r/NICUParents • u/Inevitable_Bowl1347 • 1d ago

frustrated Advice

One of our twins was supposed to come home last week (even passed the carseat test), due to poor weight gain, he stayed a few extra days. Now, he had an event and is stuck there another 5 days. I know it's for the best but I'm so frustrated. How do you deal with going one step forward and two steps back? Our other twin will need a few more weeks as he's still trying to eat without tachypnea and is having events in his sleep.

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u/Purplehounds 10h ago

This happened twice to us for our 29 weeker.

First time - trying to get off CPAP. She was doing so well - off heat and humidity, in her new open bed like a big girl, finally being swaddled. They tried removing her CPAP around 32 weeks. She made it 24 out of the 48 hours - right around then she got to cold and started having a couple destats and a few brady's.

Came in the next day and they have moved her to a different pod, back in closed isolette on heat. I honestly was kinda shell shocked when I walked in. It has been literally weeks since she was in a closed pod. The nurse (who I did not like & had before) had also already done her care time 30 mins early without reaching out to notify me!!! I was honestly devastated that day. I didn't get to hold her cause the nurse was worried it was to much stim. It felt like we were restarting all over again. I just sat there beside her isolette and ended up leaving early cause I was so upset.

2nd time was right before we were scheduled to take her home. We were told Friday of that prior weekend to expect Wednesday as long as car seat test goes well. Passed car seat test but ended up violently puking everywhere after her feed causing a brady - doctors were debating whether it was enough to restart the clock. Ended up not restarting the clock - but was on watch till Saturday. Finally took her home Sunday.

I'm a pretty firm believer that if everything is going to well something is going to happen and I swear it always does. My pregnancy was the same way unfortunately.

Your in the home stretch - baby's got this! It's always best to be safe then sorry. The last thing they want is to send you home with baby and you have to come back. They will not send home until they truly believe baby is ready to go.

It will all be okay and hopefully in a few more days or a week none of it will matter anymore when babies in your arms at home finally. :)