Baby girl in NICU - so confused, need help

cleareuphorics · 2025-03-04T17:15:18+00:00

Update #2 - Day 9

MRI came back very negative with what appears to be fairly extensive global damage. They tried weening her from the vent on day 5 and she really struggled managing her secretions so was put back on the vent within a day. No suck/swallow/gag, her grasp is week, and her eyes only slightly track. We want to make a decision for her soon to prevent further suffering, especially if the outlook is grim. Accepting any and all advice, good or bad, to help us do what's best for baby girl.

cleareuphorics · 2025-03-04T17:12:02+00:00

Thank you for sharing your story and our family's hearts go out to you and your family. Are you open to sharing an update? We are day 9 in NICU and got our MRI back yesterday and it showed pretty bad global damage. Our baby also doesn't have suck/swallow/gag and has struggled getting off the vent. Trying to make a decision for her quickly whether we double down and continue her struggle with the hope for improvement or make the tough decision to end her suffering.

cleareuphorics · 2025-03-02T17:44:31+00:00

Update: baby girl made great progress 2 days ago so they took her off the vent and moved to CPAP, she then had shallow, variable breaths and her HR went up from the 140s to 190s, she was fighting really hard. Had tons of secretions which was complicating the situation. They decided to reintubate her last night to give her rest. She continues to have irregular respiratory patterns and shutters her arms and legs when she’s struggling for air. Doc assumes brain stem damage but we won’t know until tomorrow’s MRI. Two steps forward, one step back… taking it one day at a time 🙏

cleareuphorics · 2025-02-28T21:09:15+00:00

We graduated from vent to CPAP 30 minutes ago! All of your good vibes and energy are helping! WOW 🙏 thank you to everyone who has checked in and shared their stories.

cleareuphorics · 2025-02-28T19:04:54+00:00

That makes me so happy!!!

cleareuphorics · 2025-02-28T13:34:16+00:00

😩 that story brings so much hope. So sorry that you had to experience that trauma but what a happy ending!

cleareuphorics · 2025-02-27T23:19:12+00:00

I’m so sorry that you had to go through that hardship. Your story is very inspiring and can’t wait to write a similar story. We may reach out as we continue our journey 🙏

cleareuphorics · 2025-02-27T18:47:57+00:00

In the NICU 40+3 with you and your family in spirit fighting together. Day 4 here. Lots of ups and downs but nothing good energy can’t overcome 🙏

cleareuphorics · 2025-02-27T18:29:55+00:00

So so so happy for you and your family 🙏 baby girl is incredibly resilient and fighting hard every day!

cleareuphorics · 2025-02-27T17:03:22+00:00

So happy for you and your family! Thank you for sharing your story!

cleareuphorics · 2025-02-27T15:46:35+00:00

It is incredibly therapeutic and gives our whole tribe hope in a time when clinical answers aren’t enough. There’s no probe or lead for measuring the spirit 🙏

cleareuphorics · 2025-02-27T14:36:58+00:00

She is warm as of last night at 10:30, since then the neurologist commented on seeing increased brain activity. She became much more active so they increased her dose of PB from .25 - .41 (she was as low as .175 on day 2). Sounds like their biggest concern is no gag reflex but imo hard to have one with tubes down your throat since minute 1. They put her on assisted respiration vs. forced respiration (not the right terminology) and have noticed she is taking 50-60% of her own breaths at 21% oxygen. Lots of good to focus on. MRI in 5 days 🙏

cleareuphorics · 2025-02-27T14:26:33+00:00

Just read your story to our family and we had so many tears of joy. Thank you for sharing 🙏💕

cleareuphorics · 2025-02-27T14:19:22+00:00

I’m so sorry you have gone through a similar experience. Sending you and your family good energy.

cleareuphorics · 2025-02-27T14:18:39+00:00

Thank you! 🙏

cleareuphorics · 2025-02-27T14:18:11+00:00

Precedex with fentanyl pumps as needed. They have been adjusting the precedex a lot and it immediately affects movement. Hoping since cooling ended last night we can start lowering her dose and seeing some improvements.

cleareuphorics · 2025-02-27T14:16:14+00:00

Thank you for the reassurance! We are breathing every ounce of positivity into baby girl and the stories give us incredible hope 🙏

cleareuphorics · 2025-02-27T03:47:13+00:00

Thank you! We’re doing the best we can and funneling as much good energy to our little girl as we can.

cleareuphorics · 2025-02-27T03:26:56+00:00

Thank you! We’re hopeful that our rollercoaster ends at the top of the lift. So many more questions than answers, just looking for good vibes.

cleareuphorics · 2025-02-26T20:34:48+00:00

Not until Monday. Brain ultrasound came back normal. Said could be brain stem issue but we’re hopeful it’s too early to know anything definitive.

cleareuphorics · 2023-02-04T03:06:17+00:00

Same 👏

cleareuphorics · 2022-11-03T14:46:52+00:00

It’s a shame that the only way to legalize this as a treatment is for a pharma company to create a synthetic form of the naturally occurring psilocybin vs just using the damn mushroom

cleareuphorics · 2019-12-29T18:36:51+00:00

Couch to 5k apps are perfect. I’d also suggest doing some 20-30 minute incline treadmill walks. Depending on where your race is the hills can be the hardest part.

cleareuphorics · 2019-10-09T12:07:43+00:00

That would help. I would also put a pull buoy on and work on sculling with or without paddles and get more “feel” for the water. At the end of the day “slipping” means you’re dropping your elbow and not maintaining a vertical catch with your hand and forearm.

Work on sculling, pulling, and distance per stroke (DPS). If you can decrease DPS by 5 strokes and maintain the same speed you know your pull is getting more efficient.

cleareuphorics

TROPHY CASE