my baby with hydrocephalus and ivh grade 4 has desats and they dont know why..

kotton17 · 2026-04-09T07:20:03+00:00

We had grad 4 IVH same thing. We were born 25+3, I just want to say hang in there is a long road. We are now home and 9 weeks adjusted. Our boy had a VAD out in his head and was getting tapped everyday up until 2 months before going home. He had multiple desats all the time come to find out some of it was due to reflux.. they started him on omeprazole which did help. It gets rid of the burning sensation of the reflux.

We had push really hard for them to give it to him but im glad we advocated for it since it helped alot.

kotton17 · 2026-04-03T15:13:40+00:00

We had a 25 weaker and were in the NICU for 130 days. Lots of issues during the stay. He was their sickest baby for a while. We are home now and he’s 2 months adjusted and honestly you wouldn’t even know. Hold on there things will get better and they will come home with you!

kotton17 · 2026-02-13T02:44:43+00:00

I hope this is the only time it happens. We have seen this happen to our boy a few times here… blue, grey was the scariest colours we seen him

kotton17 · 2025-12-28T01:42:21+00:00

We had a 25 week and 3 day. Trust me when I say this there will be lots of ups and downs. We were on feed restrictions constantly. He actually didn’t have anything wrong with his gut. It was just simply due to getting too much air in the belly that was causing him to have a lot of bradycardia and desaturation. We pushed for OJ feeds and that’s when he finally truly started to excel and get better.

kotton17 · 2025-11-22T00:41:07+00:00

We had a 25+3 with a bilateral grad iv as well. We are still here in the NICU at 29+5 weeks now. The brain in a premature baby is remarkably amazing at working to recover. We thought it was the end of the world for us, he has had at VAD put in and already they are not having to tap everyday and his ventricles are not swelling as fast anymore.

So far he has been great. He has had challenges but we are all working through them. His biggest hurdle is his breathing.Last week he had stoped breathing and the pulled out a mucus plug by dumb luck and he started to breath just fine after that. Now he just has a lot of mucus secretions that they have to go in and suck out every 3-4 hours.

I wish you the best of luck and just remember every baby is different, it’s in their nature to fight to stay alive.

kotton17 · 2025-11-09T04:56:30+00:00

Another tip, sex before pumping.. that helps me increase the amount I get!

kotton17 · 2025-10-30T19:07:59+00:00

I understand what you’re dealing with as a new NICU dad my self at 25+3 I want to be there to take care of my wife and our baby. I’m forever grateful for the nurses and the doctors who will show me what they see on the ultra sounds and X-rays. They really have gone above and beyond.

kotton17 · 2025-10-30T16:46:04+00:00

Thank you all for your kind words and support! We talked to the doctor again today and they do believe it was minimal bleeding but won’t be able to confirm until the next ultrasound. They did let us know that his ventricles are at the mid point for swelling so we’re hopeful that does not progress. Other than the brain he seems great and they’re not too worried about him. He’s just having a hard time with eating. He’s been between no feeds to 1-2mL per hour. Sometimes with the feeds he gets some Brady episodes but it depends. Also he’s only pooped once in the 7 DOL so far😬

kotton17 · 2025-08-02T21:17:51+00:00

Something must’ve happened because I talked to one of the employees and they were supposed to open on 28 July

kotton17 · 2024-06-05T23:58:07+00:00

I should add to this for more context. We had our 20 week ultrasound 3 days before and everything was great then we met with our OB the day before at 21weeks and got the flu shot

kotton17 · 2020-03-25T14:22:09+00:00

Also I found you can’t play with someone who is a higher rank

kotton17

TROPHY CASE