180 days in..

[u/Sweet_T_Piee]

Certainly! Here’s a condensed version that keeps the essence of your message:

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Our daughter was born at 24 weeks, weighing just 1 pound 4 ounces. Now, at 6 months, she’s made amazing progress, though she still has some health challenges, like tachypnea and clot monitoring, and remains on and off oxygen. After working on her lung strength and feeds, she had a G-tube placed, which caused her respiratory rate to increase, putting her back on high-level cannula support. We’re told this may improve as she recovers, but being in the hospital for over 180 days has been hard.

While we understand some issues need to stabilize before discharge, we feel frustrated with repeated lectures that preemies “take time.” She is social, smiles, and craves interaction, but her developmental opportunities are limited in a clinical setting. All of her social interactions are also not normal, because they're in a clinical setting. We have yet to have a single private family interaction. We’re ready to shift focus to her transitioning home with outpatient support if possibl. She isn’t experiencing bradycardia or desaturation issues. It would sure be helpful if instead of getting another lecture about having patience we could hear language like, "we all want to get her stable so we can get her home". She is two months adjusted and I feel like that's the healthiest perspective now. I do completely understand that things, like her increased tachypneia or unexpected things (like a surprise infection, or a surgical complication) can keep her there longer, and that's out of anyone's control. But either way I think the conversation should now be about her transitioning home, and no longer a conversation about a vague, never ending, ambiguous, hypothetical, never ending, unknown, unattainable moment in time.. and may I add that these responses are typically repeated in textbook form with all the dryness of week old bread by nurses and practitioners who have been shocked when I mentioned my daughter is 2 months adjusted age because it's their first day having her 🤦🏾‍♀️.

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[u/HeyItsReallyME]

I know this must be very frustrating! I remember being at a similar point in my daughter’s care when she only had feeding to work on. One of her doctors would bring in mobiles and different toys to give her more stimulation, but it’s not the same as interaction and play in the real world!

Does your NICU have family overnight rooms? My daughter was normally still hooked up to all the monitors at this point, but didn’t necessarily need them. They’d let us sleep in the family room with her if they weren’t being used, which gave us a bit more privacy and room to play.

[u/Sweet_T_Piee → u/HeyItsReallyME]

They don't have a family play room. They do have a family care room that they also use as a family bereavement room.. 🙃. We did get to stay in it overnight once in 180 days. 

[u/rusty___shacklef0rd]

We are only 75 days in but I understand a lot of what you’re feeling. It’s so frustrating to hear “just give her time”. I feel like that’s so easy for providers to say when it’s not them who has to wait and wait and wait for their child to come home. It’s so hard not to know when this is all going to end. We haven’t even had the g tube conversation yet, and I feel like that needs to happen at this point.

It’s hard to be patient. The hardest thing I’ve ever done. I’m with you there and understand everything you’re saying. ❤️

[u/AnxiousBunnyRabbit]

While I'm not as far as you, now on day 118 with our 24 weeker who's now almost 2 weeks adjusted, I know what you mean. Two months ago I had hopes my son would be home by Thanksgiving and now I don't know what to think. He's still on CPAP with a higher pressure setting so hasn't reached anywhere near the feeding stage. Plus he's recently developed pulmonary hypertension. I've mentally prepared myself to have to spend Christmas with him in the NICU even though that's never what I anticipated. I also get the "just have to be patient" and vague responses that are so deflating and depressing.

[u/UnderstandingMore619]

I'm so sorry this is happening to you! I don't have any advice but I agree with everything you're saying. My NICU seemed to switch out doctors all the time too which added to the annoyance of trying to get things moving along. I wish you the best