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@meetz Hey! 27+1 weeker dad on day 63. So first off, welcome to the worst club ever. I’m sorry you have to go through this. Second, Brady’s and desats never get easier to tolerate but eventually they do get better as your baby grows and develops. You are right they are terrifying to watch...

@eline Aspiration on feeds can be catastrophic. Reflux and feeding issues is 100% worth staying over. I know lt sucks but they do know what they are doing. ❤️

@worship7 That’s actually a good idea. Thank you 🙏 didn’t think about as a person to contact. ❤️

@iza Thanks friend. ❤️

@iza ❤️ There are two attending groups at our hospital, I’ve requested a consult with the other group if they deny it, patient advocacy is my next step. The other group cared for her for months untill she was moved to the long term breathing unit. Everyone has given up and it crushes me to...

@iza No worries friend ❤️ She was taking full bottles at one point before her breathing regressed. So we know she can do it, which makes this so hard. We are at 220 and this is the only reason we are thinking about giving in, just to leave. Our LO is a chonk. Started at 550g and is now over...

@eline I say this in love, due dates mean nothing. You need to be prepared to leave when your LO is ready, not when you are. It sucks but it’s not always straight line to discharge.

@thetravisludwig Appreciate it ❤️

@thetravisludwig No idea, we’ve got a meeting with the attending about it but they have expressed this isn’t a negotiation. So they are holding my daughter hostage. They’ve been zero help feeding. OT/PT/medical team just keeps telling us do put her sideline and she’ll get it. No one can think...

@vikuteee9 Hey momma! We are on day 138 of our 550g miracle. She was born at 27+1 and is now 47. We still aren’t home yet. So I totally get you. You aren’t alone. Your feelings are super normal. Please go home. Or if you can’t go home, go to something like a Ronald McDonald house. There is...

@kingdomconnections Intubation is a big deal,I think people don’t do proper risk assent on it, and intubation with chemo. Wow ❤️ nothing but love for you and your family.

@ahmed360 No worries. I’ll just block you.

@ahmed360 Politely get lost from my thread. This isn’t helpful.

@miriamjcross Hey hey! Dad on Day 175 here. I had to go back to work around day 90. Gotta carry the insurance to pay for it all. It sucks. Might I advise that your wife spending every second there might be part of this issue. Since she is never home, you two can’t spend time connecting over...

@austinmiles89 Thanks! Why on earth this sub downvotes people trying to avoid surgury is beyond me but I appreciate the support ❤️

@ahmed360 While I appreciate your input, it is giving up. Admitting defeat, we lost. We can’t feed her without 1 more risky medical intervention. It’s a failure of us, the hospital, and the medical establishment that we can’t fix this without punching a hole in the stomach of a child. This...

@austinmiles89 Thanks! Why on earth this sub downvotes people trying to avoid surgury is beyond me but I appreciate the support ❤️

@fleurrobson Your love and compassion can be read with every word you wrote ❤️ In the 10 days we’ve moved through the stages of grief and are planning the GTube procedure when she is a little stronger on cannula. Thank you for responding even days later.

@archhumanmichael Not losing hope for the child, losing hope in her not being subjected to another risky intubation due to our hospital abandoning us in our feeding journey.

@jwgu Appreciate the input🙏, OT is confident this isn’t a swallow issue, she’s put down a few huge bottles and OT thinks she can swallow fine. We thought it was a breathing stamina issue but it’s all turned sideways the last 2 days. ❤️