Pray for Baby Caleb

Ember

Ember

Mrs. Tek7
Hi Friends

Don't know why it just occurred to me to post this here. But please keep baby Caleb and his family in your prayers. Caleb has a congenital heart defect (which they knew about and could plan for--as much as possible--before his birth). He had his first open heart surgery when he was just a few days old, which he tolerated well. He went home to grow as much as possible before his second planned open heart surgery.

He did well, got to go home, and was such a smiley baby. Things happened though and he had to have his second surgery much earlier than they had hoped. At first he was doing amazingly well, but then things went downhill. He is still with us, but they fear his heart will not make it, and while they're trying to get him on a transplant list "just in case," they fear he either won't make it long enough to get a new heart, or he won't be healthy enough to receive it should one come up.

Caleb's family has been an amazing, amazing testimony through it all. We are still praying for a miracle. The more immediate prayer request: tomorrow (Monday 6/17) they are going to try taking him off of the ECMO (a type of life support) again to see how his heart does on its own (he was originally on it just to give his heart some time to rest and heal after the surgery...he did well with the first wean for a while...but then he went downhill rather suddenly). Then he went back on it because he had to to stay alive, but they still try to get him off it if they can because it carries serious complications like bleeding in the brain. They're not sure if he can handle doing this repeatedly though.

It is difficult to condense their story, so you can follow it here if you wish. Their "likes" have doubled in the last week or so. The power of prayer has been very evident. How amazing to know that literally tens of thousands are praying for this little boy, his family, and his doctors.

https://www.facebook.com/pages/Pray-for-Caleb/385810801497605?fref=ts

I don't know the family well, but I grew up in the youth group at church with Caleb's momma.

Thank you!
 
Last edited:
ursen said:
Have prayed. Should I add it to my rotational list?
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Thank you. That would be wonderful.

Here is the latest update:
Sometimes medical personnel have the "best" analogies.

Today we were told that Caleb will be listed for transplant tomorrow but that his chances are still slim. It was reiterated that everything needs to fall into place for this to work and that it's like "We're standing in the middle of traffic, hoping we don't get hit."

Well thanks for THAT ray of sunshine! ;)

Matt and I have had the opportunity to share with the staff here where our Hope lies more the last few days than at any point in Caleb's care prior to this week. We continue to pray that he will use Caleb to point others to Christ. Our deepest desire is that he would do that through a miraculous healing of Caleb.

Caleb has continued to have some seizures here and there, but so far it appears that they are isolated to one spot on the brain and they don't believe he's had major brain damage or a stroke. God continues to protect our baby even in the most trying circumstances.
God is sustaining us. We are weary, scared, and hurting for our son, but we've found the strength today to laugh, kiss each other and remember that God loves us and Caleb more than we could ever imagine.

God is hearing your prayers for strength in the storm. Please continue to pray for this and for Caleb's comfort and healing.
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Thank you! He is having some seizures (as I understand it, a side-effect of the ECMO/life support), isolated to one spot on his brain. They aren't visible just looking at him, but they show up on the EEG. They are optimistic he could recover from these, but they will need to stop for him to eligible for a new heart. Please pray for the seizures to stop for good.
 
Thank you for all your prayers. Caleb hasn't had any seizures in about a day and a half! His temperature had dropped which raised some concerns that he had an infection, and all cultures game back negative! So that's two bits of great news. He has been showing a bit of a "temper" today--higher heart rate and lactate levels. They've adjusted his feeds which hopefully will help some, but part of it is probably just being more uncomfortable the more alert he becomes. Today they're going to start taking down some lines and tubes and weaning him off the ventilator, so please pray that will go well and will result in a happier baby. On a lighter note, a couple of the St. Louis Cardinals stopped by today and brought build-a-bears for the kids and took pictures with the family. :)
 
That's great! Thanks for the update, praying that Caleb's condition continues to improve.
 
Caleb is now eligible for a donor heart. :) Praise the Lord he has come so far. They say it averages 1-3 months for a heart to become available, and for Caleb it is a race against time. Please pray that there will be no setbacks until he can receive a heart, and pray for the family who deals with the unimaginable heartache that results in Caleb receiving one. Thanks again. :)
 
Friends! There have been many ups and downs for Caleb in the last few weeks. But I must urgently ask for your prayers again because Caleb is up for a heart transplant TODAY! His family had already resolved to fast and pray today, so this is a huge answer to prayer. They are very happy because Caleb must have a new heart to live. But it's not exactly minor surgery, so it is quite scary as well. Please pray for everyone and that the surgery goes smoothly and Caleb tolerates the new heart well. And please pray for the family mourning who has given Caleb this amazing gift. Thank you!
 
The heart we've accepted for Caleb is considered high risk. Out of respect for the family who has given selflessly, we won't give major details as to why, but this heart is a higher risk for carrying infection. The heart has been tested and come back negative for any disease at this point, but there is a chance it could possibly develop something later. Matt and I discussed it and decided there will probably not be another opportunity, felt it was clearly God's timing and readily accepted the offer.

Also, hearts can take a beating as they travel from one child to the next. They basically have a 4 hr. time limit between when it leaves the baby who has passed and when it needs to be inside of Caleb. There's a chance that the heart could arrive and when the team looks at it, they could decide it's no longer a good idea to carry through with the transplant. I can't imagine how devastating that would be.

Please pray for the health of the heart that will, Lord willing, soon be Caleb's. Aside from the possibility of a disease that could turn up later, the team feels this is a really good heart for Caleb. Please pray that this is Caleb's perfect match and it holds up beautifully while it makes its way to him.

They've told us to anticipate the time changing as it gets closer, but for now, Caleb is scheduled to head to the OR around 7:45pm and the heart is expected to arrive around 1am tomorrow morning.

We'll post again later! Thank you for praying along with us!
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https://www.facebook.com/pages/Pray-for-Caleb/385810801497605 There will likely be a lot of updates in the coming hours.

Thank you for your prayers!
 
Okay I haven't updated here in a while, but wanted to let you know Caleb is really making strides. He has been weaned off of some of his meds, he's off his IVs. He does have a trach which was a hard decision for his family but ended up being the best thing. As of a few days ago, on his 6 mo birthday, he moved out of ICU and he's in step-down, which means that, while it could be a while, they are preparing for bringing Caleb home. Little guy has been through a lot and he has a long, long way to go. But his tiny little life...and his parents...are already such a powerful testimony. Thanks all for your prayers.
 
Thanks for the update on the little miracle who is still fighting for life so hard.
 
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