I Can't, I'm Not Wearing a Princess Dress! - New TR link!!!!

[jandlinz]

Glad to hear he is doing good with his treatment. Happy Father's Day!

 

[disneychristmasx3]

Just wanted to pop in to say that he's here. He was born Thursday afternoon. Things were great right away but got a little bit rocky Thursday night / Friday morning. They transferred him to get the treatment he needs and he seems to be responding as well as can be expected for now.

DW is doing fine and because they had to move him and she was recovering so well she was actually discharged less than 24 hours after delivery.

We're just hanging around the hospital watching and waiting.

Andy,
Have been reading along not only your thread but also @Steppesister and @pkondz pre-trip and trip reports where you visit often. I have been praying for your family during your journey. I am a pediatric nurse at Duke and we see CDH often. Outcomes are much better these days than years ago so if all goes according to plan your little guy will do well. Praying for you all. It will be a rocky road over the coming days so look after yourselves and each other

 

[DISNEYMOON10121991]

Congrats on being a daddy again!
Also came over from Steppesister PTR where I learned there was some worries over the baby. Also had seen your comments on pkondz's trips. You guys crack me up!
So glad I binge read this today to hear the newest update. He's here
Sending good thought to your little guy and your family as you travel over this hill. Hoping for only good outcomes and news along the way.
Let the doctors take care of him and you remember to take of yourself.

 

[afwdwfan]

 

[disneychristmasx3]

He's precious! Lots of fluid on board but that's part of the process. Hopefully stable enough for surgery soon

 

[jandlinz]

Andy, he is precious. What a beautiful blessing! We'll put him in our prayers tonight that he gets stronger!

 

[afwdwfan]

Had an echo this morning. Things are looking good and they started pulling off the excess fluid last night. May be looking at surgery later this week or early next week if things continue on this trajectory.

 

[FencerGirl]

Congratulations, Andy. I usually just lurk on your reports, but I'm praying for your entire family!

 

[MissMaryQC]

That's great news Andy! He's a precious little one. I wish the best for you guys.

 

[cajunfan]

What a beautiful boy! Okay...except the belly button area, but I could not clean my son's...had to have someone else do it...just made me want to pass out for some reason! lol!) So glad to hear he is moving in a great positive direction! Thanks for sharing with us! Prayer continued for you folks!

 

[afwdwfan]

What a beautiful boy! Okay...except the belly button area, but I could not clean my son's...had to have someone else do it...just made me want to pass out for some reason! lol!) So glad to hear he is moving in a great positive direction! Thanks for sharing with us! Prayer continued for you folks!

If you think the belly button looks bad...

 

[franandaj]

Just stopping by to comment that I am keeping up on reading, but in the middle of busy times (which I know you have enough on your own hands that you don't need to hear about!)

I just wanted to say that I'm glad things are moving along. Every time I see those pictures with him hooked up to all the tubes, I feel so much for you and your family! Good that he's on the right track and hang in there!

 

[disneychristmasx3]

Had an echo this morning. Things are looking good and they started pulling off the excess fluid last night. May be looking at surgery later this week or early next week if things continue on this trajectory.

Sounds like everything is going as well as you can hope for. Is he on ECMO?

 

[afwdwfan]

Sounds like everything is going as well as you can hope for. Is he on ECMO?

Yes. Working on getting the fluids off now. Having a much easier time controlling bp and the ecmo flow and vent pressure have both been turned down today.

Honestly I'm fascinated by this stuff. I wouldn't say this to one of our nurses but it reminds me a lot of a spray or liquid fertilizer pump system we'd use on the farm. Only it is obviously much more precise. I think I've figured out how to run it... but I'll be good and keep my hands off.

 

[disneychristmasx3]

Yes. Working on getting the fluids off now. Having a much easier time controlling bp and the ecmo flow and vent pressure have both been turned down today.

Honestly I'm fascinated by this stuff. I wouldn't say this to one of our nurses but it reminds me a lot of a spray or liquid fertilizer pump system we'd use on the farm. Only it is obviously much more precise. I think I've figured out how to run it... but I'll be good and keep my hands off.

It's amazing in my opinion too! How people come up with these ideas and are able to actually try them out on a real tiny human being the very first time! That's why I'm involved in clinical research! But yes please don't touch

 

[gonedisneycrazy]

Had an echo this morning. Things are looking good and they started pulling off the excess fluid last night. May be looking at surgery later this week or early next week if things continue on this trajectory.

Sending Prayers...

 

[natebenma]

Sweet picture! Continuing to think of your family and hoping DW is doing well. Hoping for continued improvement and a successful surgery. Have the kids been able to visit or does that have to wait?

 

[vamassey1]

Your son is beautiful! I'm praying for your family too. It's good to hear that things are progressing. Take care of yourself and your family.

 

[GoofyFan1515]

Had an echo this morning. Things are looking good and they started pulling off the excess fluid last night. May be looking at surgery later this week or early next week if things continue on this trajectory.

Good to hear things seem to be progressing well. Sending thoughts and prayers it will continue down that path!

Yes. Working on getting the fluids off now. Having a much easier time controlling bp and the ecmo flow and vent pressure have both been turned down today.

Honestly I'm fascinated by this stuff. I wouldn't say this to one of our nurses but it reminds me a lot of a spray or liquid fertilizer pump system we'd use on the farm. Only it is obviously much more precise. I think I've figured out how to run it... but I'll be good and keep my hands off.

It's always good to find that silver lining in every circumstance.............

 

[afwdwfan]

We did a test run coming off ECMO today and he did well with it. The surgeon wants to wait until Monday for surgery though so they're keeping him hooked up until tomorrow. He'll come off the circuit tomorrow and have surgery on Monday.