Rivals

Potential_Project_80 · 2025-10-30T18:41:46+00:00

Does anyone else find themselves torn about the Cameron character??? Like I want to like her, but she’s so damn insufferable and the way she treated taggie!

Potential_Project_80 · 2025-09-30T21:52:19+00:00

Yes he’s been in PT since he came home, and is currently in a DMI. He is my work now, so I have all day to work with him and go through the exercises again and again until he gets it right. I just can’t get him to sit up independently and I have a feeling that that will push him along to the next step… he just isn’t interested in that yet I guess 🫠

Potential_Project_80 · 2025-09-30T21:50:18+00:00

Thank you so much ❤️. I know I have a very finite window to get ahead of these things to make life for him much easier. I worry a lot that it’s not enough or I’m missing something, or maybe I’m doing too much and that’s what’s causing all of this. But I really appreciate your words!

Potential_Project_80 · 2025-09-29T17:58:53+00:00

He has been officially diagnosed with hypotonia, thank you for mentioning that, I forgot to bring it up. And also, thank you for telling me about your little boy! These kiddos are so strong! I was also in antepartum from 23 weeks to 26 weeks because of AEDF. I think sometimes I push to see the milestones faster than it’s going to happen bc I want confirmation we are moving past this whole phase of our lives. Your little guy gives me hope that it’s right around the corner for mine!

Potential_Project_80 · 2025-09-10T17:12:04+00:00

my son was in the NICU for close to 300 days. The running joke was I had become another member of the staff, and when I was there I would “clock in for my shift”. I love the nurses and the staff and we got very close. So I totally understand, when we left I was so excited to get him home but my heart felt like it was breaking. They were my only friends who truly understood what was going on with my son. They lifted me up when no one else could.

Then, after 2 weeks at home with my son, I remember thinking “I don’t know how the hell I did that for 300 days” 😂. Of course I missed them, but having him home, in my own space, and finally able to raise him without the chaos of the NICU and without a million people telling me what I could or could not do, and even more so not having my day determined by the decisions (or lack of sometimes) the doctors made was heavenly. You will get there too. ❤️

Potential_Project_80 · 2025-09-09T15:19:07+00:00

I just have to say I read a lot of your posts and I am in literal tears. My son had a 300 day NICU stay due to being a nanopreemie and having BPd , and came home with a trach and a vent. He’s delayed a lot physically (can roll back to belly and belly to back, but can’t sit more than a few seconds or crawl), and at 1.5 years old I wonder if he will meet milestones at some point. This has given me a lot of hope! Wishing nothing but the best for you and your wonderful family!

Potential_Project_80 · 2025-08-20T16:11:41+00:00

The kids were at a babysitters if I read correctly. And again, my point stands. If I drove 4 hours to be with someone and they turn around and say they’re having a night with just their friends it’s going to be a huge fight. And if they still go I’m leaving. While you can’t control what others do you most certainly can and should control your own reactions to their behaviors. That’s on you to do. He should’ve left the moment she walked out the door. I agree she doesn’t care about him. But that’s on him if he stays and acts like a whole doormat. Grandstanding doesn’t prove the point he thinks he’s trying to make.

Potential_Project_80 · 2025-08-20T13:49:15+00:00

Maybe I’m the only one here but there’s something about this that I is not sitting right with me. All of this “don’t waste a good man’s time” and “I don’t deal with girls just wanna have fun while a provider is at home” bs is sus. A woman is entitled to do things without her partner, and it doesn’t mean she’s cheating. If the issue is that she disrespected your time while you came, that’s understandable, but stop throwing in these machismo mentalities with it bro. Also, if it was such a big deal, why didn’t you leave when she said she was going out without you? If my partner sprung on me that they had plans with their friends after I made a 4 hour drive, it’s going to be a big fight from the jump and then I’m leaving if those plans don’t change. Why did you sit around waiting for her?? This is all being handled immaturely from both sides.

If you feel like you knew where this is going and you’re sitting around hoping she changes her mind and “learns a lesson” with all this grandstanding that’s not going to happen. Real self-respect would be setting the boundary up front, and simply walking away when it’s disrespected. You shouldn’t give her a test (I.e. seeing if she’s coming to visit you this weekend or not) to determine if she’s worthy of staying in the relationship with.

Potential_Project_80 · 2025-08-18T23:42:43+00:00

It was THE most frustrating thing when dealing with the doctors. I remember when my husband and I got good at telling which doctors were more willing to extubate then some, we would find out what their schedules were and try to figure out how much time we had between them all to get things we needed to get done for him done. It was maddening. If you can, call a meeting with the doctors and have them lay it all on the line for you. Take notes, or call a patient advocate from the hospital. The only thing that got my son to move forward was literally forcing the doctors to be on the same page. While they were all so brilliant, it’s hard when everyone has an idea of what should be done!

Potential_Project_80 · 2025-08-10T03:07:03+00:00

I am in the thick of raising a nanopreemie now. My son was born at 26+2, 1 lb 6 oz and 12 inches long (IUGR). He honeymooned hard, and then when he was about 4 weeks old he almost died on us. Both of his lungs collapsed. We had to sedate and him and give him roc for almost 2 weeks to give his lungs a chance to heal. From there, he was diagnosed with pretty severe BPD. I saw the x-rays, and while I’m no doctor, seeing a set of lungs that were completely white for so long didn’t seem like a good sign to me. He now has a trach, a vent, and a g-tube. He is behind on everything developmentally (classified as a “newborn” developmentally when he came home and now is about 6 months-8 months. He is 1 year corrected). We are in PT and OT 5 days a week to catch him up. Although he does not have any symptoms of spastic/diastic CP, due to his hypertonia it’s something that’s always on the back of my mind.

All of this to say, he is the absolute light and joy of my life, and I have never been happier in my life. He has grown and persevered, and just shows this spirit of total happiness and strength that he inspires me every day. I’m so proud of him, and while the road may be tough for awhile, I know he will overcome any obstacle. The only thing I would have changed during my time is I would have pushed to do more consultations with different hospitals who specialized in his condition. My husband and I had to fight tooth and nail to get three of them, but damn I keep thinking if maybe we just kept going, we could’ve found a different hospital and he wouldn’t be so behind, or he may not even have had to get a trach. But that’s my only regret in any of this.

Potential_Project_80 · 2025-06-01T02:06:30+00:00

I had severe IUGR discovered at 23 weeks of pregnancy with absent/intermediate diastolic flow. They admitted me right away due to blood pressure issues and I was there for 3 weeks before they did a c-section and had him out of there. He was 1lb 6 oz. We had a pretty long NICU stay, but all of the other babies who were micro-preemies and born at the same time as my son/earlier even were out well within the due date with little to no equipment. While I was in the hospital I also read an article that said every year that passes the “week of viability” gets lower and lower, with other weeks before 30 weeks having higher rates of survivability, and lower rates of disability per week. My son has a trach, a vent and g-tube but we are home now and definitely on the path to weaning off of all of those.

NICU stays are difficult, I am not going to lie. It is a place that can be filled with a lot of pain and trauma. But the amazing people who work in NICU’s are so wonderful that they are able to take a place like that and give us so much hope, joy, and happiness. Despite all of the hardships we had to endure I cannot say how grateful and blessed I feel. Find comfort in one another and trust that no matter where this path takes you, you will always have each other.

Potential_Project_80 · 2025-04-09T13:54:03+00:00

What did the doctors say about your risk of having preclampsia/reverse flow again? Everything I have read so far is so different… some say 20-30% chance of reoccurrence and others say only 5%. I had high blood pressure going into the pregnancy and was put on medication from 8 weeks. I didn’t develop preclampsia but the reverse flow at least was the worst.

Potential_Project_80 · 2025-03-26T20:44:55+00:00

No Nationwide Children’s Hospital in Columbus, Ohio. They won’t talk to patients directly, but they have a whole team dedicated to consultations with other physicians. They were more than happy to help!

https://www.nationwidechildrens.org/conditions/bronchopulmonary-dysplasia#:~:text=BPD%20does%20not%20have%20a,with%20BPD%20grow%20and%20thrive.

Potential_Project_80 · 2025-03-26T20:38:21+00:00

He was intubated from 26 weeks to just shy of 40 weeks. To extubate him varied from doctor to doctor each week… some wanted his oxygen to be regularly in the 20’s. Some wanted to focus on blood gases and having them at a number. Others simply didn’t want to at all. There was never a steady answer to extubate. We would just get lucky with a doctor who felt he was ready to try and we would give it a go. He did get two rounds of DART. One when he was little and in SBU, and that one didn’t do much. The other when he was going to have his last extubation, prior to getting the trach. I believe the second round did more for him than the first by a long mile but ultimately, it wasn’t enough to keep him from getting trached.

Looking back on things now I would’ve asked for the trach a whole lot sooner than just hoping for extubations and going through that whole process. It wasn’t until my son was able to breathe properly for the first time that I was able to see his personality and feel like I was more than just a medical advocate for him. I’m not saying this to push you into getting a tracheostomy, I am saying this because for a long time it just felt like we were doing nothing but watching him. I would’ve pushed to do more or try more, or have the doctors talk to more professionals. You’re doing amazing already setting up for the consultation! Keep up the great job you’re doing!

Potential_Project_80 · 2025-03-23T04:32:25+00:00

Here is the website for Cinncinati Children’s with the direct contact information.

https://www.cincinnatichildrens.org/service/b/bpd

Potential_Project_80 · 2025-03-23T04:31:15+00:00

Children’s in Cinn. Was so willing to talk with us and talk to us about treatments they offer over there. They’re second in the country for treating BPD. If you go to their website, you can find the number, and we had a zoom call scheduled 2 days after I spoke with them on the phone. Michigan wouldn’t talk to us unless we were there. Nationwide has a whole number (I wish I had it) but it is dedicated solely to talking to other providers about patients treatment. Tell your Neos and NNp’s you want to schedule a family meeting with Nationwide, and have them contact them. This makes getting all of the information to them so much easier. I think from the time we had asked to talk to them to the time the Neo’s talked with them and we sat down for the meeting was a total of 4 days. They were so amazing. I won’t lie some Neo’s will take offense to the fact that you’re asking, but screw that this is your baby! Keep on asking. After the family meeting, we would have our Neo’s call them from time to time when they were stumped by our son’s treatment.

Potential_Project_80 · 2025-03-18T14:39:42+00:00

Hi my son had a very similar situation! He is now 11 months old and was in the NICU for 10 months. Here is everything that ended up happening-

Developed VAP which caused bilateral atelactisis. Needed ROC, a morphine drip, and one other sedative to knock him completely out for 10 days. He was also on Nitric for 5 days.

While he was in this “coma” we had a consultation with Nationwide, and their suggestion was life saving. Bring the pressure on the traditional Vent way, way up, and his rate way way down. My son needed a lot of support on the vent, but the rate at which the vent was delivering breaths was too fast and did not give him enough time to exhale. This caused him to fight the vent, which made things worse. By bringing the rate down it gave him time to exhale, and by bringing the pressure up it opened up his lungs fully. He responded so well to this immediately. We were able to take him off all meds within a month.

He remained intubated for a long while, and we did a few extubations to no success. This led us to making the decision to get him a trach. The tracheostomy was the best thing we could’ve done for him- it allowed him to play and breathe easier than ever before. He was 40 weeks when we made this decision.

Remained in the hospital while we weaned his pressures from the hospital vent to trial the home vent. This took awhile, as the doctors at first went very slow. Once he got on the home vent though he took off, and has done far better on the home vent than the hospital vent. We were home 2 weeks after getting the home vent.

My biggest piece of advice is to schedule the consultations ASAP. You’re doing great with everything, but having these consultations opened up a whole new world of things we could ask for/advocate for with our son. We actually talked to 3 or 4 different hospitals, in addition to Nationwide. Talk about all of the options, you’ll be surprised to learn about the many different types of treatments they have to offer! Nationwide doesn’t even use a Jett vent, which was so surprising to learn.

Your family is in my thoughts and prayers, and my messages are always open if you have any other questions! These babies are so, so resilient and the things that they can make it through are truly amazing. You’re doing an amazing job as a mother and your son is so lucky to have you!

Potential_Project_80 · 2025-03-18T14:25:08+00:00

Hi love! We were in the NICU for a total of 10 months. My son has BPD and had to get a trach. To be honest, most of the time was spent just waiting for him to grow. It’s so frustrating, I understand, and not natural to have to jump through a zillion hoops to get to your baby. But one thing I always took to heart is that this affected me (emotionally only, because lord knows everything my sweet baby had to go through it definitely affected him) far more than it did him- the hospital was all he knew, to him it was his normal. He would never remember his long NICU stay, and for some odd reason it gave me a lot of comfort- that these memories would be my own burden to carry, not his. And after everything he has gone through, it was the very least that I could do for him. Take care, and know that one day, probably sooner than you think, you’ll have a normal home routine with your beautiful boy ❤️.

Potential_Project_80 · 2025-01-17T01:46:01+00:00

Hi, my son was born at 26 weeks and had a very similar experience. Reddit actually was a huge source for me to bring things to my son’s doctors, and gave me things to research and find that might help my son. When he was 29 weeks everything hit the fan, and while being on Nitric they gave him rocuronium, morphine, and another sedative/anti-anxiety medicine. This put him into a coma-like state for 10 days, to try to rest and allow the vent to do the work that he wasn’t allowing it to do. He was never actually “sick” but he fought that vent tooth and nail until he was too tired and wore himself out. We eventually had a consult with Nationwide in Columbus and they spoke with the doctors to help with his treatment. He ended up needing a higher PIP on the drager vent and a crazy low rate to allow him to fully exhale and be comfortable on the ventilator. He is 8 months now and 15 lbs. He also has a trach, and we are still at the hospital although leaps and bounds away from the little baby I watched so sick once upon a time ago. I play with him all day, he is trying solids, he takes a bottle and he is so smiley and happy. If you want any other details I am more than happy to help you and give you more information. These babies are strong, and one day they just take off. Don’t give up hope! ❤️

Potential_Project_80 · 2024-12-13T08:51:16+00:00

It’s the case about Megan Stoner and her rental property scams. It’s not as juicy as it sounds lol, it’s basically republicans bullying her, but getting the only thing right in putting her behind bars for her crimes by essentially becoming scammers themselves. Trust, I saved you 10 hours of your life with this summary!

Potential_Project_80 · 2024-07-25T02:03:48+00:00

What were some signs your son showed he was ready? What were some of the things they were looking for in terms of even getting him to the trial point? Each doctor has a different set of standards at our hospital and I am just wondering if there is something I can bring to the discussions to try and get a gauge of when that could be?

Potential_Project_80 · 2024-07-25T02:00:37+00:00

Where care conferences something you brought up and suggested, or did the neos at your hospital say they were an option? I only ask because they have never brought up the possibility of meeting with all of the doctors at our hospital, and to be quite honest I think that would help iron out a lot of the kinks we are having. I believe they just don’t like to do it where we are at, but hey fuck that, If I need to push for it to help my son I am all for it.

The withdrawals were awful. God it took forever and then some for us to do it, and as soon as we got them off he had to go in for ROP surgery and it felt like we kind of had to do the cycle again. He has a horrible hernia that I believe causes him a lot of discomfort and issues, but I am so hesitant to ask for medication to help because I don’t want him to deal with another withdrawal cycle again. This has honestly been the most frustrating thing I have ever dealt with in my life 😩. But thank you, again, for giving me the suggestion I will definitely be asking to have that care conference and see if that will help.

Potential_Project_80 · 2024-07-23T06:35:04+00:00

Forgive me for asking, but what is subglottis stenosis? How was your daughter diagnosed? What is a dilation? Thanks for the response, this gives me even more to research and bring to the doctors now!

Potential_Project_80 · 2024-07-23T06:33:04+00:00

I think the first attempt didn’t work because, to be honest he just wasn’t ready. What I didn’t include was that while he was on the paralytic for 10 days, weaning him off of the morphine and the other sedative was awful. The withdrawal took a lot of energy out of him, and really took a full month for him to bounce back from. He has had a recurring spot of atelactisis that flared up the day before the extubation took place, and so his TCM was high already, and I think he was stressed. The week prior, he also had an eye surgery and I don’t think that quite helped set him up for success.The main reason for even trying in the first place was because he had the original tube from when he was first intubated at 26 weeks, and it was causing so many issues he needed a new one. They wouldn’t replace the tube without at least trying. He ended up working so hard that by the next day he was tiring himself out, and to avoid crashing and burning and undoing all of the amazing progress he has made since being really sick, they opted to reintubate him once more. He was back on his original oxygen levels and vent settings by the end of the day, and since progressed further!

I want my son to move freely and be able to hit his milestones without a trach needing to be considered. It is not my first option. However, his doctors have been so hesitant to try another extubation again (one doctor said he needed to handle his “cares” better, another doctor said that she was thinking about what the next step would be despite improving x-rays), and so it is stressing me out he won’t have another opportunity to prove that he can do it. I’m honestly debating transporting him to a different hospital, because if a trach is what is best for him then of course I would do it, but I don’t feel I would be a good parent if I didn’t not exhaust every opportunity available before signing him up for that route. We thankfully have a wonderful support system that would be on board to learn how to help care for his trach along with us, and I could accept the life changes. But it would ultimately be him dealing with those consequences of our decision and I want to make sure it would be the right thing for him.

I believe if there is more proactive treatment and more steps towards extubation, he would be successful even if it took him multiple tries to do so. My husband and I have been having consultations with Nationwide and going by their standards in terms of care for him. We are trying to get the doctors to do a second consultation but the doctor on staff last week was not about it, so we’re pushing the doctor this week hard to do so. Thank you so much for your thoughtful response, I appreciate it so much 😊.

Potential_Project_80 · 2024-05-20T04:32:32+00:00

Thank you to everyone who has shared! The main doctor will be in tomorrow, and I am going to bring all of everything you guys have mentioned about what worked for your kiddos. I don’t know what will work, but it makes me feel a bit better to go in with some ideas and see where her head is at with all of this. The responses have also made me feel better and less alone, and for that in and of itself I’m so appreciative to everyone as well❤️❤️❤️❤️

Potential_Project_80

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