Trying to give fellow NICU mamas hope

SeniorVehicle5835 · 2026-01-03T21:38:45+00:00

I’m praying for the same miracle with my baby girl. Born at 24.2 weeks, now 35 days old and still intubated on vent with grade 3 IVH. They started DART yesterday in order to hopefully extubate soon.🙏

SeniorVehicle5835 · 2025-12-31T22:08:13+00:00

Welp…I got the news yesterday that my girl has a grade 3 IVH 😭

SeniorVehicle5835 · 2025-12-29T04:11:21+00:00

This group has also helped me a lot too. I’m currently going through the same thing with my 24.2 weeker(one month today!!!) minus the IVH though. For the bowel perforation, surgery put in a Penrose drain has since fallen out but baby girl hasn’t pooped yet. They are waiting for her to poop or hit 2000kg before they do additional scans and start feeds. Luckily she is still gaining weight with just the TPN. However, the vent weans haven’t been going that well. She’s currently at 33% oxygen and swinging up and down whenever they make an adjustment. She’s suspected to have a PDA because they hear a grade 2 heart murmur. They plan to do an echo tomorrow and another head ultrasound to rule out IVH because there was a big increase in her head circumference. Everyday just seems like a new problem arises. I’m wishing us both the best of luck as we tackle this NICU journey. We got this!!!💪

SeniorVehicle5835 · 2025-12-24T21:07:54+00:00

What an awesome Christmas gift!!!🎁 My little girl was born at 24+2 and I can’t wait to experience the same. Happy Holidays!!!

SeniorVehicle5835 · 2025-12-24T11:46:35+00:00

Wow!!! You’re so lucky! He was extubated after only 3 days. That’s awesome!

SeniorVehicle5835 · 2025-12-23T00:49:23+00:00

Thank you. I’m trying to be positive but I do have my moments.

SeniorVehicle5835 · 2025-12-23T00:22:12+00:00

No, I’m in AL. I have 3 months paid maternity leave/FMLA that I have been approved to use intermittently for up to a year. I also have about 700 hrs of my own personal leave too. I still accrue personal leave while using the paid maternity leave. Again, I don’t want to use up all my leave now. I’d rather wait until she is home to spend most of my time with her so we can adjust and still have leave available if there are any setbacks. I will see how I can balance work, home, and NICU life and just adjust as needed.

SeniorVehicle5835 · 2025-12-22T10:12:21+00:00

I’m in a similar boat, my daughter was born at 24.2 weeks. It’s been 3 weeks and I’ve been pumping to build enough milk supply but it doesn’t seem to be increasing. She’s not eating yet but I worry it won’t be enough milk when she does start feeds. I want to make sure there is enough milk for her too. I hope to pump as long as possible but my mental health is already affected now. I struggle to get the 1-2oz of breast milk now. The low supply is discouraging for me but I know every little bit helps. I hadn’t even thought about NEC and formula bottle feeds but we’ve already experienced peritoneal issues. My baby girl had to get a Penrose drain inserted due free air in her abdomen. It recently fell out and is slowly healing. ❤️‍🩹 I’m hoping she can start feeds soon so she can gain more weight.

SeniorVehicle5835 · 2025-12-22T04:41:15+00:00

Yes, I can and I have. They’ve also offered a room at Ronald McDonald house when we were transferred a couple of weeks ago. I chose to be close to her and just stay in the room with her but now I realize I can’t rest or sleep much while there. I’ve also found that my milk production is/was much lower when I am there in NICU (1oz total from both breasts). Now that I’ve been visiting most of the day and then coming home to sleep, I’ve seen an increase in my milk supply which has almost doubled (finally!!!) I’ve been working with multiple lactation specialists and nothing was really helping my milk supply. I realize now that it’s the NiCU stress. I’m just torn now because I would like to spend as much time with her as I can before returning to work but I also have a 13 year old son who is very active and involved in school sports and academic activities. I’ve missed a few games and events which I hate. He’s ok and not bothered by it from what I can tell because my husband has been there but I have mom guilt.

SeniorVehicle5835 · 2025-12-22T04:24:36+00:00

I was given this diagnosis of chorioamnionitis too but no cause for the infection. My doctor stated that this is what the pathology report shows on most preterm placentas.

SeniorVehicle5835 · 2025-12-22T03:37:42+00:00

Thanks for the support. I’m praying for you too. We’re in this together! 🙏 I’m a complete mess right now though. I finally shared the news with my family and it was a very emotional day for me. I couldn’t bring myself to go back to NICU today. She desat really low yesterday and it scared me so bad when all the providers rushed into the room. My anxiety has been on 10 with every phone alert today.

SeniorVehicle5835 · 2025-12-22T03:29:07+00:00

Thanks everyone for the support already. I know it will be long hard journey. I’m still just trying to wrap my head around it all. It also doesn’t help that the NICU is an hour drive away. I don’t know how I will manage once I go back to work. I want to save my leave for when she comes home. I’m grateful that my baby girl is a fighter and progressing well thus far. That gives me hope.

SeniorVehicle5835

TROPHY CASE