I'll give you a little background. The boys were all on caffeine beginning right after they were born. The caffeine basically acts as you would expect - to keep them going, very similar to adults drinking coffee in the morning. It was a little reminder for their heart to keep beating, their lungs to keep breathing and all other body functions to continue working as they should. From what I understand, the caffeine is pretty much standard for a preemie NICU baby. As the boys grew, their dosages of caffeine got proportionally bigger as well. Once it was determined by the nursing staff and doctors that the babies' systems were mature enough, they would begin weaning the caffeine until it was no longer needed at all. Although some babies are still on caffeine once they go home from the NICU, my babies were all off before they got discharged. As part of the NICU protocol, they want the babies to be off caffeine for at least a week for observation before leaving the hospital. Stokes, unfortunately, was not off caffeine for an entire week before he got discharged. Because of that, we had to get him set up on a home monitor. The purpose of the home monitor is so that we will be made aware if he has any bradychardia episodes (heart rate slowing down or speeding up beyond set limits) or apnea (not breathing).
The NICU worked with a home healthcare company to get the monitor set up for us. The company sent a rep to the hospital to bring the monitor and to train us on how to use it. This appointment was set after Ryan was already at home, so I was unable to go to the training, since kids are not allowed in the NICU (even kids that have literally been discharged for 1 day). So Thomas and MaSha went and got trained on how the monitor works. MaSha took great notes and the two of them were able to get me up to speed.
There are 2 stickers that attach to Stokes' skin under his arms. The stickers connect to leads that plug into the monitor. You have to make sure you turn the monitor on and off before removing the leads from the monitor cable. If you don't, the alarm will sound and trust me when I tell you that it's loud.
Stokes with his stickers and leads
There are numerical limits set for both heart rate and breathing. I believe the low end of the heart rate limit is 80 beats per minute, so if Stokes' heart slows down to 80 bpm or lower, the monitor will go off. Same thing if it starts beating too fast, although that hasn't been an issue for us. The apnea alarm will sound if he hasn't taken a breath for 15 or 20 seconds (I'm not sure which). When the alarm goes off, it is a loud beeping noise. It will only continue while the episode is happening and will stop once the problem has been fixed. For example, if Stokes' heart rate drops for say 10 seconds, the alarm will sound for 10 seconds and then once his heart is beating normally again, the alarm will stop.
The monitor has a bunch of different lights and the lights will light up depending on what's going on. If we're not in the room and the alarm goes off, we can tell what is happening by looking at the monitor panel and checking to see which light is on. There is a light for heart rate drop, heart rate going too fast, apnea, or just a disconnection with the leads. We simply press the reset button after an episode to reset the lights and start over.
The monitor panel next to the crib where we keep it
When Stokes does set off his alarm, it's almost always a heart rate drop (brady) or a disconnection. Sometimes the stickers fall off his skin and we wouldn't know since he's wearing his clothes or pajamas. If the sticker does fall off, the alarm would go off and we would see the disconnection light and would know to check his stickers or make sure the leads are plugged in all the way and the cord leading in to the monitor isn't loose. When Stokes bradys, he corrects it himself without us having to intervene. What I mean by that, is that if his alarm goes off in the middle of the night, I spring out of bed and start off towards the nursery and before I even get to his room (very close to my room), the monitor has stopped beeping and his heart rate is back at a normal pace. I check the monitor lights to confirm that it was a brady, reset the monitor and go back to sleep. If by chance he didn't correct his heart rate drop on his own, which has happened once or twice since he's been home, I would just have to pick him up and vigorously pat his back to wake him up and remind his heart to start beating again. This probably sounds scary, and it is, but we got used to it with all 3 of them in the NICU when it happened fairly frequently, especially when they were first born.
Lately when his alarm goes off, he usually has spit up. From talking to my pediatrician, his bradys may be reflux induced. Poor guy. The alarm has actually been going off less now that he's on Zantac to treat the reflux.
Per our neonatologist's suggestion, we really only hook Stokes up to his monitor at night or when we aren't in the same room with him (on occasion). So really, he's only hooked up at night. The theory is that if we're with him during the day, we will be able to tell if something is wrong. He would start turning blue and we would be able to key in on it and begin the back patting and stimulation. He seems to do well during the day and a few times when we've forgotten to turn the monitor on at night he has made it through just fine.
Once a month a rep from the monitor company will come over and download his results from the monitor. They, in turn, send the download to our pulmonologist who can read the results and make an assessment. The pulmonologist will get in touch with the pediatrician to keep them up to speed and I will get a call from the pediatrician's office to let me know what's going on. Supposedly when the download is being assessed, the doctor or whomever is reading it can tell if it was a true episode and the severity, or a case of a disconnected lead or other non-serious occurrence. According to last month's results, Stokes had 50 heart rate drops and a few minor apnea spells. I was very surprised to hear the number 50. That is almost twice per day. Hmmm...that does not seem right to me. Yes, it did go off some, but we weren't running in there constantly to check on him and reset the monitor. I told the nurse on the phone that the number seemed rather high to me. Regardless of whether the number 50 is accurate or not, they felt he had too many episodes to take him off his monitor and wanted him to stay on it another month and reassess. I am OK with that because I would rather be safe than sorry. The monitor is only really a very minor inconvenience and it's definitely one I'm willing to deal with for the safety of my son. That being said, I'm not totally convinced that his monitor is really "needed". It hasn't been going off very often and when it does, he self-corrects before I get a chance or even need to intervene. I am more than happy to cooperate based on what the doctors say though. We got another download late last week and the results should be in the process of getting analyzed so we can see if he did better this month and if the monitor can come off.
Food for thought...all newborns have immature body systems, even if they are full term, and it's common for them to have irregular breathing patterns. Healthy, full term babies are not put on monitors, but I can't help but wonder...if they were, would they set their alarms off and self-correct? The same goes for Ryan and William. Since they're not wearing monitors, we will never know. Literally, the only difference between Stokes and his brothers is that he was on caffeine a little longer than they were. Anyway, he's doing great and I have confidence in him that he will be just fine in the long run. We will wait to see what the most recent download results are and I'll keep you updated as to whether he has to stay on for another month or whether we can kiss the monitor goodbye!
Keep up the good work Peery Family! We love you all so much!
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