Yesterday was harder on us then any other day with Madden so far. I still don't want to remember more about yesterday than the title of this post. My husband posted on is facebook account so I have stole that to share here as well.
What I will tell you previously is that yesterday we were told that our baby is dying and that at best he has 3 weeks of fight left in him. They did an echo from down his throat to get a better picture of his heart. This showed that is heart muscle is thickening and getting worse. Madden will not be able to love with his heart. He needs a transplant. His body can fight and be supported for another few weeks while he waits. However, Madden may not be a candidate for a heart. If he isn't we have days left with Madden, and not many days. We will find out by Friday morning.
Real real tough 36 hours for us.....and for Madden. Words you don't want to hear about your child.....fatal....lethal....life support....transplant....dying. All unfortunately we've had a good dose of in the last few days. Carly I'm sure will put the more technical stuff on our blog (as she is excellent at that) but Madden has taken a serious turn for the worse. Our doctors have told us Madden is dying.....and we need to find a "magic bullet" if he is to live. Madden has a thickening in his heart and now will need a heart transplant to survive. As I sit at this computer at 2am ..... unable to sleep...trying to make sense of this...I sit back and I wonder...what has this come to. Madden needs a transplant.....and what does this mean? It means a little baby somewhere has to die for my son to live. I knew for weeks this was a possibility but I never ever wanted this to happen. I never wanted it to come to this. How can I as a father....now rest all my hope on my sons survival on another familys sorrow. I honestly want to be sick. I hate this. I begged and pleaded...never ever wanting to utter the words... transplant...as I knew what the other side will be. But now.....push has come to shove....for Madden to live we need another babys heart. The other side to the coin is Madden may NOT be a candidate for a new heart...thusly their will be tests done and conversations had tomorrow to see where he stands. believe me everyone....I don't write on this page to look for sympathy for me....the sympathy should go to a little boy who has fought his ASS off to be here 87 days in and continues to knock over hurdles like a champion. It's difficult to share your life on facebook or whatever forum but I feel their is a purpose....maybe that purpose is to educate people on our struggle....maybe it's about drawing a community together over a child in need.....or maybe it's just simply to reach out to parents and say..hey....love your kids fully...hug and kiss them every chance you get....because I think we all take that for granted. I wrote along time ago about my work situation and my time with my family. In that letter I said as a family Carly and I both felt it was important for me to take off the time and spend as much time being with Madden as we had no idea how long he would be here for. My last post or 2 ago I said only time will tell if we made the right decision....well....time has told me...and we did make the right decision.... I needed to not only be there for Madden but I needed to be there for me. Please do not take this as us giving up...but just the opposite....I will fight for Madden as long as Madden wants me to fight for him. I will exhaust this last avenue we have for him as I feel I owe it to him for his fight. But as the doctors have told us....that decision may not be ours...but Maddens...and he may say he has had enough....but until that slaps me in the face all I can do as a father is hope....and hope that somehwere out there...a miracle for Madden awaits. Madden...I love you buddy more then words can describe....please keep fighting...AND KNOW YOU'RE LOVED BY NOT ONLY YOUR FAMILY....BUT DOZENS AND DOZENS AND DOZENs OF OTHERS.
I know you are all praying for Madden...and have been...and I want to as always thank everyone for their support.
I know you are all praying for Madden...and have been...and I want to as always thank everyone for their support.
The only thing I want to add: Madden we love you more than you will ever know. I want to bring you home and love you up but if this fight is too much. I understand and will love you forever regardless of where you are.
I want to say that here because I everytime I try to say it to Madden the words won't come out...all I can muster is "keep fighting Madden. I love you so much. You can do this. We will get you home. You will get a little heart. I am so so so proud of you". I am just not ready...
One day I may write about our past 24 hours but today isnt that day.
I don't know you but I know someone who loves you. I don't know Madden but I love him. I will be on my knees over the next few days praying for him, the doctors, and you, his loving parents. Miracles do happen.....Madden is a miracle - he has shown you strength and he has shown you the magnificence of true love...and I will pray that your beautiful little miracle will pull through this. God be with you all.
ReplyDeleteI also don't know you, but have been following Madden's journey. His strength, your strength - brings me to tears. What an amazing little man he is, and a blessing however long he is here on earth. My thoughts and prayers are with your entire family.
ReplyDeleteIt's so funny how the internet brings us to these places, where we feel such closeness to one another, despite the obvious distance. I feel so much like I want to just reach in and give your sweet sweet boy and all of you the biggest hugs. He is just adorable, and his story brings me back to reality. He makes me forget that I have a headache and that my 2 year old and 9 month old woke me up every hour of the night last night. It doesn't matter. Madden makes me remember that life is so precious. Please be strong and know that Madden is stretching his wee arms around the hearts of people all over. I might not "know" you, but I feel you.
ReplyDeleteI came to this blog through a link by someone who knows and cares for you.
ReplyDeleteI have never met you or your little boy, but I feel a connection to your story. Over a decade ago, a baby was born into my family who was also born with a heart that didn't have enough beats in it. He lived for 6 weeks, and in those short 6 weeks changed my family in profound ways, that will last a lifetime for those of us who had the chance to know him. I think everyone whose life he touched is a better person for having met him.
I hope that your Madden finds a heart with a long lifetime of beats in it, but know that if he doesn't, the world is a better place for having had him in it.
I am also a stranger to the DeLuca family, however, I am drawn to your story and your struggle as if you were my own family. I pray for your sweet baby boy everyday and for the rest of you as well. Madden is an incredible fighter with an amazing spirit! I am sure he fights as hard as he does because he knows how loved he is, even by complete strangers! God bless you all and may Madden receive the miracle he so richly deserves! I am confident he will!
ReplyDeleteI do not know you either but my heart is aching for you as parents. I cannot fathom what you are feeling but I can relate to being on the organ transplant recipient side of things. My mom was given one year to live with the lungs that she had. 11 months later she was very sick and only 83 pounds. We prayed continually that a lung would be provided. Just before Christmas she got the call. This was in December 1995. She was given 3-5 years to live after the transplant. It's now 2012 and she's healthy and has beat all odds and quite literally baffled the doctors. My point is, keep fighting and don't lose hope. I will be pray for healing for Madden and may you experience the peace that surpasses all understanding.
ReplyDeleteI too am a stranger to your family, I am the mother of a preemie, we have been where you are the waiting and the wondering and mostly the praying and putting it in Gods hands holding hope that your child has the strength to make it. I pray that Madden has the strength and that he receives a gift. I can tell for the way you both write you have already been blessed, I will pray for Madden and for both of you. Bless you all and thank you for sharring, as difficult as it is it reminds us all how blessed we are to have our children here with us and healthy.
ReplyDeletei do not know your family, but i know someone who does, and i saw the post on facebook. i know what it feels like to lose someone this close and you are all in my prayers, keep strong guys and always remember that Madden is watching you from above and he will be until you are reunited with him!
ReplyDeleteI don't know you or your family but am a friend of a friend. I'm so sorry to hear about madden. he will be watching over you from heaven. your posts have been so beautiful and touching. thank you for sharing him with all of us. he was so lucky to have you as his parents. god bless and may he rest in peace.
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