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@whit1979 I wish I had something more encouraging to say, but I think at this point in my daughter’s journey we just so desperately wanted to see her responding and improving. Eventually it became clear to us that she wasn’t ever going to “catch up.” I’ve made some other posts about her, feel...

@dahager3049 We’ll have to stay in touch then. It’s hard to find info on brain stem injury. What gestation was your baby born at?

@dahager3049 No one has really said! I think it’s still too early to say, so we’re just trying to give her every possible chance at a good life. Everyone says both here and in our NICU that baby brains can do amazing things. I hope you and your baby have better days ahead. ❤️

@hugan I love these stories! Thank you!

@jacob1996 I didn’t think the drink tasted very bad. Is it the one hour screening or the three hour test you’re doing?

@hunterlovesjesus99 I did some snooping and we’re not at the same hospital (ours is a level 3 NICU) but we are in the same bump group! We must have had the first two December due date babies. ❤️ I think I will ask the social worker for my baby to not have him as her doctor again. One benefit of...

@ponmolid I didn’t measure first and I really should have 😂 the delivery guys had to take it apart to get it down the hallway

@ponmolid It’s a really nice piece of furniture, and the seat is very wide and comfy, but so is the rest of it! It takes up so much more space than I realized

@aniska My in laws gave us the Pottery Barn glider and a half and it's HUGE

@chisza777 This is so helpful. Thank you so much for sharing. I think my girl does better when we hold her too. She’s been on an EEG for a week and they won’t let me hold her, so that’s also been really tough and I think is contributing to our overall mood.

@katrina2017 Thank you ❤️❤️❤️ I just went through all her PT notes and they all say that she’s increasing her purposeful movements and getting more alert. I just feel like this one doctor is gaslighting me in a way…. Thank you for sharing about your sweet baby. I’m so glad he’s doing so well!

@jordanconnect Thank you ❤️ It feels good to hear that we need to continue advocating for her and fighting for her. I think our fear is the possibility that we keep pushing her after it’s far too late and she’s been in unnecessary pain, but I just can’t imagine we’re there yet. I asked her...

@jordanconnect Just her myoclonus and she may have some delays in tracking with her eyes/responding to stimuli. However, she DOES respond and she is improving with time. This doctor just said he hasn’t seen it. 🙄 We asked the social worker today if he could be removed from her case and she said...

@anonymousln She actually had an MRI a couple weeks ago and it was normal for her gestational age. This doctor thinks she might have a brain stem injury that’s too small to see on MRI.

@patti1950 We’re watching a movie as we speak ❤️ doing something unrelated to the NICU in the evenings is one of my recommendations for new NICU parents and it’s good to remind myself of that too!

@patti1950 Thank you for your story and kind words. ❤️ I know everything won’t be perfect. She’s at risk for so many developmental problems. I just want her to be able to love and be loved. As long as she’s still fighting, I will too.

@jsw3883 It’s so awful. I have seen so many stories about babies beating the odds and I just want that to be us.

@jsw3883 She has a different doctor starting tomorrow thank goodness. This one was pushing for extubation just a little over a week ago. We will for sure be asking lots of questions.

We are on week 10 of my 24 weeker’s NICU stay. Her course has been complicated by a difficult resuscitation at birth requiring 26 minutes of chest compressions, and then seizures starting a week after her birth. Recently, the team came to the conclusion that her spasms are not seizures, but...

@taylors I used a long C shaped pregnancy pillow but I used it more like a U shape-- tucked it between my legs and had it up along my front and side to support me. I never roll over anymore because the pillow keeps me in place.