I know it seems like I post alot, but I find it very therapeutic. We went up to see Kaden a little while ago and I got to change a poopy diaper--I really never thought I would get that excited about changing a diaper under any circumstance. Kaden is feeling all your prayers. He is really hanging in there and fighting hard to make baby steps in the right direction. While we were there, his doctors (Dr. Liz & Dr. Roberta) decided to try to see if it was mucus in his lungs that was causing the collapse, and IT WAS! So, after suctioning out some of it, they are now going to try and give him breathing treatments every 4 hours. This will hopefully help with being able to re-open his air sacs. Dr. Liz just left our room. She came by to talk to us on her way home. She (and everyone else) has been so great to us and Kaden. I think she has a crush on him! She said that we should be encouraged by the fact that his body is really doing quite well under the circumstances. His heart is working great, his organs are functioning well, and his brain scans have all come back clear. We just have to get over this lung tissue issue :) Here is his pic from this afternoon. You can see he is very swollen, and his little eyes and "fish lips" look so painful, but if you see any pictures of other babies on ECMO they all look the same. He is still the most beautiful thing I have ever seen...
Please continue to pray for lung functions and pee pee making. We definitely feel God with us, and Kaden is fighting so hard--he must be listening to all the "CDH Angel Babies" whispering in his ear that he can do it!!
On a side note. We got to meet the family across from Kaden's isolet. Their son, Collin, was born on Thursday with undiagnosed RCHD. He was brought here Code-3 from another hospital about 30 min. away. He has been doing well and is having his repair surgery as I type. I cannot imagine what it was like for them without any warning. They are a young couple and have a 1 year old at home as well. Please include Collin in your prayers--that he does well with the repair and has a quick recovery.
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Hi Kristi,
ReplyDeleteYou and Kaden have been on mind all day! I am happy to hear that despite everything Kaden is going through he is fighting! I will continue to hold him in my thoughts and prayers! Please take care of yourself too! He needs his mommy to stay as positive as she has been. HUGS!!!
Hi Kristi, Blogging is very therapuetic after a long day in the NICU. I know it was for me. Kaden looks beautiful, swollen and all. They estimated Max weighed over 15 pounds at one point and he was able to get it all off after a few days. We have been praying for lung function all day. I remember changing a poopy diaper! :-) It's weird how exciting it is.. and to think he is moving all that with his organs still in the wrong place, GO KADEN! Love you guys!
ReplyDeleteKeeping you all in my prayers. I remember that it was always helpful to post updates too. It also helps you to understand and recall what the doctors have told you. Kaden is a handsome boy and so strong. We are keeping him in our prayers.
ReplyDeleteRemember to take care of yourself too.
praying hard for your sweet Kaden. he's a strong little guy. praying for lung function and for pee-pee. i will add Collin to my prayers as well.
ReplyDeleteJoanne (John Michael's mom R-CDH 3/11/07)
What great news that Kaden has already had a poopy diaper...shows that everything is working, even if it is in the wrong place. I hope you see some big improvement with the mucus being removed and the breathing treatments. Kaden looks a lot like Ian did when he was on ECMO too, all puffy. Kaden is beautiful, just like his mommy. It is good news his heart is working great and the brain scans are all great too. Keep the updates coming...love to read how your warrior is doing. Many prayres for Kaden! I hope he has a restful night.
ReplyDeleteHugs, Tracy - Ian's mom
i love coming on here and seeing pics of kaden fighting. it's such an amazing and inspiring sight to behold. know that your little man is touching lives everywhere. who knew when i met you on the april board of tww that your baby would so impact the lives of me and my dh. i want you to know that we have many people praying for you guys. i hope that you see great improvement now that the mucus has been removed and yay for getting to change a diaper! it's the small things that mean so much when you're faced with such overwhelming obstacles. just know that God is not overwhelmed and He is in control of everything surrounding that nicu right now.
ReplyDeleteLots of prayers coming your way. Fight Kaden Fight!!! I love seeing your updates and photos of your precious little boy. He is so cute. I am happy you got to change his nappy. I was so excited to change Skyla's nappy for the first time too. Im sure Skyla is one of the Angels watching over Kaden and all the other CDH bubbies fighting now. Praying for Collin too.
ReplyDeleteKristy, mummy to angel SKYLA, LCDH
http://skylacdhbaby.blogspot.com
I got chills reading your post. It's like living Carter's story again. While we were at Duke and Carter was very sick, an undiagnosed LCDH baby, Bodee Vierig, was flown in from another hospital. I remember wondering how they were coping with the terrible diagnosis and not having any time to adjust. They also had a 3 yr old at home. We ended up sharing a house with them and have become very good friends. Embrace that family for support. Carter's left lung also collapsed at certain times while on ECMO and after suctioning + breathing treatments it would reopen. We figured out that the keys to Carter's success were suctioning, sedation and surgery!
ReplyDeleteKaden's fishy lips are so cute! I can't believe you got to change a diaper. What a wonderful mommy moment you had. It really makes you appreciate all the little things, doesn't it?
You are doing such a great job!
Prayers,
Kellie
Kristi,
ReplyDeleteI don't know if you know this, but you can write up a blog post and save it as a draft, rather than post it to the world. I did that A LOT when I wanted to vent or ramble or keep track of details, but didn't want the world to read them. You can always go back and read them later, too.
What about having Jessica create a blog of her own?? You can make it private so that only those invited can read it (they have to sign in with email and a password). Might be therapeutic for her as well.
Just a thought :)
As Shane would say Poopy in your Doopy. I remember how happy we were to see Nayeli Poop. Shane and I took turns changing her diaper. It was such an exciting moment. Kaden is so beautiful. I think he has more hair than Nayeli. Kaden keep up the fight!
ReplyDeleteRomans 8:25: “But if we hope for what we do not yet have, we wait for it patiently.”
We think about you guys all day. I'm praying for Kaden to get better and for his lungs to expand the most they can and work like they should. He's a very strong lil boy that will beat cdh. Even though he is swollen he is still very handsome :)
ReplyDeleteHe has a lot of angels watching over him. Keep fighting Kaden!
~ Carla - Joseph's mom (2.3.09-2.26.09)
We are saying tons of prayers here in NC! And we love all the posts! I know how much it helps to write it out so keep on writing girl!
ReplyDeleteIf you need anything please let us know. We'll be keeping Collin's family in our prayers as well.
Love you tons girl,
Jes
Hi Kristi,
ReplyDeleteOnce you have a CDH baby, you become part of a community unlike any other. We all feel like Kaden is part of our families and we love and appreciate all of the updates on our new extended family member! We send our love and support to all of you. Many prayers of lung functions (with clean mucus-free lungs) coming your way! We also hope that you and Craig are getting some rest, too. Kaden needs you guys to be well to help him through his fight.
Congrats on the poopy diaper...way to go little Kaden! :-)
Best wishes,
Sheryl
I was so thrilled to get to work this morning and see you changing his diaper!!! What a thrill, not to mention the mucus in his lungs. Praise God! Some babies despise being suctioned, but Grayton loved it. Her stats would just rise when the nurses did this to her...maybe Kaden will be like that, too. Especially if it helps his lungs.
ReplyDeleteWe didn't know about Grayton's diagnosis until she was born either (also a RCDH). If Collin's parents want to talk, they are more than welcome to contact me. I have a direct 800# work number they can call me on. my email address is leigh.creekbaum@ubs.com If I could offer one bit of advice that helped me keep what little sanity was intact - don't go on this internet and read all the stories, statistics, etc. We just strictly listened to the doctors about what was going on with Grayton and, as they kept telling us (and if we all had a $ for every time we've heard it, we could fund research and a cure for CDH in no time), "Every CDH baby is different." However, as old as it got to hear, it's so true. By not going on the internet and researching, for me, I was able to stay positive for Grayton and didn't compare her to others' CDH journeys.
Just thought I'd pass that along. While I didn't look at anything while she was in the hospital, I spent hours and hours "catching up" on CDH, as well as everyone's stories. CHERUBS was huge in this healing for me.
By the way, I don't think you post too much at all!!! I love reading your stories and am constantly looking for an update.
Hope Kaden's day is a great one!
Love,
Leigh
www.thecreekbaums.blogspot.com
Kristi,
ReplyDeleteI am thinking about you and Kaden all the time. I feel like you, Craig, Kaden are part of family. I know that he has it in yim to beat CDH and you are in excellent hands at UCSF. You will be bringing hom in no time and this will feel like an ancient memory!
Hi Kristi. I am a friend of Maxton's Mommy. Just wanted to show you some love.
ReplyDeleteI'll be praying you all and for Kaden and will do the same for Collin and his family too.
Love & prayers from KY
That's great news about Kaden. We remember the nappy changing times...we would always rush to the hospital to make sure that the nurses didn't do it before we got there. It's such an intimate moment with your little one...and don't worry, in a week, you'll even forget about all the tubes and wires :0). We are thinking about you guys and hoping that Kaden continues to make steady progress.
ReplyDeleteHugs,
Ingrid, Alex & Alina
He is so beautiful and he is such a fighter. Kaden has a lot of prayers in his corner. We have been following his journey closely. Nice job on the diapers. It is such a thrill to be able to interact that closely with your child. You are wonderful parents and may God bless your family.
ReplyDeleteKristi and Craig
ReplyDeleteKaden and both of you on my mind constantly. Keep up the blog as I think it is good for you and for everyone following our little mans progress. Things seem to have had a more upswing last night and I just know it will get better. I've cried and prayed and prayed and cried and I feel very good about our outcome. I want you both to stay healthy, especially you Kris so that you can keep you strenght up for Kaden. Craig I know it's hard but you are Kristi and Kaden's pillar of strength. You have been wonderful through this whole thing so far. I can't believe it has only been 5 days, it seems like 5 months. Ben sends his love and concern for you both and we want to bring that grandbaby home soon. See you later today with Logan. I love the latest pictures of Kaden holding Craig's finger. The power of touch can go a long way. Love you. Mom
Hi there,
ReplyDeleteI finally was able to find Kaden's blog! Thank you very much for including us in your prayers and blog.
Both of you have been a major help in getting us through this. We pray for you guys and your little one every day.
Craig, Kristi, Jessica, Christopher, Logan and Kaden, We are praying for you all as you go through this trying ordeal. I know GOD is watching over you all and we pray each day for Kaden's strength. I wouldn't expect anything else beside's "a fighter" coming from Craig's side. We Love you all and wish for the best! Momba has been keeping us updated each day. Love, Aunt Dee Dee & Uncle Doo Doo
ReplyDelete