I am sure this is probably part of the rollercoaster ride, but I am really getting sick to my tummy:( Kaden is really struggling to keep his Oxygen levels up so they just made us leave the NICU and may be putting him on ECMO. This really scares me, but if it is what he needs... Craig and I are so tired. We have gotten 2 hours of sleep in two days, and I cannot even function. Please, share your ECMO stories with us--I am in need of some serious encouragement. It really just kills me to hear how sick he really is.
Keep praying for us and our little fighter. I will post in the morning...
Posts
Remembering Uncle Frank
10 months ago
awww.. Kristi! I was staying up hoping for an update. I have been praying for you guys all day. Just remember, this is normal in CDH babies (the doing well, then not so well) . I don't have an ecmo story for you but go read Carter's or Noah's. Noah's is a good one if you haven't read it before (probably have read Carters). Anyways, hang in there... I will continue to pray for you and your sweet baby. :-) MUCH LOVE!
ReplyDeleteThis is from Noah's blog..... "After a rough second day of life, Noah's lungs were crashing & he was placed on ECMO for 6 days, and at 9 days old he had corrective surgery. After 5 weeks in NICU we were able to bring Noah home on oxygen, one of the quickets exits the staff has seen for a little guy on ECMO- thank you Lord! Other than some bumps in the road along the way, there has been no stopping him!"
ReplyDeleteJust wanted to share!!!!
Kristi, thanks for updating in a time like this. Joseph went on ECMO in less than 12 hrs on being born. The conventional or the high frequency ventilator where just not enough to help him, he needed ECMO to be able to rest. I never though of ECMO being a bad thing, I know it has its consequences but if it is what he needs to survive is a good thing. At least they have ECMO now to give babies a chance to live. Without ECMO we wouldn't had Joseph here for 23 wonderful days. Is a little rough seeing your child on ECMO but you get used to it. Joseph had intestines and stomach in his chest and while on ECMO the stomach and part of the intestines went down by themselves, which help his lungs expand a lot, he had more lung tissue than they though. While he was on ECMO we where able to massage him, put on lotion, change his diaper, etc. One thing that scared us was how swollen they get. Its scary looking, they no longer look like a newborn and more like a 4 or 6 months baby.There's two moms that where my inspiration while Joseph was on ECMO, Carter's mom (Kellie) and Sofia's mom (Jen) they have two beautiful healthy cdh babies and both were on ECMO. Kellie was very nice and helpful to me. If you have any questions about ECMO email me cdh@sky-carla.com I will answer the best I can. Stay positive.
ReplyDeleteWe are praying for Kaden!
Hugs,
~ Carla - Joseph's mom (2.3.09 - 2.26.09)
Craig and Kristi,
ReplyDeleteI am sorry to hear that Kaden may need ECMO. Remember that the purpose of the machine is to give your baby a rest and a chance for the doctors to have time to figure out what he needs, while having the machine support his body. It is terrifying to hear that your child is so sick that he needs the support of ECMO and Carter was given a less than 50% chance of survival once he went on ECMO...BUT, we were told he would not survive through the night without it, so 50% sounded much better than 0%.
Please do not hesitate to email me kzmyers@yahoo.com and I will send you my cell number. Carla and Skye also have it. While we are not experts on any of this, I can tell you that Carter had a long, hard fight and I can try to answer questions, listen to you cry or scream...whatever you need. We rode the scary rollercoaster for 115 days (he was on ECMO for 18 days).
Sending many prayers your way.
-Kellie
p.s. Carter went on ECMO Oct.9 2008 if you want to read our blog for details.
ReplyDeleteHi Kristi and Craig,
ReplyDeleteWe don't have any experience with ECMO but we are praying that it will give Kaden the strength to fight. Keep staying positive, Kaden will definitely pick up on it. He is probably just scared- after all, it was so nice in mummy's tummy and all of sudden he's surounded by all these tubes. Continue to tell him how great he is doing and that he will go home soon. Kristi and Craig, your son is a strong one, just remember what he has been through so far and how brilliantly you as a family have done. Keep your spirits up, he will make it through. We are praying for you.
Big hug,
Ingrid, Alex & Alina
Hi Kristi and Craig,
ReplyDeleteSorry to read this update, but as the others have said, ECMO, unfortunately may just be the life saving option for Kaden.
(I do not have any experience with this, yet, but I have been in touch with other parents who have and they DO have survivors!)
We wish you all the best! We lit a candle for little Kaden yesterday and our entire family is praying for him.
Hang in there,
HUGS!
Sheryl and Tom
Kristi,
ReplyDeleteAll of you are in our thoughts!
I don't have any experience (yet) with ECMO. We'll be pulling for Kaden here in Phildalphia.
If need to talk let me know,
Holly
Kristi,
ReplyDeleteI don't have an ECMO story, as Kamryn hasn't been born yet, BUT... this is to save his precious life. We have to think positive and keep praying that this is just to save his live and do positive things for him. We are praying so hard for Kaden, that his levels even out, and he beats this defect. And you and Craig as well to find the strength you need to get you through each exhausting day. God is right there beside you, Craig and Kaden. Remember that!!!!!
Love,
Stephanie
Brooke and Kamryn's Mommy
I am sorry to hear that Kaden may need ECMO. We had a scare with EMCO when Addiosn was just 2 days old, but they were able to try other means and she did not go on ECM until 8 days later. As you know Addison was on ECMO for 12 days and it actually did help her in the beginning. She just retained too much fluid and was getting an infection aroung the cannula site. Also, what really helped Jason and I was that we would site by the bedside and listen to the doctors when they were doing rounds or when they were with Addison. It really helps you understand what is going on when they tell you things like he may need ECMO. Please give me a call and I can tell you more. You should have my number. If not email me and I will call you!
ReplyDeleteHello Kristi & Craig,
ReplyDeleteI have been following your blog and praying for Baby Kaden. I have a CDH baby, she's 14 months, however, I don't have an ECMO story. What I do know is that this machine gives sick babies bodies a chance to rest so they can have the strength to fight CDH and undergo repair. CDH is very scary and unpredicatable, but it IS beatable. Trust in the doctors you chose, your family, friends & cyber friends prayers, and of course God. He alone knows the plan for Kaden. Love him each moment. He will fight for you and his life.
My prayers continue for all of you.
Sue Kozik
Hi Kristi,
ReplyDeleteHang in there hun. It is part of the rollarcoaster. All of the doctors at MN Children's say great things about ECMO, as does a friend of mine who is a nurse. ECMO saved her baby nephew's life. Because my Ava is no longer a candiate for ECMO, she will surely not make it. ECMO is a great technology that gives these babies another chance to get better.
Thinking of you all day and night!
~Lisa
Kristen went onto ECMO after 36 hours. I was scared just like you. They found a shaded area in her brain, and we feared that she would have to come off. They found that the stroke had occured just before they put her on the circut. They continued to chug away. After 7 days they tried to wean her off, but she wasn't having it. She is a RCDH. So they ended up operating on ECMO. I was so fearful of the bleeding. Away she went, and back she came with a gortex patch and everything back where it needed to be! She came off of ECMO after 12 days. The Dr's call her their little miracle. I pray for your baby and check your blog many times daily for updates. I know it's easier to say than do, but stay strong. *hugs*
ReplyDelete(((HUGS))) Kristi and Craig. Praying for sweet Kaden that his oxygen levels come up. Please, try to get some sleep and take care of yourself too. Getting run around makes it easier to catch an illness and have to stay away from Kaden, so try to get some sleep, even if it is a nap. (Speaking from experience, I was not allowed back into the NICU until I was healthy.) Ask the hospital for an overnight room to be close to Kaden while he is so critical. All CDH babies are very sick when they are born, some worse than others. Ian was given a 5% chance of making it through the night without ECMO. ECMO gives the babies' heart and lungs time to rest and to get stronger. They give you the list of risks with ECMO and it is very scary. My doctors operated on Ian while he was on ECMO on day 5, but some doctors will not operate on an ECMO baby. He was able to come off ECMO on day 7. Doctors have to feel completely comfortable that a baby has a high success rate of coming off ECMO to use ECMO. If you have questions, please email me, ctmeats@q.com. Ian has heart related issues from being on ECMO, but I wouldn't have my baby with me today if it was not for ECMO. ECMO can save a babies life and Ian leads a normal 5 year old life. Thinking of you and praying for strength and peace for you and Craig as you face the possibility of ECMO and praying Kaden is strong and they can get him stablized.
ReplyDeleteMuch love, Tracy - Ian's mommy
Kristi
ReplyDeleteI couldnt sleep well last night. I have been thinking of you and praying for Kaden. Call me anytime. stay strong! give Craig a hug for me and have Craig hug you for me.
I love you guys!
Liz
Lots of prayers on the way, even more than we've already been praying. (((((((((((((((Kristi))))))))))))))
ReplyDeleteLittle Davis didn't need ecmo, but he came very close. The one thing that kept me staying positive was knowing how many babies ecmo saved. We were scared to death of ecmo but even scarier is the thought of what would happen if there was no ecmo. We are thinking of you constantly and praying for strength for little Kaden.
ReplyDeleteKristi we are praying for you more than ever right now hun...hang in there we are all here for you and Craig and of course baby Kaden
ReplyDeleteKristi I have been watching and stalking you on TWW my prayers are with you and your little man We all know he is so very strong already lots of prayers are being sent your way.
ReplyDeleteAmanda (mrs_oz)
Sending many prayers for baby Kaden!
ReplyDeletePraying for you all! I of course don't have any stories to tell but I am sending love and prayers.
ReplyDeleteWe are praying for you and baby Kaden!
ReplyDeleteThis is Dottie Park in SC. Nanna Mary works with us. We are Dr Dorothy Park and Associates, Optometry and Ophthalmology. We love you all and already miss Mary but know that she is doing God's work in California!
ReplyDeleteOur congregation at Ebenezer Lutheran Church lifted up prayers for Baby Kaden, his family and team of doctors. We asked that God hold him in His hands and give strength to all involved.
Calvary Baptist Church is praying for you guys.
ReplyDeleteChris W.