When will my worries and stress fade????
Pumpkinface19
member
Landon has been home since Nov. 10th. He is on a monitor and has had two downloads. the first one came back with 29 episodes in the first three weeks that the doctors say are abnormal. The second download was two weeks of data and had 12 episodes. My due date was 12/15 and they say most babies will have outgrown their A's and B's by their due date, but he is going to need more time. Since the last download the alarm has been going off more often the ever, and is making me crazy! They are downloading again on monday to check it out, but the doctor said the dreaded words RSV to me the other day because of the increased apnea. Now I am watching him and listening to him and completely on edge that he is going to get sick. When does the worrying calm down? When will I be able to just enjoy him and not be so nervous?
Just when you start to think you are making progress and are feeling more calm....SOMETHING seems to come along and bring back the stress and worry!
Re: When will my worries and stress fade????
My son was on an apnea monitor until 4 months after his due date. I had hoped he'd be off of it by his due date, but I was told that they don't actually outgrow apnea of prematurity until 4 months adjusted age. I'm a little surprised your doctor mentioned RSV - is he sick in any other way?
Is your son being followed by some sort of NICU follow up clinic or other preemie specialist? Do you feel like your doctor has a lot of experience with preemies? Are you sure that the increased episodes are "real" episodes and not just loose leads? They should be able to tell when they download the data. It might be that the leads are more of a problem now that your son is older and moving more. How often do you change them? We had to change them every day or we'd get a ton of false alarms. Does he actually seem to be struggling to breathe when you look at him during an alarm?
I'm sorry you're going through this. Honestly, I don't think the worry ever completely goes away. I still worry - i think a part of it is just being a mommy now...
Thank you so much for your response! It was the doctor from the NICU apnea program that dropped the RSV bomb. He seems fine aside from some thick boogies in his nose that I thought were normal, and he didn't have those until today. I think she just jumped the gun when I called due to the cluster episodes, but now I have yet another worry in my head.
We aren't sure if this week's episodes are real or not....this morning he had three in a row and my husband saw him breathing during the third, so we are HOPING they are loose leads. We have to change his leads all day long because he is moving so much! During some of the alarms he is in a deep sleep and looks pale, but I have never seen him really struggle. In the last download there was an instance when it was a false alarm.
When did they know it was time for your son to come off the monitor? Or did they just wait for the four months?
We were just like Sushi - four months. While it's true that most babies 'grow out of' A's and B's by their DD some babies need much longer. I wish they'd also told me that.
I'm sorry you're going through this - it's stressful, but hang in there!
For us, it was a combination of the number of episodes he had and us just being ready to be done with the monitor. After his due date (maybe a month or so), he started only having 3 or so per month. In his 4th month adjusted age, he still had 3 episodes. Given the low number of episodes, the clinic gave us the option to discontinue the monitor. We took it.
The NICU where my son stayed was different than the NICU that managed his monitor. The NICU where he stayed believed that babies didn't really need monitors if they have occasional episodes, as long as they don't require stimulation to pull themselves out of them. The NICU that monitored him felt that babies should have monitors even if the episodes don't requires stimulation, and they were much more concerned with keeping him on the monitor for a specific amount of time (until 4 months after his due date). I actually agreed more with the philosophy of the NICU where my son stayed, though. Even term babies may have apnea episodes, but they just aren't monitored. My view is that, as long as the babies are consistently pulling themselves out of the episodes, they may not be monitored.
Urban has a bit of a different story, though. Her son was requiring a bunch of stimulation to get out of his episodes. He ended up being readmitted for 8 more days as a result. It turned out he had silent reflux that was causing his episodes. She can give more details on that if you page her.
I can't remember when it did- I just remember one day being like "Oh! I haven't checked on her 11 times during her nap today!"
It's pretty gradual and I think it varies based on your baby's experience and your personality. For me, our dr. let us keep S on the monitor at night for 6 weeks after we were told she didn't need it anymore because I was so scared. And she hadn't had any episodes in weeks!