Another CDH Angel earned his wings today. After a courageous 29 day battle, Kaden Morrow passed away in his parents arms. He amazed doctors, nurses and his parents by his amazing determination and fight.
I am so saddened by the passing of Kaden, it seems like CDH is winning lately and it makes me mad. The last several babies that I have followed on my blog have lost their CDH battle, currently Baby Catherine who was born the same day as Elli is still fighting, and is doing well. She was extubated yesterday and is on the CPAP machine. I just wish that things were different and I was hearing more success stories. In the last few months, Ethan, Seth, Will, Elli and now Kaden have all lost their CDH battles. I feel like with all the technology and advances in medicine, CDH should be having a better chance for success, but there is still only an overall 50% chance of survival. One of our nurses at Children's was telling Brian and I that she had been a NICU nurse for 30 years and an ECMO nurse for 17 and the overall survival of CDH babies has not changed for over 30 years. These babies are the sickes in the NICU and the hardest to treat. Why is this devastating defect so unknown, I don't know the answer to that, but I hope to continue to spread CDH awareness in the name of Elli. I am trying to think of something to help raise awareness and start some sort of foundation. Lots of ideas, but nothing solid yet. We received so many memorials and I want them to be used to get the word out about CDH and raise awareness. Either way I guess at least Elli has lots of little boys to play with in heaven.
Elli Sweetie- I miss you so much, my arms ache with emptiness as I look at your perfect little face in pictures that I have set up around the house. Daddy is back at work, so that leaves me home thinking about you. I know that you are breathing easy in heaven, but I wish you were still here with me. What I wouldn't give to have you in my arms for just another hour. I feel like we were just getting to know each other when you were called to heaven. Every time I hold onto your SugarBear I think of how strong you were and I try to be the same. I love you sweet baby girl. Daddy also sends his love. We think of you every minute...
16 comments:
Cassie,
I know there is no way of understanding it. You are such a strong person and I'm so glad that you are able to post. I want to remind you that your Elli was loved by so many of us that never got the chance to meet her. You clicker is over 34,000 hits. That is enough for me to realize what a huge impact she has had on all of us. Your heart will lead you to a great idea. I'll be looking forward to supporting your great cause.
Kaci
Cassi,
You, Brian and Elli are on my mind and in my prayers. I do know what a great nurse you are and think you would make a great NICU nurse but it would be really tough so soon after losing Elli. Hopefully your heart will let you know when you are ready to handle it. Whatever you decide, your abundant love and compassion for others will be greatly appreciated whatever age your patients may be.
We will all be happy and honored to support CDH awareness and will participate in any projects.
You and Brian are amazing parents and Elli is an amazing baby and I hope you will always know how loved you all are.
Forever in our hearts,
Nancy
PS The visitation and service was
was beautiful and so fitting. I couldn't help but notice all of the flags flying in Treynor. How wonderful!
Cassi,
It does seem like there are so many babies losing their fight to CDH. We continue to wear our bracelets every day for Elli, and all the others. I have taught so many people just by wearing it. Thank you for giving us the knowledge about CDH. Elli is forever in our hearts, and you both in our prayers.
Love,
Colin, Brandi, & Grace Ricci
I go through these same thoughts in my head all the time. I hate CDH and wish we could do something to increase the survival rate.
I have been thinking alot about starting a home in Omaha, similar to Parker House, for CDH Families to stay when they come here for their CDH journey. Luckily, my husband has a lot of real estate contacts and he has his own home remodeling company so I think it is doable in the future. I would love Elli to be honored and even named in the project even though you guys were in KC and not Omaha. Maybe it could be "Liviana and Elli's Place". I'm still working a lot of it out in my head but I am determined to do something more for CDH families.
I've rambled enough on your blog now. My e-mail is on our blog if you ever want to contact me.
In my thoughts...
Amy
livianasjourney.blogspot.com
Cassi and Brian,
Your strength throughout this journey has amazed me and intimidated me. We have never met, but I have followed your precious Elli for many months. I am heartbroken for you both, your family and friends, and all those affected by CDH.
Your love for Elli is evident in your writing, and I can see it in the pictures you post.
I pray more now, than I ever have and I thank Elli, and both of you, for helping me see that God has a plan for all of us.
God Bless you all
Kim
cassi,
I'm from Fl. and I found your blog while I was looking at a friends blog and then well ended up looking at yours and have been following along for a few months. My heart is very sadden by your story. You have a gift of sharing your journey and Elli's life which drew me in to follow. Until I read your blog i had no Idea what CDH was and now I do. I am suprised by how many people are affected by this defect and yet it seems like no on know it exist. I have shared your website with mt co-workers and friends and we all were so devestated whe Elli got her wings and so sad. Anyhow you are gifted a gifted writer and your story has changed us and impacted our lives. I know you were trying to find away to spread awareness and I was thinking that maybe you could contact Oprah this is just the thing she loves and think about how much you could spread awareness through her show. Anyway it might sound corny ti you but Elli's story and your journey with your gifted words could change peoples lives.
I too did not know what CDH was until I read Elli's blog. I am still praying for you and thinking of you... you are so strong, I can see how much you love Elli by the way you write about her. Your strength as a parent and a human being will make you an excellent nurse no matter what field you pursue. My heart goes out to you.
Laura and Brandon
Cassi- I'm sorry I couldn't make it to the visitation, I very much wanted to. I just wanted you to know that I've been thinking about your family and you've been in my prayers. I'm working at Heartland now on the oncology floor. (missing st. francis a little) But anyways...I'm still wearing my bracelet and helping to spread the word about CDH. I'll never forget you or Elli and the strength of your family and how many lives she touched. I will do whatever I can to continue to spread the word on CDH awareness. Take care and perhaps we'll be working together again someday.
Katie (Judah) Hinrichs
Cassi,
What a terrific way to carry on Elli's journey as well spread awareness of CDH. Please keep us updated as I am wanting to help. Friends of ours put together a memorial golf tournament in Ava's name for our family (unfortunately, it was cancelled, but hopefully it can be reshedule in two weeks). Anyway my point to this is that my husband and I thought that we would like to make this a yearly event to give the money to something we believe in, in Ava's name and would love to help your foundation. It is not set in stone yet and we are still discussing it, but it is definitely something we are looking into. So please, keep us updated on the foundation so we can help as much as possible. Thanks.
Amy
I will visit Kaden's blog, thanks for spreading the word.
Cassi
Thank you for letting us know about Angel Kaden. It saddens me to know that yet another baby has lost their battle against CDH. I pray that his parents find comfort in knowing that he has earned his wings and has a perfect little body and that he's happily playing with your sweet Angel Miss Elli. I know you will find a way to spread awareness about CDH. Maybe Oprah would be the way to go, she's a powerful person and millions of people watch her everyday. Maybe writing an article for a major magazine or giving an interview to a magazine would be an option. I just know that you are an incredible writer, you have told Miss Elli's story so beautifully and accurately. Not only do you know about the medical side of CDH, you also know it from a parent's view. You'll know what it is that you are supposed to do, you'll feel it in your heart. Look for a sign and listen to your heart, then tell Miss Elli's story, tell them about your beautiful baby girl and about your journey together. So many people have followed and continue to follow Miss Elli's journey and thanks to your updates, we love her so much. My thoughts, love and prayers continue for you and Brian, I pray for love, strength, peace, understanding and guidance for you.
May you be blessed with Angel Kisses everyday from your precious little Angel Elli.
Love you,
MaryBeth
Cassi,
Just wanted to let you know that you've spread awareness in Maryville and all over the country through Elli's story. Any foundation you would start, we would love to help. Still wearing the bracelet and seeing them around St. Francis too. Thinking of you and Brian and praying for you.
Andrea
Cassi,
I don't know what to say as I know nothing will take the pain away. I know we don't know each other that well, but it tears me apart on what you are going through. I wish I could have been at the service to support you and Brian and I wish I could just be there for you in your times when you feel alone. We could just sit there and not say a thing. You had an amazing little girl who went through more physically than most adults do in their lives. Thank you for posting as it is a way for me to check up on you two.
Love Amanda
Cassi, baby you still amaze me every single day!!! You have spread awareness to all of us!!! I have learned so much more from you than from any STABLE or NRP class I have ever taken!! They make CDH sound like something that is easily dealt with-intubate and surgery-that is truly what we learn!! And because of you, we now know so much more! I will always be here for you no matter what-I hope you know how much I am going to truly miss you!! I also want you to know that everytime I look at Elli's bracelet, it brings tears to my eyes!! You don't know how many people have asked me about the bracelet and what it stands for!!!! You, Brian and Angel Elli have touched the World!!! All of my love to you!!!
Cassi,
Just wanted to let you know that you've been on my mind, so I thought I'd leave a little note letting you know I'm thinking about you. I've been praying for you for strength to walk through your next journey. You are an awesome person, Elli was so blessed to have such a wonderful Mommy and Daddy. I know she's watching down on you, giving you strength.
May you be blessed with Angel Kisses everyday from your precious little Angel Elli.
Love to you and Brian,
MaryBeth
Hi Cassi,
Can I get your email adddress? I have some info I wanted to share with you. Just send me a quick note cigi@cox.net.
Thanks!
Chrissy
Cassie,
We are so upset about Kaden too! I am sick of CDH taking our babies. It seems that there is no sense of urgency to determine what causes CDH. Children's Hospital of Philadelphia is one of the best hospitals for CDH treatment. They have a great program for survivors of CDH that is one of a kind. When Matt and I ask about sending donations for CDH research we were originally told that we could give to the program for surviving CDH treatment. We agree that is a great cause but we really want to see research on the cause and possible prevention of CDH. They opened a fund in Will's name which was wonderful but we were both surprised and troubled to know that one did not already exist. I am so happy to hear that you are actively thinking of the right way to raise awareness. Matt and I are definitely interested in participating once you determine what you plan to do.
We continue to pray for you.
Also, you may want to check out the Caring Bridge site for Megan and Nik Larson. They are expecting a son any day. They are from Alaska but have relocated to Denver for their son's birth.
http://www.carepages.com/carepages/johnmichaellarson/updates/1721637
Take Care
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