Monday, November 21, 2011
My son, Zach, was born at 26w and 3d gestation. From the beginning, we had a very easy ride. He was on the ventilator for a few days, and then moved to the CPAP for several weeks. He went back and forth between the CPAP and high-flow nasal canula as his impending discharge approached. Then, it came time for his room-air trial about 2 weeks before he was sent home.
Apparently, our insurance company wouldn’t allow our son to go home on oxygen without trying to breathe room air first. The nurses and doctors were setting the stage that we’d end up having to come home with Zach on oxygen for a short time, but then he surprised everyone. He did great on his room air trial. He’d always had a lot of apnea and brady episodes, and putting him on room air didn’t seem to affect that. By that point, he was only have an occasional apnea or brady, and, since he wasn’t requiring any stimulation from them, our NICU was prepared to send us home without them being fully resolved.
After a week or so, it became apparent that Zach was going to need at least some oxygen support. His weight had leveled off, and the staff thought it was because he was working too hard to eat and wasn’t getting enough oxygen. So, we were sent home with oxygen only with feeds (I had major emotional issues with him going home on oxygen at all, so oxygen with feeds became the compromise). All babies that go home on oxygen are also sent home with an apnea / brady monitor.
In Zach’s first month home, he had 38 events, none of which required stimulation. He hadn’t had a stim event for many weeks before discharge. He remained on the monitor for a total of about 5 months (until 4 months after his due date). At first, it was hard, but it got much easier.
Looking back, there are a few things I wish I would have known:
Here’s the scene from Office Space, if you’ve never seen it:
Apparently, our insurance company wouldn’t allow our son to go home on oxygen without trying to breathe room air first. The nurses and doctors were setting the stage that we’d end up having to come home with Zach on oxygen for a short time, but then he surprised everyone. He did great on his room air trial. He’d always had a lot of apnea and brady episodes, and putting him on room air didn’t seem to affect that. By that point, he was only have an occasional apnea or brady, and, since he wasn’t requiring any stimulation from them, our NICU was prepared to send us home without them being fully resolved.
After a week or so, it became apparent that Zach was going to need at least some oxygen support. His weight had leveled off, and the staff thought it was because he was working too hard to eat and wasn’t getting enough oxygen. So, we were sent home with oxygen only with feeds (I had major emotional issues with him going home on oxygen at all, so oxygen with feeds became the compromise). All babies that go home on oxygen are also sent home with an apnea / brady monitor.
In Zach’s first month home, he had 38 events, none of which required stimulation. He hadn’t had a stim event for many weeks before discharge. He remained on the monitor for a total of about 5 months (until 4 months after his due date). At first, it was hard, but it got much easier.
Looking back, there are a few things I wish I would have known:
- Don’t compare your experience to that of others. My son had a TON of bradies in the NICU. That was his “thing,” but he never had any serious complications. Overall, we were very fortunate that our baby born at 26 weeks never had any complications (and I always knew that), but it was still hard not to compare him to other preemies who were on monitors for just a short time.
- Be patient. That’s so hard to do, but it’s true. Someday, it will all be a memory. My son is almost 10 months old now, and the apnea monitor is just a memory at this point.
- Be assertive. My son NICU time was at a different hospital than the NICU that managed his monitor. The NICU where my son was born was very progressive with just about everything (they wouldn’t have sent us home with a monitor at all if he hadn’t required the oxygen, even though he was still having bradies), but the NICU that monitored his monitor was much more old-school. We were very aggressive about trying to get our son of the monitor because we truly felt he didn’t need it. After the first month, he would only have an episode every week or so, which is about what you’d expect in a term baby. When our monitoring NICU gave us the option to take our son off the monitor at 4 months corrected, we jumped on it.
- Figure out a way to make the monitor work with your lifestyle. When our son was on the monitor 24x7, we basically just stayed in the living room all day. It was also flu season (he came home at the beginning of April), so we were quarantined regardless. We did take him for occasional walks, which helped, but, with learning to breastfeed and adjusting to being home with our baby, we were fine staying home. After the first month or so, we were allowed to only have our son attached to the monitor while he was sleeping – he could be off of it if we were watching him. Even then, though, we kept him on it most of the time. Why not? It gave us peace of mind.
- Check in with your husband on how he feels. My husband loved the monitor. LOVED IT. He felt that it gave him so much peace of mind to know that our son was still breathing when he was out of our sight. I, on the other hand, was always ready to let it go. Maybe I was just in denial of the situation, but, regardless, getting on the same page with my husband was important.
- Be ready to let it go. Someday, you’re going to have to let the monitor go. It’s scary, and many parents are like my husband in that they like the peace of mind the monitor brings. If you feel that you need the monitor longer, ask for an extension. But, in some ways, you’re just delaying the inevitable. If you KNOW your child is ready to give up the monitor, try to take the leap.
- Hydrocortisone helps with rashes caused by the leads. My son developed a rash from his leads, and I wish I’d asked his pediatrician about it sooner. Hydrocortisone would have helped more if I’d started it sooner. I also should have used the lead belt sometimes to give my son’s skin a break. We usually kept the leads on 24x7, even when he wasn’t hooked up to the monitor. I should have figured out sooner how to give him a break.
- Change the leads frequently, and don’t feel guilty about it. The medical device company couldn’t understand why we were going through so many leads, but it was because we were changing them every day. My son got a bath every day, and we always changed his leads when he got a bath. If he had old leads, they’d have all sorts of false alarms. It’s not worth your sanity to try to save money by reusing old non-sticky leads. Don’t feel bad about requesting more, and don’t take no for an answer from the medical device company.
- Save an extra set of leads for your baby’s baby book or memory box. I grabbed a set before we sent the monitor back, and I’m glad we did. It’s a part of the experience, and, while it wasn’t a happy memory, it was still a part of the story of my little guy’s early days.
- CELEBRATE when you finally get to give that thing back. You know that scene in office space where they smash the printer? I always envisioned doing it to the apnea monitor. I didn’t, of course, but I fantasized about it all the time. I just had a beer instead.
Here’s the scene from Office Space, if you’ve never seen it:
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