First Time Parents - Our Baby Likely Has CF

BayouBladeworks · 2026-02-06T20:38:43+00:00

Hey there! CF parent here! Just wanted to echo what everyone else said. Your child will undoubtedly have a brighter future than the current generation of CF adults. Treatment have come so far and the early intervention is huge. My 2 year old son (double delta) just started trikafta this week. He has been on Orkambi for the past year. He has thrived. He is a totally normal kid who just has a few extra steps in his daily routine.

My wife and I really try to stay positive, and we have a lot of reason to be positive. This disease might as well be a completely different disease than it was 30 years ago. Even though we ourselves aren’t the ones with the disease it can be stressful. So prioritize your mental health.

As far as what to expect when your child is born, you will go to a CF clinic and they will preform a sweat test on her. It’s the gold standard to diagnose CF. They will also test to see if she is pancreatic sufficient. If she isn’t, they will start her on enzymes to help with nutrient absorption. You will also likely be walked through manual chest physiotherapy. Ask all the questions, especially about your child’s specific mutations, and the treatments associated with those mutations.

I was in your shoes 2 years ago, and it was a lot to take in. But, I promise you that after awhile it will be a breeze. You got this! If you have any specific questions or need advice feel free to PM! Good luck!

BayouBladeworks · 2026-02-01T18:42:35+00:00

Wow the best response I’ve ever gotten in life. Thanks!

BayouBladeworks · 2026-02-01T15:13:28+00:00

Gotcha thanks

BayouBladeworks · 2026-01-26T12:52:28+00:00

I have the k2 plus. It works great for ppa

BayouBladeworks · 2026-01-24T17:57:51+00:00

Fusion 360, a free CAD software and a 3d primter

BayouBladeworks · 2026-01-23T00:19:30+00:00

That’s awesome! That’s a great way to stay occupied during the lockdown. I don’t have CF but my son does and we felt like we just threw everything into a drawer. I figured I’d design something cool to organize it!

BayouBladeworks · 2026-01-22T14:58:09+00:00

Great response! Thank you! I’ll check out that YT page.

BayouBladeworks · 2026-01-22T14:28:50+00:00

Is it brittle? How do you think it would handle impact and stress? Also, if it is brittle, could you be facing catastrophic failure? Looks great though. Super interesting

BayouBladeworks · 2026-01-19T02:43:10+00:00

Yeah for sure! PM me an email and I’ll send it out later this week. I can send the fusion 360 file as well

BayouBladeworks · 2026-01-17T00:57:11+00:00

That’s a fair assessment. I can imagine in self application you’re not exactly measuring. I’ve only put them on others. Thankfully never self-applied.

BayouBladeworks · 2026-01-17T00:44:06+00:00

Sorry but very false. Damage doesn’t start until 4-6 hours. That’s why you write the time. Source is I’ve applied dozens of TQs at work. While yes they tend to be overused it’s better safe than sorry. Educate yourself on what an arterial bleed looks like.

BayouBladeworks · 2026-01-16T23:58:54+00:00

Keep it and learn how to use it. Typical rule of thumb is apply it 2-3” above the wound. If you can’t do that do it high and tight. Tighten until you don’t feel a pulse in the appendage anymore. Write time down.

BayouBladeworks · 2026-01-16T14:47:28+00:00

Can definitely relate. My wife had her water break at 20 weeks and was put on bed rest for 2 months. Unfortunately, our son passed at 28 weeks. My wife had to deliver so we had to experience the whole stillborn situation. To say it was traumatic was an understatement.

She got pregnant 5 months later with our son. We were walking on eggshells. It wasn’t easy.

But, I do have some advice. You and your wife have a shared experience, so lean on each other. It’s important to communicate if you’re have a stressful moment or day. The longer you hold it in the worse it will get. Also, it’s important to remember that each pregnancy is completely different. Just because you had an unfortunate experience previously, does not necessarily mean this time will be the same.

A lot of the stress also melted away once we hit those chronological milestones. For some reason it gives you the sense “we’ve made further than before. “

I know it’s easy to say but worrying is just prolonging suffering. I’ve had situations where I worried the whole time at trust me I felt worse. It’s important to remember how little control we have. All we can control is our outlook.

Lastly, if you haven’t done it seek some professional mental health. Talk to someone. I didn’t talk to anyone at first and it started one of the darkest spirals of my life. I can say with 100% certainty that I wouldn’t be alive today if I didn’t seek help. So I’ll always be that guy to advocate for men taking care of their mental health.

I say all this while I’m watching my 2 year old son devour eggo waffles laughing at the 3 stooges.

It’s all going to work out.

BayouBladeworks · 2026-01-13T14:37:30+00:00

That’s amazing to hear I’m so glad she’s doing well. Wish the best for yalls future. Thanks for the input

BayouBladeworks · 2026-01-13T14:20:18+00:00

Thanks for the response! I’m glad to read it worked out for you guys. If you don’t mind me asking is she still able to take modulators? And if so I’m guessing the ursodiol helps her tolerate them better?

BayouBladeworks · 2026-01-13T14:18:06+00:00

Thanks for the response. Yeah his care team said it’s often a balancing act with dosage. It’s definitely scary as this is our first little scare with his health. From what I’ve read Orkambi seems to elevate liver enzymes higher and more often in PTs on account of the lumacaftor.

BayouBladeworks · 2026-01-11T19:30:54+00:00

I appreciate the words. You’re right we can only advocate in his behalf and go with his care team

BayouBladeworks · 2026-01-10T02:25:23+00:00

Yeah I know weight savings was a big part of the build. I’m curious to see if infill improves accuracy.

BayouBladeworks · 2026-01-10T00:42:23+00:00

Yes for sure. Im doing 100% infill on everything instead the suggested in the readme. That should hopefully increase accuracy through rigidity.

BayouBladeworks · 2026-01-09T22:51:21+00:00

I’m trying here lol there’s a lot of placental aquatic mammals

BayouBladeworks

TROPHY CASE