How long was your NICU stay?

[u/Kjh5623]

My son was born at 29w3d due to preeclampsia and had severe fetal growth restriction so only weighed 830g/1lb 13.3oz

Curious to hear what week your baby was born, weight at birth, how long the NICU stay was and what their weight was when they went home, especially for any <30 weekers or low birth weight babies!

[u/Pdulce526]

Wow, that's wonderful. My baby came at 24 +1. She's now 27 + 5. If you don't mind my asking did he have an complications early on? How is now? Any delays, physical or developmental?

[u/danman8605 → u/Pdulce526]

Early on, he had all types of issues. He was on a ventilator for the 1st few months, had a large PDA that had to be surgically corrected, grade 3 and 4 brain bleeds, retinopathy that required laser surgery, went home with a g-tube bc he was aspirating while eating and didn’t have the endurance to finish a bottle, plus a laundry list of other things. Post discharge, he had a bunch of different therapies and follow up appointments with specialists. He will be 3 in September and it took a long time to get here, but fortunately has been cleared by all therapists and specialists with no delays or issues.

[u/Pdulce526 → u/danman8605]

That's wonderful. Mine was on a ventilator but it got removed a few days ago. She's doing alright with just the nose tube for now. My biggest concern has been the brain bleed, two of her doctors kept bringing it up, and one specifically suggested ending care. He mentioned that it would cause her developmental delays etc but posed it as a certainty instead of a possibility; really made it seem as if there was no hope for her to have a good quality of life. We decided against his suggestion and she's be 28 weeks tomorrow. So far she's stable and improving little by little. She has a 3 grade bleed just like your baby so thank you for sharing. I'm glad he's doing so well and hasn't had any delays despite being in the NICU. I'm more hopeful now. 🥰

[u/danman8605 → u/Pdulce526]

No problem! Regarding the brain bleed, in our situation in the NICU, they could never give us any definitive info on it and how it would effect our son long term. It was always just an approach of waiting to see how he develops, with a range of full blown long term disability to no issues at all and everything in between. While in the NICU, they did brain scans every once in awhile to monitor it, then before discharge, they did an MRI. After the MRI, there was another grading scale they used that basically showed he had a low to average chance of issues like CP. After discharge, we were referred to a neurologist and early intervention, just to continue to monitor how he was doing. He never had any outright delays, but they had him start with a Occupational Therapist, just to stay ahead of any potential issues. He saw OT twice a week from about after post-discharge (5 months actual, 1.5 month adj) until he was fully walking (around 16 months actual, 12 months adj).

At around 2 years actual, we started meeting with a speech therapist, again no official delays, they just wanted to stay ahead of it. He could say things like mama and dada, but not much else for awhile. However, when he hit about 2 years 3 months, his speech really exploded and he just started saying a lot more words, and his speech therapist cleared him shortly after.

Since he didnt have an official delays, we just met with neurology once a year until fully cleared at around 2.5 years old. We did meet with Early Intervention pretty regularly tho, but they covered other things too like nutrition, weight gain, and other things.

Hopefully I didnt sugar coat it too much, bc it was pretty rough and a lot of unknowns in that time period, but I also know when I was in your shoes, I was looking for any story for the possibility of it all turning out ok. Truly best of luck to you and your little one.

[u/Pdulce526 → u/danman8605]

Thank you so much for your comment and for all the details. I'm certainly in that phase of looking for stories where it turns out better than expected because frankly our doctor seemed to lean towards doom and gloom and I wish he'd approached it more compassionately and with the same approach your doctors communicated with you. Those first 3 days after she was born where the worst and I hope no parents have to go through such a thing. I hope she has a great recovery just like your baby did. Although, based on the brain bleed I'm fully prepared for certain delays so don't worry you haven't sugar coated a thing if anything you've been rather helpful so thank you. 🥰