Wednesday, August 26, 2009


Sorry i never blog,

Every time I think to post, I just can't come up with the words to say. All I know to say is that CDH is horrible. I could go on and on about how bad my days can get if i let it get to me, but who wants to hear all that...I will say that I never in a million years thought that I would have to suffer the loss of my child. I hear of mothers all the time that have gone through the loss of their children, and I always thought there is no way in the world that i could ever handle that if it were to happen to me. Guess what it did. Even though it is the hardest thing in the world I believe God has helped me cope. I really wouldn't be strong enough without him, I didn't think I could ever handle something like this, but I'm doing it. There are some days that i just can't get Jackson out of my head and I think i just don't want to go on, I just want to be in heaven taking care of my baby and not suffering anymore, but as soon as i think that God lets me know real fast that i have a family here that needs me and Jackson is better then ever. I still think he needs his mommy though. Ok all you people out there don't take that as i want to kill myself. I've never thought that at all, I just think i want to be with my son, my baby boy that I love so much, then i realize i would have to die to be with him and I don't want that at all. Ty needs me! Everyone tells me that I'm so strong and they don't know how I do it, like i said before it has to be God, because I don't know how i do it either. I don't feel I'm a strong person. I feel like I'm falling apart on the inside and I just know how to hold it in very well. I'll tell you the strongest person I know and that is Rob. He has been so strong for me and Ty. I know he hurts so terribly bad but yet he still goes to work everyday and comes home with a smile on his face ready to see his family. He loves us so much and it's just amazing to feel that kind of love. Rob has been through so much in his life and now he is suffering the loss of his baby boy. That's something else i don't understand, why do some people have to go through so much in their lifetime? Rob is a great person, yet he has had to deal with alot of bad things. He still loves God so much and never questions him like i do. He knows God has a bigger better plan in the end, and so do I, but I don't like not understanding. Lets just say Rob has a HUGE heart and spirit that can't and wont be broken. One day soon I'm going to post about how Jackson did on ecmo and about all his days before he past away. I never got on here to blog while he was in the hospital so people really don't know. What people will be shocked about is that Jackson did very well on ecmo and was always alert and holding my hand. For all you CDH parents out there his sat numbers were always 95 plus and his C02 never came back bad, not one time. The only time his numbers went down were when they had to change his machine. Jackson had 4 ecmo machines in 9 days! The 10Th day they were going for the 5th one but we all know the ending to that. The doctors would tell me that every time they had to change the machine no matter how well the baby is doing it puts them way back! Even if he didn't need ecmo anymore and they had to change the machine it is bad. See it's not the flow that was being cut off that hurt him or set him back but it was his body having to get use to all the new plastic of the new machine. Even my body would go crazy if my blood was having to go through new tubes and plastic every 2 days. Jackson's body would have to adjust to these new machines and he did great every time! His numbers would just go down for like an hour and the doctors were amazed. I still haven't read one story or ever heard of a poor little baby's machine going out every 2 days! Even the ecmo people couldn't believe it. I have no idea why his machines weren't working but it really just pisses me off. When they did Jackson's trial off of ecmo his numbers stayed in the 90's, which means he didn't need it. As soon as they did that trial his machine started going out before they were 100% sure rather to take him off yet and so that was another set back. He was off ecmo for 2 hours and did fine but they wanted a little more time to make sure he would stay that way and his machine got a clot, and then of course he had to have the ecmo. There's lots more to that story though and I'll write some other time about it.....thank you all for the prayers and support



  1. Oh Candice, my heart hurts for you and your loss of Jackson. It is hard enough to see our son's fight so hard, yet the machines that are keeping them alive fail. We went thru a very similar situation with Kaden--clots in the line-"have to get him off ECMO", kinked 'cannula--"can't fix that". They lost Kaden's trach tube when they were doing the surgery to get him on ECMO and he died on the table. They brought him back, but could not guarantee that he did not suffer brain damage. It was so frustrating to see our little guy struggle so hard to stay here, and suffer so many setbacks due to "malfunctions". I am thinking of you and Rob and wishing that we never knew what CDH was :)

  2. Candice,
    It breaks my heart to read this and feel your emotions through your writing. Thank you for being so honest and sharing your feelings. You don't sound suicidal at all and your feelings sound perfectly normal and sane to me! I am so sorry that Jackson did not survive, but he was a fighter and you know it. I wish I knew the magic that would take away your pain, but since I'm not God, I'll just pray for your peace.
    Take care,

  3. I too want to thank you for your honesty and being so brave to post your feelings. Emily is a survivor and did not go on ECMO (although I lived with being told she'd NEED it at birth for three months), so I can't completely understand what your feeling, but I do have love and compassion in my heart for you. Not having your baby with you...I can't imagine the pain. Wanting to be with your boy, no matter where he is, is what makes you an awesome mother. Loving him, seeing him through such rough days, and continuing after he's gone is so courageous..a MOM!
    I look forward to your posts about Jackson's days, not to hear the tough details, but to get to know him and honor his days on earth.


  4. Many prayers for comfort and strength for you and your family. It breaks my heart to read your words and I wish I could take your pain and suffering away. When the time is right for you, would love to hear more about your precious son and the time you spent with him.

    Much love, Tracy, Ian's mom

  5. Thinking of you and when the time is right you will write his story down, at least for me it helped. We didn't keep anyone, but our immediate family in the loop as to how Kasey was doing. When I wrote his story down and let people read it-it helped they got a glimpse into how I was feeling.

    Kasey's mommy LCDH 11.16.08-12.09.08

  6. Been there - no you are feeling anything abnormal. I don't know why he went through ECMO machines either. I know our daughter went through 5 switches over 32 days on ECMO but that was considered normal. Well, one machine the heater wasn't working and they had to switch out again. Writing is great therapy. It gets it down and out. But do it when you can!

    Your in my thoughts and prayers,
    Another Angel's blog & her story:

  7. As I read your blog I could only imagine your pain. You are so brave to write all your feeling! I pray that you continue to heal through this difficult journey. My thought and prayers are with you!

    Joanna(Gabi's mom LCDH)

  8. Just want you to know I'm praying for you tonight. (I came here through Keeping up With the Keirseys)