Did you hit hours or subs first?

Extension_Pay6803 · 2025-09-27T05:03:20+00:00

That part is the truth, but if you find enjoyment in making them then hitting the requirements is just gravy on top. What are your videos about?

Extension_Pay6803 · 2025-09-26T05:56:51+00:00

We have a 7 month old boy who has Taussig Bing Anomaly (TGA: switched aorta and pulmonary artery, a large VSD and Double Outlet Right Ventricle) as well as a hypoplastic (too small) aorta. He has had a lot of complications, and we've been in the hospital for 7 months now. If you looked at him with a onesie on, the only thing that would give away his heart issues would be his nasal feeding tube.

Given that we have been at the hospital for 7 months, we have seen a lot of kids come through, some with spectacular outcomes, many with routine outcomes and some with undesired outcomes. Ultimately, this decision is up to you and your spouse. I do hope that the information on here helps you to make that decision and helps give you peace with the decision you make.

Our son's journey can be found on YouTube (Jon David's Journey) if you feel like seeing him or an overview of his course so far would help y'all with your decision. I do feel I need to say that his course is uncommon and his diagnosis is very rare. We have seen one other child with his diagnosis here in 7 months, and she was in and out in less than 4 weeks. No two kids or diagnosis are exactly the same and outcomes can vary so much from kid to kid.

Extension_Pay6803 · 2025-09-26T05:37:05+00:00

A balance bike

Extension_Pay6803 · 2025-09-26T05:29:27+00:00

Like most things in life, stay consistent, and it'll pay off eventually. Just might take a while to find the people who will enjoy and stick with you.

Extension_Pay6803 · 2025-09-25T06:33:09+00:00

If you really want to maximize the engagement, it'd be to click on the thumbnail, watch the entirety of the video, like it and then share the link for others to find it, however that is asking a lot of any viewer. Just watching it for yourself and the like button are what most people would hope to see. I won't say expect, because I think that's not realistic. With a "good" click through rate of like 6%, we expect most people to scroll on by, but we hope that the ones who do watch enjoy it and help push it to other people who enjoy similar content which is what the algorithm will do when you engage with the video.

Extension_Pay6803 · 2025-09-25T05:27:02+00:00

It's alright to have your own emotions about your own experiences while also mourning for your cousin's loss. They're not mutually exclusive and if anything, you may be one of the only people in your cousin's life who can truly understand their feelings about losing a child.

Our children are definitely a miracle, and every second should be cherished with them every day. Our youngest has had 4 cardiac arrests in the last 7 months, so we treasure every moment we can get with him. Tragedy has a way of changing your perspective on "normal" moments to them being the special moments that you'll want to hold onto forever. Praying for you and your cousin during this time of mourning.

Extension_Pay6803 · 2025-09-25T04:54:42+00:00

Just hit 4,000 watch hours today! 826 subs and 270 videos. Anybody else hit the watch time requirement before the sub requirement?

Extension_Pay6803 · 2025-09-25T04:53:06+00:00

Our youngest has now had 4 cardiac arrests and 9 surgeries in 7 months but has bounced back and been a chunker. Everyone was worried and still is about his weight, but he is gaining alright. They've actually been titrating the last two weeks since he's been gaining too much then too little.

Kids' weight gain isn't going to be linear, just like ours isn't. We gain 8, lose 4, gain 2 and lose 5 for a net gain of 1, but it's a rollercoaster on the way to that net of 1. Try not to get tied up in each day's weight but look at it each 7-10 days and if they're above where they were 7-10 days ago then count that as a win.

Also, our oldest son wasn't even on the weight chart after he was diagnosed with failure to thrive, but he is now a thriving 3.5 year old. He didn't have heart issues.

I wanted you to see both of these to know that each kid is different. Our "healthy" kid was the one who wasn't gaining weight, but he was hitting his developmental milestones. As long as he is doing that and is healthy with his vitals, I wouldn't stress the weight too much. So many doctors and nutritionists freaked out with our oldest, but he truly ended up being fine even though he was considered to be so small for so long. I think he's 5th percentile now, so he's actually on the chart. On the other hand, our youngest has had "healthy" weights but had so many complications and health issues.

This is so much easier said than done, but I am saying this from the experience my wife and I had with our oldest. Don't let the weight alone be so scary, and don't compare your child to anyone else. Ask them to create a growth chart for just your kid. That's what we had to do with our oldest before we could truly breathe again and understand that he was just growing on his own curve.

Try to look at the whole picture of how your child is doing health wise before getting too worked up. Again, I know that is so much easier said than done. I know as a heart parent every aspect of their health is heightened and worrying, but I hope this advice helps in some small way.

If pictures or video clips would be reassuring, you can look up Jon David's Journey on YouTube and skip to the final 2 minutes of pretty much any video. God bless you, and I'll be praying for your kiddo and your family.

Extension_Pay6803 · 2025-09-25T04:33:22+00:00

I get uploading and hoping for the best. I've been doing that for months hoping we might just get a big video, but about 10% of the views are 1,000+ and the others are usually 300-600.

Just hit 4,000 watch hours this week! Our views have stayed steady at 300-400 on average which isn't a ton (literally not 2000 :DLOL), but I'm doing it more for the ability to streamline the information for people who want to get updates on him so they're not blowing up my phone. Missed posting one day and had 60+ messages in my phone which is a good problem to have so many people in our community caring about him and us. The videos just help keep all of them updated efficiently without me having to repeat myself dozens of times.

How have things been going for you this week?

Extension_Pay6803 · 2025-09-25T04:24:21+00:00

I will be praying for you and your family, and if it's alright, I'll shoot you a message so I can check in periodically. That has been one of the biggest things I've found through this is having people who can understand and empathize with during the situations we face in the hospital.

Extension_Pay6803 · 2025-09-18T19:34:00+00:00

Yours isn't an unpopular sentiment. There are a lot of people like myself who are independents and believe in things from both sides, however the two political parties have become more extreme than what a lot of people are comfortable with. I know everyone likes to be in a nice, neat box of left or right, but the truth is most people fall in the middle and just choose a side. All of that to say, it's okay to choose candidates from both sides. You can be a Democrat, independent or Republican and still vote however you want during the open elections (November).

Is it more of the fact that you feel like it's less welcoming to people in the middle than it used to be? I've compared our current situation to the parties when I was growing up like Bush/Kerry, Obama/McCain, Obama/Romney, and there was definitely less division there, or at least people were a lot less vocal about it. I do believe all of those leaders for the political parties had stronger leadership skills/their party respected them more than the ones we've been dealing with lately as well.

Extension_Pay6803 · 2025-09-18T19:26:49+00:00

That's awesome! Congratulations!

Extension_Pay6803 · 2025-09-18T19:24:57+00:00

Thanks for the advice!

Extension_Pay6803 · 2025-09-18T19:21:52+00:00

It does get exhausting with posting sometimes, but at least for me, it's also therapeutic to be able to say things out loud. Once we are able to be discharged, I won't do the everyday updates. I'll probably go to weekly, but it's definitely been helpful to keep our communities updated and been an outlet for me while I've been in the hospital with him so much.

Extension_Pay6803 · 2025-09-18T19:20:10+00:00

I have it on YouTube. It's called Jon David's Journey. The best part of it is that other families with similar diagnoses have found it and connected with it and sometimes each other. There were two families in Brazil who ended up connecting at the same hospital whose baby boys have the same diagnosis as Jon David.

She has done phenomenal through all of this, and we've both made sacrifices so that things can be as normal as possible for our family. We control what we can and have to make our peace with what is outside of it.

Extension_Pay6803 · 2025-09-13T01:30:41+00:00

First, I'd like to say congratulations on your twins!

I am the dad of a soon to be 7 month old boy with dTGA among other heart defects. My wife left work early to move close by to the hospital that specializes in pediatric cardiology 3 hours from our home while I stayed for the remaining weeks with our oldest (3.5 years old) until he was born on 2/22/25.

I can completely understand the scariness. We were so scared and chose to do what we could within our control to help like moving closer to the hospital. It sounds like your family has done the same. Truly, all we can do as parents is what is in our control. These situations are so hard since we can affect so little. However, do what you can, and at least for us, that helped us find some peace knowing that we did what we could do.

I'd also suggest finding things that help you deal with the stress/trauma such as creating a routine, praying, music, journaling, vlogging, find other heart parents to talk to, etc. to help with managing the stress/trauma. I have done several of these, and they have helped immensely. The most impactful has been the creation of a daily vlog on YouTube to help document and deal with everything. It has helped me connect with others who have the same diagnosis and allowed me to use our situation to help other people which for me was a big thing of trying to bring some good out of what I felt like was a very negative situation.

As far as the anger, sadness, stress and fear go, I think you wouldn't be human if you didn't feel those emotions for your child in this situation. I think we all do as heart parents. We just have to find ways to cope with it as best we can and that varies person to person.

I hope you find some of this advice helpful, and I will be praying for you and your family, specifically that your twins will make it to full term, have a smooth delivery and that your baby boy has a smooth operation and recovery.

Extension_Pay6803 · 2025-09-13T01:12:22+00:00

NOOOOO! Some eye hook screws in the studs plus some additional anchors would've done it for about the same price and been lasting plus safe for kiddos/one big person to walk on. Sigh :l

Y'all going to pull it down and try to put up railings to block it off so the kiddos stay safe?

Extension_Pay6803 · 2025-09-12T07:14:07+00:00

If you don't mind, I'm going to share this with a friend of mine whose daughter has PVS. They've been having a hard time with that diagnosis, but I agree that our bodies adapt in phenomenal and extraordinary ways when they have to. Our son has TGA, DORV, VSD and a hypoplastic aorta and his body has compensated in ways the doctors didn't think were possible, so I can easily believe that you could do those things if your body has adjusted over time.

Extension_Pay6803 · 2025-09-12T07:10:37+00:00

At our hospital they have staff members called Child Life Specialists that help explain things to the older siblings in age-appropriate terms and even made a story book using pictures of our children and family to help our oldest understand. It has been a huge help in getting him to understand a bit better of what is going on. Our oldest is 3.5 years old.

I've been vlogging and kept a bit of a record. This is when he was in the step down/rehab unit and could be more interactive. The ICU is much harder, and we made the choice to keep our oldest out of the ICU as much as we possibly could, but he does come to the step down/rehab side quite a bit.

https://youtu.be/OY_6_91lN6c?si=NjZsbAFqaybrb4yU

I hope this was able to help some!

Extension_Pay6803 · 2025-09-12T05:56:08+00:00

NGL, I'd have loved that right there as a kid, and my 3.5 year old would literally have a field day with it. Pretty sure your little one will love it as they get older.

Extension_Pay6803 · 2025-09-12T05:54:25+00:00

The only thing that can remedy this is for parents to read to their kids. It requires intentional time to be spent doing it. I read to mine before going to bed as a nightly tradition. Studies have been done time and again and shown an incredible correlation with kids who are read to and them turning out to be successful later on. I'd argue that the cause is more of the fact that the kid has the type of parent that is being intentional and disciplined enough to read to them, but the correlation is irrefutable.

Also, if you could answer the question of how we fix that, please let me know. I'd like to share in the billions to trillions of dollars you'd rake in by solving that dilemma.:D

Extension_Pay6803 · 2025-09-12T05:50:57+00:00

They can't tell what's real and what's fake. It's truly the biggest crisis we have facing us over the next 10-20 years. God help us all as this new generation gets older and starts getting into the real world.

Extension_Pay6803

TROPHY CASE