Yesterday marked the 2 month birthday for Kaden. I tried to post last night, but couldn't. It was an emotional day for me and I received alot of phone calls and text messages, and even a "thinking of you" card from all the nurses and doctors that took care of Kaden at UCSF. So I was on the emoitional rollercoaster yesterday thinking alot about him and what it would have been like to have an 8 week old baby in the house. I talked to Ashley (Max's Mommy) yesterday, and it is nice to be able to vent and share feelings with someone who knows exactly how I am feeling. Max & Kaden share the same birthday, just one month apart, so we will forever be "connected" in that way. Like I said yesterday, I cannot think of Kaden without thinking about Max. That will never change and I pray that they are together playing in heaven. For those of you who have lost babies to CDH, you may understand the things I am about to say. We, as parents, go thru things in the moments that we make the decision to let our babies go peacefully. For Kaden, it may have been peacefully, but for me it was gut-wrenching. I think about those moments all the time and second guess our decision. After talking to Ashley, she made me realize that we sometimes have to make decisions on what is best for our children, not for us, and I do not know the quality of life that Kaden would have had had we made the decision to do everything until he gave up on his own. It is just so painful to think that I took his life away, and I cannot get the image of him opening his eye to look at us for the first time. Everyone tells me that he was looking at us to say good bye, but in my mind he is looking at me asking me not to let him go. I still to this day cannot look at that picture.
I am sure all these feelings are very normal, I just seem to keep them all at bay until I am alone, or it is a "marker" day. I am sure it is normal to hate this CDH with every fiber in my body, and feel so helpless and I feel like I made Kaden suffer for my own selfish "wants". I look at the pictures of him on ECMO, and there is no way that baby was "comfortable". Paralyzed, maybe, but not comfortable. I understand that ECMO saves MANY CDH babies, but in my case it did not, and all I am left with are gruesome pictures of what I did to my beautiful son. I know I would feel totally different if the outcome would have been different, but it wasn't. I hope Kaden knows that we made decisions for him based solely out of our deep love of him and if he suffered in any way, I am so sorry. We just wanted you so bad. I sincerely apologize if I offended anyone with this post. It seems to help me to start to "vocalize" some of the things that go thru my head that I feel I cannot speak to anyone. Not very many people in my life can truely relate to what I have going on.
Craig & I are taking Logan and Jessica back to Arkansas the 4th-13th of July for my class reunion. Christopher is there right now, for two weeks. He couldn't go with us because he starts football camp on the 22nd. I am excited to get to see all the people I went to school with, but have some anxiety about going to a reunion 3 months after giving birth with no baby. I am sure we will have to tell the story to many, but hopefully it will raise more awareness for CDH. I continue to follow everyone's blogs and know that I am praying for you all :)
Surgeon Appointment
1 year ago
Your sweet Kaden knows how much you and Craig loved him. Your decision was a hard one to do along with everything else you did to help him. My heart goes out to you both. I pray each day for you both.
ReplyDeleteKristi,
ReplyDeleteI wanted to let you know I think of Kaden everyday. He and Ruby were born a few days apart. Don't feel bad for venting your feelings. ECMO is huge scary evil thing even if it does save babies lives.
Vent away. You have every right too. CDH sucks and it makes me angry, too.
Love,
Holly, Ruby's Mom
Thinking of you and wishing I could take the pain away. much love!
ReplyDeleteKristi- Kaden knows how much you loved him... he hung on for 17 days because of it. Know that I love you and I just know our babies were having the bestest party yesterday.
ReplyDeleteAsh
(((Hugs))) Kristi,
ReplyDeleteI think of you and Kaden often. I wish I could take your pain away. Kaden knows how much you love him and wanted him to stay with you. My heart breaks for you and your family. I know I can't completely understand the loss of a child, because I have not been in your shoes. Don't ever worry about offending anybody or upsetting others. I hate CDH with every fiber of my body too and hate what it does to all families affected by CDH. Many prayers for you and your family.
Thinking of you, Tracy Meats - Ian's mom
Hi Kristi, you don't know me, but I lost a baby to CDH 2.5 weeks ago. I know what you are feeling, as I am feeling the same way. Except I let go early. If it would help you (it would help me) to chat, I am here. susansagle@hotmail.com or 970.731.0797. Susan Caudle
ReplyDeleteKristi-
ReplyDeleteI know you have a good head on your shoulders and that you know everything you are thinking is normal. Please don't feel guilty! I can feel your love for Kaden all the way up here in MN, I always could. You did everything you could for him, I hope you find comfort in knowing that.
~Lisa
www.caringbridge.org/visit/avarosedaher
Krist, I too had a hard day yesterday. I cry every time I think about our Kaden and how I just didn't get to hold him long enough. I can still smell his hair and feel how soft his skin was when I touched him. I think we were all cheated on time. I have been amazed at how many people our Kaden has touched since I have been home and back to work. It's hard to see those healthy babies come in to the office and I try to tell their parents and grandparents how lucky they are to have a healthy baby.
ReplyDeleteKristi, you and Craig owe no one an explaination to how you are feeling. We all have to deal with the greiving and the healing process even if it is not easy. I love you and Craig so much and I wouldn't have anyone take away the time I had with Kaden and you both during this time. I am so grateful to have Jessica, Christopher and Logan (spider Man) in my life. God has you in his plan book and we just have to wait for the time to be right for us all again. I wear Kaden's ribbon everyday and try to talk to at least one person about the awareness of CDH. I pray that God gives you both extra strenght and that you continue to communicate your feeling to each other. Don't hold back from each other, as this will only make it harder. You are both going to have your moments but don't be afraid to share it. Ben and I pray every night for our Baby Kaden and we know he is watching us all and smiling with so much love for his Mommy and Daddy and Brothers and Sister. I love you Mom
I truly believe that Kaden knows that you had his best intentions at heart. I think the feelings that you're having just prove that you are human. And that's OKAY!!! My heart goes out to you, and wish I could reach out to give you a big hug. You are always in my thoughts.
ReplyDeleteLove,
Stephanie
Kristi,
ReplyDeleteThough we are strangers, we are bonded forever. I too lost my child to cdh. Sylvia was born and died on 2/26/09. I found your blog on another cdh family's website and linked to it. I accidentally posted on your one month anniv. posting yesterday so you can view my message there. I am so sorry for your loss.
In love and heartache,
Beth Houselog
Kristi,
ReplyDeleteWe have been following your journey from the CHERUBS site from early on as we were pregnant with our son Carter (LCDH) about the same time. He was born a little over 3 weeks after Kaden and as his battle still rages on, we can't let even one small victory go by without thinking of the horrors that CDH has ravaged on such beautiful babies and loving parents. In the past 3 days, two CDH babies lost their fight with this condition in the NICU we are in.
We were also always told that when a decision comes, the parents will do what is best based on the doctors information and their own parental intuition. You are right, second-guessing is human nature, but don't let yourself think for a moment that you didn't do what was best for Kaden.
While we cannot fully imagine your pain, we do our best to understand and empathize your feelings and know that you and Kaden are and will be in our thoughts.
Carrie & Jeremy Adler
You write what is in your heart and NEVER stop. Your feelings I totally understand. You have every right to hate CDH. When things go wrong with Ava I too dispise this beast.
ReplyDeleteI believe with ALL my heart that your son was not in pain on ECMO...he was already in the Creators arms. Ava did not need ECMO and I too was petrified of that machine. Yes it saves lives but it is also the "last resort" for many and that is the scariest thing ever in our world. I think of you guys often and ask God to bless your lives richly for what you had to give up.
Kaden will always be your shining light. He is a vision of Jesus and His love for His children. I know it is no comfort now but one day we will all just understand the whys.....
~Terri, Brian, and Ava
http://avaslifewithcdh.blogspot.com
Hi Kristi,
ReplyDeleteI am so glad that you posted. We think of Kaden and your family often. We always wonder how you're doing. Please do not beat yourself up about the decision you had to make, you did it out of love and for no other reason than that.
I can not pretend to know how you feel, but I must tell you that I, too hate CDH. I say that several times a day while sitting in the NICU. This is a very hard journey, one, that I hope someday with awareness, prevents others from going through it. Jaime will be 2 months old on Thursday, we are so far from coming home and being "normal" it's not even funny. Again...CDH SUCKS! I HATE IT! I hate what it does to babies and families, it's just not fair.
We pray for all CDH'ers, both heavenly and earthly daily.
You and Craig are so strong, know that we are thinking of you and praying for your peace!
Love and prayers,
Sheryl
oh kristi, i can feel your pain through the words that i read on your blog and they break my heart. you don't need to explain to anyone why you might think/feel something. we all know that you only had kaden's best interest at heart and the best part is that he knows that as well. i believe with all my heart that he looked at you that day because he wanted to see the two amazing who loved him so much.
ReplyDeletewe still pray for you all and think of you often. know that! although we've never met we love your family and send you many hugs from afar.
I dont know if I have ever commented before, but I have been reading and wanted you to know that I continue to keep you and your family in my thoughts and prayers daily.
ReplyDeleteKristi, I am simply glad to see you posting and reading along with us on the other sites. I have absolutely no clue what you are going through and am not enough of an eloquent speaker to throw out my every emotion to you. ...but, you were loving that baby with every ounce that you could give and then some. Anyone reading the quick posts could see that. ...I continue to be amazed at the support that you and Ashley, and others that have walked in your shoes give those of us that are simply trying to get to that due date and begin our own CDH journeys. You each let us know that there is still hope and for that I am thankful to have stumbled upon your blogs, your self. ....I first learned of CDH right around the time Kaden was born. He was the first person to teach me so much about this disease and I thank you for sharing that. He was also the first to teach me how truly connected we all are. I cried right along with everyone else and tonight I cry again because none of it makes sense. I pray that your family is healing in the way that you need to. Don't for a minute feel the need to censure yourself. You show grace through your words and actions.
ReplyDeleteYou have every right to express your feelings, my neice spent almost 2 weeks on ECMO (12 days I think, you cannot go much more than that) I still remember the day the docs at Children's said they had to stop the ECMO and "see what happens". Our little Syren (care page - SYREN2008)was able to pull through...I am so sorry for your loss, CDH truely is the most common birth defect that nobody knows about (and even if you do know there are no guarantees you just do the best you can and the rest is in God's hands) I know you did what was best for your baby, may time and patience began to heal your void. Thinking of you today. Angi
ReplyDeleteKristi, your family and your sweet baby boy are constantly in my prayers. I don't think a day goes by that I do not think about your sweet angel baby. May God bless you and give you strength!
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