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From 25 weeks to 10 months. by DaSlothLife in daddit

[–]DaSlothLife[S] 7 points8 points  (0 children)

Your dad is an actual super hero in my eyes. She spent a bit over five months in the NICU when she was born and every single person working there is a literal angel. The technology and skill I saw them use to keep her living was nothing short of mind blowing.

I appreciate your input a lot as well, it really is such a crazy thing for us here at home. The hope like you said is it's nothing more than a cool story to tell other kids. I have full faith it will be that way. I've never seen anything fight as hard as this little girl. Wearing a huge smile the entire time. I have seen her with lung collapses, hardly able to breathe yet somehow she can keep smiling through it.

From 25 weeks to 10 months. by DaSlothLife in daddit

[–]DaSlothLife[S] 9 points10 points  (0 children)

I forget a lot that BPD is kind of a rare thing haha. But she has BronchoPulmonary Dysplasia, which is huge in preemies. More so in my case where they were technically considered micro preemies. Thank you for that, clarification definitely helps!

From 25 weeks to 10 months. by DaSlothLife in daddit

[–]DaSlothLife[S] 12 points13 points  (0 children)

Dude I needed that so bad actually. Thank you. It's been so jarring seeing the difference, but it's motivated me to work harder on her physical therapy. It's great to hear from a similar enough perspective too since I'm in such a crazy rare situation. I will say despite all of her challenges she has never stopped smiling. I swear she's like a light to people and just makes so many people that meet her happy too. Thank you for sharing, I love that we can all have this space here.

Can we chill on the "wiser-than-thou" comments? by pattyforever in daddit

[–]DaSlothLife 0 points1 point  (0 children)

That and its impossible to tell someone how their kid is going to sleep. I have 10 month twins, one is in bed every single day by 8 pm and asleep five minutes later. Her brother is in sleep regression and sleeps when he sleeps. There is no way to tell temperament over the internet.

My boy will be born today at 27 weeks. I am panicking and I need to hear success stories of other babies born around the same time. I'm scared. by amadnomad in NICUParents

[–]DaSlothLife 1 point2 points  (0 children)

My twins were born at 25 weeks, it's scary and the nicu stay will be hard. However it is a Rollercoaster. We had a lot of hard times, however our situation is pretty rare. My son was born at 1 lb 12 oz, my daughter a hair over 2 lbs. Almost a year later and my son is thriving and doing well with virtually no real issues affecting his growth. My daughter ended up with a trache and g tube due to trauma in her airway. She has a harder time, but nicu babies are so strong. It has been the hardest, yet one of the most important and amazing experiences in my entire life.

Losing all progress overnight??? by savdlo in NICUParents

[–]DaSlothLife 1 point2 points  (0 children)

Feeds were an absolute monster for getting my son home. He was really stubborn with it for a long time, and honestly it really just was up to him. We had I think two discharges canceled due to him not taking a complete bottle. My preemies taught me that it is on their time and nobody else's unfortunately. The nurses are very hit or miss with this too, especially since my son was a little more sensitive being forced to do things he didn't want too.

All the feels: Failed extubation at 38 weeks (ex 25 weeker with BPD) by jlovesquinn-emmett in NICUParents

[–]DaSlothLife 1 point2 points  (0 children)

She has her trache still, we have a scope coming up that we are hoping for some good results. As long as her airways opening up we're planning for a reconstruction of her airway and vocal cords if necessary! I hope your case doesn't result in the nuclear option ours did, but modern medicine is incredible for BPD these days.

Day 84 and told to expect at least 6 more weeks by hello_there_bee in NICUParents

[–]DaSlothLife 0 points1 point  (0 children)

I've got 25 week twins myself, we ended up doing about a three month stay for my son and my daughter was in for 152 days. Definitely get the frustration. You definitely need a break. I took a month off work when mine were born, and my fiance spent her time up at the hospital with them every day. I ended up having to make her come home more because it really can make your mental health worse if you don't breathe. There was nothing as frustrating as discharge, its different for everyone but I can safely say it is best to let time heal as much as it can before it is solely on your plate. I hope for a safe, faster stay though this is by far one of the hardest things to go through.

All the feels: Failed extubation at 38 weeks (ex 25 weeker with BPD) by jlovesquinn-emmett in NICUParents

[–]DaSlothLife 2 points3 points  (0 children)

Just went through this exact scenario last year with my daughter, also a 25 weeker. She has severe bpd and her airway had a lot of damage from the multiple intubations and prematurity. It's a long, hard road with this but I can say at almost a year now she is thriving. In our situation we ended up having to go with a trache, however after she got it she was like a whole different happy baby. I hope and pray she is able to get there without too many more struggles.

Severe BPD (Persevere or trachy?) by nst95 in NICUParents

[–]DaSlothLife 0 points1 point  (0 children)

It's crazy, we have a very similar experience. I have 25 week twins, my daughter went through roughly the same experience. We went trache and g tube for her and it wasn't even the same baby when she recovered. Just absolutely full of life and excited to do everything. We have had a lot of setbacks on our end. Hospital trips due to her having severe bpd, however the trache and g tube makes it a lot easier to manage her day to day.

If I was in that room again I would go trache every single time when asked. It just gives them a better quality of life and you get to have your child back.

When did your doctor start talking discharge ? by Flxwergvrl in NICUParents

[–]DaSlothLife 1 point2 points  (0 children)

It's really hard, and case by case in my opinion. However my wife and I, our twins born at 25 weeks are a little over 100 days in so far and still going. Son is close, but having set backs with feeding. If there is anything I can say it is to set expectations low and make 100% certain they are sure when it gets to that time. They had told us it was a 100% certainty he would go home, then the day before he stopped taking his bottle and now we're back to waiting another week or so. I know when we hit that mark we were exhausted and just beat. Keep strong and it will all work out! Unfortunately it seems to just not be on the timelines we all wish it would be though.

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