him through another surgery if we were just making him suffer more and prolonging the inevitable that Madden wouldn't be coming home with us.

At 7am Rocky text me and told me to come to the hospital as quick as I could. He told me he thought Madden was making the decision for himself. Madden was telling us he couldn't fight anymore.
I jumped up, got the kids ready, text my family to come as soon as they could and raced to the hospital. We had a team of people in Madden's room trying to get him stable when I arrived. I looked at Rocky and I could see in his face that he too knew that Madden was done fighting. He was tired.

Dr Conradi came into Madden's room and asked Rocky and I if we could sit and talk. He started out by telling us that when he went home the night before he did a lot of thinking about Madden. He tried to piece everything together without any emotion and he came to the conclusion that Madden's chances were too low to put him through anything else. He felt that Madden would not survive. The surgeon in the morning on cardiac rounds confirmed this for him. He asked the group of people involved what they were thinking. Why they would put Madden through something else when the chance he would make it was less that 1%....way less. Dr Conradi told us that the surgeon would not take Madden to surgery because he was too unstable. He also said that with how much Madden had deteriorated overnight he knew he would not survive. This was the end of the road. Rocky and I both knew. We knew Madden was showing us all that he was ready to fly with the angels. We just weren't ready to accept it.

He explained to us how the day would go and how the hospital would give Madden a dignified and peaceful death. We told him it was important for us to have Madden baptised so they arranged that to happen. He asked us if we would consider an autopsy. Immediately I said no. I felt that Madden's little body had been through enough and I didn't want anymore cuts, anymore tubes or anymore pain. I wanted peace for his small body.

Our family all arrived and we all spent the day in the room with Madden telling him we loved him and that we were so proud of him. We had him baptised and we got hand and foot casts made. We tried to get a few hand and foot prints as well. In the early afternoon the Dr came in and asked if I was ready to hold Madden. He also told us that the "move" may be too much for him and he may not make it through. This is how fragile my baby was. They lifted him up with all his tubes and wires and held him while the bed was pulled out and a couch was put in its place. I sat on the couch and my baby was placed in my lap. I held him, kissed him and talked to him. He was perfect. So handsome. So sweet.


Madden was slowly deteriorating through the day and we could see it. We asked everyone to say their goodbyes to Madden so that Rocky and I could have some time alone with him. Everyone kissed him and said goodbye. It was heart wrenching and beautiful at the same time. After everyone was gone Rocky and I traded places and Rocky was able to hold our beautiful boy. Madden began to tell us the time was coming to say goodbye.


Dr Conradi came in and increased Madden's sedation so his passing would be peaceful. He gave us some more time. He then came back in and removed the breathing tube from Madden's nose and turned off all the pumps which included all the life support medication. He turned Madden so that Rocky and I could both hold him while his small soul left his body. Madden took 3 small breathes in our arms and peacefully passed away. He was ready, he was just waiting for us to say it was ok.

Madden spread his wings and flew with the angels at 5:35pm on August 31st, 2012.

We got to hold Madden for a while after he passed. We hugged him and kissed his cheeks and cried. We talked to him and told him we were so proud of how hard to fought. We then got to bath Madden and get him dressed for the first time. After he was bathed and dressed we got to really hold him, the way parents are supposed to hold their babies. It felt so good to snuggle that little body even though we knew his soul had already left us. We cherished our time with him.

The staff from the unit came in and also said goodbye to Madden. They cried with us and hugged us. They asked for service information and told us they would like to attend.

Before Madden passed away the Dr came in to ask us again to reconsider the limited autopsy on Madden. They didn't understand why this had happened and wanted the information for learning. The potential for this autopsy to save another child's life is very much there. We agreed that an autopsy could be completed with the condition that Madden's special heart is returned to him so that it is with him for eternity.

Just about 2 hours after Madden had passed the charge nurse came in to let us know that the autopsy test we had agreed to needed to be done within 2 hours of the time of death. It was time to say goodbye. It was time to leave the hospital for the last time. I wasn't ready. I never would have been ready, We cried. We hugged him and kissed him some more and then laid him down in his little bed and said goodbye to our small prince, our sweet angel.

We then gathered up as much strength as we could and walked out of the hospital leaving our baby for the last time.

We know Madden is in a better place. We know that this was his choice. It doesn't make this any easier.

A friend wrote on my wall "An angel in the book of life wrote down your babies birth, and whispered as she closed the book 'too beautiful for earth' ". This gives me comfort. Madden was too perfect for this world. He touched so many people while he was here. Madden will forever be in my heart.

I love you as big as the sky small prince. I will miss you forever and always carry you with me in my heart. You are a true hero. xoxox


38 comments:

  1. I am at a loss for words, thank you for sharing your journey - rest in peace sweet baby Madden!

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  2. I am heartbroken for both you and Rocky and your boys along with the families and friends. God has plans for him so big and he will forever be by your sides.

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  3. Thank you Carly for letting us all be a part of Madden's journey. I have thought about you everyday for the last few months and will continue to and pray for all of you. May you find peace in Madden's peace and know that he is watching over all of you.

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  4. My heart goes out to you, Rocky and your entire family. Just remember all the love you have given that sweet beautiful boy. I have been thinking and praying for your family.

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  5. Rest in peace little angel !!!

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  6. Madden Deluca, you have touched my soul & changed my life. My heart will forever hold the story of your time here so dearly. While your life was short it was infinitly powerful & had a profound affect on countless others. I have held my children even closer & loved them even more because of you...you are a angel indeed ♥

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  7. My heart goes out to your family. Madden has inspired me to be a better person. What a brave boy. I pray for peace and healing for your family. God bless.

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  8. Thank you for sharing Madden's journey with us. Madden has showed me that it really is the small things in life that count. My thoughts are with you all and sending you lots of love from Australia. xxx

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  9. Carly, Rocky, Kaelin and little Ryker,

    We are so very sorry to hear of the loss of your precious baby Madden. He and all of you have been in our prayers and our hearts broke to hear of his passing. His journey in life was short but he was surrounded by so incredibly much love from you all. We will continue to hold you all up in prayer and hope that the comfort and love from all your family will surround you as you go through this difficult time.

    Eternal rest grant unto him, O Lord,
    and let perpetual light shine upon him.
    May he rest in peace.

    Amen.

    ~Eric, Pam, Tehya, Griffen, Carter and Piper Davey~

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  10. My deepest and most heartfelt condolences to you and your family! This sweet angel has touched my heart in ways I can't express. I personally know both Dr Rebekah and Dr Conradi, and I know that anything that could have been done, was. Madden, you little hero, fly free now angel. No more pain, no more restraints. Spread those wings wide and fly, fly, fly!
    My heart is with your family at this time.

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  11. God has a true hero with him! Your little prince inspired so many. following Maddens journey we cried, we prayed, we cheered on milestones or good days. We can all see where Madden got his strength from his Mommy and Daddy. You both have shown such courage and strength through these past few months. Although I don't know you, like many others starts following Maddens journey because it touched close to home. Dr. Rebecka operated on my daughter 11 years ago at 5 months of age. May God surround you with Angels to comfort you All during this time. Madden will be remembered as a hero to many people even those who didn't know him only thru his courageous parents post on a social network. God bless u and ur family! Still in many of our prayers. Leanne Zukowski

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  12. God Bless you all. Your strength and courage has truly impacted Madden's strength. Thank you for your blogs, following your story through out the past few weeks has been truly inspirational. Madden's fight stemmed from the strength the both of you have demonstrated through your love, determination and hope. Although a short time, he managed to fight and inspire many. He was a beautiful little man who will be remembered throughout a lifetime. May he rest in peace knowing he won't have to endure anymore pain. May you and your family find comfort in all your memories and cherish the time you had together. My heartfelt condolences to you all.

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  13. Thank you so much for sharing your story. You will never know how many lives you have touched and how many people have mourned for your loss. I promise to hug my future children tighter and to love deeper because of you and your beautiful story. I don't think we will ever meet but just know that so much love is being sent to you and your family. xoxoxo

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  14. First, I am so sorry for your loss, the kind of loss that I wish no Mother to ever have. You, Madden and your entire family are so special to this earth, Our dear Lord has lead you down this path for some reason. I keep you all in my heart, and hope that you can feel my love thru your pain. May you follow the path of life always, as perfectly as you have done thru this journey. I am so sorry for the loss of your Son. Madden may you rest in peace now.

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  15. I am truly sorry for your loss. You are so strong and so brave. This story has touched so many lives and I know that it broke my heart for you- but from it I am reminded to love and live like there's no tomorrow.
    Rest in peace baby Madden.

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  16. What a heartbreaking story. It's so apparent that you loved your child with all your heart and soul. I could not read this without weeping. He was such a beautiful little soul. May you take comfort in your memory of his brief time here, and the knowledge that some other child may live because of what doctors learned from your precious little boy.

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  17. OMG i could not imagine the pain and suffering everyone in your family and life went through and endured in his short life. The strength you all have is astounding especially your little boy. Thank you for allowing the research to be done to help prevent some other family from being down this road.... you story has both broken and touched my heart....I will remember it always...He is happy and healthy and flying with the angels watching over you now as you watched over him.

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  18. Sweet Baby Madden...you truly are an angel who was budded on earth to bloom in heaven.

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  19. Dear Carly, Rocky, Kaelin, Ryker and of course, sweet innocent Madden,

    I am so sorry for your loss, I cannot even begin to fathom what you have been through and are going through now. Carly, you must be the strongest mother I have ever met. I think it is amazing and so brave of you to have documented Madden's life the way you have. While I never met your little boy, I have thought about and prayed for him since the beginning. I feel that his story, his struggle, the fight and strength you have all shown is inspiring. I have learned from him to appreciate life and my children more and because of you and him, I hold my girls closer, I admire them more and I seem to have found more patience. Please know that Madden has positively affected me, and I thank you for sharing his journey with us.
    My heart goes out to you all during this time of terrible sorrow.

    Hugs to you from the Lamberts - Jaime, Mike, Mikayla and Jordyn.

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  20. Dear Carly and Rocky (The De Luca Family)
    My heart goes out to you Carly and Rocky, Madden was truly a miracle and his journey has touched my heart in ways that only a mother can understand. You two have been the most amazing parents and the strenghten you have shown is beyond anyone will ever know. I am so sorry for you loss. Madden will alway be remembered forever XOXO

    Hugs from Marisa and Sophia De Luca

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  21. Carly, Rocky and family. Caring for Madden was truly a blessing. I didn't get a chance to say good bye but I have in my heart. Your beautiful family faught hard for that little man. He was so strong. Budded on earth to bloom in heaven. May you heal in time adb know he is always watching over you. xoxo

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  22. "The best and most beautiful things in the world cannot be seen, nor touched, but are felt in the heart." (Helen Keller). Madden will forever remain in our hearts. Thank-you for sharing this blog with us. I agree with Sandy that caring for Madden was truly a blessing. You two are amazing parents, never forget that! O

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  23. Dear Carly and family,
    I have not met any of you but came across your blog through a friend of a friend and fell in love with Madden the moment I saw his picture. I followed Maddens story and checked for updates numerous times a day and often read them many times over. I am very sorry for your loss and have shed many tears myself. But I wanted to share one thought with you that I find a bit comforting. From everything I have read, Madden, in the short time he was with us on earth, touched and changed the lives of more people than most of us do in 75-80 years of life. He truly was an AMAZING little soul and he bettered the world from the moment he was born. I now pray that you and your family can heal and find peace yourselves. From one mother to another, my deepest condolences to you and your family.

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  24. Thank you for sharing Madden's story. I have read every post and my heart soared and broke as I read. Your strength, courage and determination is inspirational. Madden had these same qualities, what a little fighter! His story has touched my heart. As a mother of two, I will hug them closer, appreciate each small moment we share, and promise to be more grateful. I'm so very sorry for your loss, many hugs to your family. Madden will forever be part of all those his story has touched. xo

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  25. Dear Carly and Rocky, I am so very sorry for your loss. I just learned of your sweet little boy through our friends on facebook. I am so very sad as I finished reading this latest post, but I am also amazed at your strength and eloquence as you wrote it. My thoughts are with your family, and I hope the unbelievable strength and faith you have demonstrated here will help you throught this extremely difficult and heart-breaking time. Our prayers are with your son and your family. Allan Dedrick and Family

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  26. Dear Carly and Rocky, I don't you know personally, but if I were to know you, you would be a true friend for life. You are an incredible woman and mother. You inspire all women out there. Even us mothers that have children and teenagers. Madden is beautiful prince and is resting with the Angels. Thank you for sharing the journey of your amazing beautiful baby. Your husband, Rocky is also an amazing man....and your two strong boys at home. From the first time I read your blog to the last one, I cried and prayed everyday. I am so very sorry for your loss. May God guide you through these difficult times and Madden is guiding you and giving you strength to continue in life as wonderful beautiful mother you are! Never forget you are two amazing parents! God bless!
    Frances Pagnotta and Family

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  27. But all endings are also beginnings. We just don't know it at the time. (Mitch Albom, The Five People You Will Meet in Heaven"

    Carly and Rocky, you were perfect parents for Madden. You loved him to the sky and back, you made hard choices for him that were right for him all along the way, and at the last, you listened to his soul and gave him his wings. No one could ask for more, or better. I pray that although your arms are empty that your hearts are full of the strength, the love and the respect you've gathered over the last 3 months. I for one will remember you and Madden with great affection and as the years go by, I'll wonder how you're doing, hope for future happiness with Kaelin and Ryker and pray that you never feel regret for any of the choices you've made. I wish I could have been there to help, but as you know, I was spending time with my own precious children. My love and my deepest sympathy to you. May God hold you in the hollow of his hand.

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  28. Dear Carly and Rocky,

    I don't know you as I was made aware of your journey through a friend. Your's and Madden's fight was one that nobody should have to endure. I think of you with tears in my eyes and just know in my heart that Baby Madden is in a really special place now and being loved as much there as he was here. My deepest condolences for you and your family.

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  29. Dear Carly and Rocky,

    I am so sorry for your loss, my heart breaks for you and your family. Madden will always have a special place in my heart and remind me to never take anything for granted. May he rest in peace.

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  30. Dear Carly and Rocky and the De Luca family,

    I am so sorry for your loss...although I have never met you your story has deeply touched our family. I can't imagine the pain you are feeling..May you find strength in God's love for you and comfort knowing Madden is in a beautiful, peaceful place surrounded by the love of God. Thank you for sharing Madden's journey..He will remain in our hearts and prayers.

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  31. Heartfelt condolences to you and your family at this most difficult time. Your decision to share Madden’s story has positively impacted many lives and your courage and strength is remarkable and inspiring.

    Following Madden’s journey has reawakened my spirituality and belief in prayer and I thank you and Madden for that. I have sent prayers to you, your family and baby Madden every day and followed your blog throughout this journey in this life.

    We do not always understand why things turn out the way they do but I do know that everything happens for a reason. God truly couldn’t have picked more loving parents to bless Madden with.

    May you know now and in the days ahead that death does not sever the bonds of love and therefore your little prince will always be with you and he will always know how very much he was loved and treasured, and always will be held in your hearts.

    Many people who live for a much longer time do not achieve all that Madden achieved in his short time here on earth. By sharing your and his story, you have touched countless hearts and Madden has changed lives and brought more love to the world as we are all reminded what is important and will carry forward this legacy in our lives in the days ahead.

    Although I cannot begin to comprehend the pain you are going through at this time, my wish for you and your family is that in the days ahead you are comforted by the memories of Madden’s heart and soul that were chosen for you for a very specific reason.

    May you treasure knowing that having Madden as part of your lives is a gift that will continue to bring you peace in the days ahead and that his soul will always be a part of you and will therefore live on for eternity.

    Your angel is safe and at peace and may God bless you and yours in all of the days ahead.

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  32. Rocky & Carly,

    I do not know you personally, but have been following the journey your family has endured through a friend!

    You are both truly amazing parents! Carly, you are a strong and inspiring mother! Rocky you are a strong and amazing father! Your strength and courage is inspirational and you need to remember that you have fought for lttle Madden until the end!

    From the first time I started to read your blog, you and your family have been in my thoughts and prayers everyday! His story has touched my heart! Thank you for sharing!

    Madden was truly an inspiring litle man - just like his parents! He has taught me to cherish every moment with my two beautiful girls and to appreciate the little things in life and not take anything for granted!

    As the days and weeks pass, and as you return to life's routine, may you feel comforted by the love and support of your famiy and friends! Take comfort in knowing that you have a special guardian angel watching over you!

    MAY YOU REST IN PEACE, BABY MADDEN!

    Stella Sanginiti & Family

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  33. Thank you for sharing your tender moments for all.
    My condolences to you and your boys. Know that as parents, you listened to your baby, knew his every needs and had the courage to listen when Madden said enough. You should be so proud of yourselves, you are truly an amazing family. Those of us who were lucky to work with Madden will miss his snuggles and smile.
    God bless you all.

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  34. May angels hold you tenderly
    And lift you up on grateful wings
    And carry you among the stars
    And sing to you of lovely things

    May the winds of time blow softly
    Just enough so you can hear
    How much we love and miss you
    And wish that you were here

    Our hearts will always ache with sadness
    And silent tears will always flow
    For what it meant to lose you
    No one will ever know

    Heartfelt condolences to the Deluca family. May you find peace.

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  35. I don't know you but I had been praying so hard for Madden (heard about him through a friend). My heart is broken for you and I think you are amazingly strong and I know baby Madden is in God's arms and will never ever suffer again.

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  36. Heartfelt condolences to the Deluca family. Thank you for sharing Madden's journey. Your courage and strength is inspiring.

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  37. A short time in your arms, FOREVER in your hearts! What an inspiring courageous family! Your son inspired many more people than you will ever know. God bless each of you during this most difficult time and know that your precious Madden is now an Angel among us.

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  38. Dino and Maureen Borrelli7 September 2012 at 19:15

    May Maddens strength and courage be forever with his friends and family. His journey has been truly inspiring and has forever touched our hearts. God bless you Madden, may you go in peace.

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