boys failed their car test
They failed on Saturday, each had one episode during the test but the dr was going to send them home anyway with apnea monitors. We roomed in on Sunday night and the monitors went off about 5 times for apnea or HR issues (I'm not counting the times it went off for leeds). The dr on sunday was willing to send them home saying the monitors would let them know if there was any big issues, but that we would be doing the same things the nurses did there.
The dr on monday said she wanted to keep them there, #1 because they failed the car seat tes, #2 because the monitors went off 5 times at night. She said she is fine if I want them there clear of episodes for 5 days. She's going to redo the car test in a few days. Another nurse said they normally tell you to call the pedi if the monitor alarm goes off and go to the ER for episodes, so she was surprised that the even talked about sending us home. I really feel like it all depends on who is working!
I really like both drs, they are very different though. I am not comfortable with them coming home if they failed the car test. After a night with the monitors I'm comfortable with those, all but one time the boys recovered on their own. The one time Colin didn't he was eating, so I was right there and stimulated him.
So my questions is this, what is a kind/effective way to request they stay if they have episodes during the seat test and we have the more forgiving dr (who releases them early)? I asked what to do if it happens while I'm driving and the staff said I shouldn't be going many places right now anyway (we were all joking about it, I don't think they thought I was serious).
Re: boys failed their car test
Hmm. Well, I don't like when they aren't on the same page. That seems to be pretty common! I see that their GA is still 36 weeks. I know you want them home, but it's better if they stay until they're less frequent. However, you should prepare yourself for what happens if they don't outgrow episodes as quickly as you expect/they make it sound. I wish someone had told me how very long they can go on - it isn't common but it isn't uncommon either. DS was on a monitor for four months *after* discharge. I feel they sent him home too quickly - he passed his test, but was still having 1-2/day (bradys mainly). When I got him home he was going off all the time and I just thought it was normal - you know, he'll grow out of it. Well, turns out it wasn't and he had to be readmitted. Five is a LOT for one night - with or without stim. From our two NICUs I've understood a couple a day is 'normal'/acceptable to be home, but I'm not sure if this was a combined amount for the twins.
Bottom line, if it were me going back in time, I would push for a longer stay. DS passed his ph probe because he was still too little at discharge, but a few weeks later when readmitted he failed and was diagnosed with silent reflux.
Hope that helps!
Oh, and they probably weren't joking. You don't really get out much when you're hooked to a monitor...at least not in the beginning when they're still so so little.
That's what I'm saying, I don't want them to come home yet. How do I push for a longer stay if the more lenient dr wants to send them home regardless of failing the car seat test? I know if I say I'm nervous she'll say everyone's nervous. I don't have the guts to flat out disagree with a dr and tell her I'm not taking my babies if they're not passing at least the car seat test.
And they were joking about the alarm in the car. No, I won't be going many places but when I do they suggested taking a yardstick to poke the babies if the alarm rings.
I'm pretty sure they were just trying to make me feel better about being nervous.
I would not bring them home. Our nicu had a 5 day rule on brady/apnea spells. You could not be discharged until the baby was 5 days free of spells. This included self recovering ones or when eating. Our nicu's general rule was that babies did not go home on monitors unless they were discharged on oxygen or had other issues. This meant longer stays but I think babies were really ready when they went home. We were in the nicu for about 2 weeks waiting to clear the 5 day rule. Our nicu was pretty conservative with lots of things and did not start bottle feeds until 34/35 weeks.
As for the car seat have they talked about car beds? It was fairly common for babies to fail the car seat test but pass in a car bed and be discharged in that. Something to consider although I don't know how that would work with 2 babies and an older sibling.
Good Luck I hope you are home soon.
First, what PP said about the carbed is something to look into. Each NICU differs on A/B rules, but ours was 5 days episode-free unless they were being discharged on a monitor. Then, the rule was to have them "controlled." He was having 1 every 12-24 hours, but when I got home he had about seven that night...then the following days it ranged from 15-20 with a few needing stim and turning colors. That's why we went back to the ER but another story for another time.
How are your nurses? They're usually your biggest advocate so I'd be a bug in their ear that you're freaking out - or don't talk to that neo. Ask for another one because you want another opinion. I didn't have neo issues but I know several women here did...don't know how to handle that
Just push, push, push.
SweetSugarMomma, I do believe you've changed your name!
I would also push for your nurses. If you don't feel comfortable telling the doctors you aren't ready, tell the nurses. And REALLY tell them.
But don't forget, you're the advocate. If you are nervous, you have every right to be. They are preemies. They've been in the hospital for a while.
Ugh I know how hard this is for you. My second DD failed her car seat test twice, the first time I really think she was not ready, but the second time the nurse her could not get the car seat level (DH and I were pissed, talked to the dr and they re-test her the following day and she passed). C was still having desats in the hospital and they weren't to concerned. She only had one B where she had to be stim'ed and the others were during feeding. She's been home for five weeks now with no monitors and we really haven't had any problems (although we have no monitors to tell us if she is really having problems.
If your not comfortable taking them home then I would just tell the doctors. Ask if you can give them a few more days without any episodes. Good luck Mama!
This was my experience also. Our NICU had the same rules and were steadfast. Car beds were mentioned in the event they did not pass the carseat test. Thankfully they passed the seat test. I hope they will be absolutely ready to come home soon! HUGS